[Congressional Record (Bound Edition), Volume 147 (2001), Part 9]
[House]
[Pages 12742-12755]
[From the U.S. Government Publishing Office, www.gpo.gov]



                                HIV/AIDS

  The SPEAKER pro tempore (Mr. Rehberg). Under the Speaker's announced 
policy of January 3, 2001, the gentlewoman from North Carolina (Mrs. 
Clayton) is recognized for 60 minutes as the designee of the minority 
leader.
  Mrs. CLAYTON. Mr. Speaker, oftentimes we act on perceptions rather

[[Page 12743]]

than reality, and when we discuss HIV and AIDS, indeed that has been 
one based on perception. Oftentimes we have felt, those of us who live 
in the rural South, have felt that AIDS was an issue of the North. 
Those of us who lived in small towns felt it was an issue of the big 
cities. Heterosexual persons thought this was only an issue for gays or 
that it was indeed white male gays. What we are finding is that those 
perceptions were ill-founded, and that the disease has affected all 
phases of the United States, particularly the South.
  HIV/AIDS is becoming more prevalent in rural areas and in the South. 
AIDS cases in rural areas represent only about 5 percent of all 
reported HIV cases in 1995. Only 5 percent. However, the pattern of HIV 
infection suggests that the epidemic is spreading in rural areas 
throughout the United States. HIV in the rural South is growing at one 
of the fastest rates in the Nation. The Southeast as a whole has the 
highest number of those infected. The southern region of the United 
States accounts for the largest proportion; that is, 34 percent, 34 
percent of 641,886 AIDS cases. The latest figures we have is for 1997, 
and 54 percent of the 56,689 cases are among persons residing in rural 
areas.
  However, according to a Boston Globe article, which I include for the 
Record, according to this article it references that in six Southern 
States, including my State, North Carolina, and South Carolina, 
Georgia, Alabama, and Mississippi as well as Louisiana, 70 percent of 
those with HIV are African American, and 25 percent are women, 
according to a Duke University study.
  But more importantly, here is what it says. Both of these figures are 
higher than the national average, but few are saying anything about it, 
keeping the disease nearly invisible as it spreads. It is a deadly, 
silent disease. It is the silence that worries many of the AIDS 
activists who are fearful that as the silence continues, the government 
will not know that they have a problem.
  The text of the article is as follows:

                 [From the Boston Globe, June 1, 2001]

                      In the South, Deadly Silence


    shame and fear contribute to rapid spread of hiv in rural areas

                           (By John Donnelly)

       Scotland Neck, NC.--In the short, grim history of AIDS, 
     this rural town surrounded by cotton and tobacco fields would 
     probably go unnoticed. The virus hasn't killed people here in 
     great numbers, as it has in Africa, nor has it devastated a 
     whole sector of the population, as it did to gay men in the 
     cities of America in the 1980s.
       But as observers reflect on the two decades since the first 
     public mention of a disease that was later named Acquired 
     Immune Deficiency Syndrome, the overarching reality is that 
     the virus has stealthily managed to infect roughly 60 million 
     people all over the world, including here on Roanoke Street, 
     inside the four-room house of the Davis family, in the person 
     of one Jeff Davis.
       And that remains, largely, a secret here.
       ``I keep it pretty quiet,'' said Davis, 26, his skinny 6-
     foot-3 frame sprawled out over a worn-out sofa as his mother 
     hovered nearby. ``I'm not sure people would like being around 
     people like me. If they find out I'm HIV-positive and their 
     reaction was bad, I don't think I could take it.'' HIV in the 
     rural South is growing at one of the fastest rates in the 
     nation. The Southeast, as a whole, has the highest numbers of 
     those infected. In six Southern states--North Carolina, South 
     Carolina, Georgia, Alabama, Mississippi, and Louisiana--70 
     percent of those with HIV are African-American and 25 percent 
     are women, a Duke University study found. Both figures are 
     higher than national averages.
       But few say anything, keeping the disease nearly invisible 
     as it spreads. It is this silence that worries many AIDS 
     activists, who are fearful that as the US government grapples 
     with the out-of-control pandemic in parts of sub-Saharan 
     Africa, it will neglect the increasingly costly programs to 
     treat infected citizens at home. In at least a dozen states, 
     there are waiting lists of people infected with HIV who want 
     to get the drugs.
       At home, the Bush administration's initial position has 
     been to put a lid on treatment funds. It has proposed no 
     increase next year for the $1.8 billion Ryan White Care Act, 
     which pays for AIDS cocktails for Americans not covered by 
     Medicaid or other insurance programs. Abroad, the 
     administration has put $200 million in additional HIV money 
     into a newly created Global AIDS and Health Fund, a sum 
     belittled by many advocates as a trivial response to a 
     problem that Secretary of State Colin L. Powell calls a war 
     without equal. ``It's our responsibility as a world leader to 
     fight AIDS at home and around the world,'' said Ernest C. 
     Hopkins, director of federal affairs for the San Francisco 
     AIDS Foundation. ``Furthermore, the crime of someone in rural 
     North Carolina not getting treatment is far more egregious 
     than the reality of that happening in sub-Saharan Africa, 
     where countries spend a few dollars per capita on health 
     care. This is an incredibly resourced nation, and yet there 
     are people here who are basically being written off.''
       In the past 20 years, AIDS has killed 438,795 people in 
     America, 23 million worldwide. In the United States, an 
     estimated 1 million people are now infected with HIV or have 
     full-blown AIDS, but only about a third of them are receiving 
     treatment. The federal Centers for Disease Control and 
     Prevention estimates that another third of a million have 
     been diagnosed but either aren't medically eligible for 
     treatment or can't pay for it, while the remaining third 
     don't know they are infected or refuse to be tested.
       AIDS has remained largely an urban epidemic in America, but 
     infection rates have been rising rapidly in rural areas. 
     Interstate highways act like spigots that flush the disease 
     deep into the back country. Sex workers set up shop along the 
     highways. And from rural Southern towns, as elsewhere, people 
     like Davis travel to neon-bedecked bars or strip joints 
     located near interstate highway ramps, pay for sex, and bring 
     the virus back home. Some, like Duke public health specialist 
     Kathryn Whetten-Goldstein, ``see echoes of Africa in HIV in 
     the South,'' because of the barriers to care as well as the 
     way the virus is increasingly transmitted through 
     heterosexual contact. In the rural South, about 45 percent of 
     women with HIV were infected by having sex with infected men, 
     compared with 15 percent nationally; in Africa, as much as 80 
     percent of the transmission is heterosexual.
       ``When you think about the epidemics being similar,'' said 
     CDC epidemiologist Amy Lansky, ``in the rural areas, 
     particularly in the South, there is a lot more transmission 
     occurring through heterosexual contact than you see as a 
     nation as a whole.''
       It is an outrage, in Whetten-Goldstein's thinking, because 
     heterosexual transmission carries far less of a stigma than 
     homosexual transmission. And yet, few talk about it, which 
     she believes is rooted in racism.
       ``If the rates of heterosexual transmission were as high in 
     middle-class white women and men as they are among African-
     American men and women, policymakers and power holders would 
     be terrified and acting quickly,'' she said.
       But Whetten-Goldstein believes the similarities between the 
     rural South and Africa go deeper than the mode of 
     transmission.
       ``There's a great stigma here attached to the disease, a 
     sense of fatalism that it doesn't matter what they do and the 
     great distances people have to travel to see a doctor,'' she 
     said.
       In both Africa and the rural South, a lack of education 
     about how the virus is spread has allowed it to flourish. In 
     North Carolina, for instance, state law forbids schools to 
     teach that condoms can help prevent the spread of AIDS; 
     teachers can only talk about abstinence.
       And like many places in Africa, the stigma of living with 
     HIV/AIDS is reinforced by attitudes of some fundamentalist 
     Christians. Here, many fervently believe that God is 
     punishing those with AIDS for their sins.
       One woman in rural North Carolina who would be identified 
     only as Sylvia said she travels 180 miles to see an AIDS 
     doctor three times a month, even though there is an AIDS 
     specialist 40 miles away. ``If you go to the local doctor, 
     everyone knows you have HIV,'' said Sylvia, a local PTA 
     president and a Cub Scout den mother.
       ``It's a modern-day leprosy here,'' said Dr. Mario G. 
     Fiorilli, the only AIDS doctor in Halifax County in 
     northeastern North Carolina. The great differences between 
     the United States and Africa, of course, are that 
     antiretroviral AIDS drugs are widely available here. But 
     availability of drugs does not always guarantee access, and 
     flat-funding of the Ryan White Care Act would mean that many 
     newly infected Americans will be denied drugs, advocates say.
       In interviews with several dozen AIDS caseworkers and 
     patients in rural areas of North Carolina, many said that 
     potentially thousands of people refuse to get tested for HIV, 
     while others fail to adhere to the daily regimen of pills for 
     a variety of reasons, including painful side effects. ``I 
     have friends--and I don't agree with them--who are sleeping 
     around with it,'' said a man who asked to be identified only 
     as J-Ray, a now-celibate drag queen who adheres to the strict 
     drug regimen. ``They're just spreading it. That's what's 
     going on here. You have people who are either too scared to 
     get tested, or find they have it and basically don't care at 
     all. They're just angry.''
       Like many interviewed, J-Ray did tell family members he had 
     the disease. ``My mother hugged me,'' he said. My father 
     looked at me, and said, ``Do you have life insurance?''
       Beamon Vann's family reacted by kicking him out of the 
     house. For 14 months, with no independent source of income, 
     he lived in a leaky aluminum box 6 feet high and 8 feet wide 
     behind his family's three-bedroom house, allowed in only 
     twice a week for showers. His mother handed him meals out

[[Page 12744]]

     the back door. She gave him a metal bucket for a toilet.
       ``It was because of her ignorance, her faith, her feeling 
     that the disease was God's punishment,'' said Vann, 41, in 
     his new three-room home, staring at a game of solitaire, 
     three aces showing.
       Vann, who is gay, began to weep. ``The first words out of 
     my mother's mouth were, `I told you God would get you one day 
     for what you've been doing.'' ' Vann's caseworker is Terry 
     Mardis, who is retired from the Army after 26 years in the 
     special forces. He carried out secret missions in Vietnam, 
     Nicaragua, and Panama. It's natural for him to use war 
     metaphors in describing his work with AIDS patients.
       ``Are we making a dent? No,'' said Mardis, 53, who works 
     for the Tri County Community Health Center in Newton Grove. 
     ``I doubt it very seriously. People are afraid to get 
     tested.''
       On the road one day recently, in between visits to clients 
     dozens of miles apart, Mardis said poverty often interferes 
     with treatment. ``I have one woman whose daughter takes money 
     from her. She has Social Security, which pays her bills and 
     her phone, barely. Then family members run up $600, $700 in 
     phone bills,'' Mardis said.
       ``We're concerned about her'' staying on her medication, he 
     added. ``You're fighting a war here--on several fronts,'' 
     Mardis said. ``You have families working against you. You've 
     got communities working against you. I go and ask some 
     businesses for donations to help those with AIDS, and they 
     look at you like you're strange. Their idea of a crisis is 
     the Red Cross helping you if you're burned out, not if you 
     have AIDS.''
       In Halifax County, HIV case manager Kathy W. Knight has 
     worked hard to get African-American ministers to fight the 
     stigma of the disease. ``People won't change their attitudes 
     until it comes from the pulpit. If it doesn't come from the 
     pulpit, it ain't the truth. If ministers think they can get 
     it from eating at McDonald's, which is what one told us, then 
     we're still going to have trouble here.''
       Few say a kind word. One who won't is Bishop Moses Williams 
     Jr., pastor of the Love of God Church of Christ. ``These 
     diseases come upon people because they are not obeying the 
     work of God,'' he said waiting in line at a Roanoke Rapids 
     pharmacy checkout.
       Jeff Davis, who believes he contracted HIV one night when 
     he had sex with a stripper in Roanoke Rapids, just off 
     interstate 95, is responding well to his combination of 
     antiretroviral drugs. His weight rebounded to 164 pounds, 
     from 142, but he is wary because his health has gone up and 
     down before. ``There was a time when Jeff was falling away to 
     nothing,'' said his father, Perry Lee Davis, 68. ``I felt 
     like then just as I did when he was a small child. We all 
     love him. How would I feel as a father if I turned my back on 
     him because he has HIV? I would be less than a father.''
       Jeff Davis, sitting on his father's bed, listened to him. 
     ``I read my Bible every day,'' he said softly. ``I'm back in 
     church. It's made me better. I think everyone in there knows 
     about me. But no one says anything.''

  Mr. Speaker, tomorrow we will be offering an amendment to make sure 
that sufficient food goes to those persons in Africa who are suffering 
from the AIDS pandemic and their children and families who are taking 
care of them.
  But if we do not recognize here in the United States, and 
particularly in the South, that we have this disease, it is unlikely we 
will get additional funds. In fact, when we look at the budget, the 
Ryan White Care Act, which pays for AIDS cocktails, is maintained about 
where it was.
  The Globe article further says that in the rural South, about 45 
percent of women with HIV/AIDS are infected by having sex with infected 
men, again breaking one of the perceptions we have that heterosexual 
persons will not be subject to it. But, indeed, the infection rate is 
15 percent above what it is nationally. The spread of AIDS in Africa is 
being spread through heterosexual transmission of the disease rather 
than homosexual. In fact, women and children are the ones who are most 
infected.
  Again, one doctor in this area, and they are referencing North 
Carolina and referencing Halifax County, which is in my district, this 
doctor says, Dr. Fiorilli, the only AIDS doctor in Halifax County, 
``This is like a modern day leprosy, no one wants to claim or talk 
about it.''
  Mr. Speaker, the big difference between the United States and Africa 
are that the medications we have are more available here, but 
availability of drugs does not guarantee access because there are 
people failing to take the test to find out whether they are eligible, 
and then there are people who are failing to follow their prescription.
  In interviews many said that potentially thousands of people refuse 
to get tested for HIV, and one person states she travels 180 miles to 
get treated twice a month when she could travel 40 miles and be 
treated, but everyone knows her in her area. This person is president 
of the PTA and very active as a leader, and so the culture of the area 
does not allow her to seek out medical care, and in some instances not 
even to tell their own family members. We have a problem in the 
Southeast and in those six States.
  The number of new AIDS cases in the United States began to decline in 
the mid-1990s, but actually the rate went up in the South. While 
everybody else was kind of dealing with the problem and acknowledging 
that we had a problem, actually it went up. Particularly we find this 
happening in the South among black women as well as with children. It 
is true there are still more males than females, but the growth rate 
for women is extremely high in that area.
  Mr. Speaker, from 1981 to 1999, 26,522 black women developed AIDS in 
11 States of the former Confederacy. In Mississippi and in North 
Carolina, statistics show that more black women than white men have 
contracted HIV.
  By region of the United States, AIDS incidence increased in all 
regions from 1994, with the most dramatic increases in the South. In 
1996, however, AIDS incidence dropped in the Midwest, dropped in the 
West and the Northeast, and just began to level off a little bit in the 
South.
  Now, again back to North Carolina, the HIV epidemic continues in 
North Carolina. Rates of infection continue to grow among adolescents 
and among women, with heterosexual contact as their primary mode of 
transmission. The minority population is disproportionately affected by 
the AIDS epidemic in all risk groups. The geographic distribution of 
cases for HIV/AIDS and bacterial STDs indicate the high correlation of 
STDs, which is sexually transmitted disease, and as a predictor of the 
risk of AIDS.
  Mr. Speaker, this chart shows that persons living with HIV and AIDS, 
and this was as of the end of last year, the percentage by gender, 68.4 
percent are male; 31.6 percent are females. And then when you begin to 
look at the ethnicity of it, 72.4 percent are African American or 
blacks; 23.9 percent are white non-Hispanic; 1.9 percent are Hispanic, 
and the Hispanic population is growing in our State, so that increase 
is in some way related to the growth. You see the proportion, that 
indeed it is growing.
  Of the 20,525 individuals reported through December 2000, 10,329 have 
been reported with AIDS, including 8,189 adult adolescent males, 2,013 
adult adolescent females, and 127 children.
  According to figures from last year, North Carolina ranked 23rd among 
50 States, including the District of Columbia, in terms of the number 
of AIDS cases. Most North Carolina HIV disease reports highlight the 
male population, African Americans 72 percent, falling within the age 
group between 30 and 39. Thirty and thirty-nine are our most active, 
productive citizens. This is the time when people are forming families 
and building careers. This is the time when people ought to be the most 
productive in their community; but at this time we are finding within 
the age group 30 to 39, 72 percent are African Americans.

                              {time}  2030

  In the First Congressional District as well as in eastern North 
Carolina, including the third district, African Americans accounted for 
as much as 87 percent of HIV/AIDS cases that were reported in this year 
alone, the new cases that were reported.
  The House of Representatives and the General Assembly of North 
Carolina recently passed under the leadership of Representative Wright 
a resolution declaring HIV/AIDS as a public health crisis, that we need 
to acknowledge that and get our community involved, get our faith-based 
community involved and our education system involved, because without 
the public recognition, we are not going to deal with that.

[[Page 12745]]

  While only 1 percent of AIDS cases are found among teenagers aged 13 
through 19, an additional 18 percent are found among those who are in 
their early 20s, who may have acquired the infection while they were 
teens because many of them had the infection, but we are now just 
discovering it while they are in their early 20s. Likewise, we are 
finding infection of teenagers is increasing. Additionally, some 26 
percent are found among those who are now in their 20s, assuming they 
might have been infected some years earlier.
  As of December 31, 68 percent or 13,943 of all HIV disease reports in 
North Carolina were among those who were from 20 to 39, regardless of 
race. From 20 to 39. That is an astounding, large number of people. Let 
me repeat that: 13,943 were reported last year. Of those reported, 68 
percent of those reported were between the ages of 20 and 39.
  Now, earlier I had said that there was a correlation between STD, 
sexually transmitted disease, as a predictor of HIV.
  I want to show you another chart as well. This is alarming because 
syphilis and gonorrhea and other transmitted disease, we thought those 
had been eliminated. In fact, I have a map that I do not have with me; 
but if you look at this map, it is almost completely eliminated, other 
than in the South and in one or two places in the Midwest. Completely 
eliminated. In fact, there is no reason why sexually transmitted 
disease should be growing. There indeed is a bacterium treatment for 
it, but it is growing in the South; and it is growing in my State in 
alarming numbers.
  Although it cannot be said that the STDs cause HIV/AIDS, it can be 
said there is a correlation between them. Indeed, you can begin to see 
the large number of them growing in North Carolina. But also you see a 
high percentage of them being related to African Americans. Gonorrhea 
percentage, almost a relationship between what you see in gonorrhea and 
syphilis as the HIV chart. There is no reason for this. This is 
unexplainable why this is happening. One is a disease by a behavior 
pattern that we can correct, but also there is no public outcry in 
understanding this. One, we assign to the fact, well, this is their own 
doing and, therefore, we shouldn't be concerned.
  There is a glaring racial disparity in North Carolina cases. Seventy-
one percent of them are among African Americans. The infectious 
syphilis rate is almost 12 times greater for African Americans, 11 
times greater for Native Americans, and eight times greater for 
Hispanics than the rate for non-Hispanic whites.
  In 1998, half of all syphilis cases were confined to 1 percent, 1 
percent now, of all the counties in the United States. These cases of 
syphilis were found in 28 counties, primarily located in the South, and 
three independent cities: Baltimore, St. Louis, and the District of 
Columbia. North Carolina had five nationally significant high syphilis 
morbidity counties: Guilford, not in my district, but certainly a large 
county in my State; Forsyth, again not in my district, but a large 
county in my State; Mecklenburg, which is our largest city; Wake 
County, which is our capital; and Robeson County, growing at 
significant rates higher than all of the other southern States.
  The National Alliance of State and Territorial AIDS Directors, 
something called NASTAD, did a report. I have that report. This report 
is entitled ``HIV Services in Rural Areas.'' They studied New Mexico 
and South Carolina experiences.
  Mr. Speaker, I include this study for the Record.

   National Alliance of State and Territorial AIDS Directors, NASTAD 
                      Monograph, Executive Summary


                      HIV Services in Rural Areas

     Introduction
       AIDS cases in rural areas (less than 50,000 persons) 
     represented approximately five percent of all reported AIDS 
     cases in 1995. Patterns of HIV infection suggest that the 
     epidemic is spreading in rural regions of the United States. 
     Estimating the prevalence of HIV infection, based on AIDS 
     cases, is complicated by the tendency of rural residents to 
     go to urban areas for diagnosis and treatment, if possible. 
     Research findings indicated that the majority of HIV 
     infections in rural areas tend to occur in young adults (15-
     29 years), primarily females. Rates of heterosexual 
     transmission are more prevalent than homosexual transmission 
     and appear to be compounded by the presence of other sexually 
     transmitted diseases and the use of crack/cocaine. Geographic 
     areas with populations of 50,000 or fewer residents are 
     considered rural. In 1997, over 54 million Americans lived in 
     rural areas, composing 20 percent of the U.S. population (see 
     Appendix A).
       The HIV/AIDS Bureau (HAB) has set, as part of its policy 
     agenda, an objective to document the experience of vulnerable 
     populations and the changing nature of the epidemic. One 
     population that has been historically under served is rural 
     residents. In response, the National Alliance of State and 
     Territorial AIDS Directors (NASTAD) developed this monograph 
     on HIV Services in Rural Areas, as part of a cooperative 
     agreement with the HIV/AIDS Bureau (HAB), Health Resources 
     and Services Administration (HRSA), U.S. Department of Health 
     and Human Services.
       HIV Services in Rural Areas describes approaches that 
     states are using to address the health care and social 
     service needs of rural residents living with HIV/AIDS. NASTAD 
     selected two states, New Mexico and South Carolina, to 
     highlight in this monograph because they are located in 
     regions of the United States that are considered rural. 
     Additionally, these two states were selected because their 
     populations include a disproportionately high number of rural 
     communities of color--African, Hispanic, and Native 
     Americans--who are very high risk populations for new HIV 
     infections--living in areas with limited resources to address 
     their health care needs (see Appendix B).
       NASTAD conducted interviews with the state AIDS directors 
     and program staff and local providers in both New Mexico and 
     South Carolina in fall 1999. Based upon these interviews, 
     NASTAD identified barriers to access to HIV health care and 
     key program components that support and link HIV health 
     services in rural areas.
     Barriers to Providing HIV Services in Rural Areas
       Long Distance Travel--Almost every service provider 
     interviewed for this monograph identified transportation as a 
     barrier to overcome in the provision of services for persons 
     living with HIV/AIDS in rural areas. Providers acknowledged 
     that travel options exist: (1) commercial transportation 
     services; (2) volunteer drivers; (3) staff home visits, or 
     (4) mileage reimbursement for the use of a personal vehicle. 
     However, in cases of acute illness, the lack of an adequate 
     transportation plan may make a critical difference.
       Inadequate Supply of Health Care Providers with HIV/AIDS 
     Expertise--Providers express frustration about the lack of 
     physicians with expertise in HIV treatment, despite the wide 
     availability of training and consultation opportunities. They 
     also reported that it is difficult to monitor the quality of 
     care that persons living with HIV/AIDS receive from local 
     health care providers and that these providers, in turn, may 
     not be highly motivated to monitor care due to small client 
     caseloads. In the absence of local medical expertise, a 
     social service provider, such as a case manager, may become 
     the local ``HIV expert.'' In cases in which the provider has 
     little or not medical training, serving as the local expert 
     is a difficult and isolated job because clients living with 
     HIV and their families rely on this individual for a breadth 
     of information that she or he may or may not be able to 
     provide.
       Linking HIV Counseling and Testing with Care--Many of the 
     providers reported having either formal or informal 
     relationships with local counseling and testing sites. 
     Despite these linkages, providers also reported that a large 
     number of persons living with HIV/AIDS, as high as 50% for 
     some, are referred to services either from hospitals or 
     emergency rooms. While many of these clients are receiving 
     their diagnosis for the first time, others are aware of their 
     HIV status but have not sought services. Some providers 
     report relying heavily on ``word-of-mouth'' to reach clients 
     but acknowledged that stronger ties between testing sites and 
     other organizations that may be in a position to refer 
     clients need to be developed.
       The Lack of Available Medical Facilities--Since the early 
     1980's, the number of rural hospitals and medical facilities 
     has dwindled primarily due to financial cutbacks. Many 
     facilities have closed or have been consolidated with other 
     organizations or agencies, or the number of services has been 
     drastically reduced due to managed care penetration, or the 
     disappearance of an adequate supply of specialist, or the 
     need to acquire new and expensive technology. Such trends 
     have exacerbated the limited supply of comprehensive health 
     care services needed by rural residents living with HIV/AIDS.
       Limited Availability of Social Services--Rural areas, 
     especially poor ones, may have few agencies to provide social 
     or support services. The lack of available services restricts 
     opportunities for agency and/or organization collaboration 
     and prevents the formation of service networks. Linkages to 
     community-based social service agencies have become more 
     critical as HIV has become a chronic condition and clients' 
     needs have become more diverse.

[[Page 12746]]

       The Stigma Attached to HIV/AIDS--The stigma attached to 
     HIV/AIDS may result in community-wide denial that HIV is a 
     problem that needs to be addressed. Medical providers may 
     resist treating persons living with HIV/AIDS. In contrast, 
     clients may be reluctant to seek services in rural areas 
     ``where being socially ostracized.
       In addition, there may be a sense of mistrust of medical 
     and related health care providers by individual clients and/
     or the community at large, especially if such service 
     providers are unknown to the client or from outside the local 
     community.
       Client Adherence to Treatment--With improved HIV/AIDS care 
     and treatment, treatment adherence may become a more 
     important concern. Promoting adherence to antiretroviral 
     treatment regimens can be difficult when clients are isolated 
     and face-to-face contact between case managers, physicians, 
     treatment educators and persons living with HIV/AIDS is 
     limited. It also is difficult to assure client adherence to 
     treatment on a regular schedule if the ability to refill 
     prescriptions is problematic, or if the client has issues of 
     stigma to overcome.
       Substance Abuse--Several providers noted that the provision 
     of long-term substance abuse services is a significant 
     service delivery barrier in rural areas. Distance and limited 
     client contact compound the challenge. Substance abuse 
     treatment services may not be readily available outside of 
     urban areas. There may be a sense of denial, both in the 
     community and on the part of the clients who are using drugs 
     and alcohol, because substance abuse is not identified openly 
     as a problem in rural areas, resulting in little effort to 
     secure treatment services.
       Addressing the Special Needs of Communities of Color in 
     Rural Areas--Communities of color, including Africans, 
     Hispanic, Native, and Asian Americans, are at high risk for 
     HIV infection. Rural communities of color, like other rural 
     residents, experience the same barriers--stigma, poverty, and 
     the absence of accessible care vulnerability of these 
     communities to HIV is further compromised by additional 
     factors: discrimination, distrust of the medical 
     establishment and the health care system, diverse 
     nationalities, language differences, severe poverty and 
     unemployment, and social-cultural differences and isolation.
     State Components that Link HIV Services in Rural Areas
       The providers interviewed for this monograph have developed 
     and described various strategies for providing HIV services 
     to clients living in rural areas based on client needs and 
     available resources. State strategies include:
       Addressing Clients' Needs Beyond HIV--Service providers who 
     address the entire range of client needs are more likely to 
     maintain clients in care. Poverty, substance abuse, mental 
     illness and other problems that are often associated with 
     urban life also affect people living in rural areas. For 
     example, the Palmetto AIDS Life Support Services (PALSS), in 
     Columbia, SC, operates the Women's Resource Center. 
     Approximately 25 percent of PALSS clients live in rural 
     areas. The center provides a range of services that address 
     the needs, both HIV-related and those not related to HIV, of 
     their female clients. PALSS offers parenting classes, breast 
     and cervical cancer screening, nutrition classes, exercise 
     classes, social activities such as crafts and sewing classes, 
     and a library with resources specific to women and HIV, 
     creating a link between service provider and client.
       Client-Centered Approach--It is not always practical to 
     develop services targeting a specific population in a rural 
     area. The caseload is often small and resources are extremely 
     limited. These circumstances necessitate that staff be 
     culturally sensitive and focus on the clients as individuals, 
     since the client population, though small, may be very 
     diverse. For example, one of New Mexico AIDS Services' (NMAS) 
     case managers is Native American and works with the 
     organization's Native American clients in Albuquerque. The 
     case manager also understands the cultural importance of 
     using Native American healing methods and administers NMAS's 
     complementary medicine program.
       Flexibility--Service providers stressed the importance of 
     designing and administering programs that are flexible enough 
     to accommodate the unique needs of individuals living with 
     HIV/AIDS. Many agencies allow clients to designate where they 
     will meet with their case managers, whether at their home, a 
     local health department or library, or even for lunch at a 
     local restaurant. Such arrangements require additional 
     driving on the part of case managers and allows the client to 
     identify a ``safe site'' in his or her community where 
     individual confidentiality can be maintained. Limited clinic 
     hours present another challenge for providers. If a person 
     living with HIV/AIDS cannot schedule an appointment during 
     regular clinic hours and needs to see a physician in between 
     weekly clinics, several service providers reported that the 
     physicians will frequently allow office visits, even though 
     they are contracted to do so.
       Working with Available Resources--It is important to 
     identify and to link collaborative partners in rural 
     networks, even with limited resources. For example, the 
     Edisto Health Department in central South Carolina works with 
     the Cooperative Church Ministries of Orangeburg (CCMO), a 
     coalition of churches in the area that have combined their 
     resources to offer some services such as a small food and 
     clothing bank to persons living with HIV/AIDS, CCMO also 
     administers the Housing Opportunities for People With AIDS 
     (HOPWA) funds for the health department.
       Fostering Informal Relationships--Service providers in 
     rural areas stressed the importance of informal relationships 
     that repeatedly prove to be invaluable in identifying 
     resources and developing service networks. These 
     relationships may develop unexpectedly. The ACCESS Network in 
     Hilton Head, SC works closely with ``Volunteers in 
     Medicine,'' a medical clinic staffed by retired health care 
     professionals, who moved next door to ACCESS several years 
     ago. Some ACCESS clients now receive services at the clinic. 
     Case managers work closely with the clinic's staff to 
     coordinate clients' care. They also provide clinic staff with 
     information on HIV/AIDS treatment developments.
       Providers reported fostering informal relationships between 
     their own physicians and infectious disease (ID) specialists 
     outside their service area who are available for phone 
     consultation. Providers also cited the importance of working 
     with local media to raise awareness about HIV/AIDS and the 
     agency's services by running public service announcements 
     (PSAs) or providing coverage of agency activities and events.
     Conclusion
       Both New Mexico and South Carolina have implemented 
     strategies that seem to be working well for their respective 
     residents who are living with HIV/AIDS. Both states also have 
     found it necessary to remain flexible in implementing these 
     strategies to meet the needs of specific group of residents 
     who have unique challenges from one geographic area to 
     another within each state. The selection of these two states 
     in no way suggests that other states are not conducting 
     exemplary work to assure positive outcomes for their 
     respective residents. The selection of these states simply 
     presents an opportunity to share information about HIV 
     services in rural areas with other jurisdictions and 
     stimulate national discussion among states on how best to 
     meet the needs of persons living with HIV/AIDS.

    HIV Services in Rural Areas: The New Mexico and South Carolina 
                              Experiences


                              Introduction

       AIDS cases in rural areas represent approximately five 
     percent of the all AIDS cases in the United States. Long 
     distances between residents and accessible health care 
     services, social isolation as a result of social sigma 
     related to HIV/AIDS, lack of adequate, if any, health 
     insurance coverage, insufficient medical facilities, few 
     medical specialists, and limited support services like 
     transportation and child care challenge the efforts of rural 
     communities (see Appendix A) to serve residents living with 
     HIV/AIDS.
       State health departments, in collaboration with local 
     health agencies and organizations, are focusing on preventing 
     new infections in rural areas, getting persons living with 
     HIV into care (see Appendix B), and improving access to HIV 
     health care services in rural areas. State health departments 
     offer experienced insight, methodological research and 
     analysis, and documented evidence of the success or failure 
     of specific program strategies that collectively are designed 
     to improve the quality of life for persons living with HIV/
     AIDS. State health departments also have the expertise to 
     provide technical assistance and support for capacity 
     building to local health care agencies and organizations that 
     serve persons living with HIV/AIDS and to develop linkages 
     between HIV/AIDS health care and related services in urban as 
     well as rural areas.
       HIV Services in Rural Areas is a monograph developed by the 
     National Alliance of State and Territorial AIDS Directors 
     (NASTAD), under a cooperative agreement with the HIV/AIDS 
     Bureau (HAB), Health Resources and Services Administration 
     (HRSA), U.S. Department of Health and Human Services. NASTAD 
     conducted interviews with state AIDS directors and local 
     service providers receiving Ryan White CARE Act funds in fall 
     1999. This monograph highlights activities in New Mexico and 
     South Carolina, two states that have developed strategies to 
     address the primary care and support service needs of people 
     living with HIV/AIDS in rural areas. These two states were 
     selected because they are located in regions of the United 
     States that are sparsely populated and are characterized as 
     rural with remote populations. Additionally, these two states 
     were selected because their populations include a 
     disproportionately high number of rural communities of 
     color--African, Hispanic, and Native Americans--who are at 
     high risk for new HIV infections.


                               new mexico

       Total Population: 1,737,000.
       Area: 121,593 sq. miles.
       Population Density: 14 persons per sq. mile.
       HIV/AIDS Cases (cumulative reported through June 1999) (HIV 
     reporting was initiated in January 1998).
       People living with HIV/AIDS (reported): 1,334.

[[Page 12747]]

       AIDS cases reported in 1999: 125 (annual rate per 100,000 
     population: 7.2).
       HIV cases reported in July 1998-June 1999: 318.
       Cases of AIDS reported (Cumulative through June 1999): 
     1,866.
       Ryan White CARE Act Title II Base Grant Award, FY 1999: 
     $1,125,079.
       ADAP, FY 1999: $1,351,076.
       Total Title II Funds, FY 1999: $2,476,155.
       Over 75 percent of the cases of HIV/AIDS reported in New 
     Mexico are attributed to male to male sexual contact (MSM). 
     Women compose only eight percent of reported cases of HIV/
     AIDS. Fifty-six percent of persons reported with HIV/AIDS are 
     white, 35 percent are Hispanic, five percent are Native 
     American, and four percent are African American. Over two-
     thirds of HIV/AIDS cases are reported in Bernalillo and Santa 
     Fe Counties, where the cities of Albuquerque and Santa Fe are 
     located. The number of cases reported in New Mexico's other 
     31 counties range from zero to 124.
       In July 1997 the HIV/AIDS/STD Bureau of the New Mexico 
     Department of Health (DOH) created the HIV/AIDS Medical 
     Alliance of New Mexico (HMA). The HMA is a capitated system 
     that provides medical care, case management, home care, 
     support services including counseling, housing and 
     nutritional assistance, and work re-entry programs through 
     partnerships among regionally-based organizations.
       Under the HMA system, the state is divided into four 
     districts: Albuquerque, Santa Fe, Las Cruces, and Roswell. 
     Each of the four HMAs is a self-contained, multidisciplinary 
     provider or an association of providers, designed to provide 
     cost-effective continuum of care including a prevention 
     focus. Racial/ethnic distributions for HIV/AIDS caseloads in 
     each of the four HMA districts is reported in Appendix D.
       The HMA model resulted from a field review commissioned by 
     DOH in November 1996. The review was conducted to identify 
     and clarify shifts in the case and treatment of persons 
     living with HIV/AIDS, such as the introduction of 
     antiretroviral combination therapy and the impact of deeper 
     penetration of managed care health care into both the urban 
     and rural areas of the state. These shifts necessitated an 
     examination of the statewide HIV/AIDS service system and 
     consideration of new models of case management and service 
     delivery.
       The field review involved an inventory of existing services 
     within each of the four districts. The review included: (1) 
     an examination of each contract managed by the state HIV/
     AIDS/STD Bureau; (2) the identification of services provided 
     through other agencies such as the Veterans Administration 
     and the Indian Health Agency; and (3) a review of the HIV 
     Coordinating Council's services guide. Epidemiological data 
     was used to assess the density of client access to the 
     available services.
       In addition to the review, task forces were organized in 
     each district. These task forces were composed of 
     representatives from community-based organizations, clinical 
     systems, regional DOH agencies, advocacy groups, and home 
     care and prevention agencies. The insights from these groups 
     on access to services, competence of service providers, 
     completeness of service continuums, and gaps in services were 
     invaluable to the process.
       The findings of the review process identified needs in 
     rural areas of the state. The final report states:
       Access to adequate services diminishes the further away 
     from Santa Fe or Albuquerque one lives. Taos, Los Alamos, 
     Roswell, Las Cruces, and Farmington provide pockets of 
     services that meet the immediate needs of many persons living 
     with HIV/AIDS. The rural regions from the four corners of the 
     state are underserved and force persons living with HIV/AIDS 
     to relocate, to drive long distances, or to cross state lines 
     to pursue adequate services. Many in the task forces reported 
     that while there were physicians available to see persons 
     living with HIV/AIDS, their knowledge about the disease was 
     insufficient and resulted in misdiagnoses of opportunistic 
     infections and inappropriate treatments. Physician HIV/AIDS 
     competency is a serious issue in rural areas (Finney, 1999).
     HMAs Respond to Local Needs

                        FUNDING FISCAL YEAR 1999
------------------------------------------------------------------------
                                           State     CARE Act
                District                   funds      funds      Total
------------------------------------------------------------------------
District 1.............................   $730,000   $115,000   $845,000
University Hosp.*......................   $270,000   $115,000   $385,900
District 2.............................   $509,000   $115,000   $624,000
District 3.............................   $170,000   $115,000   $285,000
District 4.............................    $95,500   $115,000   $210,500
------------------------------------------------------------------------
(* University Hospital has a separate contract to provide primary care
  in District 1.)

       The HMA system allows HIV case management to be specialized 
     within an agency and specific to the needs of persons living 
     with HIV/AIDS. Before the HMAs, the state subcontracted with 
     approximately 100 providers. Most of the providers did not 
     specialize in HIV services and there was great variation in 
     the case management services provided. The formation of the 
     HMAs resulted in statewide availability of comprehensive case 
     management and support services for persons living with HIV/
     AIDS.
       Consolidation has been an important part of the HMAs. With 
     the establishment of the HMAs, person living with HIV/AIDs 
     enroll in and receive services from only one organization. 
     Referral to services is facilitated because there is only one 
     access point in each district and HMAs have publicized their 
     services throughout their service area. Clients receive all 
     necessary services from one provider, not various providers 
     scattered throughout the region. Accessing services from 
     several providers greatly increased the possibility of 
     breaches in confidentiality, a major concern for persons 
     living with HIV/AIDS in rural areas.
       Service providers for each district were selected through a 
     state request for proposal (RFP) process. The state review 
     process identified services considered necessary for an 
     integrated continuum of care for persons living with HIV/AIDS 
     and their families. Findings from the state review process 
     were used to develop the HMA model. Applicants are required 
     to provide the identified services either directly or through 
     contracts with other organizations. Providers have contracts 
     for three years.
     Key Factors in the Development of HMAs
       According to Donald Torres, Section Head of the New 
     Mexico's DOH, HIV/AIDS Bureau, the HMA model works well for 
     low incidence, rural states where the number of service 
     providers is relatively small. Under these conditions, the 
     service delivery network is compact enough that adjustments 
     can be easily made across the program.
       At the time of model was being considered there were only a 
     few HIV-specific providers in the state. DOH contracted with 
     various organizations throughout the state to provide case 
     management services but the contracts were not large enough 
     to jeopardize the agencies' viability if funding was 
     discontinued. Therefore, most service providers did not 
     resist the formation of the HMAs because it would not 
     negatively impact the well-being of individual organizations.
       Clients also were generally in favor of some change to the 
     existing system. The development of the HMAs paralleled the 
     move toward Medicaid managed care in the state which created 
     an environment where people expected change in the health 
     care delivery system. As with any major change, the move 
     toward HMAs created some concerns. The HMAs were caught up in 
     the partisan political debate on managed care. Additionally, 
     there were concerns that the HMAs would not be sensitive to 
     the needs of people of color and that they might divert funds 
     from HIM prevention programs.
     Two Years Later * * *
       Since their establishment, HMAs have become identified as 
     the source of HIV care in New Mexico. Of the approximately 
     1,300 persons living with HIV/AIDS, 1,100 persons living with 
     HIV/AIDS access case management services throughout the HMAs.
       In New Mexico, anyone who tests positive for HIV is 
     eligible for case management services. To be eligible for 
     services through the HMA a person must: 1) have a documented 
     diagnosis of HIV disease from a qualified licensed medical 
     provider; 2) be a resident of the service area (district); 
     and 3) have a documented income at or below 300% of the 
     federal poverty level (FPL). Members may elect to enroll in a 
     HMA other than the one providing service where they reside 
     but HMAs do not recruit members from outside their service 
     area.
       Since their initiation, the HMAs have been integrated with 
     other HIV services in the state. The DOH operates a health 
     insurance continuation program. The program pays up to $400 
     per month for the premiums of a participating client's 
     existing health insurance. The program also reimburses the 
     patient's share (co-pays) for HIV medications under the New 
     Mexico Medication Assistance Program (ADAP). The state will 
     purchase health insurance for eligible clients through 
     NMCHIP, the state's health insurance risk pool. This reduces 
     the amount of money spent by the HMAs for health care 
     services.
       The University of New Mexico's Health Science Center 
     (University Hospital), a Ryan White CARE Act (RWCA) Title III 
     grantee, administers the ``Partners in Care Program.'' 
     Medical services are provided at the hospital in Albuquerque 
     and the grantee also recruits physicians across the state to 
     provide services to persons living with HIV/AIDS. To be 
     eligible for the program, physicians must treat a certain 
     number of persons living with HIV/AIDS. University Hospital 
     physicians are available for consultation and the hospital 
     also operates a hotline that physicians may call with 
     treatment-related questions. HMA clients, especially in three 
     of the four districts, often access medical services through 
     the Title III program.
     Successful Cost Containment
       The New Mexico DOH reports significant cost savings as a 
     result of implementing the HMA model. The cost of providing 
     HIV-related care and support services, including medications, 
     to New Mexico's caseload of persons living with HIV/AIDS 
     climbed from $5.2 million in 1995 to $8.2 million in 1996, a 
     37 percent increase. The increase was primarily due to the 
     expense of antiretroviral combination therapy. Overall costs 
     of care jumped significantly between 1995 and 1996, rose 
     slightly in 1997, then in 1998 fell to the

[[Page 12748]]

     1996 level. It is estimated that if the HMA system had not 
     been implemented, the cost of HIV care in New Mexico would 
     have increased between five percent and 20 percent in 1998. 
     HMA implementation saved the state between $400,000 and $1.7 
     million. These cost savings resulted even as the number of 
     people being served increased. The net number of clients 
     served increased by an average of six percent each year.
       In the coming year, DOH plans to more thoroughly integrate 
     the Title III grant with the HMA program. Even though 
     training is available for physicians in outlying areas, the 
     HMAs report that care is still problematic and that some 
     physicians lack the required expertise to provide quality HIV 
     care. By integrating the Title III funds into the HMA system, 
     HMAs will be able to select physicians in their districts who 
     are motivated to treat persons living with HIV/AIDS and to 
     develop their HIV-related expertise.
       Additionally, these physicians are more likely to work with 
     case managers and persons living with HIV/AIDS in the 
     development of overall care plans.
       The state's early intervention nurses also play a key role 
     in linking persons living with HIV/AIDS with services. Five 
     nurses are employed by the state. In post-test counseling, 
     persons living with HIV/AIDS are linked with early 
     intervention nurses who conduct an initial assessment, refer 
     clients to the appropriate HMA, and follow-up clients who do 
     not access care. The nurses also conduct partner notification 
     services.
       As of the end of 1999, DOH plans to expand the HMA system. 
     A fifth, statewide HMA will be added that will serve Native 
     American persons living with HIV/AIDS. It will be based in 
     Albuquerque. The state also plans to contract with an agency 
     to provide benefits advocacy services. The new contractor 
     will help persons living with HIV/AIDS obtain benefits and 
     also address emerging needs such as education and re-
     employment. Additionally, the contractor will provide 
     advocacy services, including mediating grievances with HMAs. 
     The contract will be awarded through a Request for Proposal 
     (RFP) process.
     Addressing Needs in Rural Areas
       Each of the HMAs has developed a unique service delivery 
     system based on available resources in the district and local 
     challenges. All four districts serve clients who reside in 
     rural areas. Albuquerque (District 1), Las Cruces (District 
     3) and Santa Fe (District 2) contain urban areas, where most 
     clients reside, surrounded by rural areas. Roswell (District 
     4) is predominantly rural.
       The New Mexico DOH has established different capitation 
     rates for the HMAs based on the greater per client expense of 
     serving clients in rural areas. The larger HMAs, Albuquerque 
     and Santa Fe, are able to achieve some ``economies of scale'' 
     because they serve a larger number of clients. Additionally, 
     they have access to more resources, including more 
     fundraising opportunities. In rural areas, the distance that 
     clients and staff are required to travel also can escalate 
     costs for mileage reimbursement and staff driving time. To 
     facilitate access for clients in rural areas, all the HMAs 
     reimburse clients for travel expenses (mileage) and all the 
     HMAs have toll-free telephone numbers.
     Quality Assurance Activities
       DOH has adopted a variety of measures to assure the quality 
     of services delivered by the HMAs. Contracts with the HMAs 
     stipulate the number of clients to be served (a range is 
     specified), the number of contacts with each client per 
     reporting period, travel reimbursement, emergency procedures, 
     and confidentiality and grievance procedures. HMAs are 
     required to maintain records on member enrollment status, 
     provision of covered services, and relevant medical 
     information on individual members. DOH also is administering 
     a client satisfaction survey to assess whether the HMAs are 
     meeting clients' needs and to determine client satisfaction 
     with the HMA service delivery system.
       The New Mexico DOH initiated a process to identify 
     statewide HIV/AIDS ``best practices'' guidelines to be used 
     to direct the cost-effective design and delivery of HIV/AIDS 
     services throughout the state. The guidelines are intended: 
     (1) to support the management and, where appropriate, the 
     elevation of the quality of HIV/AIDS care throughout the 
     state, (2) to improve access to quality care in both urban 
     and rural areas, (3) to provide a measuring device against 
     which HIV/AIDS care system services might be objectively 
     evaluated, and (4) to provide the HMAs with a product with 
     which they might competitively position their services.
       The state guidelines present an integrated ``care team'' 
     process based on collaboration between primary care 
     physicians, case managers, and the client in the development 
     of an individualized care strategy to delay or reverse 
     disease progression. The guidelines identify core services 
     (clinical, prevention, practical support, educational support 
     and mental health) and procedures for enrollment, assessment, 
     chronic management, acute events and palliative care. To 
     develop the guidelines, DOH held a retreat attended by the 
     executive directors of two HMAs (one urban and one rural), 
     two physicians, three case managers, three persons living 
     with HIV, four early intervention nurses, and representatives 
     of the DOH. Guidelines also have been developed to address 
     case management in rural areas.
     Challenges
       Accessing Services Based at the Main Office--The HMA has 
     developed alternative approaches for clients living in rural 
     areas because it is not possible to provide all the services 
     that are available at the main office and in the field office 
     in Farmington. For example, clients in rural areas requested 
     that the food bank services be made more accessible. Many 
     were driving long distances (and getting reimbursed for the 
     mileage) for a relatively small amount of food. Now, the HMA 
     purchases gift certificates from the major supermarkets in 
     the rural areas of the district and sends them to clients 
     twice a month. Any client living more than 50 miles from the 
     main office is eligible for the food voucher program.
       Obtaining Client Feedback--Providing opportunities for 
     clients to give feedback on their needs and the services they 
     receive can be difficult in rural areas. To facilitate the 
     process, the District 4 HMA holds their Community Advisory 
     Committee meetings at six different sites throughout the 
     service area. The meetings are open to all clients. Local 
     physicians who treat clients also are invited. At the 
     meetings, clients can raise concerns about services or other 
     personal issues. To encourage attendance, dinner is served 
     and incentives, such as grocery store vouchers, are provided. 
     Twice a year, the HMA surveys clients about their needs. 
     Based on the findings of the survey, the HMA will tailor 
     information provided at the meetings to client needs and 
     depending on the topics, the agency's nurse, therapist or 
     other appropriate staff will attend. Treatment issues are 
     always a popular topic at the meetings.
       Lack of Medical Providers with HIV Expertise--According to 
     many of the HIV service providers interviewed, local doctors 
     do not take advantage of the availability of training 
     opportunities to increase their knowledge of HIV treatment. 
     In District 4, two physicians treat the majority of the 
     clients. Approximately 12 other physicians see one or two 
     clients. With a large number of physicians providing services 
     and the informal nature of the relationship between the HMA 
     and these physicians, it is difficult to monitor the quality 
     of care clients receive.
       The move to consolidate the Title III services with the HMA 
     system will allow the HMAs to focus on a limited number of 
     physicians in the region and build their expertise. 
     Additionally, HMAs that do not have on-site medical services 
     will be able to move toward a care team model with 
     physicians, case managers and persons living with HIV/AIDS 
     working together to develop a treatment strategy. 
     Consolidation will improve the monitoring of clients' medical 
     care.
       For more information about the activities of each of the 
     four districts in the New Mexico HMA system, please refer to 
     Appendix D.


                             south carolina

       Total Population: 3,836,000.
       Area: 31,113 sq. miles.
       Population Density: 123 persons per sq. mile.
       HIV/AIDS Cases (cumulative reported through June 1999) (HIV 
     reporting was initiated in February 1986).
       People living with HIV/AIDS (reported): 10,108.
       AIDS cases reported in 1999: 984 (annual rate per 100,000 
     population: 25.7).
       HIV cases reported in 1999: 877.
       Cases of AIDS reported (Cumulative): 8,352.
       Ryan White CARE Act Title II Base Grant, FY 1999: 
     $4,968,208.
       ADAP, FY 1999: $5,966,180.
       Total Title II Funds, FY 1999: $10,934,388.
       The HIV Epidemic in South Carolina--In rural areas of the 
     southeastern United States, the HIV epidemic is increasingly 
     concentrated in the heterosexual population and associated 
     with high rates of sexually transmitted diseases (STDs), 
     especially syphilis, alcohol abuse and crack cocaine use. In 
     South Carolina, 71 percent of HIV/AIDS cases reported in 1998 
     were among men, 29 percent among women. African Americans 
     made up 75 percent of reported HIV/AIDS cases. Twenty-seven 
     percent of HIV/AIDS cases are attributed to male sexual 
     contact (MSM), including MSM and injection drug use, 27 
     percent are attributed to heterosexual contact and nine 
     percent to injection drug use (36 percent have no reported 
     risk). One third (33 percent) of the people reported with 
     HIV/AIDS in 1998 reside in rural areas.
       Characteristics of Newly-Diagnosed People with HIV/AIDS: 
     Urban vs. Rural--From January 1991--December 1998, the 
     Department of Health and Environmental Control (DHEC) 
     conducted the Supplement to HIV/AIDS Surveillance (SHAS) 
     Project (supported by CDC). The project initially included 
     Charleston County and the Edisto Health District (a three 
     county area). A third county, Richland, was added in 1993. 
     The project staff conducted interviews with newly reported/
     diagnosed people with HIV/AIDS, 18 years of age or older, who 
     were residents in the study area. During the course of the 
     project, 1,146 eligible persons were interviewed. Of these, 
     78 percent were from urban communities and 22 percent were 
     from rural communities.
       The Rural SHAS Project was implemented in Edisto Health 
     District between January 1995 and December 1996. Seventy 
     interviews

[[Page 12749]]

     were completed as part of this study. The majority of 
     respondents were male (72 percent) and African American (77 
     percent). Approximately 47 percent of the Rural SHAS 
     participants had never lived outside of the county. The 
     findings of the study include:
       At the time of diagnosis, 28 percent of rural participants 
     had AIDS, as compared to 34 percent in the urban counties;
       Sixty-one percent of rural participants had 12 years of 
     education or less, as compared to 69 percent in the urban 
     counties;
       Sixty-nine percent of rural participants were unemployed at 
     the time of diagnosis, as compared to 57 percent in the urban 
     counties; and
       Sixty-nine percent of rural participants had household 
     incomes of $10,000 a year or less, as compared to 39 percent 
     in the urban counties.
       The study also revealed that participants in rural areas 
     were more likely to have used crack cocaine than those in 
     urban areas (33 percent rural, 28 percent urban) but were 
     less likely to have injected drugs (14 percent rural, 16 
     percent urban). Rural participants were more likely to have 
     not used condoms with their steady sexual partner (48 percent 
     rural, 38 percent urban) and were less likely to have 
     received money or drugs for sex (12 percent rural, 18 percent 
     urban).
       The State Consortia--South Carolina relies primarily on 
     eleven Title II-funded regional consortia to provide primary 
     care and support services to persons living with HIV/AIDS. 
     CARE Act-funded services also are provided by two Title III 
     grantees and one Title IV grantee. The DHEC administers the 
     Title IV grant on a statewide basis that provides mostly 
     tertiary and specialty care and assures that primary care is 
     easily accessible for infants, children, youth, and women 
     infected and affected by HIV. The two Title III grantees that 
     focus on outpatient early intervention and primary care 
     services are based in Columbia, the state's capital, and in 
     Ridgeland, in the southern section of the state. The 
     Ridgeland Title III provider was first funded in fiscal year 
     1998, so it is still a relatively new component to the 
     service network in this area (note: two new Title III 
     grantees were funded in 1999--Greenville Community Health 
     Center in Greenville and Low Country Health Care Systems in 
     Fairfax. The addition of these two primary care providers 
     brings additional federal resources to two rural consortia).
       The state opted for the consortia system due to a lack of 
     support service and medical providers, especially in rural 
     areas. The statewide plan developed in 1990 identified 
     primary medical care as the greatest need in the state. The 
     formation of consortia was seen as a way to stimulate the 
     development of local service networks.
       Initially, the state funded consortia in four areas. By 
     1994, statewide coverage was achieved through the formation 
     of seven more consortia. The consortia basically mirror the 
     geographic boundaries of the state's public health districts 
     to each consortia region also includes a local health 
     department.
       The consortia, which vary in size from three to six 
     counties, are charged with assessing needs and resources in 
     their region and developing and maintaining a service 
     delivery network. Each consortium has developed a unique 
     system of care based on existing needs and available 
     resources in the service area. The following variables 
     influenced the development service networks in the consortia:
       Existence of AIDS service organizations (ASOs) prior to the 
     formation of the consortium.
       Ability of the lead organization to identify and recruit 
     other providers into the services network,
       Availability of primary care providers in the service area 
     and their willingness to work with persons living with HIV/
     AIDS,
       Availability of training opportunities and information 
     sources on HIV treatment for primary care providers, and
       Access to specialty providers.
       Several providers stressed the role personality plays in 
     developing service networks in rural areas. Many 
     relationships between service providers are informal and are 
     forged between staff members in various agencies. Service 
     delivery systems must be flexible enough to allow staff to 
     take advantage of these informal linkages that can provide 
     access to necessary expertise or resources.
       Currently, 39 percent of the state's Title II funds 
     (including ADAP) go to the consortia. Funds received by each 
     consortium are based on the estimated number of persons 
     living with HIV/AIDS in the region, with some variance in the 
     formula due to demonstrated need. Consortia are funded 
     through a request for proposal (RFP) process and awarded 
     funds on a five-year cycle. While the process is designed to 
     be competitive, only a single applicant has applied for each 
     region. Service and reporting requirements are outlined in 
     the RFP and any necessary changes can be made in the annual 
     contracts. DHEC meets quarterly with consortia contacts.
       The consortia developed into one of three basic structures:
       Lead agency and subcontractors,
       Single lead agency providing both primary care and support 
     services, and
       Single lead agency providing case management with informal 
     linkages to primary care.
       The structure that evolved depended greatly on the 
     resources available in the communities. For example, the 
     Midlands AIDS Consortium, based in Columbia, SC serves both 
     urban and rural areas. The consortium focused on establishing 
     linkages through a system of subcontracts because there 
     already were agencies providing HIV-related services. In 
     other consortia regions, a single agency was identified and 
     funded to provide HIV-related services that may or may not 
     already have been available in the region.
       Quality Assurance--The Ryan White CARE Act Peer Review 
     Committee oversees the activities of Title II consortia in 
     the state. It is made up of eleven members, one for each 
     consortium, and DHEC representatives. When the committee was 
     formed in 1996, each consortium completed a self assessment. 
     The committee established a mission statement based on the 
     findings of this process. For the last two years the 
     committee was developing standards and guidelines that 
     consortia can use as tools to assess services.
       The committee has developed guidelines for case management 
     services and is also developing outcome measures for primary 
     care. To develop the guidelines for case management services, 
     the committee surveyed all case managers in the state and 
     held a series of meetings for additional input. Based on the 
     findings of this process, the committee has developed 
     standards for intake, assessment, and discharge.
       State Efforts to Link HIV Services in Rural Areas--While 
     the state relies primarily on the consortia to meet needs in 
     their own regions, the state does conduct activities that 
     assist in the provision of services in rural areas. The state 
     has consolidated the ADAP program in a centralized pharmacy 
     operated by DHEC which allows the state to administer the 
     program in a cost-effective manner while rapidly dispensing 
     medications. Medications are mailed to clients at their 
     homes. Initially, medications were distributed through local 
     health department pharmacies but increases in the number of 
     persons living with HIV/AIDS soon exceeded the capacity of 
     the regional pharmacies to carry out the necessary services.
       A major advantage of the centralized pharmacy approach is 
     that it allows DHEC to assess adherence to U.S. Public Health 
     Service treatment guidelines through monitoring prescriptions 
     for persons living with HIV/AIDS in rural areas. DHEC 
     pharmacists review prescriptions for any deviation from the 
     standard protocol. If an irregularity is identified, the 
     physician is contacted to find out why the medications were 
     prescribed and to discuss treatment decisions before the 
     prescription is filled. This provides a training opportunity 
     for physicians in rural areas who may not have treated a 
     large number of persons living with HIV/AIDS and may lack 
     expertise in HIV treatment.
       Local providers frequently report the shortage of 
     physicians with expertise in HIV treatment. The state employs 
     a Title II-funded medical consultant who is available to 
     consult with physicians. All physicians treating HIV are 
     encouraged to develop an informal relationship with the 
     medical consultant. For the Title III providers, the state 
     plans to move toward a primary provider model, in which 
     persons living with HIV/AIDS access medical services through 
     a physician in their community who has access to specialty 
     providers who can be contacted for either consultation or 
     referral.
     Challenges
       Serving a Large Region--Initially, most of the services 
     provided by the CARETEAM, the lead agency of the Waccamaw 
     Care Consortium and based in Myrtle Beach, were concentrated 
     in Horry County, near Myrtle Beach, and all staff members 
     resided in this area. To meet with clients in the two 
     southern counties required staff to make a round trip from 
     the agency's office in the northern part of the service area. 
     To alleviate some of this travel, case managers who reside in 
     the outlying counties were hired. On days when case managers 
     see clients in the southern part of the service area, these 
     case managers do not go into the office to reduce driving 
     time. Staff also may see clients at either the beginning or 
     the end of the day, before or after they have been to the 
     office.
       Within a large service area, outlying areas may have access 
     to fewer services and feel less connected to a service 
     provider. In addition to improving services for clients, 
     hiring staff from that area help to facilitate linkages with 
     the community. CARETEAM found that as they increased their 
     presence in the two southern counties, it was much easier to 
     work within these communities in terms of raising awareness 
     of HIV and of CARETEAM services.
       According to Jeff Kimbro, Executive Director of CARETEAM, 
     ``We have worked hard to make sure that Georgetown and 
     Williamsburg Counties feel they have a stake in the 
     organization and know that we are here to serve them. Even 
     though these counties will never have the same level of 
     resources as Horry County, as we've expanded our efforts in 
     the area we have seen the community gradually become more 
     involved in the response to the epidemic.''
       Knowledge Level of Primary Care Providers--Because it does 
     not have physicians on staff or have contracts with medical 
     providers, the ACCESS Network has had to

[[Page 12750]]

     work hard to assure that physicians in the service areas have 
     access to information on the treatment of HIV. Located in 
     Hilton Head and Hampton, ACCESS Network is the lead agency 
     for the Low Country Care Consortium. According to Jerry 
     Binns, President of ACCESS Network, physicians have become 
     much more knowledgeable about HIV in the past few years but 
     it is still necessary to provide educational opportunities.
       ACCESS Network has used a variety of approaches. They 
     regularly provide written materials on treatment developments 
     to local practitioners. They also hold informal meetings 
     between ACCESS Network staff and local practitioners, 
     organize educational presentations by experts (sometimes done 
     with support from pharmaceutical companies), and foster 
     relationships between local practitioners and HIV experts in 
     the state who are available for phone consultation. While 
     knowledge level is important in terms of the quality of care, 
     ACCESS Network acknowledged that the stigma attached to HIV 
     is still a barrier in terms of physicians' willingness to 
     treat persons living with HIV/AIDS. Other deterrents include 
     a fear of being perceived as an ``AIDS doctor,'' the 
     perception that HIV/AIDS needs to be treated by a specialist, 
     the potential financial costs of treating people with HIV 
     (low reimbursement rates), scheduling time to attend training 
     activities and the distance providers must travel for 
     training. For more information about each of South Carolina's 
     consortium, please refer to Appendix E.


                               Conclusion

     State Efforts that Support HIV Services in Rural Areas
       Local providers in both states identified several ways that 
     the state HIV/AIDS Program (Title II grantees) can support 
     the delivery of HIV services in rural areas in program 
     components that are often difficult to resolve.
       Assistance in Diversifying Funding Sources--Although 
     sources of financial support can be limited in rural areas, 
     service providers expressed concern about being overly 
     dependent on the state and the Ryan White CARE Act for 
     funding. Rarely do rural areas have access to a fundraising 
     base or grant opportunities from foundations and corporate 
     donors as do service providers in urban areas. Providers also 
     acknowledged that many do not possess the organizational 
     capacity to conduct fundraising activities or prepare grant 
     proposals and/or contracts. Providers suggested that states 
     provide technical assistance on fundraising, grant writing, 
     and financial and organizational capacity building. States 
     may have the resources to hire a fundraiser who can focus on 
     identifying new sources of funding for HIV services for rural 
     areas. States can assist in identifying funding sources in 
     the private sector and pass information about such sources to 
     providers at the local level.
       Identification of Outcome Measures--States can play a role 
     in initiating and maintaining a process to develop outcome 
     measures for rural medical and support services. While 
     conducting this type of program evaluation can mean 
     additional work for providers, it helps them to focus on the 
     effectiveness of their services, account for funds, and 
     demonstrate that they are improving the health status of 
     persons living with HIV/AIDS in rural areas in which they 
     provide services.
       Fostering Ryan White CARE Act Cross-Title Collaboration--
     Especially in rural areas, service providers can be separated 
     by significant distances making the establishment of linkages 
     more difficult. The absence of established links, especially 
     in areas in which other CARE Act providers (Title III, IV, 
     and SPNS) are present, but are not participating in the 
     state's Title II-funded activities, can lead to duplication 
     of and/or significant gaps in service delivery. States can 
     play a role in facilitating cross-title collaboration within 
     service areas to assure more coordinated service delivery.
       Strengthening Prevention Efforts--Rural areas can be more 
     conservative than urban areas and more resistant to HIV 
     prevention efforts. The lack of prevention efforts can result 
     in less public awareness which, in turn, may reinforce the 
     perception that HIV is not a problem in rural areas. This 
     lack of awareness on the part of the public, especially in 
     rural areas, may lead to increased spread of HIV and delays 
     in accessing services. Since states administer HIV prevention 
     funds as well, they can provide leadership in recommending or 
     mandating HIV prevention programs at the local level and 
     providing technical assistance in implementing such programs. 
     Additionally, states can move to strengthen linkages between 
     HIV counseling and testing services and HIV-related primary 
     care and support services to facilitate access to care.
       State Responses to the Challenges of Serving Persons Living 
     with HIV/AIDS--Both New Mexico and South Carolina have 
     implemented strategies that seem to be working well for their 
     respective residents who are living with HIV/AIDS. Both 
     states also have found it necessary to remain flexible in 
     implementing these strategies to meet the needs of specific 
     groups of residents who have unique challenges from one 
     geographic area to another within each state. The selection 
     of these two states in no way suggests that other states are 
     not conducting exemplary work to assure positive outcomes for 
     their respective residents. The selection of these states 
     simply presents an opportunity to share information with 
     other jurisdictions and stimulate national discussion among 
     states on how best to meet the needs of persons living with 
     HIV/AIDS in rural areas.

                               Interviews


                               New Mexico

       David Barrett, HMA Director, District 2, Southwest C.A.R.E. 
     Center, Santa Fe, 505/986-1084.
       Kathleen Kelly, HMA Director, District 1, New Mexico AIDS 
     Services, Albuquerque, 505/266-0911.
       Kari Maier, HMA Director, District 3, Camino De Vida Center 
     for HIV Services, Las Cruces, 505/532-0202.
       Jane Peranteau, HMA Director, District 4, Pecos Valley HIV/
     AIDS Resource Center, Roswell, 800/957-1995.
       Donald Torres, Section Head, HIV/AIDS Program, Infectious 
     Disease Bureau, Public Health Division, New Mexico Department 
     of Health, 505/476-3629.


                             South Carolina

     Department of Health and Environmental Control
       Lynda Kettinger, Director, STD/HIV Branch, Division of 
     Preventive and Personal Health, 803/898-0749.
       JoAnn Lafontaine, RWCA Coordinator, STD/HIV Branch, 
     Division of Preventive and Personal Health, 803/898-0752.
     Low Country Care Consortium
       Jerry Binns, President, ACCESS Network, 843/681-2437.
       Ann Driessen, Case Manager, Beaufort-Jasper Comprehensive 
     Health Services, Ridgeland, 843/987-7458.
     Midlands Care Consortium
       Pat Derajtys, Nurse Practitioner, Department of Internal 
     Medicine, University of South Carolina School of Medicine, 
     803/540-1000.
       Carmen Julius, Executive Director, Palmetto AIDS Life 
     Support Services (PALSS), 803/779-7257.
       Nancy Raley, Executive Director, Midlands Care Consortium, 
     803/540-1000.
       Michelle Rojas, Title III Project Coordinator, Richland 
     Community Health Care Association, 803/799-8407.
     Pee Dee Care Consortium
       Karen Beckford, Executive Director, Help for the Pee Dee, 
     843/667-9414.
     Tri-County Interagency AIDS Coalition
       Carl Humphries, Communicable Disease Supervisor, Edisto 
     Health Department, 803/533-7229.
     Waccamaw Care Consortium
       Jeff Kimbro, Executive Director, CARETEAM, 843/236-9000.


                               references

       Berry, D., M. McKinney, M. McClain, and A. Valero-Figueira, 
     1995. Rural HIV Services Networks: Patterns of Care and 
     Policy Issues. Rockville, MD; Health Resources and Services 
     Administration/Bureau of Primary Health Care/Office of 
     Science and Epidemiology.
       Centers for Disease Control and Prevention, 1998. HIV/AIDS 
     Surveillance Report, 10 (2). Atlanta, GA: CDC.
       Finny, M., Review and Recommendations Regarding HIV/AIDS 
     Treatment Advances and Managed Care Field. Albuquerque, NM: 
     HIV/AIDS Bureau, Department of Health, (5).
       Goldsmith, F., D. Puskin, and D. Stiles, 1993. Improving 
     the Operational Definition of ``Rural Areas'' for Federal 
     Programs. Rockville, MD: Federal Office of Rural Health 
     Policy.
       McKinney, M., 1998. Southeastern Conference on Rural HIV/
     AIDS: Issues in Prevention and Treatment Conference Report. 
     Kansas City, MO: National Rural Health Association.

             Appendix A: Federal Definition of a Rural Area

       One of the challenges of addressing needs in rural areas 
     from a policymaker's perspective is that the term ``rural'' 
     is not easily defined. Of the various definitions, two of the 
     most commonly used by federal programs were developed by the 
     Office of Management and Budget (OMB) and the Bureau of the 
     Census. Both of these definitions establish a quantitative 
     measure to define rural.
       The Bureau of the Census defines an urbanized area (UA) by 
     population density. Each UA includes a central city and the 
     surrounding densely settled territory that together have a 
     population of 50,000 or more and a population density 
     exceeding 1,000 people per square mile. A UA may cover parts 
     of several counties. Additionally, places (cities, towns, 
     villages, etc) with a population of 2,500 or more outside of 
     a UA are considered to be an urban.
       OMB designates Metropolitan Statistical Areas (MSAs) as one 
     city with 50,000 or more inhabitants or an urbanized area 
     (defined by the Bureau of Census) with at least 50,000 
     inhabitants and a total MSA population of at least 100,000 
     (75,000 in New England). Each MSA must include the county in 
     which the central city is located and additional contiguous 
     counties that are economically and socially integrated with 
     the central county. Any county that is not included in an MSA 
     is considered to be non-metropolitan. Periodically, OMB 
     reclassifies counties on the

[[Page 12751]]

     basis of Census data and population estimates.
       It is generally agreed that in rural areas, unless 
     additional encouragement or support is provided, easy 
     geographical access to health and social services is lacking. 
     However, the definitions start to get blurry when considering 
     some metropolitan counties that are so large they contain 
     small towns and rural areas. By one estimate, based on 1980 
     decennial census data, of the slightly over 32 million 
     persons who live in large metropolitan counties, 
     approximately two million lived in small towns and rural 
     areas without easy geographical access to central areas 
     (Goldsmith, 1993).

          Appendix B: Characteristics of U.S. Rural Population

       In 1997, over 54 million Americans lived in rural areas, 
     making up 20 percent of the U.S. population. During much of 
     the 1990s, the rural population grew faster than urban 
     populations.
       Race/Ethnicity--Eighty-three (83) percent of rural 
     residents are white, as compared to 69 percent of urban 
     residents. African Americans make up nine percent of the 
     rural population and 14 percent of the urban population. 
     Hispanics account for five percent of the rural population 
     and 11 percent of the urban population.
       Income Level--In 1996, real per capita income in rural 
     areas was $18,527 as compared to $25,944 in urban areas. 
     Sixteen percent of rural residents live in poverty as 
     compared to 13 percent of urban residents. Poverty is 
     especially high among rural minorities with 35 percent of 
     African Americans, 33 percent of Hispanics, and 34 percent of 
     Native Americans in rural areas living in poverty. In 
     comparison, 27 percent of African Americans, 27 percent of 
     Hispanics, and 29 percent of Native Americans living in urban 
     areas live in poverty.
       Unemployment--In 1997, unemployment in rural areas was 5.2 
     percent as compared to 4.9 percent in urban areas.
       Health Insurance--In 1996, 46 percent of rural residents 
     lacked private health insurance as compared to 38 percent of 
     urban residents.
       Access to Health Care Providers--Over 22 million rural 
     Americans live in areas that are designated Primary Care 
     Health Professional Shortage Areas (HPSAs).
       Source: ``Facts about the Rural Population of the United 
     States,'' Rural Information Center Health Service, August 
     1998.

  Appendix C: Characteristics of Communities of Color at Risk for HIV/
                                  AIDS

       Although African Americans account for approximately 13 
     percent of the U.S. population, they represent 36 of all AIDS 
     cases and 45 percent of all new HIV infections. Similarly, 
     Hispanic Americans constitute approximately 8 percent of the 
     U.S. population, but account for 18 percent of all AIDS cases 
     and 22 percent of new HIV infections. Risk for HIV infection 
     may be compounded by diversity in nationalities and cultural 
     practices, language and poverty.
       Native Americans often live in geographically remote areas 
     in the United States. Native Americans represent less than 
     one percent of the total United States population and 
     comprise at least 557 federally recognized tribes with each 
     tribe having its own traditions, beliefs, and cultural 
     practices. Approximately 1,800 cases of AIDS have been 
     reported among Native Americans through 1997.
       Asian Americans have come to the United States from more 
     than forty countries and territories and speak more than one 
     hundred languages and dialects. Generally, Asian Americans 
     live in more urban areas, as opposed to remote rural 
     locations. As HIV/AIDS infections increase throughout South 
     and Southeast Asia, the likelihood of a rise in new 
     infections among Asian Americans accelerates as families 
     traverse back and forth between their home countries and the 
     United States.

    Appendix D: New Mexico AIDS Services; Descriptions of Four HMA 
                               Districts

     District 1, Albuquerque (Counties served: Bernalillo, Cibola, 
         McKinley, Sandoval, San Juan, Socorro, Torrance and 
         Valencia).
       Caseload--495 clients.
       Client Characteristics:
       Male: 90%, Female: 10%.
       African American: 4%, Hispanic: 37%, Native American: 7%, 
     White: 50%.
       Clients with a third party payer: 36%.
       Rural clients: 14% (any client residing outside of 
     Bernalillo County).
       Capitation Rate:
       Case Management: $221 per client/month.
       Primary Care: $109 per client/month.
       The state contracts with two agencies, both based in 
     Albuquerque, to provide services in the District 1 HMA. Since 
     initiation of the HMA, New Mexico AIDS Services (NMAS) and 
     the University of New Mexico, Health Science Center, 
     Infectious Disease Clinic have worked closely to coordinate 
     case management services and primary care, even though 
     services are provided at separate sites. In 2000, both case 
     management/support services and clinical care will be 
     available at one location in Albuquerque. The HMA also has a 
     field office in Farmington, New Mexico. One case manager is 
     based in Farmington and clients in outlying areas can either 
     access primary care in Albuquerque or from local physicians 
     funded through the Title III program. If a client does chose 
     to travel to Albuquerque, mileage is reimbursed.
       The case manager in Farmington will make home visits or 
     meet clients at a designated location. The Farmington case 
     manager carries a caseload of approximately 40 clients, in 
     comparison to the 48-55 clients served by case managers in 
     Albuquerque because of the additional travel time required.
       Regional community task force meetings are held four times 
     a year for clients, families, and rural providers. Two of the 
     meetings are held in Farmington and two are held in other 
     regions of the HMA. The meetings allow an opportunity for 
     clients to provide feedback on services. Dinner is provided 
     at the meeting to encourage attendance.
     District 2, Santa Fe--(Counties served: Colfax, Harding, Los 
         Alamos, Mora, Rio Arriba, San Miguel, Santa Fe, Taos, and 
         Union)
       Caseload--285 are enrolled in the HMA--the maximum 
     stipulated in the contract with the state (of a total of 317 
     clients).
       Client Characteristics:
       Male: 90%, Female: 10%.
       African American: 2%, Hispanic: 39%, Native American: 4%, 
     White: 54%.
       Clients with a third party payer: 94% (43% are on CHIP).
       Rural clients: 43% (any client residing outside of the City 
     of Santa Fe).
       Capitation Rate:
       Under 300% FPL: $305/mo.
       Over 300% FPL: $50/mo.
       The District 2 HMA is administered by the Southwest 
     C.A.R.E. Center (SCC), an AIDS service organization (ASO) 
     based in Santa Fe. SCC's clinic is staffed with physicians, 
     nurses, and case managers and provides one-stop shopping for 
     clients. Centralized services have allowed SCC to adopt a 
     care team model, in which the case manager, physician and 
     client work closely to determine an appropriate course of 
     treatment and support for the client.
       Many clients in outlying counties prefer to go to Santa Fe, 
     if at all possible, because of the quality of primary care 
     services provided at the Santa Fe clinic. Mileage is 
     reimbursed to all primary care and case management 
     appointments. For those who prefer not to or cannot go to 
     Santa Fe, case management services are available in Taos. The 
     two case managers in Taos have about half the caseload of 
     those in Santa Fe due to the travel required to meet with 
     clients.
     District 3, Las Cruces--(Counties served: Catron, Dona Ana, 
         Grant, Hidalgo, Luna, Otero, and Sierra)
       Caseload--90 clients.
       Client Characteristics:
       Male: 83%, Female: 16% (1% other).
       African American: 3%, Hispanic: 52%, Native American: 2%, 
     White: 43%.
       Rural clients: 50% (any client residing outside of the City 
     of Las Cruces).
       Capitation Rate:
       $387 per client/month.
       Camino de Vida Center for HIV Services is based in Las 
     Cruces, the second largest city in the state. The HMA employs 
     two full-time case managers. A promotor, an additional staff 
     member not funded through the HMA, works with case managers 
     and focuses on trans-border services. The promotor sees 
     clients who travel regularly between the United States and 
     Mexico. Even though more than half of their caseload is 
     Hispanic, neither of the HMA-funded case managers is 
     bilingual. The agency would like to hire a part-time 
     bilingual case manager. Currently, the client resource 
     coordinator, who is bilingual, will travel to appointments 
     with the case managers when it is necessary.
       Case managers see most clients once per month, but the 
     amount of contact depends on clients' need. Case managers 
     make home visits but many clients from rural areas also 
     travel to Las Cruces.
       The agency's medical director sees clients at the Las 
     Cruces clinic. Private physicians participating in the 
     state's Title III program provide services outside of Las 
     Cruces. Some clients see a physician in District 4 because it 
     is closer to where they reside and some clients with private 
     insurance go to El Paso for primary care since there is more 
     access to infectious disease physicians there.
     District 4, Roswell--(Counties served: Chaves, Curry, De 
         Baca, Eddy, Guadalupe, Lea, Lincoln, Quay, and Roosevelt)
       Caseload--82 clients.
       Client Characteristics:cell 078
       Male: 81%, Female: 19%.
       African American: 10%, Hispanic: 36%, White: 54%.
       Rural clients: 100%.
       Capitation Rate:
       $314 per client/month.
       Pecos Valley HIV/AIDS Resource Center is an ASO that 
     provides case management and support services and also 
     conducts HIV prevention activities, including syringe 
     exchange. The agency provides HIV counseling and testing, 
     which serves as a direct link to services for newly diagnosed 
     persons living with HIV/AIDS. However, approximately 50 
     percent of the HMA's clients first are diagnosed with HIV in 
     the hospital or emergency room.
       This HMA does not provide on-site medical services. The 
     staff nurse handles most of the

[[Page 12752]]

     assessment and referral of clients. For example, clients will 
     call the nurse to see if a certain condition is severe enough 
     to warrant a trip to the emergency room or if it can be 
     addressed at their next medical appointment. This approach is 
     more cost effective than having a physician on staff. The HMA 
     has a memoranda of agreement (MOAs) to provide services to 
     their clients with two physicians in the area that are funded 
     through the Title III program.
       One case manager is on staff and the agency also contracts 
     with another agency to provide case management services. This 
     agency was providing case management services before the HMA 
     was formed and some of the clients preferred to remain with 
     their original case manager. Case managers get to know 
     clients personally and address their needs on an individual 
     basis because the caseload is small. Contact with the case 
     manager is dependent on client need. Approximately 30-40 
     percent of clients meet with their case manager at least once 
     every two months. About ten percent of clients come into the 
     office for appointments. The case manager travels to the 
     remaining 90 percent of clients. Travel time can be as long 
     as 3.5 hours one way.

  Appendix E: South Carolina's Lead primary Care and Support Service 
                                Agencies

     Tri-County Interagency AIDS Coalition--(Counties served: 
         Bamberg, Calhoun, and Orangeburg)
       Caseload--355 clients.
       Client Characteristics:
       Male: 61%, Female: 39%.
       African American: 93%, White: 7%.
       Uninsured: 70%.
       Rural: 100%.
       The Edisto Health Department, based in Orangeburg, is the 
     lead agency of the Tri- County Interagency AIDS Coalition. 
     The health department estimates that there are between 500-
     700 persons living with HIV/AIDS in the service area and it 
     plans to increase outreach efforts to bring more people into 
     care.
       The lead agency administers all the Title II funds received 
     by the consortium. There are few service providers in the 
     area and many support services, such as the local food and 
     clothing banks, are provided on a very limited basis by the 
     local churches. The churches have formed a coalition, called 
     the Cooperative Church Ministries of Orangeburg (CCMO) and 
     combined their resources for a more coordinated approach of 
     helping the community. CCMO administers the Housing 
     Opportunities for People with AIDS (HOPWA) funds for the 
     consortium (writing the checks to the landlords).
       The health department employs three nurses (two full-time 
     and one part-time) as case managers. Due to the staffing at 
     the health department, nurses were more readily available 
     than social workers to fill the case manager positions. Case 
     managers focus much of their time on treatment education and 
     arranging access to prescriptions in addition to assuring 
     that the other needs of clients are addressed.
       Flexibility is an important element of the relationship 
     between clients and their case manager. Case managers see 
     clients during clinic visits and also maintain phone contact. 
     Since many of the clients are isolated, home visits 
     strengthen the provider/client relationship and the health 
     department believes that face-to-face interaction is 
     important in helping clients adhere to their treatment 
     regimens. The case mangers can assess the client's 
     environment and identify factors that may make adherence 
     difficult. For example, a client may live with people who are 
     not aware of his or her HIV status and feels that he or she 
     cannot take medications without having his or her HIV status 
     discovered.
       The case managers also will meet with clients at other 
     sites that the client may designate and will drive clients to 
     appointments if they prefer to meet at the agency's office. 
     The disease intervention specialist, who works for the same 
     department that administers the HIV/AIDS program, will visit 
     clients if they are in the area doing partner notification.
       The health department provides both primary and specialty 
     care. It contracts on an hourly basis (the most cost 
     effective way for the health department to provide care) with 
     four general practitioners and an Infectious Disease (ID) 
     Physician (there is only a small number of IDs in the state 
     and most are in Charleston and Columbia). The ID physician 
     consults with the four other physicians.
       The health department's clinic for clients is open every 
     Thursday from 5-9 p.m. Each week it is staffed by three 
     physicians, including the ID physician. The commitment of the 
     physicians involved is a critical component. For example, 
     some clients are resistant to attending the clinic, whether 
     they fear loss of confidentiality or are just not emotionally 
     prepared in their acceptance of their HIV status. The ID 
     physician will see these clients in his office on a routine 
     or emergency basis. One of the concerns about limited clinic 
     hours is that clients may not have access to care when they 
     need it. For example, if a client calls on Monday with a sore 
     throat, they will have to wait until Thursday to see a 
     physician. If the situation requires, the client is referred 
     to the emergency room.
       Once again, transportation can serve as a major barrier for 
     clients attending the weekly clinic. The health department 
     contracts with a transportation service. When they were 
     considering the contract, it was discovered that if they paid 
     by the mile they could only pay a contractor the health 
     department's standard reimbursement rate. This was far too 
     low for a professional provider. Instead, the health 
     department pays the provider a flat fee per week (about 
     $10,000 per year) to bring clients to the Thursday night 
     clinic. The health department carefully monitors the contract 
     to make sure it is cost effective.
     Waccamaw Care Consortium, Myrtle Beach--(Counties served: 
         Georgetown, Horry, and Williamsburg)
       Caseload--350 active clients (will serve nearly 450 over 
     the course of the year)
       Client Characteristics:
       Male: 60%, Female: 40%.
       African American: 57%, Hispanic: 1%, White: 40%, Other: 1%.
       Uninsured and underinsured: 80%.
       Rural: 50%.
       CARETEAM, based in Myrtle Beach, is the lead agency of the 
     Waccamaw Care Consortium, which is composed of ten agencies. 
     Horry County is primarily middle class and the other two 
     counties are more rural and have fewer resources. The lead 
     agency provides both medical care and support services. One 
     of the challenges identified in service delivery in the 
     region is that the service area is long and narrow, and the 
     lead agency is located in the northern part of the region. It 
     may take more than 1.5 hours, one way, to travel to the 
     outlying areas because of the geographic configuration of the 
     service area.
       CARETEAM employs four case managers. Three have caseloads 
     of about 90-100 clients. The Director of Case Management has 
     a smaller caseload of about 40 clients because this caseload 
     requires more intensive management. Case managers contact 
     clients by phone at least once a month and meet with clients 
     on a face-to-face basis at least once every three months 
     (when applicable). Case managers will meet with clients at 
     the office, clients' homes, or at a designated location.
       The agency contracts with five physicians that have been 
     recruited (either paid per month or per patient). Two of the 
     doctors reside in the region. The other three are ID 
     physicians that commute from Charleston. The clinics are 
     operated all day Monday and half day on Tuesday and 
     Wednesday. Limited clinic hours have not been a problem since 
     clients can see a physician during off-hours if necessary. 
     All clinics are held off-site at three physicians' offices 
     located throughout the service area. A key component in the 
     provision of primary care is the medical case manager, who is 
     a medical technician. The medical case manager does all the 
     administrative work, including scheduling appointments, lab 
     work and prescriptions assistance (i.e. state, ADAP, 
     pharmaceutical companies) for the phyisican to cut down on 
     their work. The medical case manager is present at all the 
     clinics.
       Transportation is provided to medical visits by either 
     volunteers or through contracts with individual drivers who 
     are paid by the hour. CARETEAM has used taxis in the past but 
     these proved to be too expensive. While some providers in 
     rural areas have been reluctant to use volunteers to provide 
     transportation, fearing clients will be resistant to riding 
     with volunteers due to confidentiality concerns, this has not 
     been the experience of CARETEAM. In the future, CARETEAM 
     would like to acquire a van and hire a driver on a part-time 
     basis to provide transportation to clients.
     Pee Dee Care Consortium--(Counties served: Chesterfield, 
         Darlington, Dillion, Florence, Marion and Marlboro)
       Caseload--410 clients.
       Client Characteristics:
       Male: 65%, Female: 35%.
       African American: 96%.
       Uninsured: 96%.
       Rural: 70%.
       Hope for the Pee Dee, an ASO based in Florence, is the 
     consortium's lead agency and the sole recipient of Title II 
     funds. The agency provides case management services and 
     onsite primary medical care. The agency's medical clinic is 
     open three days a week and staffed by a general practitioner. 
     The agency will contract with an ID physician in the near 
     future who will be available for consultation.
       The clinic employs three full-time case managers, each with 
     a caseload of approximately one hundred twenty clients. Most 
     of the clients (about 80 percent) come into the medical 
     clinic at least once a month and meet with their case manager 
     at the same time. Case managers contact clients by phone 
     every six weeks. For the majority of clients, medical 
     services are not the top priority. Instead, they are much 
     more concerned with issues related to daily living such as 
     access to benefits, housing, food, and job training.
       In the consortium region, access to other community-based 
     support services is limited. Lack of transportation can 
     impact access but there are other challenges. For example, 
     the local food bank recently experienced funding problems 
     that could have jeopardized food services for persons living 
     with HIV/AIDS. As the only agency of its kind in

[[Page 12753]]

     the region, if it had to close, even temporarily, it would 
     have been difficult to arrange an alternative source of food 
     for the agency's clients.
       Most clients can find some way to get to the clinic, such 
     as the Rural Transit System, but this travel can be time 
     consuming and inconvenient. The agency will help arrange 
     local transportation and will pay when necessary. The agency 
     would like to either establish a mobile clinic or find 
     physicians in the region who would donate office space in 
     which the agency could hold off-site clinics.
     Low Country Care Consortium, Hilton Head--(Counties served: 
         Beaufort, Colleton, Hampton, and Jasper)
       Caseload--190 clients.
       Client Characteristics:
       Male: 58%, Female: 42%.
       African American: 65%, Asian/Pacific Islander: 1%, 
     Hispanic: 5%, White: 29%.
       Uninsured: 85%.
       Rural: 100%.
       ACCESS Network, located in Hilton Head and Hampton, is the 
     lead agency for the Low Country Care Consortium, which serves 
     a four-county area in the southeastern section of the state. 
     The service area is about the size of Delaware and Rhode 
     Island combined and has a population of about 200,000. The 
     consortium considers the entire service area to be rural in 
     nature.
       ACCESS Network is an ASO providing a full range of support 
     services. In the service area, primary care is provided by 
     various clinics, including Beaufort/Jasper Comprehensive 
     Health Services, a Title III-funded provider, and private 
     physicians. The Title III provider was first funded in 1998 
     and operates five local clinics serving Beaufort, Hampton and 
     Jasper Counties. This additional funding for primary case 
     services allowed the consortium to expand support services 
     with Title II funds that had been previously used for primary 
     care.
       ACCESS Network employs two case managers, each serving a 
     specific geographic area. One serves approximately 110 
     clients, the other 65-85. The case managers focus on the 
     assessment of client needs through face-to-face interaction. 
     Most meetings with clients take place off-site, requiring 
     significant travel on the part of case managers. The agency 
     utilizes support personnel to carry out the benefits 
     management process and complete paper work in order to 
     provide sufficient time for the case managers to meet with 
     clients. Contact with case managers depends on the severity 
     of the client's needs. Approximately 20 percent of the 
     caseload requires intensive contact either daily or once a 
     week. Other clients see their case manager every 6-9 months.
       Case managers link clients with primary care providers in 
     the service region. There are no formal linkages between 
     ACCESS Network and these providers. Primary care is available 
     from clinics operated by rural health services, private 
     physicians and non-profit health care providers. Since ACCESS 
     is not formally linked to primary health care providers, case 
     managers play an important role in assuring that clients 
     access care. At intake, clients are asked if they already 
     have a physician that they would like to continue to see and 
     whether they have a source of payment. If the client does not 
     have a physician, a referral is made based on geography and 
     ability to pay. Low-income clients are treated in various 
     local clinics that provide services on a free or sliding-
     scale basis to eligible clients.
       Because the physicians in these clinics see more HIV-
     infected clients, they often have greater expertise in the 
     treatment of HIV than other physicians in the community. 
     Clients who are not eligible for these clinics (because of 
     income level or they have private insurance) may end up 
     seeing local physicians with less experience in treating HIV 
     or having to drive to Savannah or Charleston to see an 
     infectious disease specialist (anywhere from 50-110 miles one 
     way). ACCESS provides some funds to primary care providers 
     for services such as diagnostic tests, lab work or co-
     payments that are not covered by other payment sources. The 
     primary care providers invoice ACCESS for these agreed upon 
     services.
       In the last eighteen months, ACCESS has been strengthening 
     its ties with primary care providers and there has been 
     greater coordination between physicians and case managers. 
     Physicians and case managers consult about the clients' 
     course of treatment and other factors impacting the client's 
     overall wellbeing. Case managers also serve as a treatment 
     advocate for the client.
       As in many rural areas, informal linkages can be very 
     important in obtaining a full range of medical and support 
     services for clients. For example, situated next to ACCESS 
     Network's Hilton Head office is ``Volunteers in Medicine,'' a 
     clinic staffed by retired health professionals who provide 
     free health care. While it was a coincidence that the clinic 
     opened next door to ACCESS Network, it has resulted in a 
     close collaboration between the two agencies and allows case 
     managers to be much more involved in the care of clients 
     receiving treatment at the ``Volunteers in Medicine'' clinic.

  Mr. Speaker, what this report talks about, it kind of looks in depth 
at two rural States. They chose New Mexico because it had a high 
incidence of minorities and had a lot of rural cities with small towns 
in those areas and Hispanics and Indians were in New Mexico. They chose 
South Carolina again because of the smallness and the rural nature of 
the State and the high incidence of African Americans. What they found 
in both of those cases is that there were some challenges in both of 
those States.
  In addition to all the things I talked about earlier, there is a lack 
of Federal dollars; there is a lack of public awareness, inadequate 
housing and unstable home environment. There is just a lack of 
community understanding, of family support, that they could not, in 
fact, have the kind of support that would enable people in the South to 
get it. Also there is a lack of transportation services in those areas, 
a lack of case management and services and a comprehensive program to 
respond to AIDS programs, a lack of services to assist people in 
understanding they need to stay on their drug treatment and have a 
management system, have a disciplined system where, indeed, they were 
under those areas, certainly a lack of mental counseling or religious 
counseling in these areas, and a lack of actually just an appreciation 
of the disease.
  There are issues that indeed affect us in more ways than we would 
think. But my reason in bringing this, Mr. Speaker, is to have my 
colleagues to recognize that AIDS is an issue that is affecting the 
South and is going unnoticed. It is a silent disease killing people. We 
cannot work on those perceptions that we have had. We need to 
understand the fact. We really need to look and to see what we can do 
to curb and certainly the whole issue of sexually transmitted disease 
and it being a predictor for the likelihood of getting HIV, that ought 
to be addressed. Only 28 counties in more than 3,000 counties in the 
country really have any significant cases of sexually transmitted 
disease, and in North Carolina we certainly have it. There is a 
relationship. We can fight that. We can fight that only by education 
and awareness.
  The final article I wanted to reference is indeed the impact it is 
having on women. Again, one of the misperceptions is that this is a 
disease of white gay men. That could not be further from the truth. As 
I have said, although men constitute more than female, but the rate at 
which the growth is going is happening much faster, as I said earlier, 
again this is North Carolina. And in North Carolina although 68 percent 
are male, roughly 32 percent are female, that rate is growing faster 
now for females than for males. And the rate is growing faster for 
African American females than it is for non-African American females. 
This article is from the New York Times. Again, Mr. Speaker, I include 
the article for the Record.

                [From the New York Times, July 3, 2001]

                AIDS Epidemic Takes Toll on Black Women

                            (By Kevin Sack)

       Greenwood, Miss.--Here is the rural South, the image of 
     AIDS today looks very much like Tyeste W. Roney.
       Not a gay white man. Not a crack-addicted prostitute. But a 
     20-year-old black woman with a gold stud in her nose, an 
     orange bandanna covering her braids, and her nickname, Easha, 
     tattooed on one leg.
       In the back of her mind at least, Ms. Roney had known for 
     years that she could contract H.I.V. by having unprotected 
     sex. Her mother had been telling her so since Ms. Roney was 
     13, when she lost her virginity. But either the lesson did 
     not stick, or Ms. Roney did not have the power to negotiate 
     safer sex with older lovers. She says that many of the men 
     she can count as partners did not use condoms.
       In February, after enduring 10 days of bleeding, Ms. Roney 
     went to a health clinic. First a nurse surprised her by 
     telling her that she had been pregnant and had miscarried. 
     Then the nurse asked Ms. Roney if she knew she was carrying 
     the virus that causes AIDS.
       ``I said, `Get out of here, that can't be so,' '' Ms. Roney 
     recalled. ``I just broke down and cried. I thought I wasn't 
     going to be here long. Maybe a month.''
       It is a scene that has become all too familiar for poor 
     black women here in the Mississippi Delta and across the 
     rural south. Even as the AIDS epidemic has subsided elsewhere 
     in the United States, it has taken firm root among women in 
     places like Greenwood, where messages about prevention and 
     protection are often overtaken by the daily struggle to get 
     by.

[[Page 12754]]

       Researchers say that in many ways the epidemic in the south 
     more closely resembles the situation of the developing world 
     than of the rest of the country. Joblessness, substance 
     abuse, teenage pregnancy, sexually transmitted diseases, 
     inadequate schools, minimal access to health care and 
     entrenched poverty all conspire here to thwart the progress 
     that has been made among other high-risk groups, particularly 
     gay men.
       While AIDS rates in the United States remain lower among 
     women than men, women now account for a fourth of all newly 
     diagnosed cases, double the percentage from 10 years ago. 
     That growth has largely been driven by the disproportionate 
     spread of the disease among heterosexual black women, 
     particularly in the South.
       For those who contract H.I.V. or AIDS in the rural South, 
     life can become intensely isolated. Because of widespread 
     misunderstandings about the ways H.I.V. is transmitted, the 
     stigma facing those who are infected is often suffocating.
       Many women are terrified to tell even their families, and 
     they find their only comfort in the monthly meetings of a 
     support group. One woman here, who lives with her son, is 
     convinced that he would make her eat on paper plates and 
     would keep her away from her grandchildren if he knew of her 
     illness. Ms. Roney, who has informed only her family members, 
     said she lost several neighborhood friends after they saw a 
     health department van pull into her driveway to pick her up 
     for a clinic visit.
       Black women, who make up 7 percent of the nation's 
     population, accounted for 16 percent of all new AIDS 
     diagnoses in 1999, a percentage that has grown steadily since 
     the syndrome was first identified 20 years ago. By 
     comparison, black men made up 35 percent, white men 27 
     percent, Latino men 14 percent, and white and Latino women 
     were each 4 percent.
       While the number of new AIDS cases in the United States 
     began to decline in the mid-1990's, the reversal started 
     later for Southern black women, and the drop has been slower.
       From 1981 to 1999, 26,522 black women developed AIDS in the 
     11 states of the former Confederacy. In Mississippi and North 
     Carolina, statistics show that more black women than white 
     men have contracted H.I.V. over the epidemic's course.
       Unless a cure is found, the share of AIDS patients who are 
     black and female is likely to rise. The trend is strikingly 
     visible in Southern states with large black populations. Here 
     in Mississippi, 28.5 percent of those reporting new H.I.V. 
     infections in 2000 were black women, up from 13 percent in 
     1990. In Alabama, the number rose to 31 percent, from 13 
     percent. In North Carolina, it rose to 27 percent, from 18 
     percent.
       ``While the H.I.V. epidemic is also increasingly affecting 
     men in the South and black men, the overall trends for women 
     are distinct,'' concluded researchers with the Centers for 
     Disease Conrol and Prevention in a paper published in March 
     in The Journal of the American Medical Association. ``The 
     H.I.V. epidemic in women initially centered on injection 
     drug-using women in the urban Northeast, but now centers on 
     women with heterosexual risk in the South.''


                         An Explosive Increase

       In 1997, Dr. Hamza O. Brimah, a Nigerian-born physician who 
     received training in AIDS care in London and New York, opened 
     the Magnolia Medical clinic in a strip mall here in 
     affiliation with the Greenwood Leflore Hospital. Dr. Brimah 
     is the only AIDS specialist in a nine-county area. He started 
     with fewer than 10 AIDS patients. Now he has 185. He assumes 
     he is seeing only a fraction of those who are actually 
     infected.
       ``In the beginning, I remembered everybody's name,'' Dr. 
     Brimah said. ``Now I have a hard time. Who's this? Who's 
     that? They're coming at me so fast.''
       Sixty percent of Dr. Brimah's AIDS patients are women and 
     95 percent are black, in an area where 61 percent of the 
     population is black. Almost all were infected through 
     heterosexual transmission, and a majority, he estimates, came 
     to him with a history of sexually transmitted disease.
       Research has shown that people with sexually transmitted 
     diseases like syphilis, gonorrhea and chlamydia have twice to 
     five times the risk of contracting H.I.V., because the 
     diseases cause ulcerations in protective mucous membranes. 
     The South has consistently had the country's highest rates of 
     sexually transmitted diseases. In 1999, for instance, 9 of 
     the 10 states with the highest rates of gonorrhea and 
     syphilis and 7 of the 10 with the highest rates of chlamydia 
     were in the South, according to C.D.C. figures.
       Dr. Brimah hears from his patients that H.I.V. is often the 
     least of their worries. ``There are issues,'' he said, ``of 
     looking after children, trying to get insurance, the lack of 
     a father in the home, alcohol, drugs. They have so much going 
     on.''
       Because of that, he said, women rarely seek out H.I.V. 
     testing for themselves or their partners. Many of his 
     patients, like Ms. Roney, learn that they are positive only 
     when they become pregnant.
       The other thing Dr. Brimah hears repeatedly from his 
     patients is that they understood before they were infected 
     that H.I.V. could be transmitted hetrerosexually. Typically, 
     they hold no misconceptions that H.I.V. victimizes only gay 
     white men. And yet, like smokers, speeders and drug users, 
     they place themselves knowingly at risk.
       Dr. Brimah told of one patient who dutifully took annual 
     H.I.V. tests for three years, who clearly understood the 
     nature of the virus and who then tested positive in the 
     fourth year. ``She was clued up, but she took the risk,'' he 
     said. ``She really couldn't explain it.''
       The women often struggle to explain their recklessness. 
     They look down at the floor when asked to discuss their 
     sexual behavior. Even those who have had many sexual partners 
     will say they were choosy, that they had known their partners 
     for years, sometimes for a lifetime and that they trusted 
     them. Over and over, they say, they just did not think it 
     could happen to them.
       ``I just wasn't thinking about no H.I.V., and I wasn't 
     thinking about no AIDS and I wasn't thinking about no 
     pregnancy,'' Ms. Roney said. ``I was just being hardheaded. I 
     don't know any other way to break it down.''
       Jean, a 44-year-old woman with AIDS who did not want her 
     last name used, said she fell into a fast lifestyle after 
     getting divorced in 1987. She said she might have had 30 to 
     35 partners over the last 10 years, and that they only 
     occasionally used condoms.
       ``I guess I just blocked it out of my mind,'' she said. ``I 
     thought I had a good heart so it wouldn't happen to me. I 
     knew it could happen, I guess, but I was just being stupid.''
       Health workers and researchers who hear these stories say 
     that such high-stakes risk-taking may seem to make no sense, 
     but that it must be viewed within the context of lives 
     defined fatalism, faith and powerlessness. Often they say, 
     there is little to break the tedium and despondency of life 
     here, and certainly little that provides pleasure, other than 
     sex.
       ``There's a sense that you don't control your life that 
     much, and if God wants me to have H.I.V. I'll get it,'' said 
     Kathryn Whetted-Goldstein, an assistant professor of public 
     policy at Duke who has been studying AIDS in Southern states. 
     ``All of their life experiences teach them that they have 
     very little control over their future.''
       Some girls start having sex at extremely young ages, almost 
     always with older men, and find they have little ability to 
     persuade their partners to use condoms.
       ``Most times I asked them to use one,'' ``said Ms. Roney, a 
     ninth-grade dropout, ``but you know how guys are. They do 
     their little sweet talk. `It doesn't feel the same. Let's use 
     one next time.' I just went along with it. I fell into that 
     trap.''


                        Poverty, Drugs and Risk

       Often, though not always, drugs and money play a vital role 
     as well. Indeed, Dr. Brimah said the desperate need for money 
     had become an H.I.V. risk factor in the Delta in the same way 
     that needle-sharing was in the cities.
       The Mississippi Delta, where the young green cotton crop 
     shares the summer landscape with immense catfish farming 
     ponds, has for years been among the poorest regions in 
     America.
       The median income here in Leflore County was $21,027 in 
     1997, more than $7,000 below the state median, which is 
     itself the second lowest in the country. Three of every 10 
     Leflore residents live below the poverty line. The 
     unemployment rate in April was 7.1 percent (some neighboring 
     counties have broken well into double digits) and the recent 
     closing of several large plants has made work even harder to 
     find than usual.
       The poverty is apparent on the rough streets and unpaved 
     alleys of black neighborhoods like Baptisttown and McLaurin, 
     where men and women sweat out steamy nights on the porches of 
     dilapidated shotgun shacks. Just across the Yazoo River lies 
     another world of brick mansions and lovingly tended lawns, 
     where the white people live.
       As everywhere, some poor women here make ends meet through 
     prostitution, But the more common practice is a less 
     formalized sex-for-money exchange in which nothing is 
     negotiated up front. Rather, several women and health workers 
     explained, there is an unstated assumption that a woman who 
     engaged in casual sex with a man will be rewarded with a 
     little financial help, perhaps in paying the rent, perhaps in 
     buying groceries. As one woman explained it to Dr. Brimah: 
     ``You know how it is with men, doc. No honey, no money.
       Gina M. Wingood, assistant professor of public health at 
     Emory University who has studied AIDS in rural Alabama, said 
     ``It's just trying to make ends meet, day-to-day survival. We 
     sort of see it in terms of prostitution, but they see it as 
     how they have to frame their lives, especially if they have 
     children or elderly parents to care for.''
       Jean, the 44-year-old AIDS patient, said she regularly 
     operated that way. ``Some of them would pay for sex but it 
     wasn't like I was out on the street,'' she said. ``The guy 
     would just give me a little something sometimes. I had an 
     apartment and had bills and I wasn't working.''
       Jerome E. Winston, a health department worker who tracks 
     the sexual networks of infected people in the Delta, said he 
     had heard complaints from some women about other women who 
     accepted insufficient compensation for their companionship.

[[Page 12755]]

       ``What we had said to us a couple of times by the other 
     girls is that the younger girls are messing up the system 
     because they're giving it away virtually for free,'' Dr. 
     Winston said. ``They don't negotiate anything except for 
     maybe a new CD or a pair of shoes.''
       Sex is also sometimes exchanged for drugs, particularly 
     crack cocaine, though this seems to be more common in larger 
     towns in the southern part of the state.
       Sharyn Janes, a professor of nursing at the University of 
     Southern Mississippi, said she heard horror stories while 
     conducting interviews with people considered at high risk of 
     infection. One man, she said, told her that he once drove a 
     woman out of town when she refused his demand for sex after 
     he gave her crack. He told her that ``nobody gets a free 
     ride'' and left her to walk home, Ms. Janes said.


                        tracing sexual networks

       Because of the breadth and casualness of sexual networks 
     here, an infection can be virtually impossible to track and 
     control.
       In the first half of 1999, for instance, health officials 
     untangled a trail left by two H.I.V.-positive men in 
     Greenwood who had had sex with 18 women over a three-year 
     period. Two of the women had had sex with both men. Five were 
     themselves infected with the virus, and they in turn had had 
     sex with 24 other men.
       A study of the cluster by the C.D.C. found that half of 
     those interviewed had a history of other sexually transmitted 
     diseases, that some of the H.I.V.-infected women were as 
     young as 13, and that the median age of the infected women 
     was 16, compared with 25 for the infected men.
       ``The teenager's concept is that this guy is older so he's 
     going to know what he's doing and he will take care of me,'' 
     said Dr. Shannon L. Hader, a Centers for Disease Control 
     researcher who studied the Greenwood cluster. ``The reality 
     is that older men have had more partners and are therefore 
     more likely to have S.T.D.'s.''
       Clearly, Dr. Hader said, messages about prevention are not 
     getting through. The rural South is politically conservative, 
     and prevention programs in the schools tend to be episodic 
     and focused on abstinence. Parents of students in the 
     Greenwood schools must grant written permission before their 
     children can be taught about condoms. Many local pastors are 
     also reluctant to encourage explicit discussions about sex.
       Dr. Hader also found a lack of knowledge about H.I.V. 
     treatment. Five of the seven infected members of the 
     Greenwood cluster had no idea that those with H.I.V. could 
     now live for long periods with the help of antiretroviral 
     drugs. That misconception has made it difficult to get 
     patients into care, where they could also receive information 
     about not spreading the virus.
       Those who do seek care have few options. Before Dr. Brimah 
     opened his clinic here, AIDS patients had to travel more than 
     two hours to Jackson or Memphis, a trip that many could not 
     make. Sandra Moore, a 32-year-old Greenwood woman who first 
     learned that she had AIDS in 1990, would sometimes drive as 
     far as New Orleans for treatment. Ms. Moore had withered to 
     60 pounds when she first visited Dr. Brimah, and was 
     seemingly weeks away from death. Now on medication, she has 
     increased her weight to 105 pounds and talks of living to see 
     her four young children graduate from high school.
       The cost of treatment is also prohibitive for many here. 
     The pills typically prescribed by Dr. Brimah can cost up to 
     $1,200 a month. Medicaid covers many of the poorest patients, 
     and other state and federal programs help. But the working 
     poor often have trouble qualifying for the programs.
       Last year, Dr. Brimah received a three-year, $1.2 million 
     grant under the Ryan White Care Act, the primary source of 
     federal money for AIDS treatment. He uses the money to pay 
     staff members, to buy equipment, supplies and medication, and 
     to provide transportation to needy patients.
       But in general, many Southern states have received a 
     disproportionately small share of Ryan White funds. The money 
     is appropriated to states by a formula based on the number of 
     people living with AIDS in that state. But the growth of the 
     epidemic in the South has been relatively recent, and many of 
     those infected have not progressed from H.I.V. to AIDS. 
     Congress changed the formula last year so that money will 
     eventually be based on H.I.V. counts, but the new system 
     might not take effect for years.
       The other factors obstructing treatment, and thus 
     prevention, are denial and stigma. Many infected women here 
     never tell family members and close friends for fear of being 
     shunned and abandoned.
       ``A lot of people don't understand about it,'' said Jane 
     Smith, who has only told her pastor and her mother-in-law 
     since learning two years ago that she has AIDS. ``I guess 
     they're scared they can catch it from being around people 
     with it, if they cough on them or shake their hands.''
       One married couple, both infected, said they were open 
     about their status when they lived in New York but had told 
     no one since moving to Mississippi, not even their friends at 
     Narcotics Anonymous meetings. ``Everybody would scatter if 
     they knew,'' said the wife.
       Jean has lied to her family members, telling them that she 
     has cancer, and has batted away their questions. Her joy, she 
     said, is her grandchildren, and she is convinced that her son 
     would not let her near them if he knew.
       ``I want to tell my family,'' she said, ``but I know 
     they're not going to accept it, and I'm just not strong 
     enough right now for them to reject me. It would just send me 
     over the edge.''

  This article is entitled ``AIDS Epidemic Takes Toll on Black Women.'' 
Let me just cite a couple of things from it.
  It says: ``While AIDS rates in the United States remain lower among 
women than men, women now account for a fourth of all newly diagnosed 
cases, double the percentage from 10 years ago. That growth has largely 
been driven by the disproportionate spread of the disease among 
heterosexual black women, particularly in the South.'' Again, the 
South.
  ``Black women, who make up 7 percent of the Nation's population, 
accounted for 16 percent of all new AIDS diagnoses in 1999, a 
percentage that has grown steadily since the syndrome was first 
identified 20 years ago. By comparison, black men made up 35 percent, 
white men 27 percent, Latino men 14 percent, and white and Latino women 
were each 4 percent.'' Again, in women.
  One of the doctors who looked at this says that he hears repeatedly 
by his patients in New York, and this is a doctor in New York who 
treats HIV patients, says that his women patients understand clearly, 
or they say they understand clearly, that they were infected or could 
be infected with HIV transmitted heterosexually, but nevertheless they 
go ahead and do it. It is almost like smoking. They say it is like 
smokers knowing indeed that the smoking is killing them, but they go 
ahead and do it. It is almost like a death wish. The issue is, is it 
drugs or is it the need for money? What is driving this kind of 
reckless behavior?
  He says that women often struggle to explain this recklessness. They 
look down at the floor and they say, I know that what has happened to 
me is that I was not sure, I didn't protect myself, but yet I knew I 
should have. I trusted this person. I knew this person. And I just 
wasn't thinking about getting HIV. These are older women.
  Health workers and researchers are struggling to know, How do you 
make sense of this? How is the relationship between poverty and drugs 
and risk often a part of this? We just have to find how we address 
those issues and make sure that as the life and the quality of life in 
these communities, that people are not walking into their own death 
trap. Poverty is apparently on rough streets and in the cities, and the 
exchange of sex for money or the exchange of drug needles that cause 
that has a strong part to play in it.
  ``Clearly,'' Dr. Hader said, ``messages about prevention are not 
getting through.'' We need to find a way to get those messages through. 
The rural South is politically conservative, and prevention programs in 
the schools tend to be episodic at best and more focused on abstinence 
rather than on protection. Parents of students in many of the schools 
must have written permission before anything happens. Yet those 
children are getting the wrong message from other places, many of them 
becoming pregnant and their children are likewise infected. Most local 
pastors are reluctant to encourage an explicit or a frank dialogue 
among their young people so they understand the choices they have. You 
see, in the South there is indeed, we are fighting not only the lack of 
infrastructure, we are fighting the issue of attitude.
  Mr. Speaker, there is indeed an issue of AIDS across our country. 
There is an issue of AIDS across this Nation. Certainly there is a 
severe pandemic in Africa, but there is a creeping disease that is 
indeed affecting us in the South and in rural communities throughout 
the United States, particularly in the South. It has the deadly effect 
of a silent killer. Those of us who know better are charged with the 
responsibility of waking our citizens up to this horrific disease and 
making sure that there are programs of intervention, programs of 
nurturing, care and counseling, and that our communities indeed will 
respond to it.




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                              {time}  2045