[Congressional Record Volume 147, Number 95 (Tuesday, July 10, 2001)]
[House]
[Pages H3839-H3851]
From the Congressional Record Online through the 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
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-
food-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
[[Page H3840]]
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 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 upon 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
[[Page H3841]]
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.
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 person 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
[[Page H3842]]
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.
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.
[[Page H3843]]
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.
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 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
[[Page H3844]]
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 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
[[Page H3845]]
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 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
[[Page H3846]]
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 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.
[[Page H3847]]
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 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-
[[Page H3848]]
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 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
[[Page H3849]]
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.
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
[[Page H3850]]
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.
``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
[[Page H3851]]
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.
____________________