[Congressional Record Volume 151, Number 65 (Tuesday, May 17, 2005)]
[Senate]
[Pages S5305-S5306]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DODD (for himself and Mr. Bond):
  S. 1051. A bill to amend the Public Health Service Act to reauthorize 
and extend certain programs to provide coordinated services and 
research with respect to children and families with HIV/AIDS; to the 
Committee on Health, Education, Labor, and Pensions.
  Mr. DODD. Mr. President, I rise today to introduce the Children and 
Family HIV/AIDS Research and Care Act of 2005. This bipartisan 
legislation is similar to a bill that was introduced last year. This 
legislation will address the special needs of children and youth with 
HIV/AIDS--needs that are too often overlooked, both domestically and 
internationally. It recognizes the, simple fact that when it comes to 
HIV prevention, research, care, and treatment, children and youth are 
not just small adults. To give them a chance for a healthy future, we 
must ensure that their unique needs are met. I want to thank my good 
friend Senator Bond of Missouri for joining me in introducing this 
important legislation. I am very pleased to work with him to move this 
bill forward.
  Children's growing bodies are especially susceptible to the rapid 
advancement of HIV infection. Because their immune systems are still 
immature, the disease typically progresses more rapidly and differently 
in children than in adults. For example, children with HIV infection 
are more prone to neurological abnormalities and certain opportunistic 
infections than adults. In addition, because children's bodies are 
growing and developing, HIV/AIDS can have profound effects on 
children's physical growth and ability to reach developmental 
milestones such as crawling, walking and learning to talk.
  While research has definitively shown that initiating drug treatment 
in children in a timely manner promotes normal growth and development, 
and prolongs life, treating children with HIV/AIDS presents particular 
challenges. Appropriately formulated and dosed HIV/AIDS drugs are 
urgently needed to ensure that children receive optimal care. 
Currently, liquid formulations that young children can swallow are not 
always readily available. In addition, pediatric dosing and safety 
information for these powerful drugs is often lacking, particularly for 
younger children. This lack of information puts children at risk; too 
much medication can be toxic and too little will not effectively 
suppress the virus. Over time, under-dosing can lead to drug 
resistance, a particularly serious concern for children who will need 
to use these medications for years, if not decades.
  Appropriate HIV/AIDS care and treatment for children and youth also 
requires that special attention be paid to their social development 
needs. Children and youth have unique concerns regarding disclosure and 
stigma that may be exacerbated by frequent absences from school and 
social activities, and the onset of sexual maturity. Working with 
schools and other social and community institutions is imperative to 
promoting a sense of normalcy. Because children are not typically 
medical decision-makers, developing long-term care partnerships with 
parents and other caregivers is also crucial to successful care and 
treatment. At the same time, maximizing each child's own ability to 
take active participation in different aspects of his or her own care 
can increase a child's sense of ownership over treatment, improving 
adherence and overall health.
  By reauthorizing and expanding Title IV of the Ryan White CARE Act 
this legislation will help to ensure that the unique care and treatment 
needs of children are addressed. This program is a lifeline for more 
than 53,000 women, children, and youth affected by HIV/AIDS served 
annually by Title IV-funded projects. Through 91 grants in 35 states, 
the District of Columbia, Puerto Rico and the Virgin Islands, Title IV 
projects provide medical care, case management, support services, 
mental health, transportation, child care, and other crucial services 
to families affected by HIV/AIDS. Title IV is the smallest of the four 
main titles of the Ryan White CARE Act, yet reaches the highest 
proportion of minorities.
  Key to the success of Title IV projects is the model of ``family-
centered care.'' This model of care treats the whole family as the 
client, whether several family members are infected by HIV, or just a 
parent or child. The family-centered care model is crucial to 
developing strong partnerships between consumers and providers, leading 
to better health outcomes for women, children, and youth. By allowing 
affected family members to receive services, as well as the infected 
individuals, Title IV projects promote health at the family level, 
thereby prolonging life, improving quality of life, and saving money by 
keeping people out of the hospital.
  I would like to take a moment to recognize the work done by the 
Children, Youth and Family AIDS Network of Connecticut, which provides 
Title IV services to more than 500 children, youth, women, and families 
affected by HIV/AIDS in my home state. Just earlier today, I had an 
opportunity to meet with some of these individuals. They made it clear 
just how important these services are to their quality of life.
  While recommitting the Health Resources and Services Administration 
(HRSA) to family-centered care and the unique work of Title IV, this 
legislation will also expand the innovative strategies Title IV 
projects have used to prevent mother-to-child HIV transmission. Since 
1994, when the administration of preventive drug interventions was 
shown to significantly reduce perinatal HIV transmission, the number of 
newborns infected with HIV has decreased dramatically. Yet mother-to-
children transmission does continue to occur, largely due to missed 
opportunities for identifying HIV-positive pregnant women and providing 
the supportive services needed to ensure adherence to recommended 
treatment regimens. We propose to fund demonstration grants to assess 
the effectiveness of two strategies in reducing mother-to-children 
transmission: (1) increasing routine, voluntary HIV testing of pregnant 
women and (2) increasing access to prenatal care, intensive case 
management, and supportive services for HIV-positive pregnant women.
  In addition, this bill will encourage research into key care and 
treatment questions affecting the pediatric populations. These include: 
the long-term health effects of preventive drug regimens on HIV-exposed 
children; the

[[Page S5306]]

long-term health, psycho-social, and prevention needs for children and 
adolescents perinatally HIV-infected; the transition to adulthood for 
HIV-infected children; and safer and more effective treatment options 
for infants, children, and adolescents with HIV disease.
  Since history suggests that a vaccine may prove to be the most 
effective, affordable, long-term approach to stopping the spread of 
HIV, this legislation will also ensure that children are not an 
afterthought when it comes to the development of an HIV vaccine. 
Currently, some of the populations hardest hit by the pandemic--infants 
and youth--are at risk of being left behind in the search for an 
effective vaccine. Because we cannot assume that a vaccine tested in 
adults will also be safe and effective when used in pediatric 
populations, it will be important to ensure that promising vaccines are 
tested in infants and youth as early as is medically and ethically 
appropriate. Failure to begin planning for the inclusion of these 
groups in clinical trials could mean significant delays in the 
availability of a pediatric HIV vaccine, at the cost of countless 
thousands of lives. This legislation will ensure that we begin now to 
address the logistical, regulatory, medical, and ethical issues 
presented by pediatric testing of HIV vaccines so that children can 
share in the benefits of any advances in vaccines research.
  I want to thank several organizations for lending their expertise to 
the development of this legislation, in particular the Elizabeth Glaser 
Pediatric AIDS Foundation, the AIDS Alliance for Children, Youth and 
Families, and the American Academy of Pediatrics, all of whom endorse 
this bill.
  HIV/AIDS is the single greatest health care catastrophe facing the 
world today. We need to do much more to seek effective treatments and, 
eventually, a cure for this horrible illness. This legislation is by no 
means sufficient to reach that goal, but it is a step towards ensuring 
that children are not left behind as we make progress, and then when we 
do finally eradicate HIV/AIDS once and for all, children and youth are 
able to benefit immediately. I urge all of my colleagues to join us in 
support of this legislation.
  Mr. BOND. Mr. President, currently, more than 3,700 children and 
youth under the age of 13 are living with HIV or AIDS in the United 
States and of the more than 40,000 Americans newly infected with HIV 
each year, half are young people under the age of 25 years old. When we 
think about this devastating virus we do not often associate it with 
children, especially infants or newborn babies, but the fact is this 
disease does not discriminate on the basis of age. It affects children 
in very specific and very different ways than adults.
  For instance, the medical experience of children with HIV/AIDS can 
differ significantly from that of adults. Because children's immune 
systems are still immature, the disease typically progresses more 
rapidly in children than in adults and can have different 
manifestations. For example, the majorities of children with HIV have 
neurological abnormalities and are more susceptible to certain 
opportunistic infections than adults. In addition, because children's 
bodies are growing and developing, HIV/AIDS can have profound effects 
on children's physical growth and ability to reach developmental 
milestones such as crawling, walking and learning to walk.
  Medication for young children living with HIV/AIDS can also be very 
different than that of an adult living with HIV/AIDS. For example, 
children of certain ages cannot swallow pills and require liquid 
formulations of life-saving HIV/AIDS drugs that are not always readily 
available. In addition, dosing and safety information for these 
powerful drugs are often strikingly different for children and adults, 
and for younger children, this information is typically completely 
missing. This lack of information puts children at risk by requiring 
health care providers to estimate correct dosing. Too much medication 
can be toxic, and too little will not effectively suppress the virus. 
Over time, underdosing can lead to drug resistance.
  Children are not just small adults and their growing bodies are 
especially susceptible to the rapid advancement of HIV infection. Early 
awareness that a child has HIV infection, combined with good care and 
support, can enhance survival and quality of life, which is why I am 
introducing, with my colleague Senator Dodd, The Children and Family 
HIV/AIDS Research and Care Act.
  This legislation will address those needs of children and adolescents 
living with HIV/AIDS by reauthorizing Title IV of the Ryan White CARE 
Act and expanding its focus on reaching and caring for adolescents with 
HIV/AIDS. Moreover, this legislation will continue to work to reduce 
mother-to-child transmission of HIV, by promoting routine, voluntary 
prenatal HIV testing and intensive care management for HIV-positive 
pregnant women. In addition, because children are at risk of being left 
behind in the search for an effective HIV vaccine, the bill will 
require federal agencies funding and regulating HIV vaccine research to 
develop plans and guidelines for including pediatric populations in 
clinical trials as quickly as is medically and ethically appropriate. 
This legislation will also encourage research on key remaining 
pediatric research questions, including how to provide safer and more 
effective treatment options for children with HIV/AIDS.
  For a young person living with HIV or AIDS there is no cure and there 
is no remission. It is with them at home, on the playground, in the 
classroom, and at a Friday night sleepover. It will be with them as 
they enter high school, go to college and get their first job. For a 
person born with this virus it is a permanent part of their life. This 
bill will help to ensure that the needs of infants, children, and 
adolescents living with HIV/AIDS are not overlooked.
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