Support the Ryan White CARE Act

The CARE Act was established by Congress in 1990, named after the young Indiana teen who died of AIDS. It comes up for renewal every five years, and the legislation that authorizes the Act will expire on September 30, 2005. According to the CAEAR Coalition, a national membership organization dedicated to meeting the critical needs of PWHIV through services provided by the CARE Act, the Act is the “largest discretionary investment in the care of people with HIV/AIDS in the U.S., [and] funds primary health care and support services for people with HIV/AIDS who lack health insurance and financial resources for their care.

“Each year, CARE Act programs reach more than 533,000 individuals with or at risk for HIV in all 50 states, the District of Columbia, Puerto Rico and the U.S. territories.

“Since 1990, CARE Act-funded services have:

• reduced AIDS mortality by 70 percent
  
• curbed mother-to-child transmission of HIV by 70 percent; and
  
• reduced HIV-related hospital admissions 30 percent nationally and up to 75 percent in some locales

Included in the CARE Act are provisions for access to HIV medications for those who cannot afford them, otherwise known as the AIDS Drug Assistance Program (ADAP). This is a vital program, which unfortunately has waiting lists in many states due to lack of funding, and the rising cost of treatment.

While the CARE Act itself is up for renewal every five years, the actual funding of the Act is determined on an annual basis. The CARE Act has been funded essentially at a “flat” level over the past several years, resulting in an overall decrease in funding. Meanwhile, the need for services steadily increases along with new infections every year, while the cost of providing these services rises as well.

It is imperative that we let our elected officials know that the Ryan White CARE Act is making a crucial difference in the lives of the people they represent, and requires increased federal support. In so doing, Congress will send the message to the American people that providing these much needed services to people living with HIV/AIDS in the U.S. is of the highest priority.

There are three potential amendments that could potentially be included in the reauthorized CARE Act, and are worrisome.

The first is mandatory testing for pregnant women. This could indirectly drive more people to not seek care, and raises additional issues regarding privacy.

The second is increased funding of abstinence-only programs. While abstaining from sex can and should be a part of a well-rounded sex education curriculum for youth, abstinence-only programs have not been shown to be effective in reducing the spread of HIV.

And finally, increased funding of faith-based programs is on the agenda. There are currently many organizations that are affiliated with various denominations, which already do some phenomenal work in HIV/AIDS. However, I believe it sets a dangerous precedent and sends the wrong message to mandate that a certain percentage of federal funds be tied to “faith-based” organizations. What percentage of Christian, Muslim, Jewish, and other organizations will qualify for these funds? What guidelines will they be required to follow? Which established, successful programs will be slashed to accommodate them? Are agnostics, or atheists, to be considered? And whatever happened to the separation of church and state?

The CAEAR Coalition has developed the Principles for Ryan White CARE Act Reauthorization:

• The Ryan White CARE Act works, and it must be reauthorized.
  
• People living with HIV, especially consumers of CARE Act services, must be a central part of the reauthorization process and provide continued input into CARE Act planning.
  
• The existing CARE Act title structure must be maintained to provide the ability to target policies and resources to diverse populations impacted by the AIDS epidemic.
  
• The CARE Act must address current, evolving and ongoing emergency needs of people living with HIV and AIDS and the organizations that serve them.
  
• Many people with AIDS are living longer.
  
• Many people living with HIV/AIDS need access to more treatment and medical support services.
  
• Community planning, coordination with health care systems and local decision-making are central to the success of CARE Act programs.
  
• A comprehensive range of services should be supported, including HIV testing, treatment and supportive services, which must be available in sufficient quantities, appropriate to local need.
  
• CARE Act funding and program guidance must continue to take into consideration that HIV/AIDS is a life-threatening infectious disease that is an ongoing public health emergency.
  
• The CARE Act must commit to:
  
• Strengthen and re-energize the Planning Councils and Consortia
  
• Address geographic variability and stabilize necessary and effective systems of care
  
• Reinvest in maintenance and expansion of service capacity, targeted education and training of health care providers (AETCs), including continuing medical education and systems improvement projects.
  
• The AIDS Drug Assistance Program must remain an essential component of the CARE Act.
  
  

So what can you do?

First, get involved! Let your representatives in the U.S. Senate know that the Ryan White CARE Act must be reauthorized, and increased funding is essential. If you don’t know who your Senators at the national level are (there are only two for every state), go to www.aidsvote.org and find out! Also, visit www.caear.org for more information about the CAEAR Coalition.

Second, let your friends, family and co-workers know that they need to contact their representatives in Congress. Every person who contacts their senator represents hundreds, if not thousands, of constituents to that elected official.

Make your voice heard, and your vote count!

Jeff Berry

Interim Editor

e-mail: publications@tpan.com