After a slow start, Congress was able to pass a bill, which was signed by the President in October. While not perfect, the CARE Act is secure for another five years. This victory is the result of broad support by Democrats and Republicans in Congress and tremendous efforts by AIDS advocates nationwide.
Many advocates spent time this summer fighting a proposal to create financial incentives within the CARE Act for states to pass laws requiring HIV testing of pregnant women and newborns. A coalition of organizations?including Project Inform, National Minority AIDS Council, AIDS Foundation of Chicago, AIDS Legal Referral Panel, LAMBDA Legal Defense and Education Fund and the HIV Law Project of New York?came together to fight this proposal and offer reasonable alternatives. The result was a compromise that allows a couple of states with "the most significant demonstrated success" in reducing mother-to-child HIV transmission to apply for special funds in the CARE Act. States with mandatory newborn testing programs may apply for these funds as well.
The Patients' Bill of Rights continues to be stalled in Congress. This bill would provide protections for individuals in a managed care system, and help insure better access to healthcare and treatment. Even though a compromise bill was created that was acceptable to many Republicans and Democrats -- and supported by President Clinton -- it still wasn't passed before the end of 2000's Congressional session. Given the new President and Administration, pressure may be necessary to keep this bill intact and a priority for the new Congress.
There was also a last-minute attempt to pass the "Early Treatment for HIV Act" at the end of the year. This bill would have given states the option to provide Medicaid coverage for uninsured, low-income people living with HIV. Currently, most HIV-positive people are not eligible for Medicaid until they receive an AIDS diagnosis. This bill would allow people to start receiving healthcare and treatment services before becoming ill. The bill did not make it through Congress before the end of the year, and it remains a priority for advocates.
Specifically, it is clear that we will likely have to continue to fight on the issue of HIV testing of pregnant women and newborns. The Centers for Disease Control and Prevention (CDC) will soon release new guidelines on the issue. We know from the CDC's draft that the guidelines will contain some good provisions and attempt to increase the availability of HIV testing for pregnant women.
However, the general trend of the guidelines weakens a pregnant woman's right to informed consent for HIV testing and adequate pre-test counseling. This right means getting the complete information needed in order to make an informed choice on whether or not to test for HIV. While many organizations submitted comments on the draft, it is possible that the final guidelines will cause some legislators in Congress and state legislatures to pass laws limiting a pregnant woman's rights.
You can play a key role in these issues by joining Project Inform's Treatment Action Network. TAN members respond to Action Alerts and communicate with their elected officials about legislative and funding issues that affect them and people they care about. Lawmakers need to know how their actions and votes affect the people they represent. We provide the information and assistance you need to prepare your message to your legislators. If you would like to join TAN and make your voice heard on any of these issues, call Project Inform's toll-free hotline at 1-800-822-7422 and ask for a TAN membership form, or email your name and contact information to firstname.lastname@example.org. Your help is needed more than ever!
Back to the What's New? January, 2001 Table of Contents.