PI Action alerts & updates ... 2001

2000 Review and What to Expect in 2001

Election year politics kept Congress from completing a lot of work last year, but there was still quite a bit of activity on HIV/AIDS legislation and funding. Thank you to everyone who wrote, called, and met with your elected officials about these issues. Below is a brief summary of this year’s successes, missed opportunities, and some challenges we expect next year.

Some successes:
The biggest victory for people living with HIV/AIDS was the “reauthorization” of the Ryan White CARE Act. The CARE Act funds HIV/AIDS care, treatment and support services nationwide, such as the AIDS Drug Assistance Program (ADAP), primary care, case management, food delivery and dental programs. The CARE Act was going to expire on September 30, 2000, and needed to be “reauthorized” (or renewed) by Congress and President Clinton for another five years. Without reauthorization of an act that funds programs, it is much more difficult to get adequate funding from Congress during the next funding cycle.

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, in addition to states with mandatory newborn testing programs.

Congress finally finished its work on Fiscal Year 2001 appropriations (or spending) in early December. Since Congress missed the September 30 deadline of approving a final appropriations bill, it passed a series of “continuing resolutions” that kept programs funded at current levels until a final agreement could be reached. In late October, leaders in Congress negotiated a compromise agreement that contained some significant increases for HIV/AIDS programs. However, after the elections, Congressional leaders and the Clinton Administration were forced to renegotiate the final bill as some in Congress, presumably emboldened by the election outcome, tried to reduce the increases. While the final bill contains some significant increases in HIV/AIDS programs (particularly in prevention), they fall short of the funding levels identified as needed to match the growing epidemic. In particular, the AIDS Drug Assistance Program received only a $61 million increase, less than half the $130 million needed by states to provide adequate services. It is likely that we will need to ask Congress for an emergency supplemental appropriation in the near future as many states are already predicting significant shortfalls in ADAP funding for 2001.

Missed Opportunities:
Unfortunately, Congress missed the opportunity to pass laws that would have a positive impact on many people living with HIV/AIDS.

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, it is likely that 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 without the necessity of developing and implementing a “waiver”. The waivers must demonstrate that it won’t cost additional money to provide health care and treatment services to people covered by the waiver.

Currently, most HIV-positive people are not eligible for Medicaid until they reach disability as defined by Social Security Insurance (SSI) regulations, which generally means an AIDS diagnosis or equally disabling symptoms. 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. However, this issue remains a priority for advocates and there is expected to be debate on the bill in Congress this year.

Upcoming Challenges:
The inauguration of George W. Bush as President has created anxiety and uncertainty among HIV/AIDS advocates. For the first time in eight years, we have a new President and Administration. President Bush said little during his campaign about HIV/AIDS, and does not have much of a record on the issue as governor of Texas. However, his record on AIDS and general healthcare in Texas indicates that advocates should be watchful. In addition, one of his first actions as President, revoking funding to international family planning programs that offer abortion counseling or services, brought condemnation by health groups and women’s reproductive rights advocates and raises grave concern about his understanding of public health issues.

President Bush did make a few statements on HIV/AIDS issues as a candidate. He has “promised to do his part” to fight AIDS. He has proposed doubling the National Institutes of Health’s budget, which would increase AIDS research activities, and is on record as supporting the Ryan White CARE Act. In a letter to Numedx, a quarterly HIV medical journal, Bush stated his support for a “permanent extension of the research and development tax credit for pharmaceutical companies for are currently conducting research and development on drugs to combat AIDS.” In that same letter, Bush stated that he supports increased funding to southern Africa to fight HIV, with unspecified safeguards to ensure that U.S. money is actually being spent on those in need. He also pledged his support for medical privacy legislation. However, while Bush has indicated his support for HIV prevention programs, he is on record opposing needle exchange programs. He has also pledged that he will make funding for abstinence education a priority.

President Bush’s choices for his “transition” team and for his permanent Cabinet send more mixed messages about his commitment to fighting HIV/AIDS. Bush’s “transition” team, the group that helps the president lay the groundwork for the direction of his administration, is unusually heavy with executives from the pharmaceutical industry. The pharmaceutical industry has been widely criticized for using its influence with the U.S. government to block further development and dissemination of quality generic products that could allow more HIV positive people in developing countries access to HIV treatment. The Clinton administration had, under pressure, issued an executive order halting U.S. interference in southern Africa and Thailand policies regarding HIV treatment. Advocates will need to be watchful that advances in the international arena are maintained and improved upon.

For his Cabinet, President Bush selected Wisconsin Governor Tommy Thompson as Secretary of Health and Human Services. According to many advocates in Wisconsin, Governor Thompson has demonstrated a strong commitment on HIV/AIDS issues, including supporting significant increases in state funding, ensuring adequate funding for the AIDS Drug Assistance Program, and supporting Wisconsin’s Medicaid program. In addition, he has sought a federal waiver to expand Medicaid eligibility in Wisconsin to include people living with HIV. This leadership may help with efforts to pass a bill at the federal level making it easier for other states to do the same. However, Bush’s nomination of former Missouri Senator John Ashcroft as Attorney General is very troubling. Project Inform opposed this nomination based on Senator Ashcroft’s abysmal voting record on HIV/AIDS issues.

In addition to the change in Administrations, there has also been a fairly dramatic change in the makeup of Congress, especially in the U.S. Senate where there are fifty Republicans and fifty Democrats. It is unknown what specific challenges lie ahead as a result of this change but it is reasonable to assume that each Senator’s vote will be very important, as the margins passing or defeating a bill will be small. Keeping your Senators informed about your issues will likely take on a new importance. We must work to make sure the government’s response to the epidemic remain a priority for both the new Administration and Congress.

It is clear that a strong grassroots effort is necessary to ensure that Congress understands how their actions on HIV/AIDS issues affect the people they represent. Many new Members of Congress have likely not heard from their constituents living with and affected by HIV/AIDS in their district. It will also be even more important during the next four years that people living with HIV/AIDS speak out on the general health care issues that face our country, such as prescription drug coverage in the Medicare program. A fragmented and increasingly costly health care system makes it more likely that it will be difficult for people newly infected with HIV to get appropriate health care and treatment. Look for upcoming TAN Alerts, which will provide an opportunity for you to make your voice heard on these issues as they make their way through Congress.