A message from
Dana Van Gorder, Executive Director

March 2010

Dana Van Gorder Executive Director

Crucial decisions in coming months will have a major impact on the course of the epidemic

There is no doubt that the period during which George W. Bush was President was one of the most unproductive in the fight against HIV in the 28 years since the epidemic began. On one hand, major advances in the treatment of HIV beginning in 1996 resulted in significant decreases in HIV related illness and mortality and President Bush made a massive and commendable investment in battling the global epidemic, But investment in the U.S. epidemic largely stalled, federal agencies responsible for controlling HIV/AIDS were unwilling or unable to take any innovative new steps to control the epidemic, and conservative politics regarding sex education and drug use set a regressive tone in the debate about how to prevent new cases of HIV.

In stark contrast, the first year of the Obama administration created significant cause for optimism in the fight against HIV and AIDS. The President lifted the ban on entry to the United States of HIV-positive people and also agreed with Congress to lifted the ban on federal funding of lifesaving syringe exchange programs. He reinvigorated the Office of National AIDS Policy and appointed a highly capable Director of that office to help lead a more robust and well-coordinated federal role in the epidemic. He also appointed a strong set of members to the President’s Advisory Council on HIV and AIDS (PACHA) to provide counsel on unmet needs in the epidemic.

As part of the federal stimulus, President Obama invested significant new dollars in research at the National Institutes of Health, some of which will be spent to conduct studies beneficial to controlling HIV and to advance cure related research. And perhaps most importantly, he agreed to the community’s request that his administration develop a National HIV/AIDS Strategy to set out a blueprint by which this country will address a set of major deficiencies in the response to the epidemic and bring this unnecessary problem to an end. Project Inform has been a leader in the effort to demand such a comprehensive strategy from the government.

With all of this as a basis, Spring of 2010 will be a critical time for the domestic epidemic in three respects. These next months will determine whether there is an awakening in our approach to controlling the epidemic and whether the financial resources needed to do so will be made available or whether we will continue to stagnate.

A major goal of Project Inform and of many other leaders in the epidemic is to greatly increase the percentage of HIV-positive people who know their HIV status and enter care and treatment. This will benefit both individual health and help to reduce new cases of HIV infection. Indeed, Project Inform led a significant meeting in December 2009 that resulted in a recommendation that the National HIV/AIDS Strategy contain a major national initiative called Testing & Linkage to Care Plus, or TLC+, to promote gains in the health of HIV-positive people and prevent new infections.

Financing the huge expansion of care and treatment that is needed to bring HIV/AIDS to an end would best be brought about through national health care reform, which would have the effect of assuring affordable health insurance coverage for all Americans. Project Inform has been working with its advocacy partners to assure that the needs of people with HIV and AIDS are met in the reform legislation currently pending before Congress. We will all learn in coming days and weeks if this vital legislation is approved. If it is not, HIV/AIDS advocates will be left to battle in Congress for a remedial set of laws and appropriations that greatly expand access to care and treatment for up to 550,000 Americans who need, but are not receiving, care and treatment.

The coming three months will also determine whether the President and Congress will provide the funds necessary to assure that one of the most important safety net programs in the epidemic, the AIDS Drug Assistance Program, or ADAP, is able to meet growing demand. This program assures access to HIV medications for low-income individuals with HIV and AIDS. It is funded through a combination of federal and state funds, as well as rebates paid by pharmaceutical companies on drug purchases.

Because states are free to decide how much money they will add to federal funds in order to assure access to the program, there are great differences in the strength of ADAPs throughout the country. Massive state budget deficits resulting from the recession have reduced funding to the program in many states at the same time that enrollment is growing due to high unemployment. California appears to have avoided a $97 million ADAP shortfall for next fiscal year as a result of advocacy led in part by Project Inform. But waiting lists for drugs are growing in many states and the President’s decision to place only $20 million in new funds into the program is grossly insufficient to address a growing crisis in access to HIV medications. ADAP advocates are holding talks with the White House and Congressional leaders urging a significant and immediate increase in appropriations for ADAP. It is critical that agreement on this life or death issue is secured by this coming Summer.

Finally, President Obama has set an ambitious timetable for producing a substantive draft of the National HIV/AIDS Strategy, which is being developed by a panel of representatives of all federal agencies involved in the response to HIV/AIDS. Community organizations have made a set of recommendations on important content of the Strategy.

The Interagency Task Force’s draft Strategy is to be available for review in June, and those who have worked so hard to call for this document but are not at the table to participate in its development eagerly await the results. Will the Strategy constitute a slight variation on current, inadequate approaches to the epidemic or chart the bold and innovative new course needed to meet its stated goals of ensuring a major increase in the percentage of HIV-positive Americans who are engaged in care and treatment and a major reduction in new cases of HIV infection? It is currently difficult to know, as key decision makers are keeping their cards close to their vests.

We encourage our readers to carefully follow developments on these issues over the next three months through PIP eNews and to respond to our Action Alerts at key moments when we need community members to weigh in on these crucial matters.