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Project Inform Considers Its Role in a National Effort to Move the U.S. Beyond Managing the HIV Epidemic to Eliminating It

April 2008

In February 2008, Pfizer invited a substantial group of Executive Directors of the nation's HIV/AIDS agencies to gather at their Research & Development headquarters in Groton, Connecticut. The meeting had two principal goals: for us to hear from Pfizer about the hope and challenges that characterize the search for increasingly effective treatments for HIV infection; and to consider how the United States will continue to finance the cost of HIV care and treatment.

I was given the great opportunity to lead a panel of HIV healthcare finance experts in a look at current and future funding issues for the Ryan White Program, Medicaid and Medicare. The panel also provided me with the opportunity to share in a conversation taking place at Project Inform about how, in years to come, the nation will move beyond managing the ongoing epidemic to truly controlling and ending it.

Today, there are some 1.2 million HIV-positive Americans. In the coming months, the CDC is expected to revise its estimate of the number of people who become newly infected each year from its current rate of 40,000 to perhaps 60,000 or more. In so doing, estimates of the total number of HIV-positive Americans may also increase significantly.

Some 17,000 Americans die each year as a result of HIV. And so, if we maintain our current response to the epidemic, there will be at least 1.63 million HIV-positive people in the nation in 2018.

Nearly two-thirds of HIV-positive people will need to turn to publicly funded programs to pay for care, treatment and social services. Today, the cost to the federal government alone of care and social support for HIV-positive people is $13 billion. Project Inform's Public Policy Department works tirelessly and effectively to advocate for the protection and expansion of all public programs that provide care and treatment to the most vulnerable people living with HIV. And yet we know all too well that current spending is inadequate to assure comprehensive, quality care for even the existing patient load. Among those currently in care and treatment for HIV, many are receiving inadequate services as a function of who they are and where they live.

The CDC estimates that fully 25 percent of HIV-positive Americans do not know their HIV status because they have never been tested or have not been tested recently enough. And an estimated 20 percent of people who do know that they are HIV-positive are not currently receiving care or treatment.

If, then, we had a meaningful national strategy to help the 45 percent of HIV-positive people to enter care who are not currently receiving it; if we were to provide all existing HIV-positive people with quality care and support services; and if we add 430,000 people to the rolls of those who will need HIV-related treatment and social services, what would be the true public cost of the care and treatment of HIV in the United States in 2018? Logic suggests that the answer is at least a staggering $19.5-$26 billion a year.

At this cost, does the political will exist to take the measures necessary to truly control the HIV epidemic? Can we ignite a second movement in this country to create that political will? If we truly want to rid the nation of this scourge, we will have to.

A key topic of conversation at the Pfizer meeting was the current plan to develop a National AIDS Strategy. Project Inform wholeheartedly supports the goal of creating the Strategy, and we are honored to be a part of the first organizing meeting for the effort taking place in New York this coming April. For us, an effective Strategy will go beyond addressing the many needs and goals that would enhance current efforts to address HIV/AIDS. The Strategy should truly be strategic, comprising a focused and detailed public health plan that describes how we will control and then eradicate HIV domestically. The Strategy should answer the following questions:

Exactly how will we assure that all HIV-positive Americans currently unaware of their HIV status are tested for HIV, and that all Americans are routinely tested for HIV in the future?

How will we ensure the entry of all HIV-positive people into quality, affordable healthcare who choose to be in care and treatment, and how will we eliminate disparities in healthcare and clinical outcomes for women, people of color and low-income people with HIV?

How, through national healthcare reform, by enacting the Institute of Medicine's recommendation that the Ryan White Program become an entitlement program, or by some other means, will we guarantee access to comprehensive, quality care and treatment for all HIV-positive Americans?

How will we eliminate barriers to the research and development of additional therapeutics for HIV disease, with an emphasis on those that go beyond controlling HIV replication to an actual cure for HIV infection?

How will we reduce by at least three-quarters the number of Americans who become infected with HIV annually through enhanced behavioral prevention and a major effort to prevent HIV using biomedical approaches? What will be the cost of this effort, and how will it be financed?

One thing is painfully clear about the challenge that HIV/AIDS advocates face in assuring adequate future funding for the care, treatment and support services needed by HIV-positive people. If we do not dramatically slow the rate at which additional people are becoming infected with HIV each year, we cannot possibly hope to finance the total cost of addressing HIV in the United States.

Project Inform has not historically been involved in HIV prevention related activities, except that our support of HIV-positive people entering care and treatment clearly helps to reduce overall community viral load and with it the likelihood of HIV transmission. But today, we are discussing ways in which to add to our existing portfolio of vital advocacy activities meaningful support for biomedical approaches to HIV prevention -- that set of strategies that will bring HIV treatment and prevention together to further reduce the incidence of HIV.

Among the possibilities Project Inform is considering for advocacy of biomedical prevention are the following. To actively support efforts to:

  • increase testing among individuals at high-risk for HIV infection and encourage them to enter treatment in order to preserve their health and avoid transmitting HIV to others;
  • encourage all HIV-positive people to consider early treatment for HIV with these same benefits;
  • determine the possible effectiveness of Pre-Exposure Prophylaxis (PrEP) in preventing HIV transmission and an expansion of Post-Exposure Prophylaxis (PEP) in preventing HV infection, as well as advocate for the public financing of these prevention strategies;
  • develop and deliver effective and affordable microbicides, both vaginal and rectal;
  • encourage the widespread detection and treatment of sexually transmitted infections, including herpes in HIV-positive individuals; and
  • although it is not precisely a biomedical prevention activity, assure the expanded availability of syringe exchange programs throughout the United States.

As Executive Director, I (Dana Van Gorder) look forward to keeping the readers of PI Perspective well informed both as Project Inform makes decisions about its leadership of biomedical HIV prevention and as the effort to develop a National AIDS Strategy proceeds. And I welcome your thoughts about how this agency, and the nation as a whole, can create a more muscular movement to advance our nation from managing the HIV epidemic to eradicating it. Please be in touch with me.

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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.