In the news ... 2008

Project Inform plans for election of the next President

by Dana Van Gorder, June 17, 2008

The last seven years have been trying for agencies like Project Inform that strive to reduce the impact of HIV in the United States. On one hand, the Bush administration has increased funding to address the global HIV crisis, resulting in substantial growth in access to care and prevention for millions of previously ignored individuals. But on the other hand, years of flat-funding of domestic HIV programs have resulted in substantial gaps in our nation’s response to this continuing and grave problem.

Despite Washington’s indifference and the mistaken public perception that the epidemic is under control, Project Inform has played a major role in significant gains during these seven years.

• Our Treatment Advocacy Department has supported pharmaceutical companies in bringing to market new generations of HIV medications that keep people with HIV alive longer and with a higher quality of life than ever before.
• We have led efforts through the Fair Pricing Coalition to assure that those medications are priced at levels that assure their widespread availability, particularly through public payor programs that provide medications to low-income individuals.
• Through our Treatment Website, we have continued to provide what all in the field agree is the highest quality information available about how to most effectively treat HIV infection and address the comprehensive medical needs of HIV-positive people.
• Through our National HIV/AIDS Treatment Information Hotline, we have provided one-on-one support and counsel to thousands of individuals nationwide who lacked support to make critical decisions about their care and treatment.
• And our Public Policy Program has successfully fought to make sure that Medicare, Medicaid and the Ryan White Program provide the highest possible level of access to comprehensive medical care, treatment and social support for low-income HIV-positive people.
• In California, we have made certain that the AIDS Drug Assistance Program (ADAP) and the recently created Medicare Part D prescription drug benefit fully meet the needs of people with HIV with no out-of- pocket expense to program enrollees.

Now that the November 2008 general election race has begun in earnest, Project Inform looks forward to the election of a new President and the opportunity to address a set of critical issues in the nation’s response to the epidemic. Even today, some 25% of Americans who are HIV-positive do not know their HIV status, either because they have never been tested or have not been tested recently enough. Twenty percent of HIV-positive people are not receiving care and treatment for their infection. Partly as a result of these facts, a shocking 40,000–60,000 Americans become newly infected with HIV each year.

Although we have new HIV medications that are successfully managing HIV infection, side effects in the form of heart and liver disease for those who take them are contributing to deaths among HIV-positive people. We are no closer to a real cure for HIV, or to a vaccine. Additionally, the nation has barely addressed the massive and growing epidemic of hepatitis C, which threatens the lives of some 5 million Americans, including 25% of people who have HIV.

As an agency, Project Inform is poised to provide national leadership to address these issues and to help move the U.S. from simply managing the HIV epidemic to eradicating it. Project Inform is an early leader of the effort to call on the next Administration to create and implement a National AIDS Strategy that will serve as a real blueprint for bringing the HIV epidemic to a close. We are also participating In AIDS In America, an effort of Executive Directors of many of the nation’s leading HIV/AIDS organizations to craft a set of steps the new President should take in the first 100 days in office to strengthen the response to the domestic epidemic.

In addition to continuing the effective treatment advocacy and information, as well as public policy work, for which we are respected, Project Inform is:

• leading a HAART 2.0 conference in October 2008 to consider what research is needed to establish new guidelines for constructing antiretroviral regimens that can improve clinical outcomes for people with HIV while reducing side effects;
• building advocacy efforts in support of promising but under-funded research into treatments that will cure HIV infection or reduce the presence of HIV in infected individuals’ blood to levels that permit the body to control it without further medications;
• considering what treatment information and support people living with HIV need today in order to provide the highest levels of support for individuals contacting our Treatment Website and Treatment Hotline;
• helping to lead efforts in California to implement CDC recommendations that the states eliminate barriers to the routine screening of adults for HIV infection;
• leading national efforts to determine how national health care reform could affect people living with and at risk for HIV and how the Ryan White Program will fit into any reforms; and
• building support for hepatitis C related research, care and prevention, not just for people co-infected with HIV and hepatitis C, but for all people infected with hepatitis C.

Additionally, while Project Inform has not historically been involved in HIV prevention, we are troubled by the fact that, year after year, 40,000–60,000 Americans become newly infected with HIV. Not only does this mean that good people’s lives are placed needlessly in jeopardy, but the long-term added cost of care and treatment for newly infected individuals threatens to completely overwhelm our ability to care for those who are already infected — many of whom are underserved as it is.

Project Inform is beginning to advocate for effective approaches to the biomedical prevention of HIV. We are leaders in a national dialogue about Pre-Exposure Prophylaxis (PrEP), a developing strategy to help high-risk HIV-negative people remain uninfected by taking anti-HIV medications while also practicing safe sex. We are also planning to bring experts together to consider when HIV-positive people might optimally enter treatment, both to improve their clinical outcomes and reduce the possibility of transmitting HIV to others.

Please continue to watch PI Perspective eNews for updates on the full range of efforts in which Project Inform will engage during the next President’s term to challenge the nation to move beyond simply managing the HIV/AIDS epidemic to truly eradicating it through creative, evidence based and highly strategic new initiatives.

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