Friday, August 26, 2011

ADAP Waiting Lists, Public Opinion Perspectives & Competing Ribbons

In 1996, HIV/AIDS was ranked by the American people as the number one public health concern facing the nation. While anti-retroviral treatments were entering the world stage with a bang at the time, it was hard to overcome more than a decade characterized by AIDS ignorance, stigma and fear. Fast forward to 2010, Americans ranked Swine Flu as the most important public health concern...yet not a single person died of the illness last year in the United States. Despite thousands of AIDS-related deaths in 2010, HIV/AIDS ranked in the mid-20s among the public health concerns of the American people.

Could the changing attitudes help explain why as of August 18th (2011), there were 9,201 people living with HIV/AIDS on waiting lists under the AIDS Drug Assistance Programs (ADAPs) in twelve states? Could the lack of public concern be fueling insufficient federal funding, statewide cost containment strategies or rising drug prices and even the historic number of people being denied access to care and treatment?

The Kaiser Family Foundation (KFF) just might have the answer!

In June 2011, KFF released its "HIV/AIDS At 30: A Public Opinion Perspective" summarizing its eighth large-scale national survey of Americans on HIV/AIDS. The results should not come as any surprise.

Key findings include:1
  • Black Americans, and particularly young blacks, express much higher levels of concern about HIV infection than whites.
  • Reported HIV testing rates are flat since 1997, including among some key groups at higher risk.
  • Thirty years into the epidemic, there is a declining sense of national urgency and visibility of HIV/AIDS.
  • At the same time, after nearly a decade of decline, the share of Americans who say they are personally "very concerned" about becoming infected ticked up for the first time in this year's survey.
  • Many Americans still hold attitudes that may stigmatize people with HIV/AIDS, but such reported attitudes have declined in recent years.
  • Despite continuing economic problems, more than half of Americans support increased funding for HIV/AIDS, and fewer than one in ten say the federal government spends too much in this area.
  • Media, which includes radio, television, newspapers and online sources, is the top information source on HIV across racial/ethnic groups and for younger and older adults alike.
  • Three-quarters of Americans could not name an individual who stands out as a national leader in the fight against HIV/AIDS, and no person who was mentioned makes it into double digits.
For additional information about the excellent resources being made available by KFF, please visit their website:

Obviously, Americans no longer view HIV/AIDS as a priority in the United States. Is there any other reason to explain why the number of people living with HIV/AIDS on ADAP waiting lists in this country has exploded from 99 in May 2009 to 9,201 to August 2011? That's a 9,193% increase!!!

Since the late 1990s, HIV/AIDS funding has been hit with a double-whammy...

The federal commitment to domestic HIV/AIDS funding for Ryan White programs, including ADAP, has struggled to keep pace with demand and the proven science and cost-effectiveness of prevention, care and treatment over the past decade. Yet, since 2003 domestic HIV/AIDS programs have taken a back seat to the President's Emergency Plan for AIDS Relief (PEPFAR), a five-year $15 billion plan to fund AIDS care and prevention in the developing world. According to the Center for Global Development, the United States has disbursed $18.8 billion via PEPFAR since its inception,2 and an additional $5.5 billion is appropriated for FY2009, representing 1/6 of the total State and Foreign operations appropriations.3 In comparison, Ryan White funding (including ADAPs) was appropriated at $2.02 billion in FY2004, $2.04 billion in FY2005, $2.04 billion in FY2006, $2.11 billion in 2007, and $2.14 billion in FY2008.4 The most recent Omnibus spending package approved by Congress included $2.24 billion for FY2009, which means that the United States has spent one-third (1/3) less on services and supports funded under Ryan White than was sent to combat AIDS abroad! Unfortunately, funding in FY2010 continued that trend. That's whammy #1!

The Red Ribbon was once a widely-recognized symbol of awareness and hope for people effected, and affected by HIV/AIDS. Wearing the Red Ribbon was likened to a first place ribbon in the fight against the disease...but now, that ribbon has fallen behind to competing colors. Whether it is the Pink Ribbon for breast cancer, Blue Ribbon for prostate cancer or the Jigsaw Ribbon for autism, numerous other colors have relegated the AIDS Ribbon to the back of the pack. For example, cancer research received $1.3 billion in American Recovery and Reinvestment Act funds for spending by the National Cancer Institute in FY 2009 and FY 2010.5 Ironically, despite repeated pleas by some Members of Congress and the broader HIV/AIDS community, no such stimulus funding was devoted to alleviate the ongoing ADAP crisis. That's whammy #2!

The paradigm that led to this one-two punch needs to change. Otherwise, ADAP waiting lists will continue to grow...leaving a growing number of people living with HIV/AIDS in the United States without the timely and appropriate access to care and treatment. It starts with public perception...

1st Place

2nd Place

3rd Place

Last Place

Isn't it time for HIV/AIDS to compete again?


1 Kaiser Family Foundation, "HIV/AIDS At 30: A Public Opinion Perspective," June 2011.
4 National Association of State & Territorial AIDS Directors, “FY2004 – FY2008 Appropriations for the Ryan White Program”, February 2008
5 National Cancer Institute, "Cancer Research Funding - Key Points," June 2011

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