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: http://www.kff.org/kaiserpolls/8186.cfm.

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.

2 http://www.cgdev.org/section/initiatives/_active/hivmonitor/pepfardata
3 http://appropriations.house.gov/pdf/SFOFY0902-23-09.pdf
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

Why the Congressional HIV/AIDS Caucus Needs to Rise Above Partisanship

The U.S. House of Representatives recently filed paperwork to form the bipartisan Congressional HIV/AIDS Caucus ((formerly the Congressional Task Force on International HIV/AIDS) ). The Caucus is being spearheaded by Rep. Barbara Lee (D-CA), Rep. Jim McDermott (D-WA) and Rep. Trent Franks (R-AZ) "to examine methods by which the United States can maintain global leadership in the response to the epidemic." During the August recess, Members of Congress need to hear from their constituents (YOU) about why it is important that they join the Caucus...especially Republican lawmakers.

Not simply because the Republicans control the majority in the U.S. House of Representatives, but more importantly because HIV/AIDS is NOT a partisan issue. Since the Human Immunodeficiency Virus (HIV) doesn't ask people it is about to infect about their political party affiliation, it is incumbent upon our elected officials to combat HIV using the very same standard. Partisanship needs to be left out of the equation altogether.

At this very moment, Representatives Lee, McDermott and Franks are soliciting their House colleagues to join the Caucus, but they need to hear from people living with HIV/AIDS! Without a strong and consistent outcry from the community, many lawmakers might be left with the false impression that HIV/AIDS isn't a priority for the 112th Congress. Unfortunately, thus far only Democrats have joined the Caucus (although numerous GOP offices have been targeted and most likely will be joining).

Unless more House Republicans join the Caucus and together with their Democratic colleagues identify and support viable solutions, it [the Caucus] will be doomed to failure. It is especially critical that long-time GOP lawmakers with established records on HIV/AIDS join the Caucus. They include, just to name a few, Rep. Ileana Ros-Lehtinen (FL), Rep. Mary Bono Mack (CA), Rep. Frank Wolf (VA) or Rep. Kay Granger (TX).

With so many issues facing the country, unfortunately HIV/AIDS has been relegated to the back burner in many respects. The Caucus represents an excellent opportunity to change this paradigm. In the 112th Congress, the Congressional HIV/AIDS Caucus will explore five thematic areas:

• Implementation of the US National HIV/AIDS Strategy;

• Financing for Bilateral and Multilateral HIV/AIDS programs;

• The state of HIV/AIDS research;

• The role of Faith-Based Organizations; and

• The 2012 International AIDS Conference to be held in Washington, D.C.

While efforts to initiate the bipartisan Congressional HIV/AIDS Caucus should undoubtably be commended, it shouldn't be overlooked that this is being done at the very same time a record number of people living with HIV/AIDS are languishing on waiting lists under the AIDS Drug Assistance Programs (ADAPs). So...any Congressional effort to address HIV/AIDS-related issues should first focus on the domestic crisis facing 9,217 ADAP-eligible patients who are being forced to go without their life-saving medications, as well as the hundreds more who have been kicked off their State's ADAP by eligibility restrictions.

Is it rational to discuss research when thousands of people living with HIV/AIDS are being denied access to care and treatment? Does it make any sense for lawmakers elected to the U.S. House of Representatives by people living in the United States to address issues with an international focus without first taking immediate steps to alleviate the ongoing ADAP crisis? Doing so would only lessen credibility surrounding the Caucus' activities. There are people right here, right now who desperately need their elected officials to provide leadership, regardless of political party.

That is why the bipartisan Congressional HIV/AIDS Caucus needs to be just that...bipartisan!

Editor's Note: When contacting your Member of Congress about the bipartisan Congressional HIV/AIDS Caucus, tell them that to join the Caucus or for more information, please contact Jirair Ratevosian (Lee), Andrew Adair (McDermott) or Stephanie Hammond (Franks).

Housing Works: Super Committee Republicans Could Jeopardize AIDS Programs

The following blog is being shared compliments of Housing Works. CLICK HERE to view the original post.

From top left: Republicans Kyl, Portman, Toomey, Upton, Hensarling and Camp

Congress has just finalized the roster for the super committee—the group of lawmakers charged with charting much of the country’s fiscal future—meaning it’s time to examine how the committee’s decisions could shape AIDS programs in the U.S.

So far, we know this: The committee includes two of the most fiscally conservative Republicans in Congress, Sen. Pat Toomey and Rep. Jeb Hensarling. It also includes Sen. Jon Kyl, one of just three senators to vote against the Ryan White CAREReauthorization Act in 1995, legislation that extended funds for people with HIV/AIDS and their families.

“[The committee’s] decisions could have a profound impact on our programming for years to come,” said Ronald Johnson, vice president for policy and advocacy at AIDS United. “If deficit reduction is completely made up of spending cuts, that increases the possibility that there will be less money available for HIV-related programs, health care, and the safety net as a whole.”

The 12-person committee is charged with trimming the country’s deficit by $1.5 million during the next decade. The group will have few limits as to what it can do to reduce the deficit, meaning changes and cuts to programs critical to people living with HIV/AIDS will be on the table.

It’s unlikely that the committee will demand a reduction to a specific program like the AIDS Drug Assistance Program. Instead, larger decisions—like a cap on non-discretionary funding—would shrink the pool of money available to all programs, including money for ADAP, the Housing Opportunities for Persons with AIDS program, and the Ryan White program.

The committee can also make alterations to structure and funding for Medicaid and Medicare, and any changes will affect the growing number of people living with HIV/AIDS who depend them.

“The Democrats that have been named are defenders of our programs,” said Carl Schmid, deputy executive director at theAIDS Institute in Washington, D.C. “[Sen. Max] Baucus, [Sen. John] Kerry, and [Sen. Patty] Murray have all stood up for low-income people. But the Republicans that have been selected are all fiscal conservatives.”

Several Republican committee members, including Toomey and Henserlang, have already said they will focus on reducing the deficit by making deep cuts—instead of exploring new revenue options.

“I want to see people who are going to defend the safety net, who realize that balancing the budget on the backs of poor people is not going to be a successful strategy,” said Christine Campbell, Housing Works’ vice president of national advocacy and organizing. “And when these 12 look at Medicaid and Medicare, it’s got to be from the perspective of reform and not just cuts.”

The super committee:

Republicans
Rep. Dave Camp of Michigan
Rep. Fred Upton of Michigan
Rep. Jeb Hensarling of Texas
Sen. Jon Kyl of Arizona
Sen. Pat Toomey of Pennsylvania
Sen. Rob Portman of Ohio

Democrats
Rep. Chris Van Hollen of Maryland
Rep. Xavier Becerra of California
Rep. James Clyburn of South Carolina
Sen. Patty Murray of Washington
Sen. Max Baucus of Montana
Sen. John Kerry of Massachusetts

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• Posted by Julie Turkewitz , August 11, 2011 at 12:20pm