Tuesday, November 30, 2010

ADAP Tid-Bits...

The following are ADAP tid-bits of interest...

Post Election analysis

The 2010 midterm elections, characterized by most respected political pundits as a GOP tidal wave, swept into power a record number 63 Republicans to the House of Representatives and bringing their total to 242 seats - which is the most the GOP has held in more than 60 years. The Republican Party also gained a respectable 6 seats in the Senate, despite losing some marquee races headlined by Tea Party candidates where GOP-gains seemed eminent - including Colorado, Delaware and Nevada. The shift in power provides HIV/AIDS activists with some new opportunities, as well as some serious challenges. Among the emerging opportunities is the GOP's top two House leaders hailing from Ohio (Rep. John Boehner as Speaker) and Virginia (Rep. Eric Cantor as Majority Leader) where the political embarrassment of current ADAP waiting lists could force both lawmakers to seek additional funding, as well as the historical perspective that some of the largest ADAP funding increases occurred after the GOP was swept into power after the 1994 midterm congressional elections. But there remain significant challenges, such as Republican rhetoric to scale back recent health care reform legislation, and efforts by budget deficit hawks to scale back federal discretionary appropriations to 2008 levels.

The mere fact that the Democratic controlled-Congress did little to address the ongoing ADAP crisis, despite super majorities in both chambers of Congress coupled with a Democrat in the White House, has left the HIV/AIDS advocacy community splintered and divided. While in some instances congressional Republicans failure to support emergency supplemental funding, their minority status in both the House and Senate shouldn't have been a deterrent to Democrats seeking and approving a legislative remedy to the crisis. The lack of uniformity in the community's message has the potential to make successful advocacy efforts moving forward even more problematic. This is most clearly evidenced by certain groups and advocates putting their personal partisan preferences ahead of the lives of people living with HIV/AIDS more challenging to say the least.

Thus the success of HIV/AIDS advocacy during the 112th Congress will be left more so in the hands of local grassroots efforts, where most real change occurs. The next Congress is scheduled to meet in from January 3, 2011 to January 3, 2013.

World AIDS Day marred by record ADAP waiting lists

On what would typically be hailed as an opportunity to raise awareness about HIV/AIDS and celebrate progress achieved in fighting the disease, will ultimately be marred by the reality that more than 4,000 people living with HIV/AIDS in the United States have either been placed on waiting lists or denied treatment under the AIDS Drug Assistance Programs. Current ADAP waiting lists are nearly four-times higher than the levels reached during the previous crisis in 2004-05, under President George W. Bush. While President Barack Obama deserves credit for developing the nation's first-ever National AIDS Strategy, ending the HIV travel ban and supporting needle exchange programs, his record on ADAP is no better than his predecessor in the Oval Office.

The news just keeps getting worse, too! In Louisiana, beginning on December 1st, all persons receiving their medicines through Medicare/Medicaid will be allowed four prescriptions only. All other must have prior written authorization from a doctor, stating prescriptions are medically necessary. In Ohio, proposed changes include the removal of all local consortia activities (removal of client voices at the local level), and the institution of medical criteria (last proposed was to cut anyone that had never had their CD4 count drop below 200 during the course of their entire illness). In addition, ALL of activities funded by the PART B program could be subject to waiting lists as written, which could include areas of Medical Case Management, Prescription Drugs, Health Insurance, Emergency, Dental and Mental Health. Then there is Florida, where 350 ADAP clients will be disenrolled from the program early next year.

Lame Duck Session shaping-up to be...well, pretty lame!

With the Lame Duck Session of the 2nd Session of the 111th Congress already well-underway, many HIV/AIDS advocates are increasingly skeptical that a bipartisan agreement will be reached on the ADAP crisis. Despite behind-the-scenes dialogue between Democrats and Republicans, and House and Senate lawmakers, time is slipping away as more contentious political battles are being waged debating repealing "Don't Ask, Don't Tell" (DADT), extending the Bush-era tax cuts and ratifying the latest START Treaty with Russia.

Leading up to the Lame Duck, nearly 100 HIV/AIDS organizations sent a sign-on letter to President Obama and Members of Congress seeking the much-needed additional ADAP funding. The letter reads, in part: "We write to urge you to address the immediate crisis in the AIDS Drug Assistance Program (ADAP) funding as well as ensuring ADAP is fully funded for Fiscal Year (FY) 2011. Across the nation, individuals, families and states are in economic crisis; lost jobs have led to even more restricted access to health insurance. Individuals living with HIV/AIDS also carry a unique burden as they seek viable treatment options during this severe economic downturn. Not surprisingly, the burden on ADAP, which provide medications to underinsured and uninsured Americans, has also significantly increased and federal funding has not kept pace." READ LETTER HERE

Certain Members of Congress have used the Lame Duck to call attention to HIV/AIDS, especially as it relates to funding for the next federal fiscal year.

On November 12th, 14 House Democrats penned a letter to House Appropriations Committee Chair David R. Obey and Ranking Member Jerry Lewis seeking additional HIV/AIDS funding for Fiscal Year 2011 during the Lame Duck Session. The letter was endorsed by Barbara Lee (CA-9), Jose E. Serrano (NY-16), Lucille Roybal-Allard (CA-34), Sam Farr (CA-17), Michael M. Honda (CA-15), Tim Ryan (OH-17), Debbie Wasserman Schultz (FL-20), Maxine Waters (CA-35), Henry A. Waxman (CA-30), Tammy Baldwin (WI-2), Donna M Christensen (USVI), Jerrold Nadler (NY-8), Mike Quigley (IL-5) and Jesse L. Jackson, Jr. (IL-2). As part of the letter, they requested an additional $50 million in ADAP funding.

On November 23rd, Rep. Lee (who is widely-recognized as a champion of HIV/AIDS-related issues) followed with another statement, which read, in part: "As we recognize World AIDS Day on December 1st and consider the significance of these new developments, we must be mindful that how we respond to this news today will define the course of the global pandemic for years to come. The release of the first ever National AIDS Strategy by President Obama earlier this year, combined with the return of the International AIDS Conference to the United States in 2012, after a 21 year boycott, will shine an international spotlight on our country's global response to this disease over the next two years. With over 4,157 people across nine states currently on waiting lists for lifesaving AIDS treatment in the United States and nearly 10 million HIV positive people around the world still in need of treatment - we must not let our commitment to fighting this pandemic falter or our resolve fail."

It remains to be seen whether what, if anything, will be accomplished on ADAP for the current federal fiscal year, or the next one.

Heinz-Welvista solution

aaa+ is pleased to announce that it is partnering with the Community Access National Network and ADA National Network to host an educational virtual training conference on the Heinz-Welvista Solution to the ongoing ADAP crisis. The online training, which will be held on Monday, December 6th from 2:00 - 3:30 pm (EST) is free to all interested parties who want to gain a fuller perspective from the Heinz Family Philanthropies and Welvista Pharmacy about how their solution can address the many issues confronting people living with HIV disease on wait lists. LEARN MORE...

Passing of our friend, colleague and hero...Randy Allgaier

The ADAP Advocacy Association celebrates the life of longtime HIV/AIDS advocate, Randy Allgaier, who passed away over the weekend! Randy was an inspiration to everyone who knew him, and a mentor to many of us within the HIV/AIDS community. Randy will be missed, but never will we forget him! For anyone who knew Randy Allgaier either personally or professionally, they would undoubtedly agree that he was a one-in-a-million. As devoted husband to Lee Hawn, an avid policy wonk on public health for and employment of people living with HIV/AIDS and devoted champion of LGBTQI-equality, Randy touched the lives of countless people, no matter what he was doing. Despite adversity, including living with HIV/AIDS, Hepatitis C and Anal Cancer, Randy never let the world around him pause about his ongoing commitment to make the world a better place.
Earlier this year, Randy was a keynote speaker during the aaa+ Annual ADAP Summit. He discussed the good, bad and ugly surrounding the new health care reform law, especially as it relates to people living with HIV/AIDS. Not surprisingly, according to feedback that we received during the Summit, attendees found Randy's presentation and remarks extremely helpful.

[Photo from left to right: Amanda Kornegay, Brandon Macsata, Joey Wynn and Randy Allgaier]

Words cannot describe the loss that so many people are feeling, yet coupled with a true sense of celebration knowing that Randy touched us all. Per Randy's husband Lee, Randy's body will be cremated and his ashes scattered as per his wishes. There will be a gathering of friends and family at a later date still to be decided.

Randy - You will be missed!

Wednesday, October 27, 2010

Finding Solutions to the ADAP Crisis Should Unite Us, Not Divide Us

The ADAP Advocacy Association believes that the ADAP Crisis should be uniting the HIV/AIDS community, and not dividing it. As more and more people linger on ADAP waiting lists, it seems that differences over "tactics" has garnered more attention than what is trying to be achieved...ending the wait and saving lives!

On September 4th, aaa+ took its efforts to promote the AIDS Drug Assistance Program and raise awareness about the vitally important role ADAP plays in the lives of people living with HIV/AIDS to a new level when it filmed the first-ever public service announcement (PSA) about ADAPs. Armed with Emmy-Award winning producer, Neil Romano of The Romano Group (who was involved in the production of the very first HIV/AIDS-related PSA back in the 1980s, as well as the successful 'Just Say No' anti-drug campaign), filming included Bill Arnold of the Community Access National Network, Ann Lefert of the National Alliance of State & Territorial AIDS Directors, Christine Campbell of Housing Works, as well as three PLWHAs with personal experience on ADAP - including Michelle Anderson of C2EA Dallas (who is on the Texas ADAP), Robert Breining of POZIAM.com (who is on the Pennsylvania ADAP), and Nick Rhoades of the Community HIV/Hepatitis Advocates of Iowa Network (who is on the Iowa ADAP). Romano has agreed to produce two separate videos, with the first being a 5-7 minute video clip designed for the Internet to be spread virally via the World Wide Web, while the second will be a traditional 30-60 second spot for television, in which he has agreed to help us secure earned media for its placement in select markets! This approach to raising awareness about the ADAP crisis is far different than what other national groups are doing here in Washington.

aaa+ is pleased to announce that it is partnering with the Community Access National Network and ADA National Network to host an educational virtual training conference on the Heinz-Welvista Solution to the ongoing ADAP crisis. The online training, which will be held on Monday, December 6th from 2:00 - 3:30 pm (EST) is free to all interested parties who want to gain a fuller perspective from the Heinz Family Philanthropies and Welvista Pharmacy about how their solution can address the many issues confronting people living with HIV disease on wait lists. LEARN MORE...

On December 2nd, aaa+ will team-up with CANN to host yet another Congressional Briefing on the ADAP crisis. The briefing will be held in the Cannon House Office Building, with additional details to follow in the coming weeks. But efforts are underway to strike a bipartisan, bicameral deal to secure the additional $101 million to alleviate the exploding ADAP waiting lists!

While most of the news during this year-long struggle to combat the ADAP crisis hasn't been so great, it is nice from time-to-time to recognize the good news. Today, the Southern AIDS Coalition issued a press release praising the advocacy efforts in Kentucky toward eliminating that state's ADAP waiting list. aaa+ would like to echo SAC?s praise! The press release read, in part: "The targeted plan to eliminate their ADAP waiting list linked a number of components that included leveraging pharmaceutical rebate dollars negotiated by NASTAD's ADAP Crisis Task Force, support of 1.7 million from President Obama's emergency funding, ADAP supplemental funds, redirecting of monies from the Part B Base funds and a variety of innovative cost saving strategies. Officials were also very resourceful in identifying and seeking alternate 'out-of-the-box' payer sources for eligible clients."

Thank you Kentucky for providing an excellent example of effective, nonpartisan, multi-level leadership!

While Ryan White - especially Part B, or formerly Title II - has long enjoyed bipartisan (or as some would argue, nonpartisan) support, somehow that reality has eluded the crisis facing the cash-strapped ADAPs. With the waiting lists exploding to record levels as World AIDS Day draws closer, how embarrassing would it be for the United States to have 5,000 ADAP patients waiting to access the very life-saving medications that we know keep them healthy, productive members of their communities? Both political parties, both the executive and legislative branches of government and both chamber of the U.S. Congress shoulder the blame! HIV/AIDS does NOT question its next possible infected individuals about their party affiliation, so the response to the ADAP crisis - or any HIV/AIDS-related issue for that matter - should not be hampered by partisan bickering, or maneuvering.

If the Democrats prefer using supplemental funding to solve the crisis, then they should be willing to compromise! Likewise, if the GOP wants to tap into unspent stimulus funding dollars to solve the crisis, then they should be willing to strike a deal! What about splitting the difference using $50.5 million in supplemental funding and $50.5 million in stimulus funding, and that way both political parties can claim victory. But since the people living with HIV/AIDS on the ADAP waiting lists care little about who gets the "credit" for solving the problem, they would simply be happy knowing that all of the treatment options are available to them once again! Novel concept?

The ADAP Advocacy Association will continue to monitor the crisis. Thanks for your ongoing interest and support!

Thursday, October 21, 2010

AIDS Activists Protest Stalled Leadership on ADAP Crisis

AIDS Activists Protest Stalled Leadership on ADAP Crisis

This week, HIV/AIDS advocates from across the country ascended on Washington, DC to express their dissatisfaction with President Obama, Senate Majority Leader Reid and House Speaker Pelosi and their failure to solve the crisis facing the AIDS Drug Assistance Programs in nine states. With ADAP waiting lists exploding to nearly 3,500 people living with HIV/AIDS as the backdrop, events included a press conference at the National Press Club, and demonstrations in front of the White House and a Victory Fund event honoring Pelosi. The AIDS Healthcare Foundation ("AHF"), Community Access National Network ("CANN"), Campaign to End AIDS ("C2EA"), Housing Works and aaa+ organized the events. But the real heroes of the week were Jeffrey Voyles, Steven Aubrey Dimmick, Ricky Lanza and Larry Cook, who each shared their personal experience at the community level and how it is impacting their lives.

Leading up to the events this week, however, President Obama was dogged by protestors in Philadelphia and New York City while campaigning for embattled Democrats. ACT UP led the protest in Philadelphia, calling attention to the 138 people on wait lists for housing in Philadelphia, as well as the 3,441 people on wait lists for medicine across the United States. In NYC, activists yelled slogans and held signs aloft reading "Obama broken promises KILL." At both events, President Obama almost seemed annoyed that the demonstrations were happening, repeatedly saying that funding for AIDS programs had gone up under his leadership.

"As a person with AIDS, I'm always waiting for the other shoe to drop," said ACT UP member Duane Kaufman. "If activists hadn't fought so we could have medicine, I wouldn't be alive today. And if I didn't have housing, I wouldn't be able to take my medicine every day. I'm afraid of losing my housing and losing access to medicine if politicians don't keep their promises" (ACT UP Philadelphia press release, 09/20).

Not even HHS Secretary Kathleen Sebelius was sparred during her speech at the US Conference on AIDS. Chants of "don't let us down, don't let us die", echoed through the lunch plenary as activists and people living with HIV from Florida, Georgia, North and South Carolina, and other Southern states, including members and staff from AIDS Action in Mississippi, the Campaign To End AIDS, Housing Works, AIDS Healthcare Foundation, N.E.E.D. Inc., and others joined in. CLICK HERE to watch the video.

On September 23rd, CANN and aaa+ were joined by the Congressional Black Caucus Health Braintrust to host yet another congressional briefing on the ADAP crisis. Speakers included Sen. Richard Burr (R-N.C.), Representative Donna Christensen (D-V.I.), Doctor Todd Wills, who is an Associate Professor of Internal Medicine, Division of Infectious Disease and International Medicine at the University Of South Florida College Of Medicine, Ann Lefert from the National Alliance of State & Territorial AIDS Directors ("NASTAD"), Arch Bishop Joyce Turner Keller from Aspirations in Baton Rouge, Louisiana, and Amy Bell May, who was on South Carolina's ADAP waiting list up until recently. The congressional briefing received excellent press in stories by CQ HEALTHBEAT NEWS and Political Brief.

Earlier that week, ADAP was also front and center during the Congressional Black Caucus Foundation's annual conference in Washington, DC. Writing for the DC Examiner, Candace Y.A. Montague's "AIDS strategy answers few questions at Congressional Black Caucus" discussed some of the anger behind the crisis.

Efforts remain underway to persuade Congress to find the necessary funding to eliminate the ADAP waiting lists, especially since the $25 million reallocated by the Obama Administration proved to be insufficient. In the U.S. House of Representatives, Congressman Alcee Hastings (D-Fla.) took to the House floor to express his support for the AIDS Drug Assistance Program, and followed with a letter urging Democratic Leadership to address the ADAP funding crisis. Unfortunately, Hastings only requested $25 million in emergency supplemental funding - an amount far short of the missing $101 million necessary.

In the meantime in the U.S. Senate, Senator Chuck Grassley (R-Iowa) endorsed S.3401, "The ACCESS ADAP Act," as a cosponsor. Sen. Grassley sent a "Dear Colleague" letter with Senators Tom Coburn (R-Okla.), Richard Burr (R-N.C.), Mike Enzi (R-Wyo.) and George LeMieux (R-Fla.) which read, in part, "While the Administration recently provided $25 million to address this growing problem, we remain concerned that this amount will not adequately cover all of the cost of providing treatment to the growing list of individuals and fully address ADAP needs through the end of Fiscal Year 2010. The ACCESS ADAP Act transfers $126 million of unobligated discretionary stimulus dollars to the Secretary of Health and Human Services to reduce the ADAP waiting lists and address the other cost-containment measures State ADAPs have taken."

Unfortunately, partisanship outflanked policy as Congress adjourned before doing anything about the ADAP crisis. It seems that Members of Congress are more concerned with saving their own jobs rather than finding the missing $101 million that would end the wait and provide life-saving medications to the nearly 3,500 people living with HIV/AIDS in nine states.

The ADAP Advocacy Association will continue to monitor the crisis. Thanks for your ongoing interest and support!