The ADAP Advocacy Association (aaa+) is pleased to share its April 2010 edition of the "ADAP Pill Box" - a monthly e-publication focusing entirely on issues relating to the AIDS Drug Assistance Programs (ADAPs). aaa+ invites you to share the ADAP Pill Box by forwarding it to your friends and colleagues, and encouraging them to join aaa+ on our our website. Tell them that our individual membership is free. Also, please feel free to forward appropriate ADAP-related news items to info@adapadvocacyassociation.org so that we can include them in the next edition.
The ADAP waiting list crisis is getting worse by the week, but ADAP stakeholders nationwide are not taking anything for granted as they continue to push for an FY2010 ADAP Emergency Supplemental in the amount of $126 million. Meetings, conference calls, emails and action alerts are all being done with one consistent message to the President and Congress: END THE WAIT!
On April 8th, aaa+ weighed in on the debate, issuing an 'Open Letter' in the form of a video on YouTube to President Obama urging him to support the emergency FY2010 supplemental appropriation of $126 million for the AIDS Drug Assistance Program. The video offered an historical perspective to the plight facing hundreds of Americans currently on ADAP waiting lists in thirteen states (as of March 26th). WATCH YOUTUBE VIDEO.
On April 27th, aaa+ board member Robert Breining published his "ADAP Saves Lives -- President Obama, End the Wait!" blog in TheBody.com. READ ROBERT'S BLOG .
On April 29th, aaa+ joined a growing chorus of national, state and local organizations sending out action alerts. The action alert asked supporters to either call the White House, or send an email to the Office of National AIDS Policy urging President Obama to provide $126 million in emergency funding for the AIDS Drug Assistance Programs.
Then there is the unfolding saga on Capitol Hill.
The House of Representatives is currently circulating a letter seeking signatories that will be sent to President Obama urging the Administration to support the FY10 ADAP Emergency Supplemental. The letter, in part, reads:
"Despite the rapid clip at which HIV infections continue to spread, the Congress has failed to enable The Ryan White CARE Act to grow apace with the epidemic and ADAP has been severely underfunded or even experiencing funding cuts over the past several years. This is most visibly demonstrated by the exponential growth of ADAP wait lists since January of last year. This ongoing funding shortfall has created deep structural problems in the Ryan White Appropriation from the federal government. On April 16, 2010, national data showed 938 people on ADAP waiting lists with serious warnings that this population would be increasing rapidly. From three states maintaining wait lists in January 2009, we have increased to 10, and there are additional cost containment measures already in place or expected shortly in 21 total states. The public wait list is only the tip of the iceberg and remains a very last resort for most states, often times preceded by reduced formularies and cuts to eligibility levels in order to avoid the creation of a wait list. By policy, some states do not allow the public to see an official ADAP waiting list. Additionally, the $167 million in state budget cuts to AIDS programs in 2009 has truly shaken the ADAP program. In 2000, Congress appropriated 72% of total ADAP expenditures; and this percentage has now declined to 51% in 2009. This staggering drop in federal commitment to ADAP in addition to state budget crises has largely been the catalyst for the most recent spike in HIV wait lists."
The House letter to President Obama is expected to be sent soon. Unfortunately, Republicans appear poised to boycott the letter because the GOP Caucus agreed to oppose supplemental budget requests and earmarks.
But days earlier on April 22nd, Senators Mike Enzi (R-WY), Richard Burr (R-NC) and Tom Coburn (R-OK) sent a letter to Health & Human Services Secretary Kathleen Sebelius regarding the ADAP crisis. In light of the growing waiting lists, they asked the following questions:
What, if any, action is the Department taking to address the ADAP waiting lists and ensure that States are able to fulfill the needs of their HIV/AIDS patients?
Does the Department need additional statutory authority to ensure sufficient flexibility to address the ADAP waiting lists without depending upon Congress to appropriate additional funding? If so, what specific authorities would help address the current situation and prevent similar situations from occurring in the future?
Recently, the City of San Francisco received $9.5 million in stimulus funding for AIDS office space renovations. Has the Administration considered funding the waiting lists with remaining stimulus dollars, considering the reason for the waiting lists are budget shortfalls caused by the economic downturn?
Senate Democrats, meanwhile, are already working toward a solution to prevent the repeat of the waiting list crisis next year. They have embraced the need for additional funding for numerous domestic HIV/AIDS programs in the Fiscal Year 2011 Labor-HHS-Education, Transportation-HUD and Financial Services appropriation bills. On April 15th, fourteen Senate Democrats sent a letter to Senate Appropriations Committee Chair and Ranking Member, Sen. Daniel Inouye and Sen. Thad Cochran, respectively, asking for an increase of $370 million for Part B AIDS Drug Assistance Programs, among other things. That letter was signed by Senators Kay Hagan (NC), Kristen Gillibrand (NY), Barbara Boxer (CA), Roland Burris (IL), Robert Casey (PA), Russ Feingold (WI), John Kerry (MA), Frank Lautenberg (NJ), Carl Levin (MI), Joseph Lieberman (CT), Jeff Merkley (OR), Bernie Sanders (VT), Charles Schumer (NY) and Debbie Stabenow (MI).
Despite the strong push for the FY2010 ADAP Emergency Supplemental, there are other strategies being pursued nationwide to help out ADAP patients on waiting lists (some of which are included in this month's e-newsletter). Among them is the free virtual training application.
It is not too late to register for the ADAP VIRTUAL TRAINING APPLICATION: Linking AIDS Drug Assistance Programs to Pharmaceutical Prescription & Co-Payment Assistance Programs. aaa+, in coordination with the Community Access National Network (CANN), Flowers Heritage Foundation (FHF), National Alliance of State & Territorial AIDS Directors (NASTAD) and National Network of ADA Centers (DBTACs) - which all work to ensure access to care and treatment for every person with HIV in need - is extending this invitation to all ADAP Stakeholders to gain a fuller perspective from the pharmaceutical companies about how their prescription assistance and co-payment assistance programs can address the many issues confronting people living with HIV disease on wait lists.
Registration is FREE, but you must RESIDE OR WORK IN one of the states with an ADAP waiting list or other cost containment measures to register. A virtual conference platform provides the most accessible conferencing and collaboration experience available, anywhere in the country. No new hardware is needed. All you need is a PC with a soundcard, headset, and a high-speed connection to the Internet; and you can hold fully accessible, 508 compliant online conferences from your desktop.
The remaining ADAP VIRTUAL TRAINING APPLICATIONS include (subject to change):
May 5 - North Carolina & South Carolina
May 11 - Florida & Nebraska (TUESDAY)
May 19 - Montana & South Dakota
May 26 - Tennessee
June 1 - Hawaii & Utah (TUESDAY)
June 9 - Idaho & Wyoming
aaa+, recognizes that the ADAP waiting list crisis in ever-changing, so the schedule for the ADAP VIRTUAL TRAINING APPLICATION is subject to change. In the meantime, aaa+, invites you to learn more and register online today at http://www.adapadvocacyassociation.org/events.html.
For more information about the ADAP VIRTUAL TRAINING APPLICATION, please contact Brandon Macsata at info@adapadvocacyassociation.org. Thank you.
Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)
P.S.
Mark Your Calendar! The ADAP Advocacy Association's 2010 Annual Conference will be held in Washington, DC on July 5-7th.
Also, SYNChronicity 2010 is a meeting connecting primary care providers to national HIV thought leaders, new technologies, and resources to expand their HIV practices. SYNC2010 is also a forum for HIV care providers to interact with those in primary care to coordinate efforts developing HIV medical or, health, homes. To register please visit http://www.healthhiv.org or email synchronicity@healthhiv.org to learn more.
The ADAP Advocacy Association is a proud community partner of Washington, DC's "The Cherry Fund" - which is an independent, all-volunteer 501(c)(3) foundation whose sole purpose is to raise funds for the HIV/AIDS youth service community. The Fund focuses on organizations combating the spread of HIV infection & AIDS through prevention, treatment, and education in the nation's youth community. Learn more at online at http://www.cherryfund.org/.
Advocates were once again underwhelmed by the lack of new information released about the actual National HIV/AIDS Strategy.
"It's great they're continuing to keep us updated. Hopefully next time we'll have more information to work with and see if community input is really being taken into effect," said Housing Works Vice President of Advocacy and Organizing Christine Campbell.
According to Office of National AIDS Policy Director Jeff Crowley, who spoke on the conference call, yet another summary of community feedback will be coming soon from Department of Health and Human Services, which held its own forums. He described it as "very different" from the ONAP report.
While today's report wasn't groundbreaking, ONAP Policy Director Greg Millett promised the real national strategy plan will have teeth. "The thing that distinguishes [this National HIV/AIDS Strategy] from other mechanisms is that this is coming straight from the White House and straight from the President," Millett said, in a half-hour conference call about the report's findings today.
The report was drawn from a total of 1,089 submissions, including 719 from the ONAP website. According to the report, 4,285 people attended the community discussions. Almost half of those people, approximately 1,875, were from the meeting in Atlanta at the CDC HIV Prevention conference.
The actual completed National HIV/AIDS Strategy will be created by a taskforce of government employees at a date to be announced.
In the White House report released today, the themes that emerged were:
Create a National Campaign to Increase Public Awareness and Prevention of HIV
Increase Prevention Efforts Among Youth
Routinize, Increase, and Improve Testing
Increase Access to Condoms
Eliminate the Ban on Federal Funding for Syringe Exchange
Increase Harm Reduction and Treatment Adherence Education
Improve and Expand Surveillance Data
Expand Support Services
Include Chronic Disease Management in Overall Health Care Delivery
Recognize and Treat Co-occurring Conditions
Increase the Number of HIV Care Providers and HIV/AIDS Education and Training
Expand Services to At-Risk Populations
Provide Culturally and Linguistically Appropriate Services and Interventions
Improve Availability of HIV-Related Services in Rural Areas and U.S. Territories
All of these objectives will not all appear in the National HIV/AIDS Strategy, according to Millett. "To be effective, the strategy must include a small number of high payoff items that will address the HIV/AIDS epidemic in the United States. Nevertheless, we intend for this community report to provide a baseline for the status of the domestic epidemic and serve as a planning tool and resource for Federal, State and local agencies," Millett wrote in a blog post.
ADAP Update
In addition, Crowley gave a non-answer to an audience question by Dab Garner asking if Obama will approve $126 million in emergency funding to the AIDS Drug Assistance Program.
[Photo: Jeff Crowley during listening session.]
"We're aware and monitoring the growing challenge of ADAP," Crowley said. "As we see pressures arise at the state level, we're definitely monitoring the situation."
According to a report released by the National Alliance of State & Territorial AIDS Directors today, the number of people on ADAP waiting lists has risen to 859 people in 10 states.
A total of $652 million will pay for primary care and support services for individuals living with HIV/AIDS under Part A of the Ryan White program. Part A awards are distributed to eligible metropolitan areas with the highest number of people living with HIV/AIDS and to transitional grant areas experiencing increases in HIV/AIDS cases and emerging care needs. The Part A awards include $44.8 million for the Minority AIDS Initiative. For a list of Part A awards, visit http://newsroom.hrsa.gov/releases/2010/parta.htm.
More than $48.1 million will fund early intervention services that support medical, nutritional, psychosocial and other treatments for HIV-positive individuals. These grants, awarded under Part C of the program, go to community-based organizations such as health centers and nonprofit providers of primary health care for people living with HIV.
Part C grants also may be used to hire case managers to help patients access care and remain in treatment. Additional Part C grants will be awarded this July. For a list of Part C awards, visit http://newsroom.hrsa.gov/releases/2010/partc.htm.
Seventy-five percent of Part A, B and C funds must be spent on "core medical services," which include outpatient health services, drug assistance, health insurance payments and medical nutrition therapy. The remaining 25 percent pays for support services that help people living with HIV/AIDS achieve desired medical outcomes. These services include but are not limited to respite care, medical transportation and linguistic services.
For information from about HIV/AIDS prevention, testing, treatment, research, and use of new media in response to HIV/AIDS visit http://www.aids.gov.
ViiV Healthcare believes it is critical to inform people about access to HIV medicines through patient assistance programs like Bridges to Access. We will work alongside NASTAD and other groups to ensure patients, case workers, and others involved in assisting those on ADAP waiting lists are aware that our program is available. Information about the eligibility requirements for other patient assistance programs can be found by contacting the Partnership for Prescription Assistance at 1-877-477-2669 or by visiting http://PPARx.com.
About ViiV Healthcare: ViiV Healthcare is a global specialist HIV company established by GlaxoSmithKline (NYSE: GSK) and Pfizer (NYSE: PFE) to deliver advances in treatment and care for people living with HIV. Our aim is to take a deeper and broader interest in HIV/AIDS than any company has done before and take a new approach to deliver effective and new HIV medicines as well as support communities affected by HIV. GSK holds an 85 percent interest in the ViiV Healthcare and Pfizer holds 15 percent. GSK and Pfizer announced that they had agreed to form a new specialist HIV company on April 16, 2009. The transaction was completed on October 30, 2009. ViiV Healthcare launched on November 3, 2009.
For more information on the company, its management, portfolio, pipeline and commitment, please visit http://www.viivhealthcare.com.