The ADAP Advocacy Association (aaa+), in partnership with the Community Access National Network (CANN), will host an "ADAP Solutions Summit" in Washington, DC on April 2-3, 2012. But why?ADAP waiting lists are nothing new; in fact, they date back to the program's inception but the scope of the modern day ADAP waiting lists is something entirely new. Previously, ADAPs were plagued with hundreds of people living with HIV/AIDS (PLWHAs) being denied access to timely care and treatment in a few states. Since 2009, ADAPs have encountered the "Perfect Storm" that has led to THOUSANDS being placed on waiting lists nationwide, as well as denied treatment because other cost containment measures have also exploded at the state level.
According to the National Alliance of State & Territorial AIDS Directors (NASTAD), in Fiscal-Year 2011 the National ADAP budget increased by $100 million to $1.88 billion. State funding accounted for $299 million over the overall budget and drug rebates accounted for $619 million of the overall budget. As a percentage of the increase, once again the federal government’s share did not keep pace with the demand, evidenced by a record number of new patients accessing the program (there were 32,522 new clients enrolled throughout the year. This represents, on average, 2,710 new clients enrolled in ADAPs each month). [1]
The Summit will focus on identifying numerous short-term and long-term solutions, including – but not limited to – increased federal/state funding, access to patient assistance programs, drug pricing & drug rebates, program efficiencies (i.e., eligibility determination), access to generics, etc. It will be headlined by a day-and-a-half roundtable comprised of fifty panelists representing the various ADAP stakeholder groups, including consumers, AIDS Service Organizations, pharmaceutical companies, PBMs, pharmacies, advocates and advocacy organizations, state agencies (corrections), State ADAP Directors, federal agencies (CMS, HRSA), and physicians.
The Summit is being moderated by Randy Russell, Lifelong AIDS Alliance. Confirmed panelists include: William Arnold, Community Access National Network (CANN); Paul Arons, MD, Fair Pricing Coalition; Fran Barnes-Melvin, ViiV Healthcare; Janine Brignola, Nebraska AIDS Project; Christine Campbell, Housing Works; Lynda Dee, Fair Pricing Coalition; Catherine Dratz, Abbott Laboratories; Jim Driscoll, AIDS Healthcare Foundation; Eric Flowers, Ramsell Holding Corp.; Darryl Fore, Cleveland Ryan White Part A Planning Council; Jesse Fry, Florida HIV/AIDS Advocacy Network (FHAAN); Jeff Graham, Georgia Equality; Edward Hamilton, ADAP Education Initiative; Dwayne Haught, Texas Department of Health, ADAP; Kathie Hiers, AIDS Alabama; James Howley, Abbott Laboratories; Brian Hujdich, HealthHIV; Michael Juhlin, Florida ADAP consumer, Jason King, AIDS Healthcare Foundation; Meeka Jackson, Centers for Medicare & Medicaid Services, Pre-Existing Condition Insurance Plans (PCIP); Diana Jordan, Virginia Department of Health, ADAP; Jeffrey Lewis, EHiM; Brandon Macsata, ADAP Advocacy Association; Ken McCormick, Janssen Therapeutics; Harold Orr, MD, Corizon; Deborah Parham-Hobson, U.S. Department of Health & Human Services, Health Resources & Services Administration (HRSA); Blaine Parrish, Georgetown University Medical Center, School of Public Health & Health Services; Murray Penner, National Alliance of State & Territorial AIDS Directors (NASTAD); Glen Pietrandoni, Walgreens; David Poole, Gilead Sciences; Christine Rivera, New York Department of Health, ADAP; Jessica Riviere, Bristol-Myers Squibb; Carl Schmid, The AIDS Institute; Elizabeth Shepherd, Monique's Hope for Cure; Corklin Steinhart, MD, Merck & Co.; Coy Stout, Gilead Sciences; Pritpal Virdee, Walgreens; Robin Webb, A Brave New Day; Andrea Weddle, HIV Medicine Association; Kimberly Williams, ViiV Healthcare; Joey Wynn, Broward House. Additional roundtable panelists are awaiting confirmation.
The Summit roundtable panelists will hear several "big sky" keynote speeches, as well as numerous smaller "concrete" presentations on how ADAPs can be improved to serve more PLWHAs in need. Keynote speakers include:
Other presentations will be delivered by Murray Penner of NASTAD on the ADAP Crisis Task Force, Jeff Lewis of EHiM on the Welvista Solution, Eric Flowers of Ramsell Holding Corp. on the Practicality of a Common Portal, Joey Wynn of Broward House on an Ideal ADAP Model, Eric Flowers of Ramsell Holding Corp. on Inmate Transition Serives, and Glen Pietrandoni of Walgreens on HIV Centers of Excellence.
Panelists will be charged with assisting aaa+ to identify 3-5 short-term and long-term systemic reforms, which will be included in a Final Report made available to policy-makers on Capitol Hill. The Final Report will reflect the views of aaa+.
The Summit is open to the public registration is only $99 for non-pharmaceutical attendees, and $199 for pharmaceutical company attendees. To register, or learn more about the Summit please visit http://www.adapadvocacyassociation.org/events.html.
[1] Source: 2012 National ADAP Monitoring Project Annual Report
ADAP continues to paint a false picture of the problem facing the HIV Positive. The ADAP list does not reflect the many thousands that can not apply for ADAP because their state has changed the eligibility requirements from 500% of federal poverty limit to 200% and does not reflect those "not in care" - having no access to medical treatment at all.
ReplyDeleteThis "unmet need" in some states is greater than 50% of the Positives. A footnote should indicate on the ADAP list the thousands in each state that are not receiving medicines!!!!!
(In our state, over 4,000 are without care, which is 70% of the HIV Positive in the state, while the ADAP list shows zero.)
Thanks Ann. Yours is an excellent point! In fact, we previously issued a press release on this very point: http://www.adapadvocacyassociation.org/pdf/2010_aaa_Press_Disenroll_Tip-of-the-Iceberg_11-15-10.pdf
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