ADAP Solutions Summit Seeks Answers

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:

Jeff Lewis, EHiM

The Honorable Tommy Thompson, former Governor of Wisconsin & former HHS Secretary (invited)

The Honorable Donna Christensen, MD, Delegate, U.S. Virgin Islands (invited)

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

Tell GILEAD Pharmaceuticals to reduce the cost of HIV medications now!

Referencing the latest figure from the National Alliance of State and Territorial AIDS Directors (NASTAD), as of March 8th, 2012, there are 3,949 individuals across 11 states on the AIDS Drug Assistance Program (ADAP) waiting lists. These individuals -- who are uninsured or underinsured -- have received an HIV + diagnosis, and are unable to properly access the drugs they need to remain alive, healthy, and productive.

In support of the following letter sent to GILEAD from the Fair Pricing Coalition, and signed by individual members, the FPC outlines it's concerns, and requests specific actions be taken by Gilead. Any interested individual or organization is welcomed, and encouraged to sign on. Please share WIDELY across your networks.

SIGN THE PETITION

It is essential that GILEAD understand the negative impact of their actions on people living with HIV/AIDS (PLWHAs). Since 2009, Gilead has raised prices three times each for Viread and Truvada for a total of 22.1% and 24.5% respectively; twice for Emtriva for a total of 15.3%,and agreed to four price increases on for Atripla, totaling 21%, and agreed to a 7.3% price increase for Complera. These increases are dramatically higher than the rate of inflation. They also come at a time when many people with HIV have lost their jobs, their employer-based insurance coverage and, in many instances, their ADAP coverage, all resulting in desperate patients attempting to access HIV drugs on the open market, a market plagued with constantly increasing drug prices.

As U. S. economic stagnation persists PLWHAs continue to lose jobs, income, health care benefits and ADAP coverage. At the same time, third party payers are imposing higher premiums as a direct result of escalating drug prices. Some patients have abruptly stopped treatment because they can no longer afford their medications. Although PAPs exist to help people who cannot afford medication, barriers to access are significant. Many people are unaware of the existence of PAPs. Others cannot cope with the labyrinth of multiple forms and requirements. Even with Gilead’s PAP eligibility at 500% of the Federal Poverty Level, a PLWHA earning $56,000.00 annually is not PAP eligible and will have to pay $20,000.00 or more to purchase Atripla at retail prices. This figure represents at least two-thirds of their net income.

The pharmaceutical industry’s extravagant price increases reverberate throughout the healthcare industry. They come at a time when many ADAPs are covering private insurance payments for their clients and result in ADAPs paying significantly increased premiums as a result of exorbitant price increases. This policy also results in higher premiums for people with HIV who are insured at a time when more and more people have less and less income due to unemployment, underemployment, reduced wages and reduced hours. Moreover, higher healthcare costs mean higher co-pays and pharmacy deductibles for people with private insurance and high share-of-cost plans, which also result in increased costs to patients as well as decreased benefits. More restrictive access within insurance plans affects the cost of drugs, but also ancillary services, such as mental health, prevention healthcare, rehabilitation and substance abuse services.

Escalating costs for private and employee healthcare plans occasioned by continuous drug pricing increases will undoubtedly have a deleterious effect on the states as they design their health care exchanges in preparation for the 2014 implementation of the Affordable Care Act (ACA). Many states are likely to set a minimum standard for drug coverage for their “essential health benefits” package that requires only limited coverage of antiretrovirals and other higher cost drug classes. Additionally, with non-preferred generic antiretrovirals entering the marketplace we are concerned that higher drug prices will increasingly result in key coverage decisions being driven by cost rather than the standard of care for HIV treatment.

Much of this crisis is occasioned by irresponsible pharmaceutical industry behavior. We firmly believe that Gilead’s price increases are particularly egregious because Gilead currently has the lion’s share of the antiretroviral market.

We believe that the best way to begin to address these issues is for industry to change its price increase practices and agree to the following:

- Gilead must agree to take no more than one CPI consistent price increase annually.

- Gilead must use its sales force to disseminate information regarding its PAP and co-pay programs.

- Gilead must contribute to foundations that provide co-pay program access to Medicare Part D clients.

- Gilead must cooperate with the FPC and other stakeholders in designing and implementing a seamless, industry-wide standardized PAP criteria and enrollment process.

Now is the time for Gilead to reconsider its price increase policy and rescind its latest unreasonable price increases. The FPC, it members and the undersigned sincerely hope that Gilead will agree to the above and we look forward to your immediate response.

Sign the Petition: http://www.change.org/petitions/tell-gilead-pharmaceuticals-to-reduce-the-cost-of-hiv-medications-now?utm_medium=facebook&utm_source=share_petition&utm_term=autopublish

Congress Makes the Grade; But More Work Needs to be Done

What a difference a year makes! When the ADAP Advocacy Association issued its 2011 Congressional ADAP Scorecard earlier this week, it yielded an overall favorable assessment on how the AIDS Drug Assistance Programs (ADAPs) fared last year in Congress. The scorecard demonstrated a marked improvement over last year because the vast majority of both the U.S. House of Representatives and U.S. Senate received passing grades; Republicans and Democrats both supported an additional $48 million in federal funding, which contributed to the improved rankings last year. The grades represented a complete reversal from 2010, when the entire Congress received a failing grade (which reflected how the partisan gridlock hampered progress on proven programs like ADAP).

House Members were evaluated using a 10-point scale and Senate Members using a 5- point scale. The House evaluation included Congressional HIV/AIDS Caucus membership, issuance of public statements on ADAP, support for the Hastings Amendment, support for H.R.1473, H.R.1774, H.R.2055, H.R.2954, H.R.3053 and H.R.3547, and finally opposition to H.R.1. The Senate evaluation included Congressional HIV/AIDS Caucus membership, issuance of public statements on ADAP, support for H.R.1473 and H.R.2055, as well as support for S.Res.162.

In the U.S. House of Representatives, 59 received a failing grade (or 13%) and 384 received a passing grade (or 87%); among the passing grades, 241 were issued a “Pass” grade, 122 were issued a “Pass with Honors” grade and 23 were issued a “Pass with Excellence” grade. Only Democrats received a “Pass with Excellence” grade. Among Republicans, 57 received a “Fail” grade, 182 received a “Pass” grade and one (1) received “Pass with Honors” grade. Meanwhile, 59 Democrats garnered “Pass” grades and 119 earned “Pass with Honors” grades. Two (2) Democrats failed under the rankings. Democratic Representative Henry “Hank” Johnson (GA-4) had the highest score among House Members with a nine rating (photo seen right). Democratic Representatives Raul Grijalva (AZ-7), Michael Honda (CA-15), Donald Payne (NJ-10), Adam Schiff (CA-29), Jose Serrano (NY-16) and Edolphus Towns (NY-10) scored an eight rating, while the following Democrats received a seven rating: Donna Christensen (Del-V.I.), Hansen Clarke (MI-13), Wm. Lacy Clay (MO-5), Stev Cohen (TN-9), John Conyers, Jr. (MI-14), Bob Filner (CA-51), Alcee Hastings (FL-23), Jesse Jackson, Jr. (IL-2), Barbara Lee (CA-9), Eleanor Holmes Norton (Del, D.C.), Mike Quigley (IL-5), Charles Rangel (NY-15), Laura Richardson (CA-37), Debbie Wasserman Schultz (FL-20), Maxine Waters (CA-35) and Lynn Woolsey (CA-6).

In the U.S. Senate, eighty-five (85) passing grades were issued to Senators as were fifteen (15) failing grades. Only two “Pass with Excellence” scores were issued (Republican Senator Johnny Isakson of Georgia and Independent Senator Bernard Sanders of Vermont, both seen below respectively). Among Republicans, 12 received a “Fail” grade, 32 received a “Pass” grade and three (3) received a “Pass with Honors” grade; Democrats had two (2) “Fail” grades, 35 “Pass” grades and 13 “Pass with Honors” grades.



The scorecard can be viewed online: http://www.adapadvocacyassociation.org/reportcard.html

Last year once again demonstrated the bipartisan support for ADAPs. Despite a budgetary climate on Capitol Hill focused on balancing the budget by reducing federal spending, it was a significant victory for ADAP stakeholders to garner the congressional support for more federal funding. While more work needs to be done to eliminate the ADAP waiting lists nationwide, 2011 represents a solid foundation by which progress can be achieved on this issue.