ADAP Solutions: A Consumer Perspective

By Kevin Maloney

On April 2nd & 3rd, the ADAP Advocacy Association (aaa+) hosted its ADAP Solutions Summit to identify improvements and reforms that could enhance the AIDS Drug Assistance Program (ADAP). As a consumer of ADAP services, I found these 2 days -- which brought consumers, industry, advocates and other stakeholders to the same table for the first time -- to be very productive. I met many folks, some consumers, some not, but all with one commonality; all indebted to the cause of helping ensure that every American has access to the care and treatment they need to remain alive, healthy, and productive. At no point was anyone's intentions or commitment called into question, and that is the way it should be done!

As a consumer of ADAP services, I want to touch on the aspects of some of the proposed enhancements that I feel could have an immediate impact by bringing more people into care, coinciding with President Obama's goals set forth in the National AIDS Strategy (NAS). Before I do so, I feel obliged to share with you my brief personal story.

The date of March 3rd, 2010, will be etched into my mind for the rest of my life. My doctor called me, and said “Kevin, I need you to come into the office.” When I walked into his office, and the receptionist staff was dead silent, they couldn’t even look me in the eyes. My doctor laid a paper down in front of me and it read; PCR by DNA HIV – Reactive. I tested positive for HIV-infection. I was asked how I felt psychologically, and I said “fine” (even though I was scared), and then I left the office.

Immediately after leaving his office, I started to put an action plan into place. First, I called Callen-Lorde (a CBO in NYC), and was offered an appointment the very next day. Then I called my HR department where I was working, to find out about taking a leave of absence. I learned of the Family Medical Leave Act (FMLA), and under this federal law it allowed me the time off that I needed to get to my doctor appointments, begin my chosen Anti-Retroviral Therapy (ARV), seek out support, and to learn everything that I could about living with this disease.

A month later with follow up labs, I was then told I had Hepatitis C, genotype 1a. WHAT?!? I felt like someone punched me in the stomach, and I fell to the floor, because this diagnosis through me for a loop. My doctor said is mainly contracted by people who share needles; I wasn’t an intravenous drug user (IDU) in my instance it piggy backed onto the HIV-infection. Now I was angry; how could this happen to me? I knew nearly NOTHING about this disease. So, I went home to read more about it, and found out I could clear the virus. I found a doctor in NYC , and soon after I began the dreaded interferon + Ribavirin therapy. At the forth week, I had a sustained virologic response, and at the 6 month post-treatment, I still had an SVR, I have cured Hepatitis C.

During this time of personal distress I coined the phrase “Rise up To HIV.” It started out as a personal platform to tell my story, and has since morphed into a personal AND advocacy platform. At a time when I could have given up, I chose to rise up, stand out, and speak up about my dual diagnosis, and about issues facing the community of 1.2 million people living with HIV/AIDS, including those who are co-infected with Hepatitis C that I belong to.

I can say that I am alive today; equally important, I am healthy because of the AIDS Drug Assistance Program granted me access to the life-saving medications that I needed to survive. As ACT UP celebrates its 25th anniversary, it is hard not to see ADAPs existing today. Many individuals and leaders got fed-up with watching dozens upon dozens of their friends and loved ones die. They themselves -- some of them on the brink of death -- started a movement to recognize AIDS and to demand treatment and services for those infected with the disease. To them, I say "thank you." We have you to thank for the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, as well as the AIDS Drug Assistance Program was formed.

There are thousands more PLWHAs who share similar stories, or ones even more dire.

Today, ADAP is facing the "Perfect Storm" and some would even suggest that it is in grave danger. If full funding for ADAP and other vital HIV/AIDS services is not restored to the levels of the law's legislative intent, and increased to keep up with the demand, then we WILL have flashbacks to the 1980s and 1990s; people will be dying. This time, not because we have no medicine to treat the disease, but because we don’t have the funding to provide it to everyone who needs it.>p> Currently, there are over 3,000 people across 10 states on ADAP wait-lists. Though this number does not reflect individuals in states that have reduced financial eligibility, or capped enrollment, it provides a very public face for the crisis. I’ll share with you some scary statistics:

1.2 million Americans (believed to be much higher) are living with HIV/AIDS;

Of these 1.2 million, it is estimated that only 20 percent of PLWHAs are receiving care and treatment;

Approximately 20 percent of HIV-infected Americans do not know they are infected;

Only 28 percent of PLWHAs have undetectable viral loads in the United States; and

1 in 3 PLWHAs are co-infected with Hepatitis C.

We are facing a public health crisis, unseen since the epidemic began. The weak economy has crippled state budgets that pay into ADAP, and the federal government's commitment as a share of total spending on the program has declined over the last 5-6 years. In addition, prevention initiatives and other supportive services such as HOPWA funds have dried up in communities across the nation.

Further, many states have employed cost containment strategies, such as reduced formularies, lowered financial eligibility levels, implemented client cost sharing, or program enrollment caps. These strategies have disqualified individuals who would have previously qualified for ADAP.

Without reliable access to the medications, which cost patients under the AIDS Drug Assistance Program an average of less than $10,000 a year, PLWHAs are more likely to acquire opportunistic infections, develop full-blown AIDS, transmit the virus and require expensive hospitalizations, and even die.

On May 12th, 2011, the University of North Carolina at Chapel Hill led an international study that showed early treatment with antiretroviral therapy prevents HIV transmission. The result of the study (HPTN05) was that those taking ARV were 96 percent less likely to pass on the disease than those who didn’t take ARV. This critical new finding convincingly demonstrates that early treatment of infected individuals can have a major impact on the spread of the epidemic.

Combined, the advanced scientific studies, new treatment guidelines, and new prevention messages/campaigns at the national, state, and local level are increasing the demand on ADAPs. That demand is far outpacing the required funding to meet the needs of PLWHA. It is fueling this crisis, but it has to stop now! HIV/AIDS is still a communicable and deadly disease, and our government must continually remind themselves of these facts and provide the adequate funding to provide proper treatment to those already infected, while also preventing the spread of the virus to others.

As a consumer who has self-maneuvered the complexities of the ADAP system, I want to highlight the enhancements talked about during the ADAP Solutions Summit. I believe that they will be most beneficial to bring more people into care, and retain those already receiving ARVs.

Uniform FPL eligibility at 500% for ALL ADAPs in all states, Territories, and Dependencies

Utilize peer navigators

Increased education in the community on ADAP, Patient Assistance Programs and co-pay assistance, as well as insurance continuation programs administered under ADAP

Utilize Social media at the federal, state, and local level to improve access to information

Face to face access to a pharmacist, instead of mail order, and pharmacy of choice

Development of a common portal with the ability to be client driven

Recertification to happen every year, instead of every 6 months and more user friendly

Co-Infected individuals should have access to Hepatitis C drugs through ADAP

ADAPs should help pay deductible spend down for people with private insurance

If a client moves to another state, the old state ADAP should provide 90 days’ worth of medications prior to termination to allow a smooth transition to the new state

ADAPs should take into consideration Net Income, NOT Gross Income to determine financial eligibility

Fortunately I now live in Washington, DC and I was living in NY prior; both places have a very robust ADAP program. If I were in the White House I would conduct a very thorough and comprehensive review on each state ADAP, and begin the discussion on how best to move forward with a uniform AIDS Drug Assistance Program that can serve everyone regardless of geographic location, or socio-economic status. Too many people are falling through the cracks.

Again I ask: "Why do I have access to the care and treatment needed to stay alive, remain healthy, and productive; while others are on wait-lists or who have been shut out of care because of cost containment strategies?" Of course, it is a rhetorical question. This is not right, and this is not the American way!

I encourage you to read the Final Report issued by the ADAP Advocacy Association after its ADAP Solutions Summit. It can be downloaded here: http://www.adapadvocacyassociation.org/publications.html

States rationing HIV treatment is DANGEROUS MEDICINE; Sick people get better, healthier people get sicker

As of March 29th, 2012, there are nearly 4,000 people living with HIV/AIDS (PLWAHs) across 11 states on wait-lists under the AIDS Drug Assistance Programs (ADAPs). Yet there is another ghostly number that exists because states have lowered financial eligibility -- and in some cases have introduced outdated medical criteria as a cost containment measure -- thus virtually shutting people out of care. This number is often referred to as the invisible waiting list. Some advocates have characterized these cost containment measures as “murder by proxy.”

The Health Resources & Services Administration (HRSA), under the U.S. Department of Health & Human Service (HHS), has stated unequivocally that using medical criteria in administering wait-lists in HRSA Programs is considered to be a discriminatory practice, and just recently the Institute of Medicine said ALL treatment naïve patients should be on anti-retroviral medication (ARV). Also, a study published last year (HPTN052) proved that those taking ARVs are 96 percent less likely to pass the virus onto their partner. Despite federal policy and the strong scientific evidence, medical criteria remains on the table in states like Ohio. The proposed rules give highest priority on the wait-list to PLWHA who are pregnant and who have CD4 counts lower than 201. The medical criterion makes no mention of an important aspect of HIV care, which is the Viral Load.

The rules proposed by the Ohio Department of Health (below) are oppressive for PLWHA, and they are indeed dangerous for public health. In essence, states implementing medical criteria result in creating a viscous cycle whereby "sick" patients are allowed to get better, and "healthy" patients are forced to get ill.

Medical criteria completely overlooks that as "healthier" patients get "sicker" the demand for medical care and treatment rises, and the cost benefit of treating someone with HIV-infection vs. not treating someone with HIV-infection has proven itself over the years. It is more cost effective to treat someone healthier, than to wait until they are sick. The Ohio proposed rules is not a cost-effective strategy for health officials, politicians and taxpayers.

Thirty 30 years after the HIV/AIDS epidemic began less toxic medicines are available to keep people alive and healthy, and to keep people productive so that they can provide for themselves and others. Many PLWHA can work, access health insurance, and lead normal productive lives. More importantly someone on medicine is less likely to transmit the virus.

Ohio HIV/AIDS advocates have decried against the proposed rules, arguing that the state is trying to implement these rules on the backs of the poor and vulnerable, especially those living with a potentially life threatening disease such as HIV/AIDS.

The Ohio Department of Health (ODH) has instituted the following medical criteria.

When OHDAP has a waiting list for program enrollment and subject to sufficient funding, applicants to the Ryan White Part B programs must meet one of the following medical guidelines to be eligible for expedited enrollment:

1. Pregnant women who meet all OHDAP eligibility criteria and who are not eligible for other programs which provide antiretroviral (ARV) medications.

2. Post-partum women (women who given birth within 180 days prior to applying to OHDAP) who meet all OHDAP eligibility criteria and who are not eligible for other programs which provide antiretroviral (ARV) medications.

If the OHDAP is able to enroll some but not all individuals from the waiting list (based on insufficient funds), applications from individuals who meet all OHDAP eligibility criteria and who are not eligible for other programs which provide ARV medications will be prioritized as follows:

Priority 1: Individuals with HIV and other extreme medical conditions such as, but not limited to, HIV-associated nephropathy or HIV related dementia. The applicant’s HIV-treating physician or nurse practitioner shall complete a medical waiver request
consistent with section 3701-44-04 of the Ohio Administrative Code.

Priority 2: Individuals with a history of AIDS-defining illness [see paragraph (C) of Appendix A to section 3701-3-12 of the Ohio Administrative Code for indicator diseases diagnosed definitively] and/or a nadir CD4 count of less than or equal to 200 cells/mm3 (or less than 14%). Documentation shall be provided by the HIV treating physician or nurse practitioner evidencing how the individual meets this priority.

Priority 3: Individuals with HIV and a nadir CD4 count between 201-350 cells/mm3. Documentation shall be provided by the HIV-treating physician or nurse practitioner evidencing how the individual meets this priority.

Priority 4: Individuals with HIV and a nadir CD4 count between 351-500 cells/mm3. Documentation shall be provided by the HIV-treating physician or nurse practitioner evidencing how the individual meets this priority.

Priority 5: Individuals with HIV and a nadir CD4 count above 500 cells/mm3. Documentation shall be provided by the HIV-treating physician or nurse practitioner evidencing how the individual meets this priority.

The motto of the Ohio Department of Health is "to protect and improve the health of all Ohioans"; but the unintended consequences that would result from the state implementing its proposed rules on medical criteria for ADAP would undermine that motto. Ironically, Ohio cannot afford to adopt this proposed rule because it will only cost the state more money in other health-related costs.

Not only has Ohio instituted the above medical criteria, they have also reduced financial eligibility from 500 percent of the Federal Poverty Level (FPL) to 300% FPL. Many other states have also reduced their FPL, thus shutting people out of care and treatment. The latest ADAP waiting list numbers, and states who have implemented other cost containment strategies, are made available by the National Alliance of State & Territorial AIDS Directors (NASTAD), and can be reviewed by downloading the ADAP WATCH!

Every person living with HIV/AIDS should have access to the care and treatment they need to remain alive, healthy and productive. PLWHAs seeking access to care and treatment should not be subjected to dangerous medicine!

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.

Syringe Exchange Programs saves lives by reducing transmission rates of HIV and Viral Hepatitis; tell congress to lift the ban on SEPs!

GO RIGHT TO THE PETITION sponsored by the Harm Reduction Coalition or read more detailed info on Syringe Exchange Programs below, then sign!

Just this week when the President presented his budget for Fiscal Year (FY) 2013 the President included a provision in the budget that if enacted into law would allow local communities the power to use federal funds for the purpose of syringe exchange programs (SEPs).

In FY 2010 congress lifted a ban on funds for SEPs in favor of the local control provision mentioned above. Then in FY 2012 Congress flip flopped and re-implemented a Federal ban on the use of federal funds for SEPs. This week is a step in the right direction and we must tell congress to again repeal the ban. SIGN THE PETITION to tell them to do so!

What's the issue: SYRINGE ACCESS

• One third of people with HIV in the United States were infected through injection drug use.
• Every year, another 8,000 people are newly infected with HIV through sharing contaminated syringes.
• Every year, another 15,000 are newly infected with hepatitis C through sharing syringes and contaminated injection equipment.
• African Americans account for over 50% of all AIDS cases attributed to injection drug use, while Latinos account for nearly 25%.
• Among women, an estimated 61 percent of AIDS cases are due to injection drug use or the result of sexual contact with someone who contracted HIV through injection drug use.
• Younger injection drug users generally become infected with hepatitis C within two years

These infections are preventable

Syringe exchange programs provide tools, resources, and education to enable people who inject drugs to protect themselves and their communities through safer injection practices and harm reduction methods. Nearly 200 syringe exchange programs currently operate in 38 states, Puerto Rico, Washington DC, and Indian Lands. Both state and local jurisdictions authorize and regulate sterile syringe access programs. There are no federal regulations governing sterile syringe access.

Syringe exchange programs are also highly cost-effective. The lifetime cost of medical care for each new HIV infection is $385,200; the equivalent amount of money spent on syringe exchange programs would prevent at least 30 new HIV infections. In addition to the reduced risks for disease, sterile syringe access programs facilitate greater access to drug treatment. These programs provide a crucial entry point into medical care, detox and rehabilitation, and mental health treatment.

Current political systems and the medical community have failed to adequately respond to the public health crisis of HIV/AIDS in the injection drug user (IDU) population, an estimated 350,000 users in the U.S.

While some fear that such programs will increase drug use or contribute to general lawlessness, the overwhelming body of research indicates that the presence of SEPs does not result in increased drug use or crime. On the contrary, SEPs increase the availability of drug treatment for both injection and non-injection drug users, and have been shown to decrease the rate of drug use. The current state of federal law must now evolve to reflect the benefits of SEPs, and support communities in implementing SEPs how and where necessary to meet their specific needs.

The petition reads as follows:

To Speaker Boehner and Chairman Rogers,

We are petitioning to express our concerns regarding the shortsighted decision to block use of federal funding for syringe exchange programs in FY 2012 Appropriations. This policy reversal poses an immediate threat to the health and safety of American families, and will cost the nation’s taxpayers money in medical expenses to treat preventable infections for years to come.

At a time when our country faces an unprecedented epidemic of prescription drug abuse – including reports of hepatitis C outbreaks due to painkillers injected with unsterile syringes – we must keep all options on the table to protect our communities’ youth. As the Surgeon General determined in 2011, syringe exchange programs promote entry and retention in drug treatment, and these programs are effective in reducing not only HIV infections and transmission of other viruses, but also in reducing drug abuse itself.

Under previous federal policy, decisions on use of federal funds for syringe exchange were left in the hands of those who know best – local communities, in consultation with law enforcement and public health officials. This flexibility ensured that any use of federal funds remained consistent with local needs, priorities, and values.

We urge you to reverse this misguided funding restriction in FY 2013, and restore decision-making on syringe exchange to its rightful place: the wisdom of communities that are struggling to protect their own.

SIGN THE PETITION

Data Collection: Facts or Follies

As of February 2nd, 2012 there were 4,575 people across twelve (12) states on AIDS Drug Assistance Programs (ADAPs) wait lists; they are waiting to receive their live-saving medication they need to remain active, healthy, and productive members of their communities. In the meantime the U.S. Department of Health and Human Services' (HHS) Health Resources & Services Administration (HRSA) will be working on a data collection process with the main goal of improving access to all 56 ADAPs.

HRSA will soon be gathering data to access the viability of the ADAPs. These programs provide assistance to help low income, uninsured and underinsured people living with HIV/AIDS (PLWHA) access to life saving medications.
The study will seek to find answers to the rising enrollment in state ADAPs and states’ ability to meet these demands for ADAP services, or rather, lack thereof. Eight respondents from eight states (TBD) will weigh in on ADAPs. The individuals to be interviewed will fall into three general categories:

• ADAP personnel (staff at local and state health departments);

• State HIV/AIDS program leads (State AIDS directors); and

• Personnel from state and local programs such as Medicaid, and pharmacy assistance programs. (staff at local and state health departments)

It will take HRSA an estimated two-and-a-half months to complete their information gathering. They will be assessing factors that are contributing to the rise in ADAP services, i.e. earlier use of Anti Retro Viral Therapies (ARVs), lower attrition of existing clients, unemployment and loss of insurance, and increases in drug costs.

The study will also aim to examine factors that may decrease ADAP costs, such as health care reform, and other cost containment strategies. Study findings will be used to develop policy and recommend enhanced practices for managing state ADAPs.

HRSA is accepting public comments on their data collection process described above and these comments can be emailed to paperwork@hrsa.gov.

What is disturbing here is that no specific time, or focus appears to be devoted speaking with HIV-positive individuals who are or are not ADAP clients, advocates working at the local, state and federal level, nor any health care providers. To get the optimum picture of ADAP’s efficacy and ways to improve it, wouldn’t these stakeholders’ opinions be valuable? Shouldn't patient input be a focal point of the data collection?

This is of particular concern given recent reports only about fifty percent (50%) of the U.S. HIV-positive population appears to be in care and treatment. Given the newest data indicating that being on ARV treatment appears to be the single most effective method of preventing HIV infection, some assessment with this focus appears to be a top priority.

Also, which eight states are going to be chosen, and which people from these eight states will be interviewed? As is known each state ADAP is not the same, so a good sampling of states with various ADAP models must be represented in the data collection process.

Which criteria will be evaluated? Decreased funding in the areas of prevention, needle exchange programs, and case management should be top priority when accessing the increased usage of ADAP. As well, the economic downturn should be taken into consideration, loss of employment, and insurance of people living with HIV/AIDS (PLWHA).

Those working in HIV/AIDS at local, state, and federal levels know the reasons behind the problems that many state ADAP programs are having; they have the best ideas on how to fix the issues, and how to unify state ADAPs to make them more user friendly, and cost effective. Over many months now, even years, these issues, and ideas have been documented in letters and reports that have been sent to HRSA to best address these issues. Apparently, these reports have fallen on deaf ears.

The resources and time HRSA will spend conducting this research will be administratively costly, and may produce a very narrow approach to a program that needs to be looked at from a much broader prospective. Is this data collection process necessary? It will likely reveal what community, state, federal, and other industry leaders already know. It will be process that will take a better part of a year to implement, conduct, and report on.

Time is of the essence with 4, 575 people across 12 states on an ADAP waitlists, hoping to receive the medication they need to remain alive, healthy, and productive. This number is on the uptick and will continue to rise as cash strapped states are implementing their own broad state level cost containment strategies, while at the same time patient assistance and co-pay assistance programs are becoming overwhelmed. States cannot afford to wait and hope that health care reform will relieve these immediate problems.

HIV/AIDS stakeholders should demand that this data collection process helps to ensure that everyone living with HIV/AIDS has unfettered access to the care, treatment and resources so desperately needed.