ADAP Pill Box: All Things ADAP
The ADAP Advocacy Association (aaa+) is pleased to share its June 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 the aaa+ list-serve 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.
This edition can best be summarized by the following statement: What a complete mess!
The crisis facing the nation's AIDS Drug Assistance Programs only seems to grow worse by the day, with reports that Georgia is the latest state to start an ADAP waiting list effective July 1st, and now in New Jersey the governor signed a budget that "effectively disallowing access to life saving drugs for 957 people - including 600 individuals, 200 couples and 157 families." This follows the latest ADAP Watch released by the National Alliance of State & Territorial AIDS Directors (NASTAD) putting the waiting list tally at 1,840 in eleven states.
And what has President Obama and Congress done about it?
NOT A DAMN THING!
And HIV/AIDS advocates - especially ADAP stakeholders - are mad as hell, too. Earlier this month, an action alert was circulated by the AIDS Healthcare Foundation demanding Speaker Nancy Pelosi (D-CA) to solve the ADAP crisis now and support the "Access ADAP Act". The action alert read in part: Despite her position as the most powerful Democrat in House, Speaker Pelosi has been silent while AIDS Drug Assistance Programs (ADAPs) across the nation remain in crisis.
The "Access ADAP Act" (S.3401) was introduced last month by Senators Richard Burr (R-NC) and Tom Coburn (R-OK), which would transfer $126 million from discretionary amounts appropriated under the Stimulus Act (Public Law 111-5) that remain unobligated, to be used by the Secretary of Health & Human Services in fiscal year 2010 to provide assistance in reducing waiting lists under the AIDS Drug Assistance Programs. aaa+ was among the first national HIV/AIDS organizations to endorse the plan.
A similar action was directed at President Obama, too. On June 28th, ADAP stakeholders nationwide staged a "National Call-In Day" demanding action.
The crisis has even reached the level where the national media is paying attention. Today, writing for the New York Times, Kevin Sack published an article, "Federal AIDS Drug Program Is Strained by Weak Economy," in which he details the dilemma facing nearly 2,000 Americans in 11 states.
Meanwhile, many of those same angry ADAP stakeholders will be assembling in Washington, DC next week during the "AIDS Drug Assistance Program Crisis Summit" ("ADAPs in Crisis: Moving Beyond Wait Lists & Improving Access to Care"). To learn more about the Summit, please go to http://www.adapadvocacyassociation.org/events.html.
Finally, we wanted to share with you some important resources that might help alleviate the crisis in your community - even if only temporarily. They include:
To learn more about the webinar, please email John Peller, jpeller@aidschicago.org
Thanks for your ongoing interest and support!
Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)
P.S. - To help determine the impact of the Gulf oil spill on HIV care delivery along the Gulf Coast, HealthHIV is surveying both providers and PLWHA. Please share these brief surveys with your network(s) in TX, LA, MS, AL, and FL.
Please contact Paul Angelone, HealthHIV Research and Program Associate, at paul@healthhiv.org with any questions. Thank you for your assistance.
INSIDE THIS ISSUE
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/.
NATIONAL NEWS...
NASTAD Releases June 2010 ADAP Watch
June 25, 2010
The National Association of State & Territorial AIDS Directors (NASTAD) released its June 2010 edition of ADAP Watch. As of June 25th, there were 1,840 individuals on ADAP waiting lists in eleven states - including 361 individuals in Florida, 9 individuals in Hawaii, 26 individuals in Idaho, 97 individuals in Iowa, 189 individuals in Kentucky, 59 individuals in Louisiana, 21 individuals in Montana, 769 individuals in North Carolina, 175 individuals in South Carolina, 22 individuals in South Dakota and 112 individuals in Utah. (Editor's Note: Georgia confirmed that as of July 1st it will institute a waiting list!)
Read ADAP Watch - June 2010
Obama to Release Comprehensive AIDS Policy as Waiting Patients Top Record
Bloomberg.com - by Tom Randall
June 28, 2010
READ STORY
Release of the National AIDS Strategy may come as early as today, fulfilling Obama's campaign pledge to unify priorities among federal agencies and state partners, said Mitchell Warren, executive director of the New York-based AIDS Vaccine Advocacy Coalition, a nonprofit advocacy group.
HIV is contracted by about 56,000 Americans each year, and the mounting tally of people living with the disease shows no sign of stopping, according to the U.S. Centers for Disease Control and Prevention. While the U.S. attack on AIDS overseas has been led by the President's Emergency Plan for AIDS Relief, or PEPFAR, domestic efforts are a patchwork of programs with little oversight, said Chris Collins, director of Public Policy at the American Foundation for AIDS Research, or amfAR.
"Our response to the global epidemic is squarely focused on outcomes, and we need to get to that point in our domestic responses," Collins said. "In the United States we have a concentrated epidemic among a few populations but we don't have a response that fits our epidemic."
Obama's new AIDS strategy needs to focus more on gay men and blacks, among whom new HIV infection rates outweigh other groups, Collins said.
Proposed Budget
The administration's proposed 2011 fiscal year budget called for an estimated $27.2 billion in total spending for domestic and international efforts against AIDS, according to a report by the Kaiser Family Foundation, a Menlo Park, California-based nonprofit health research group. The foundation lists more than 20 U.S. programs or agencies that receive money to prevent the disease or help patients cope with it.
The number of poor patients on waiting lists to receive AIDS drugs rose to a record 1,781 patients on June 24, topping the previous high of 1,629 in 2004, according to the National Alliance of State and Territorial AIDS Directors. The U.S. strategy to be announced by the White House aims to ensure that prevention and treatment programs reach those who need them most and show measurable results, AVAC's Warren said.
State governments facing budget crises have curtailed funding for the AIDS Drug Assistance Program, or ADAP, just as U.S. guidelines were broadened to start treatment earlier, according to the alliance of state directors. About 125,479 patients received medicine from the program last year.
Cutting Costs
The shortfall is greatest in North Carolina, with 769 patients waiting for drugs to combat the disease, and Florida, with 361 patients, the agency said in an e-mail. Other states have capped enrollment, reduced reimbursements made it more difficult to qualify for assistance, the alliance said.
This year Gilead Sciences Inc., the world's biggest maker of AIDS drugs, expanded its assistance programs to cover as much as $2,400 a year in out-of-pocket patient expenses and extended pricing freezes to mitigate the shortfall in funding, according to Citibank analyst Yaron Werber. About 22 percent of Gilead's U.S. sales come from the state-run funds, he said in a note to clients on June 4.
"It's kind of amazing that more than 25 years into it, we've been operating without an AIDS strategy," Warren said in a June 25 telephone interview. "Overall, people are going to see this as a great strategy. The tough part is going to be when we get into the implementation: How big is the budget, what's the implementation plan and who is leading it?"
To contact the reporter on this story: Tom Randall in New York at trandall6@bloomberg.net.
AHF Pops Obama Trial Balloon of $30M for Hard-Hit US AIDS Drug Assistance Program
To close $126M Funding Gap in Nation's AIDS Drug Assistance Program (ADAP), Administration Officials Suggest Just $30M in Funding; 12 States Now Have Wait Lists with More than 1,500 Americans Denied Access to Lifesaving AIDS Drug Treatments
READ STORY
WASHINGTON, D.C.--(BUSINESS WIRE)--AIDS Healthcare Foundation (AHF), the largest global AIDS organization, is rejecting a trial balloon floated by Obama Administration officials that suggests $30 million in additional funding could adequately help close a gaping $126 million hole in funding for the nation's AIDS Drug Assistance Program (ADAP), the federal and state funded, state run network of assistance programs that supply lifesaving AIDS drugs to low-income Americans in need.
As many states face massive budget shortfalls and seek to cut services, more than twelve states have gone as far as instituting patient waiting lists. As of June 25th - the eve of National HIV Testing Day on June 27th - more than 1,500 patients across the nation have been placed on ADAP waiting lists to receive access to lifesaving antiretroviral AIDS treatment. In addition, many ADAPs are raising eligibility requirements, which shut out even more people from these programs.
"ADAPs across the country are in crisis. The suggestion from Obama Administration officials that $30 million could adequately address a $126 million shortfall that is crippling ADAP and killing Americans is just totally unacceptable and we need to pop that balloon," said AHF President Michael Weinstein. "While $30 million is a start, it is nowhere near adequate to address the scope of the crisis. And while several drug companies have recently offered some price and rebate concessions to ADAP, we believe that industry as a whole can - and should - still do more. However, Administration officials must also step up to the plate and identify appropriated but unspent funds to redirect to cash-strapped ADAPs. The government should act like its citizens' lives depend on it - they do!?
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Source: AIDS Healthcare Foundation press release
1,431 Impoverished AIDS Patients Put on Waiting Lists for Treatment; As Funding Runs Out, 288 More Patients Wait-Listed in Last 20 Days
WASHINGTON, D.C. (June 11, 2010) - Funding has run out in 12 states to provide AIDS treatment for low-income persons, with 1,431 patients already put on waiting lists for treatments they need to save their lives - 288 of them in the last 20 days alone.
"The numbers are increasing exponentially," William Arnold, President of the Community Access National Network (CANN), told a Congressional briefing today. "AIDS funding for the poor is in crisis."
As of May 21, according to a periodic census of wait-listed patients conducted by the National Alliance of State and Territorial AIDS Directors (NASTAD) and released today, there were 1,143 newly-diagnosed AIDS patients on wait lists in 10 different states. By June 10, funds had run out in Florida and Illinois, bringing the total number of states where funds had run out to 12 and the number of patients wait-listed had increased to 1,431.
At an emergency Capitol Hill briefing today, reporters and Congressional staff were told that increasing numbers of persons losing health coverage during the Recession and a 20% relative drop in federal funding for the AIDS Drug Assistance Program (ADAP) have put uninsured and under-insured AIDS patients in what Arnold called "a freefall."
"Even with drug-makers supplying antiretroviral (ARV) drugs at drastically reduced prices and often for free, the Recession and declining rates of federal funding are forcing low-income AIDS patients off a cliff," he said. "Without an additional commitment from Congress and the White House, every low income individual who needs these life-saving drugs is at risk of being put at the end of the line for treatment."
Besides Florida and Illinois, the other states that have exhausted funding for low-income AIDS patients include Hawaii, Idaho, Iowa, Kentucky, Montana, North Carolina, South Carolina, South Dakota, Utah and Wyoming, "with other states sure to follow," Arnold said.
Florida alone, he predicted, will put "another 250 newly-diagnosed patients on the waiting list each and every month until this funding crisis is resolved."
A mother of two, Elizabeth Shepherd of Charleston, South Carolina, told of how, in 1996, she was gang-raped, contracting five different strains of the HIV virus, only to be told that funding did not exist for her treatment. "I had five viruses mutating inside me, combining into a single monster that would kill me, but I was put on a wait list, as if life-saving treatment was like a vacation condo you wanted to rent."
Funding was eventually secured for her treatment, Shepherd said, and she is now able to live a relatively normal life as long as she continues taking anti-retroviral therapies provided through ADAP.
U.S. Representative Joseph Cao (R-LA) said his home town of New Orleans has been "devastated" by the AIDS crisis, with 9,227 newly-diagnosed patients in 2007 alone.
New Orleans has the second highest number of AIDS cases, per capita, of any major American city, he explained. "A disproportionate amount of these patients are from the African-American community, which represents 60% of the population of New Orleans," he said. Cao has sponsored legislation to increase the nation's commitment to research and treat the disease.
Advocates are seeking an additional $126 million in funding for the ADAP program for the current fiscal year and an additional $244 million in 2011, but the additional emergency funding is mired in partisan wrangling in both the House and Senate.
"I've spent the last couple days talking to Congressmen and their staffs, and I can't believe that they put politics ahead of people's needs," Shepherd said. "It's disheartening."
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Source: Community Access National Network press release
OPINION: Cuts in ADAP a major blow to AIDS patients
The Daily Caller - by Geoff Holtzman
June 22, 2010
READ STORY
Imagine being gang-raped. Imagine the pain it causes, the shame it inflicts and the endless trauma it bears. Now, imagine being told just months later that you've contracted HIV as a result. This is the story of Elizabeth Shepherd.
In 1997, Shepherd was raped by five African-American men in Charleston, S.C., who allegedly targeted her because she was white. Shepherd was admitted to a local hospital where she was treated for multiple injuries. Having suffered severe physical and mental trauma, Shepherd was in critical condition, and in no position to deal with bad news. But then, her doctors told her that the men who had raped her all had AIDS.
"I was in the hospital for four months," she told me. "During that time the doctors came to me and told me that those five strains of AIDS were growing inside me to create one, new, mutated monster."
The news got even worse for Shepherd. Six months after she was released from the hospital, a test confirmed that, in fact, she was HIV-positive. However, due to limited resources, the state of South Carolina informed her that she would have to be put on a waiting list for any life-saving treatments. Imagine - you're told you have a disease that kills millions each year and there is nothing you can do.
"Without any medications people get depressed and dismayed," she said. "They start feeling hopeless."
For two years, Shepherd remained on that waiting list, fully aware that her health could immediately deteriorate at any moment. But in 1999, Shepherd finally received a slimmer of good news. The state had received enough funding that year to expand its AIDS Drug Assistance Program, or ADAP. Shepherd was off the wait list, and on her way to securing medicine she previously could not afford. On average, most Americans that are diagnosed with AIDS live anywhere between one and ten years. 13 years after learning she was HIV-positive, Shepherd is not only still alive, but has transformed herself from a junkie to a working, college-educated citizen who is making a positive impact on the lives of others.
Shepherd likely owes her life to ADAP. And she is not alone.
The program, created in 1987 and then incorporated by Congress into the Ryan White Care Act three years later, has provided hundreds of thousands of low-income Americans with HIV and AIDS, access to affordable treatment drugs.
Under the rules of ADAP, states are granted the authority to establish and manage their own individual programs, using a mix of federal HHS funds as well as money from their own budgets to pay for them. In addition, organizations like the Community Access National Network and the ADAP Advocacy Association have donated annually to keep the programs healthy.
A report done by the Kaiser Family Foundation three years ago determined that the total budget of the program, which was active in all 50 states, amounted to 1.4 billion dollars in 2007. During that year, the program provided treatment or coverage to 102,000 Americans, a figure representing roughly 30% of those infected with HIV in the U-S. However, a rise in that number coupled with one of the worst recessions in the country's history has rendered some states unable to match their supply of medication with the demand of those in need. Moreover, as Congress grapples with ways to cut spending, the share of HHS dollars earmarked for ADAP has gradually decreased in recent years.
Bill Arnold, who directs the National ADAP Working Group, says the federal contribution has shrunk by almost 25% over the last decade. Arnold argues however, that expanding deficits and mounting pressure on Congress to cut spending aren?t enough of an excuse to neglect those who rely on the program.
"We may not be thrilled about some costs for some people or some medicines, but we have them," he said. "Not providing access to them generates genuine risk to health and life."
Right now, the lives of hundreds of HIV and AIDS-infected Americans, unable to pay for live-saving medications, are in severe jeopardy over Congress's inability to extend funding for ADAP. In June, the number of Americans on state waiting lists topped 1,400 for the first time ever, with almost 300 new names being added last week ALONE. Congress, says Arnold, has an obligation to find a way to help these people.
"Morality says you find the medicine, ethics says you find the medicine, and medical ethics says you don't cut off the medicine once somebody's on it."
So, how much cash are we talking about to help patients get the treatment they need: One hundred twenty-six million. That's million, with an "M." I repeat: $126 million is the difference right now between potential life and death for hundreds of people. Now, for a man or woman earning 30,000 dollars a year, struggling to pay the rent, that may seem like a substantial amount. But consider this: A report put out by the Heritage Foundation makes that figure look like a drop in the bucket compared to the amount of money the federal government wastes each year. For example, in 2008, the federal government made at least $72 billion worth of improper payments, and in 2009, it spent $25 billion to maintain vacant or unused properties. Additionally, that same report found that the refusal of many federal employees to fly coach costs taxpayers $146 million annually in flight upgrades. Recouping those dollars alone would be enough to keep ADAP going for DECADES.
Fortunately, some on Capitol Hill have taken note of the problem, and are proposing doing something about it. A bill introduced last month by Republican Sens. Richard Burr of North Carolina, and Tom Coburn of Oklahoma, would use unobligated Recovery Act dollars to fund ADAP through the rest of 2010. The measure has broad support in the Senate, but not yet in the House, where companion legislation would be needed. Unlike Burr, Coburn, and Florida Republican George LeMieux, House Republicans have been reluctant to back any bill attached to stimulus money. Even Congresswoman Ileana Ros-Lehtinen, who was given a sparkling grade by the ADAP Advocacy Association for her efforts to combat AIDS, has not yet endorsed the bill. Across the aisle, Democrats are withholding support, happy to score cheap points by exploiting the GOP for prioritizing politics over the health and well being of over 1,400 people at risk.
Shepherd says her lobbying efforts have fallen on deaf ears of members concerned more with getting re-elected than saving lives.
"I found no interest, nobody's interested. All I found was politics," she said. "Nobody's interested in putting a dime in, or doing anything."
To secure funding, Arnold says he's tried going directly to the administration, but to no avail.
"There have been letters to [HHS Secretary Kathleen] Sebelius, there have been letters to the President. There has been no response to any of these letters."
Arnold is holding out hope that this lack of acknowledgment has more to do with federal officials simply not yet having a plan in place to deal with ADAP than it does with them being impartial to the plight of a minuscule percentage of the population. Still, to people like Shepherd who have lived through the hardship of uncertainty that comes with being stuck on a waiting list, the current stalemate in Washington gives her an all-too familiar feeling.
"We are stuck with no help. It looks like there is no help at all."
ADAP Crisis Worsens; Waiting Lists Near Historical High
WASHINGTON, DC (June 18, 2010) - There are now 1,596 people on waiting lists to receive consistent access to their HIV-related medications through AIDS Drug Assistance Programs (ADAPs). This number nearly tops the historical high of 1,629 people on waiting lists in May 2004. The National Alliance of State and Territorial AIDS Directors (NASTAD) implores the Obama Administration and Congress to take immediate action to provide relief to the nation's struggling ADAPs. The program is in need of an additional $126 million in FY2010 emergency funding in order to ensure access to lifesaving medications for those in need.
As of June 17, 1,596 individuals in ten states were on ADAP waiting lists. ADAP waiting lists have increased 40 percent in the last month (from 1,143 people on May 20, 2010). In addition to waiting lists, 12 states have implemented or anticipate implementing other access restrictions such as lowering financial eligibility criteria, removing drugs from their formulary and capping expenditures. To see a list of states with access restrictions please visit NASTAD's website at http://www.nastad.org.
"ADAPs are struggling to meet the demand for life-saving medications in their states," stated Julie Scofield, NASTAD's Executive Director. "The lack of additional resources to address the crisis is unacceptable and is resulting in increased waiting list numbers and other access restrictions."
The current economic crisis continues to heavily impact ADAPs. In FY2008, over 200,000 individuals relied on ADAPs for their medications. This includes nearly 40,000 new clients to the program. ADAPs experienced a 14 percent increase in client utilization between June 2008 and June 2009. Individuals losing their jobs and insurance as well as increased HIV testing efforts are contributing to the number of individuals relying on safety net services such as ADAP.
"President Obama and Congress must address the growing ADAP crisis and provide relief to states to ensure that clients can receive comprehensive and consistent access to their medications," remarked Scofield. "Advocates continue to work with their state legislators to shore up general revenue contributions to ADAPs and many of the major pharmaceutical companies have reached agreements with the ADAP Crisis Task Force. Now it is the federal government's turns to pitch in," she added.
The ADAP Crisis Task Force (Task Force), convened by NASTAD, has successfully reached agreements with six of the eight major antiretroviral manufacturers. These agreements will provide additional rebates and discounts as well as multiple year cost protections for ADAPs which will allow increased state and federal revenues to go toward eliminating waiting lists, providing medications to new clients, and maintaining formularies. The Task Force continues to negotiate with the remaining companies.
ADAPs are the safety net under other public programs, such as Medicare and Medicaid. Seventy-seven percent of ADAP clients earn less than 200 percent of the federal poverty level, which is $22,000 for an individual. NASTAD estimates that the additional $126 million needed in FY2010 emergency federal funding will only allow states to continue their programs with the same composition, not expand their programs in any way. Emergency funding to curtail ADAP waiting lists has not been available since 2004 when President Bush provided additional funds to the program.
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Source: National Alliance of State & Territorial AIDS Directors press release
OPINION: Don't let funding crisis mutate into AIDS crisis
The Florida Sun Sentinel - By Tony Plakas
June 16, 2010
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An AIDS Drug Assistance Program crisis is not an option, even in troubling economic times. But that's where we are - after getting the pandemic of AIDS to a point where more people are now living with the disease than dying from it, state drug programs are balancing funding cuts by turning away new patients, cutting back on effective drug regimens and otherwise slicing and dicing a proven strategy that has kept a viral killer under control.
I know funding is scarce. However, ADAP brings people infected with HIV, or living with AIDS, affordable, lifesaving options we believed impossible just 15 years ago. Fully funding this program cannot be deemed unaffordable.
Here's what's unaffordable: returning to the archaic time when people found out they were infected with HIV because they were rushed to a hospital with an opportunistic infection like pneumocystis carinii pneumonia or Kaposi's sarcoma - both costly, often lethal signs a body had been infiltrated by a deadly, infectious virus that mutates at a rate that is difficult to contain. What is unaffordable, for all of us, is finding out - often too late - that no combination of medications will offer a sustainable quality of life.
Unaffordable is finding out a person's viral load is so high that the numerous, proven variations of AIDS drugs now have little or no effect in treating a disease that spreads, with unprecedented resistance to new treatments, like no nonliving, blood-borne pathogen we have encountered in recent history.
An ADAP crisis puts everything we've invested in research at risk and makes the planet's entire population susceptible to a biological disaster that we have nearly gotten under proto-control, at least in first-world countries. People are actually aging with HIV, a concept we thought impossible in the mid-1990s.
If you don't think this affects you, you are wrong. HIV is a tricky little virus - one that mutates like nothing we've seen in modern medical science. To combat it, our government has focused entirely on identifying people with HIV as early as possible, making drug adherence and compliance a priority, and making complex regimens easier to sustain. Keeping HIV and AIDS patients on those regimens, consistently, is essential, because once someone takes a "drug holiday," or cannot access medications that keep the virus from adapting to our next pharmaceutical trick, efficacy moves beyond our reach and puts anyone sexually active at risk.
We cannot afford to turn back the clock on those successes and allow HIV and AIDS to strengthen its foothold because of a poor economic cycle. But there are encouraging signs. In an unprecedented response to the lack of funding, drug companies - driven by a need to ensure that gaps in coverage do not permit the disease to grow resistant to their products - are working to make drugs more affordable. And government agencies are working with them.
Financial incentives can be powerful, and in the case of the potential ADAP crisis, they may be enough for private industry to help turn this funding shortfall into a challenge - by adapting, much the way HIV does, and beating it at its own game.
AIDS drug funds threatened by Tea Party scare?
Washington Blade - By Lou Chibbaro Jr.
June 9, 2010
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Some Democrats and Republicans in Congress who have long supported funding for the AIDS Drug Assistance Program are reluctant to back the struggling program this year because they fear the additional spending will jeopardize their chances of being re-elected, Capitol Hill observers and AIDS activists said this week.
William Arnold, executive director of the National ADAP Working Group, said intense pressure on members of Congress to curtail spending by the so-called Tea Party movement has made it difficult to line up support for an emergency supplemental appropriation measure.
Arnold and officials with other national AIDS and LGBT organizations say the program is facing a crisis never seen before, where a growing number of low income people with HIV or AIDS may be denied life-saving anti-retroviral drugs in at least 11 states this year because state ADAP affiliates have run out of money.
Due to a shortage of funds, the 11 states have been forced to put in place waiting lists for patients who otherwise would have received AIDS medication prescribed by their doctors.
"It's ridiculous that people have to be wait-listed for medicine that they need to stay alive," said Laurie Young, a policy analyst for the National Gay & Lesbian Task Force.
ADAP was created in 1987 under the Ryan White Care Act to help pay for AIDS-related drugs for low-income people with HIV/AIDS, including those who don't have health insurance coverage.
Advocacy groups familiar with the program say an emergency appropriation of at least $126 million is needed this year to provide AIDS drugs for all that need them. But they say the Obama administration and Democratic leaders in Congress have yet to make a commitment to back such an appropriations measure.
Nearly 80 members of the House, including gay Reps. Barney Frank (D-Mass.) and Tammy Baldwin (D-Wisc.), signed a petition recently sent to the White House urging the president to back the emergency funding measure. All but one of the House members signing the petition were Democrats.
Baldwin said Tuesday that she and her colleagues who signed the petition have yet to receive a response from the White House.
In an e-mail Tuesday to the Blade, White House spokesperson Shin Inouye said the president "strongly supports the Ryan White Program and the AIDS Drug Assistance Program?s vital role in providing life-saving medications for people living with HIV and AIDS."
Inouye noted that the current year's funding for ADAP represents a $20 million increase over the fiscal year 2009 funding. He said President Obama has proposed an increase in ADAP funding for next year that will allow the program to "serve an additional 3,389 individuals."
But Inouye didn't say whether the administration would support the $126 million emergency supplemental appropriation for ADAP for this year, as AIDS groups have requested.
In response to a request for the White House's position on the emergency funding proposal, Inouye said, "We are working to ensure that ADAP has the funds it needs so that waiting lists are not needed for this safety net program."
Drew Hammill, a spokesperson for House Speaker Nancy Pelosi, said Pelosi and other House Democratic leaders were reviewing the request.
"As she has every single year since the program was created, the speaker will push for increased funding for ADAP in the regular [fiscal year] 2011 Labor-[Health & Human Services]-Education appropriations bill," he said.
Representatives of AIDS groups, including Arnold, said a funding increase in the fiscal year 2011 appropriations bill cited by Pelosi's office would be helpful and could alleviate the ADAP crisis if the funding were large enough.
But they said that immediate relief is needed this year, noting that the 2011 measure would not take effect until July 1, 2011.
Baldwin told the Blade that she was certain that congressional Democrats would take steps to support the $126 million emergency appropriation. But she said Republicans in the House have followed a policy of opposing nearly all spending bills proposed by Democrats.
"I sense among the Democratic caucus, among the Democratic leadership, an absolute awareness of this" funding problem and a commitment to acting, she said. "And yet when we can?t rely on any bipartisanship to respond to this crisis, we can't rely on a single Republican vote to help respond to the absolute needs of people we represent, it is extremely challenging."
But Michael Weinstein, president of the AIDS Healthcare Foundation, questioned Baldwin's response, saying Democrats have yet to introduce a measure calling for the $126 million funding for ADAP.
"Why don't they introduce a bill and call the Republicans' bluff if they want to blame this on the Republicans?" Weinstein said.
He noted that Sens. Richard Burr (R-N.C.) and Tom Coburn (R-Okla.) introduced a bill last month that would take the $126 million needed for ADAP this year from the federal stimulus program, where there are millions of dollars in unobligated funds.
Sens. Michael Enzi (R-Wyo.) and George LeMieux (R-Fla.) also signed onto the bill, but no Democrats so far have agreed to become co-sponsors. Weinstein said Democratic sources in the Senate told him the bill would be ?dead on arrival? when sent to a committee to consider it.
"This is partisan politics, with the well-being of people with AIDS the ones to suffer the consequences," Weinstein said.
Weinstein also challenged Pelosi to immediately introduce an emergency funding measure to cover the needed funds for ADAP this year, saying her district in San Francisco has a large number of low-income people with HIV that rely on ADAP.
He acknowledged, though, that no other Republican senator, including Senate Minority Leader Mitch McConnell, have signed on to the Burr-Coburn bill. A similar bill has yet to be introduced in the House.
Baldwin said she would likely vote for such a bill if it were introduced in the House and became the only vehicle to allocate the ADAP funds. However, she noted that she would prefer not to take funds from the stimulus program.
In his e-mail to the Blade, Inouye said the White House opposes taking funds from the stimulus program "because those resources are needed by communities across the country to keep the economic recovery going and to stimulate job growth."
Arnold said his group supports the Burr-Coburn bill on grounds that it could provide immediate help for ADAP and the funds are already incorporated in the federal budget, preventing the need for "more spending" to appropriate the funds.
He also noted that the Tea Party movement appears to have frightened both Republicans and Democrats from embracing new spending, even if they know it's needed to help save lives.
Some Capitol Hill insiders have said the reluctance by lawmakers to back spending measures appears to have stopped a supplemental appropriations bill normally approved each year to pay for federal disaster relief efforts. AIDS activists were hoping a supportive committee member would seek to add the ADAP emergency appropriation to this bill.
That bill, which was before the House Appropriations Committee, was expected to come up for a committee vote last month, just before Memorial Day. But Arnold and other sources familiar with the measure said Committee Chair David Obey (D-Wis.) reportedly put the bill on "hold" because he couldn't line up the votes among his fellow Democrats to pass it.
Moderate and conservative Blue Dog Democrats were among those reluctant to back the bill, said people familiar with the measure.
"The Blue Dog Democrats have been very opposed to spending money, period, because they're worried about getting re-elected and they're from swing districts where tea partiers might be challenging them," Arnold said.
Obey reportedly has said he postponed committee consideration of the bill because too much business was taking place on the House floor and committee members didn?t have time to consider the bill, according a source familiar with the committee. The source said Obey indicated he would soon decide how and when to take up the bill.
Arnold said his and other AIDS groups have argued that turning down the ADAP spending measure would be "penny wise and pound foolish" because it saves the government large sums of money in the long run.
If people with AIDS are denied medication, they could end up in the hospital, and state and federal agencies could be forced into picking up the bill from patients without insurance coverage.
Gilead Sciences and ADAP Crisis Task Force Announce New Initiatives to Support AIDS Drug Assistance Programs (ADAPs)
Lower Prices for Gilead HIV Medicines under ADAPs, Effective July 1, 2010
New Pricing Frozen to ADAPs through 2013
Key Enhancements Made to Gilead HIV Patient Assistance and Co-Pay Programs
FOSTER CITY, CA and WASHINGTON, D.C. (June 4, 2010) - Gilead Sciences and the ADAP Crisis Task Force (ACTF) today announced a series of initiatives to help state AIDS Drug Assistance Programs (ADAPs) continue to provide antiretroviral medicines to people living with HIV in the United States. The new measures are a response to budget shortfalls being experienced by a number of ADAPs across the country, and the growing number of individuals on ADAP waiting lists who are not receiving the HIV treatment they need.
The initiatives announced today by Gilead and the ACTF include:
As of May 20, 2010, there were 1,143 individuals on ADAP waiting lists in 10 states. ADAP waiting lists have increased more than ten-fold in the last year (99 individuals were on ADAP waiting lists in May 2009).
In addition to waiting lists, 16 states have implemented other access restrictions such as lowering financial eligibility criteria, removing drugs from their formularies and limiting expenditures.
"Gilead's willingness to help with the current ADAP crisis by agreeing to these initiatives demonstrates that they are committed to serving the needs of people living with HIV in the U.S. who have no access to lifesaving medicines except through ADAP," stated Jennifer Brown, Director of the Bureau of Epidemiology at the Utah Department of Health and spokesperson for the ACTF. "The ADAP Crisis Task Force and Gilead Sciences have come together to find ways to bridge the gap that ADAPs are experiencing, strengthening the case for further assistance from the federal and state governments at this critical time of unprecedented need for ADAPs and their clients," added Brown.
"Gilead is committed to ensuring that a drug's price is never a barrier to access for those in need," said Kevin Young, Executive Vice President, Commercial Operations, Gilead Sciences. "As one of the first companies to freeze pricing for ADAPs in 2008, we remain focused on developing solutions that ensure that individuals living with HIV, regardless of where they live or their income level, have access to our therapies."
New Lower Prices and Extension of ADAP Price Freeze
Effective July 1, 2010, Gilead will set lower ceiling prices for its HIV medicines Truvada, Viread and Emtriva. The revised prices will include supplemental discounts that are in addition to any federallymandated discounts.
Additionally, Gilead's new ceiling prices will be frozen through December 31, 2013. This extends Gilead's original ADAP price freeze that was established in 2008 and continued through 2010. Taken together, these changes will result in lower net prices for ADAPs.
Expanded Eligibility for Gilead Patient Assistance Program
Gilead's U.S. Advancing Access® patient assistance program was developed in conjunction with feedback from advocates in the HIV community. The program utilizes a rapid and simple process that ensures clients who apply and qualify for assistance can receive immediate, same-day access to Gilead's antiretrovirals.
Effective on or before July 1, 2010, Gilead will increase the income eligibility guidelines of this program from 300 percent of the Federal Poverty Guidelines to 500 percent of the Federal Poverty Guidelines as published by the U.S. Department of Health and Human Services.
This change results in income criteria that currently matches or exceeds all state ADAPs. This is an important change for clients eligible for ADAPs but on waiting lists as all now will have access to this program until they are accepted into ADAP. Clients seeking further information on the program should contact U.S. Advancing Access at 1-800-226-2056, Monday through Friday between 9:00 a.m. and 8:00 p.m. (Eastern).
Enhanced Co-Pay Assistance Program
Effective on or before July 1, 2010, Gilead will eliminate the requirement for clients with private insurance to pay the first $50 of out-of-pocket expenses before co-pay assistance begins. Going forward, Gilead will pay up to $200 per month ($2,400/year) toward out-of-pocket expenses for Truvada, Viread or Emtriva. All clients in the U.S. with private insurance are eligible, except where prohibited by law. Clients seeking further information on Gilead's co-pay program should call 1-888-358-0398 to request a pharmacy Co-Pay Card for use when filling prescriptions.
New Effort to Create Universal Patient Assistance Program Application
Gilead recognizes the challenges that case managers and client advocates face in coordinating access to care across multiple pharmaceutical company patient assistance programs. Gilead therefore supports and will participate in a new collaboration between industry and community partners to develop a universal application system for patient assistance programs that would simplify access to HIV combination therapy for clients requiring medications from different manufacturers.
Forward-Looking Statement
This press release includes forward-looking statements, within the meaning of the Private Securities Litigation Reform Act of 1995, that are subject to risks, uncertainties and other factors, including the risk that Gilead may modify aspects of its ADAP-related drug pricing prior to December 31, 2013 or change the arrangements under its patient assistance or co-pay assistance programs in the future. These risks, uncertainties and other factors could cause actual results to differ materially from those referred to in the forward-looking statements. The reader is cautioned not to rely on these forward-looking statements. These and other risks are described in detail in Gilead's Quarterly Report on Form 10-Q for the first quarter of 2010, as filed with the U.S. Securities and Exchange Commission. Gilead claims the protection of the Safe Harbor contained in the Private Securities Litigation Reform Act of 1995 for forward-looking statements. All forward-looking statements are based on information currently available to Gilead, and Gilead assumes no obligation to update any such forward-looking statements.
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Source: Gilead Sciences & National Alliance of State & Territorial AIDS Directors press release
ACROSS THE NATION...
State budget faces final vote, retains ADAP funding; Additional $14 million will reopen service to some on waiting list
Source: QNOTES - by Matt Comer
June 29, 2010
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RALEIGH, NC - North Carolina lawmakers approved the state's final budget in its second reading late Tuesday afternoon, and are expected to vote on it a final time Wednesday.
The final draft of the budget - approved 31-16 in the Senate and 66-49 in the House - includes recommendations by Gov. Bev Perdue for an additional $14.1 million in funding for the state's AIDS Drug Assistance Program (ADAP), which provides lifesaving medicines to low-income individuals living with HIV and AIDS. State officials were forced to close new enrollment to the program in January.
Since then, the waiting list for new enrollment has grown exponentially, with 769 people as of June 24. North Carolina's waiting list is the longest in the nation, according to the National Alliance of State and Territorial AIDS Directors.
If approved, the new budgeted funds would restore ADAP service to those on the waiting list living at or below 125 percent of federal poverty level, although the current waiting list includes individuals living at up to 300 percent.
Ian Palmquist, executive director of Equality North Carolina, said the budgeted funds aren't a complete fix, but a welcome sight nonetheless.
"It is a huge step in a very tough budget year where the state has already cut $800 million in funding," Palmquist said. "Having any additional money budgeted for programs is very unusual."
The additional funds will be used to service only those currently on the waiting list. Palmquist said new enrollment would be unlikely, but steps could be taken to serve clients elsewhere, especially if a Department of Health and Human Services study on Medicaid eligibility is successful. The appropriations bill directs department officials to undertake that study and report to Senate and House officials the possibility of moving some wait-listed ADAP patients to Medicaid.
Palmquist said the study is a "good idea," and cited benefits to both patients and the state.
"One, it would cover all of their health care, not just AIDS drugs, and the federal government matches Medicaid dollars two-to-one - the state would get more federal resources," Palmquist said.
The Health and Human Services should report their findings to Senate and House health committees by November.
Georgia to implement AIDS drug waiting list for low-income people with HIV
Source: GA Voice - by Dyana Bagby
June 27, 2010
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ATLANTA, GA - Georgia Equality Executive Director Jeff Graham said Saturday that Georgia will become the 11th state in the nation to have a waiting list for its AIDS Drug Assistance Program beginning July 1st.
Graham announced the news Saturday at the Atlanta Pride Committee's "Be Visible, Make A Statement Rally & Community Photo Shoot" at the state Capitol.
"You will hear, next week, some really bad news. Georgia on July 1 will become the 11th state in the country that has a waiting list for our AIDS Drug Assistance Program. That means on July 1, people will be put on a waiting list to get the drugs to save their lives," he said.
On Monday, Graham sent a message to Georgia Equality's Facebook list noting that the problem with funding is coming from the federal level.
"While local advocates have been successful at preventing any cuts to the approximately $13 million the state contributes towards this program, federal funds have failed to cover the increased demand for this program," Graham said. "Details on this waiting list have not yet been released by the Department of Community Health."
There are currently 1,500 people in the country on a waiting list, not including those from Georgia who will be put put on the list beginning Thursday, Graham said.
AIDS Drug Assistance Programs, known as ADAPs, are funds administered through the states to provide HIV/AIDS medications to low-income people living with HIV and who have no other insurance coverage or very little coverage and is considered the "payer of last resort," according to the Georgia Department of Community Health.
Funding for ADAP comes through the federal Ryan White HIV/AIDS Treatment Modernization Act.
"What's holding up the funding in Congress is, unfortunately, President Obama and the 'Blue Dog Democrats,' the conservative Democrats, who don't want to see any more federal funding released," Graham said.
Graham said pressure needed to be put on state and federal government officials to fund ADAP. He also stressed that those who may test positive in the next few days get medical treatment and "not drop out of the system."
In Monday's Facebook message, Graham also urged Georgians to join in today's National Call-In Day to tell President Obama to solve the "ADAP Crisis."
ADAP drug program waiting list results from sharp increase in clients
Source: Watermark Online - By Scottie Campbell
June 23, 2010
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DAYTONA BEACH, FL - The Florida Department of Health has made substantial changes to the AIDS Drug Assistance Program (ADAP) citing a record increase in clients brought on by the current economic climate. The department has instituted a waiting list for ADAP and the drugs offered through the program will be limited to antiretroviral (ARV) and opportunistic infections (OI). Clients receiving medications through Ryan White Part A will not be affected.
Current Florida ADAP clients were informed of the changes through a flyer enclosed in the bag with their latest round of medications.
Current clients will remain enrolled in the program provided they pick-up their medications at the scheduled time and re-enroll in the program every six months. Clients failing to meet either of these stipulations will be automatically changed to a "closed" status and will be placed on a waiting list when they re-enroll. The waiting list and enrollment policy went into effect June 1.
"This essentially makes people who are newly infected and unable to cover costs unable to get their meds," said Ed P., who asked that his last name not be used. "It's almost like the beginning of the crisis in the 1980s. You're infected and there's nothing you can do to combat the disease."
According to the National Alliance of State & Territorial AIDS Directors (NASTAD), Florida is one of 11 states implementing a waiting list. Florida is the largest state to adopt a waiting list, and has the third largest population of people living with HIV and AIDS (approx. 18,000). As of June 10, Florida had 113 individuals on its waiting list.
That number, while it may appear small, concerns Andy Stone of St. Petersburg.
"Sure, 113 doesn't look big when you look at the overall population, but when timing is everything, not getting your meds can be a life and death situation," he said. "Those of us fighting HIV have always been told how important it is to start treatment immediately and to remain on that regimen. This cuts make it difficult for some to even get started on a program."
Effective August 1, the Florida ADAP formulary will be reduced to include 28 ARVs and 19 OIs. Wanda Tomlinson, insurance/pharmacy coordinator for Hope & Help of Central Florida, said a list of drugs are expressly excluded. Examples of "wrap around" drugs that are likely to be included are: wasting medicines, psychotherapy, hypoglycemia and blood pressure medications.
To provide clients with drugs not covered by the ADAP, AIDS service organizations, such as Hope & Help, will rely more heavily on existing relationships with drug manufacturers through Patient Assistance Programs (PAPs). The success of providing these drugs may be precluded by cost and controls that require the client to extensive documentation.
"The goal of everyone in this field is to not let people go without their medications," Tomlinson said.
Health Officials Explain ADAP Waiting List
Source: South Florida Gay News - By Jarrett Terrill
June 23, 2010
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FORT LAUDERDALE, FL - - "For the past two years we have been looking at the enrollment numbers in ADAP and saying, 'We do not want to start a waiting list; we want to stretch out the problem for as long as we can,'" says Tom Liberti, chief of the Florida Department of Health's HIV/AIDS Bureau.Liberti spoke to a crowded hall of concerned citizens, healthcare workers and journalists in Fort Lauderdale on Thursday, June 17. He gave a similar speech in Miami Gardens the night before at the behest of State Senator Frederica Wilson.
Senator Wilson put her healthcare town-hall meeting in the works long ago in order to explain to her constituents what the new federal reforms would mean for them. "Then I picked up the paper and read that there was going to be this waiting list for ADAP," Wilson said. "I called up Tom Liberti and asked for his participation as well."
"Mr. Liberti and I go way back,' she explained, "We were advocating for people with AIDS on Capitol Hill." The audience at Senator Wilson's Miami Gardens town hall was more receptive than the one in Broward County.
The discussion, facilitated by the Broward Health Department in Fort Lauderdale, was crowded, difficult to navigate and - despite their system of requiring attendees to hand in their questions to be chosen in advance - was not free of a few terse interruptions and accusatory language.
"We did not want to do this," Liberti said in response to a pointed question from a local participant. "We didn't have a waiting list for 14 years. We ran out of money."
The D.O.H.'s official explanation for the necessity of a waiting list for HIV medication has, so far, been rooted in the economy. Liberti said repeatedly that the "unemployment rate and the recession" are the reasons that the need for HIV medication have exceeded the funding. To back this idea up, he referenced the Brookings Institution - a conservative think-tank that came into prominence by opposing the New Deal.
However, even as Senator Wilson was introducing Mr. Liberti to her audience the previous evening, she highlighted an improved economy in South Florida. "Florida Workforce has more jobs than they have applicants, especially if you are an able-bodied man with kids to feed, so get on over there," she said.
Another explanation for what Liberti now calls "the ADAP crisis" is that federal contributions to the ADAP program have "hovered at around $92 million" while Florida's need for assistance has grown beyond that.
But each state customarily makes its own funding contributions to ADAP as well, and Florida has cut its contribution to ADAP by over $3 million, despite the fact that we rank third in the number of reported HIV diagnoses in the USA.
SFGN asked Liberti if Florida state legislators were asked to increase their contributions to ADAP, and he responded by deflecting back to his department's cost-cutting measures and their attempts at asking the federal government for more money.
Liberti defends Florida's legislature as "generous," noting that Florida has only cut ADAP funding by a fraction of what California did in 2009. What he omitted from that claim is that California's governor, Arnold Schwarzenegger, provided an additional $97 million for California's ADAP in his 2010 budget and that California had previously been offering far more services under its ADAP than Florida ever has. Florida also has more people living with HIV per-capita than California does.
The change in tone on the morning of the Fort Lauderdale event was exacerbated when Liberti described last year's $1 million cut to ADAP as a "pharmacy line-item" veto, and Dr. Jeffrey Beal, the medical director of the Bureau, told the audience that "all of [the Bureau's] administrative costs come out of the Ryan White Care Act."
These ideas were not expressed at the previous night's discussion and the audience reacted with murmurs and gestures of disapproval.
Beal's misunderstanding of the challenges that HIV-positive persons face became obvious when he claimed that there was "no difference between waiting one day for medications and waiting 30 days for them."
Dr. Beal finally ran out of feet to place in his mouth when he admitted: "We did not invite the [ADAP] consumers in on the decisions involved because it had to be done quickly. We tried to put ourselves in their shoes and think about what we would do."
Officials try to figure out options for HIV/AIDS funding
Source: MidlandsConnect.com - by Emily Pace
June 21, 2010
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COLUMBIA, SC - In a flood of vetoes by Governor Mark Sanford, money for HIV prevention and prescription assistance for AIDS patients was eliminated."It will result in people being infected unnecessarily," says executive director Bambi Gaddist of the South Carolina HIV/AIDS Council. "It will impact the economic structure of hospitals that will be forced to treat people who come into their facility sick without insurance."
Gaddist warned local leaders Monday of the possible implications of the $1 million cut to Project F.A.I.T.H -- an initiative to help prevent the spread of the HIV. All money was also removed from the AIDS Drug Assistance Program (ADAP).
"With 800 new cases a year in South Carolina, we can ill afford to just treat," said Gaddist.
Meeting for the first time, members of the Richland County Legislative Delegation, Richland County Council and Columbia City Council discussed what to do in the wake of $50 million in state cuts.
"I think most people are not aware that Columbia in many ways leads the country in HIV infections. We are number one in the nation for heterosexual transmission of the disease,? said Rep. Joe Neal.
Neal admits the budget cuts has resulted in a long list of problems, but he says tackling HIV/AIDS should be the community's first priority.
A task force will be created in the coming weeks with the goal of trying to figure out options for the funding of HIV/AIDS programs.
Braley unsure if stimulus is quickest remedy for HIV/AIDS prescription shortfall
Source: The Iowa Independent - By Lynda Waddington
May 27, 2010
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DES MOINES, IA - U.S. Rep. Bruce Braley isn't necessarily against redistributing unobligated federal stimulus dollars to other programs with critical needs, but he isn't convinced that doing so as a stop-gap measure for the under-funded AIDS Drug Assistance Program will bring help quickly enough.
The AIDS Drug Assistance Program (ADAP) provides uninsured, under-insured and low-income Americans access to life-saving retroviral medications to combat HIV and AIDS is one portion of the Ryan White CARE Act. For a wide variety of reasons ranging from stagnant federal appropriations to economic decline to increased health for those able to access proper medication, at least 10 states (including Iowa) have had to implement waiting lists. And despite the fact that states have partnered with hospitals, pharmaceutical companies and others in order to help those on waiting lists access prescriptions, the situation is becoming dire.
"The bottom line is that the program is dramatically under-funded," Braley said on a conference call Wednesday. "It is having a dramatic impact in states like Iowa, and we need to find a funding source for it."
The problem Braley sees with utilizing funds from the American Recovery and Reinvestment Act is that the legislation was passed as a two-year program.
"We've gone through the bulk of the spending - but we really don't know right now what could potentially be available at the end of that statutory period," said Braley, a Democrat who represents Iowa's 1st Congressional District. "I don't think we can wait until then to make that decision, but, obviously, if we get to that point and we have not addressed the issue of this funding shortfall than I would be certainly in favor of looking into that."
The proposal to use $126 million from the American Recovery and Reinvestment Act came from a bill filed this week by U.S. Sen. Richard Burr, R-N.C., and co-sponsored by U.S. Sen. Tom Coburn, R-Okla., which has been handed to the Senate Committee on Health, Education, Labor & Pensions (HELP) for further consideration.
U.S. Sen. Tom Harkin, D-Iowa, serves as chairman of the HELP committee, but declined to comment because he had not had opportunity to view the proposed legislation prior to his Thursday morning conference call with reporters.
Braley and U.S. Rep. Leonard Boswell, a Democrat who represents Iowa's 3rd District, were two of nearly 80 members of the U.S. House to sign a letter this month to Pres. Barack Obama, urging that he push for an immediate emergency funding stream in the amount of $126 million for the ADAPs. Despite inquires from The Iowa Independent regarding the letter, the Obama administration has not yet indicated if it will advocate for the additional funding.
On May 10, Iowa had at least 77 people on its ADAP waiting list. According to state officials that figure has now increased to 83 people. Nationally there are at least, and probably more than, 1,100 individuals waiting to access the program. That figure is expected to dramatically increase June 1 when the Florida ADAP implements the second waiting list in its 25-year history.
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