ADAP Pill Box: All Things ADAP
The ADAP Advocacy Association (aaa+) is pleased to share its May 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.
As many of you know, the entire "buzz" inside the Beltway and across the nation among HIV/AIDS advocates is about whether President Barack Obama and Congress will find an additional $126 million to help to alleviate the ongoing ADAP crisis. And it is important to note that the crisis is much more than waiting lists, but the increasing number of other cost containment measures ultimately restricting access to care for people living with HIV/AIDS - among them, restricted eligibility, reduced drug formularies and numerous programmatic caps. As of May 20st, it is being reported by the National Alliance of State & Territorial AIDS Directors (NASTAD) that there are 1,143 people living with HIV/AIDS (PLWHAs) on ADAP waiting lists in ten states - but Florida and Illinois are also expected to start wait lists in the very near future.
Regrettably, partisan gridlock appears to have laid claim to yet another victim leading up to the Memorial Day recess: ADAP funding that will save lives. Both political parties have recognized that the crisis exists and that PLWHAs need immediate assistance - but the leaders of both political parties also appear married to their respective solutions to the problem. On the one hand, House Democrats behind the leadership of Speaker Nancy Pelosi (D-CA) are pushing for a fiscal year 2010 (FY10) ADAP Emergency Supplemental in the amount of $126 million to the states; in fact, on May 19th, 79 House Democrats sent the President a letter urging him to do just that. Their letter reads, in part:
"...we implore you to move immediately for an emergency funding stream for the AIDS Drug Assistance Program of $126 million for use in FY10. Since FY2010 ADAP funds must last until 1 April 2010 - it's abundantly clear that without emergency action the ability for ADAP programs to provide a safety net for low income and underinsured Americans with HIV/AIDS will be seriously damaged. These funds will allow the system to close most of the gaps in the states that currently have wait lists and prevent the states which will need to implement these lists from doing so in the coming months. While we expect implemented health reform to provide significant relief to ADAP we must do everything we can to keep the 1-2 million HIV positive Americans alive, working, and well until health reforms are in place in the coming years."
Unfortunately, no House Republicans endorsed this letter because they demanded that the House adhere to its "PAYGO" system, which was reestablished as a standing rule of the House of Representatives (Clause 10 of Rule XXI) on January 4, 2007 by the 110th Congress. PAYGO is the practice of financing expenditures with funds that are currently available rather than borrowed. The rule reads:
"It shall not be in order to consider any bill, joint resolution, amendment, or conference report if the provisions of such measure affecting direct spending and revenues have the net effect of increasing the deficit or reducing the surplus for either the period comprising the current fiscal year and the five fiscal years beginning with the fiscal year that ends in the following calendar year or the period comprising the current fiscal year and the ten fiscal years beginning with the fiscal year that ends in the following calendar year."
Ironically, PAYGO was abandoned during passage of the Stimulus legislation in early 2009 under Democrat control, as well as the "Food, Conservation, and Energy Act of 2008" (Pub.L. 110-234) under Republican control; most recently at the beginning of the 111th Congress, the Rule was modified by including an "emergency" exemption. Despite that exemption, House GOP members have been steadfast in their opposition to appropriating emergency funding - even for ADAPs - unless it is paid for by cuts elsewhere.
On May 24th, Sen. Richard Burr (R-NC) and Sen. Tom Coburn (R-OK) introduced an alternative solution - which entails using unobligated Stimulus dollars to address ADAP waiting lists and other cost containment measures. The "Addressing Cost Containment Measures to Ensure the Sustainability and Success of the ADAP Act" (S.3401), also known as the ACCESS ADAP Act, 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.[Photo: Sen. Richard Burr (left), Sen. Tom Coburn (center) and Sen. Mike Enzi (right)]
Sen. Burr made the following statement about his legislation:
"More than 600 North Carolinians living with HIV/AIDS have been waiting to access their needed prescription drugs through ADAP. Patients waiting to enroll in ADAP in North Carolina and around our nation are in need of our leadership here in Washington. This bill will ensure that Congress keeps its promise to these patients in need."
Ready for this one, folks? Democrats are so far opposed to the Burr-Coburn legislation. So, where does that leave the 1,143 PLWHAs currently on ADAP wait lists? You guessed it: STILL WAITING!
However, ADAP stakeholders are not sitting idle while the politicians in Washington posture for the upper hand. On May 26th, the ADAP Coalition spearheaded a "National Call-In Day to Save ADAP" - an effort supported by aaa+. Meanwhile, warmer weather isn't the only thing getting hot in our nation's capital because nonprofit advocacy organizations at the national, state and local level have all been turning up the heat! Press releases were issued promptly by aaa+ and the Community Access National Network (CANN) in support of S.3401 - and the AIDS Healthcare Foundation sent a letter to President Obama to the same effect.
Two weeks earlier, James Sykes, Director of Global Programs, Policy and Advocacy for The AIDS Institute, testified before the U.S. House of Representatives Labor, HHS, and Education Appropriations Subcommittee in support of increased funding for domestic HIV/AIDS and Hepatitis programs. Sykes written testimony read, in part:
"Currently, ADAPs are experiencing unprecedented growth. The monthly growth of 1,271 clients is an increase of 80 percent from FY2008 when ADAPs experienced an average monthly growth of 706 clients. State contributions to the program have dropped from $329 to $214 million in just one year. Meanwhile, the federal share of the ADAP program has dropped to only 49 percent, compared to 69 percent in 2000. Due to a lack of funding, states have instituted waiting lists and have reduced the number of drugs on their formularies, reduced eligibility and capped enrollment. There are currently 1,001 people in 11 states on ADAP waiting lists. In order to address the ADAP funding crisis, which will grow even worse in FY11, we are requesting an increase of $370.1 million for a total of $1,205.1 million. To address the immediate situation, The AIDS Institute requests $126 million of those funds in FY10 as part of an Emergency Supplemental."
All ADAP stakeholders are encouraged to continue their diligent efforts when Members of Congress return home for the Memorial Day recess. After all, we've been here before.
As demonstrated by the chart developed by Seth Koch, Manager of Policy & Federal Affairs for the Community Access National Network, ADAP grew quickly in its first few years due to an expansion of new drugs and robust funding from Congress and President Bill Clinton. In 2004, budget cuts and inadequate funding led to significant cost containment measures as well as patients being taken off their medications and placed on a waiting list until more funding could be secured. President George W. Bush created "The Presidential AIDS Initiative" with $20 million in funding to help alleviate the problem. The following year, the pharmaceutical companies which develop and manufacture these drugs instituted a rebate program to states when purchasing drugs through ADAP which also mitigated a catastrophic collapse of ADAP. In 2006, Medicare Part D began coverage for some beneficiaries who had been receiving their regimen through ADAP, further sustaining the program despite the waiting lists. It was not until 2007 that the aggregate effects of these funding bumps completely cleared all patients of the waiting list.
But as we all know too well, it didn't take long for the ADAP waiting lists to return.
Since the ongoing crisis facing ADAPs nationwide is ever-changing and impacting so many states, we've determined that our virtual training (ADAP VIRTUAL TRAINING APPLICATION: Linking AIDS Drug Assistance Programs to Pharmaceutical Prescription & Co-Payment Assistance Programs) should be made available to all interested parties, regardless of whether the state has a waiting list. The remaining two virtual training applications will take place on Tuesday, June 1st, and Wednesday, June 9th. Interested parties can choose either one, and REGISTRATION IS FREE!
For more information about the ADAP VIRTUAL TRAINING APPLICATION, please contact Brandon Macsata at info@adapadvocacyassociation.org.
Thanks for your ongoing interest and support!
Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)
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 May 2010 ADAP Watch
May 20, 2010
The National Association of State & Territorial AIDS Directors (NASTAD) released its May 2010 edition of ADAP Watch. As of May 20th, there were 1,143 individuals on ADAP waiting lists in ten states - including 5 individuals in Hawaii, 30 individuals in Idaho, 84 individuals in Iowa, 146 individuals in Kentucky, 18 individuals in Montana, 602 individuals in North Carolina, 112 individuals in South Carolina, 32 individuals in South Dakota, 97 individuals in Utah and 17 individuals in Wyoming ADAP Stakeholders are concerned that the situation on the ground in Arkansas, Florida, Illinois, Louisiana and Nebraska!
Read ADAP Watch - May 2010
Senate Takes Action on ADAP Crisis S.3401 "The ACCESS ADAP Act"; North Carolina and Oklahoma Senators Take Lead on Solving Crisis
Source: Community Access National Network press release
May 25, 2010
WASHINGTON, D.C. - The Community Access National Network (CANN) commends Senator Richard Burr (NC) and Senator Tom Coburn (OK) for their leadership in solving the ongoing AIDS Drug Assistance Program (ADAP) crisis. The ACCESS ADAP Act, introduced in the Senate on Monday, provides $126 million to ADAP for the remainder of fiscal year 2010 to address the immediate need of individuals on waiting lists, to prevent these lists from expanding to more states, and to recover every patient who has been taken off their comprehensive drug regimen.
"More than 600 North Carolinians living with HIV/AIDS have been waiting to access their needed prescription drugs through ADAP. Patients waiting to enroll in ADAP in North Carolina and around our nation are in need of our leadership here in Washington," stated Senator Burr, a member of the Health, Education, Labor and Pensions Committee. "This bill will ensure that Congress keeps its promise to these patients in need."
The money for ADAP is stipulated to be allocated from unobligated discretionary funds in the American Recovery and Reinvestment Act. The Department of Health and Human Services alone received a specific $22 billion in discretionary authority to be obligated through September of 2010. This discretionary funding is to be used for improving and preserving health care as well as promoting prevention and wellness.
"At a time when waiting lists are growing with no end in sight and these patients no longer have access to their life-saving drugs through ADAP, there couldn't be a more appropriate funding stream to deal with the preservation of healthcare and the promotion of these individual's wellness," commented William Arnold, Executive Director of CANN. "Keeping folks alive is stimulus."
Two of every three patients using ADAP services are minorities and one of every two fall beneath the federal poverty level. The bill will ensure that ADAP is able to follow through on administering life-saving medications to uninsured and underinsured HIV/AIDS patients enrolled in the Ryan White program. To date, multiple patients on the waiting list have died while their access to ADAP has been denied.
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Burr, Coburn Bill Would End AIDS Drug Waiting Lists with Stimulus Funds
Source: CQ STAFF, CQ HEALTHBEAT NEWS
May 25, 2010
Republican Sens. Tom Coburn of Oklahoma and Richard M. Burr of North Carolina have offered legislation that would open access to AIDS medications to low-income Americans now on waiting lists for such treatments.
Tight funding for the AIDS Drug Assistance Program (ADAP), a federal-state program created for people unable to get access to lifesaving AIDS treatments, has led to growing waiting lists, says the Community Access National Network, a group of AIDS organizations and drug companies that lobbies for ADAP funding.
The measure (S 3401) would provide $126 million to ADAP using unobligated discretionary funding from the economic stimulus law. "More than 600 North Carolinians living with HIV/AIDS have been waiting to access their needed prescription drugs through ADAP," said Burr.
"At a time when waiting lists are growing with no end in sight and these patients no longer have access to their life-saving drugs through ADAP, there couldn't be a more appropriate funding stream to deal with the preservation of healthcare and the promotion of these individuals' wellness," added William Arnold, executive director of the Community Access National Network. "Keeping folks alive is stimulus."
The group said that funding is a matter of life and death. "To date, multiple patients on the waiting list have died while their access to ADAP has been denied," it said.
Partisan gridlock contributes to HIV/AIDS prescription wait lists; Democrats, GOP agree on need for more funding, differ on where that money should come from
Source: By Lynda Waddington | Iowa Independent
May 26, 2010
At least 77 Iowans are among more than 1,000 people in 10 states who have tested HIV positive but have been placed on a waiting list for access to life-saving prescriptions.
The AIDS Drug Assistance Program (ADAP), a portion of the Ryan White CARE Act, provides medications to uninsured and under-insured people living with HIV and AIDS. The program is a pharmaceutical provider of last resort, and has been severely crippled in the past decade by increased need and stagnant federal funding.
Funding for the current fiscal year is expected to maintain the program through April 1, 2011. But at least 11 states have already been forced to implement or announce waiting lists. Both Republicans and Democrats in Congress agree that additional funding is needed, but can?t agree on a source for the funds.
And unless Congress is able to break partisan gridlock and provide emergency funding for the program, advocates fear many more states - some estimates go as high as 25 - will institute waiting lists.
"The economy is, of course, playing a role in this current crisis," said Brandon M. Macsata, chief executive of the ADAP Advocacy Association. "You have people losing work, and having to find alternative methods of accessing care. State budgets are also under serious pressure."
"But what is really of concern to us is that the federal share of ADAP spending has dropped dramatically from about 74 percent to roughly 52 percent. So, as far as we are concerned the federal government is not living up to its responsibility for this important program."
Nearly 80 members of the U.S. House, including Iowa Democrats Bruce Braley and Leonard Boswell, signed a May 19 letter to President Barack Obama, requesting that he call for an emergency funding infusion into the program of $126 million.
Despite the rapid clip at which HIV infections continue to spread, the Congress has failed to enable The Ryan White CARE Act to grow apace with the epidemic and ADAP has been severely underfunded... The public wait list is only the tip of the iceberg and remains a very last resort for most states, often times preceded by reduced formularies and cuts to eligibility levels in order to avoid the creation of a wait list. By policy some states do not allow the public to see an official ADAP waiting list.
Because so many states are already implementing cost-saving measures, the congressional letter said, "It's abundantly clear that without emergency action the ability for ADAP programs to provide a safety net - will be seriously damaged."
State ADAPs with Waiting Lists, as of May 10, and Persons Impacted:Florida officials announced this week that they would implement a waiting list effective June 1. And, on May 21, an Illinois state advisory panel has urged state lawmakers to immediately implement a waiting list.
"Congress is getting ready to pass two emergency supplemental [appropriation bills] to the tune of $197 billion dollars, and all we are asking for is $126 million," said Macsata. "There has been push-back from both levels. The Republicans have been reluctant to approve emergency supplemental funding that isn't otherwise paid for - what is referred to in Washington as pay-as-you-go...the Democrats are saying, no, we need to just go ahead and appropriate it. But because they can't agree, nothing is getting done on this."
Specifically, Republicans in Congress would like to see stimulus monies, whether earmarked or not, be used to cover shortfalls within ADAP.
On Monday, Republican U.S. Sens. Tom Coburn of Oklahoma and Richard Burr of North Carolina introduced a bill that would direct $126 million in unobligated stimulus funding to the U.S. Department of Health and Human Services, in order for her to address the waiting lists and other cost-containment measures that have been implemented by state ADAPs. The move was praised by Michael Weinstein, president of AIDS Healthcare Foundation, who encouraged Democratic senators to quickly sign-on and approve the measure.
"These funds will directly and immediately save lives," Weinstein said. "Just last week, a person on an ADAP waiting list in South Carolina died because they could not access lifesaving antiretroviral drugs. As far as we are concerned, this is stimulus; people with HIV/AIDS who get their lifesaving drugs can continue to work and be productive."
In April, Coburn and Burr cooperated with Republican Sen. Mike Enzi of Wyoming to send an inquiry letter to U.S. Secretary of Health and Human Services Kathleen Sebelius. In that letter the trio suggested that $9.5 million in stimulus funding earmarked for renovations in a California AIDS office be used for ADAP, and requested that Sebelius answer three questions related to the crisis, the department's statutory authority to use existing funds and possible use of other stimulus monies. A spokesman in both Enzi's and Burr's office confirmed Tuesday that Sebelius or no member of her staff had yet provided a response to the letter.
"What we have, once again, is the parties coming at this from two different angles instead of sitting down together and coming up with a solution to the crisis, they are both digging in their heels," Macsata said. "Meanwhile, these waiting lists continue to grow - here, in the richest country in the world, we have people waiting to access medications that we know keep them healthy, keep them out of the emergency room and make them productive members of society."
Because of the ongoing and worsening crisis, the ADAP Advocacy Association will be asking individuals across America to contact their representatives in Congress and urge them to take action that will end the waiting lists.
"This is a bipartisan issue - HIV does not discriminate," Macsata said. "This has typically been an issue that has received bipartisan support - and I think there still is bipartisan support, but I also think there is toxicity in Washington, D.C. that is in play. [This need] is getting caught up in the partisanship, and that is a shame. We hold both parties equally accountable."
"We are demanding action from the president and Congress. Whatever it is that you have to do, just come to an agreement and help the nearly 1,100 Americans that are waiting to access the medications we know will keep them healthy and productive."
As States Finalize Their Budgets, the ADAP Crisis Continues
Source: By Becky Allen, TheBody.com
May 25, 2010
As of May 20, there are 1,143 people in 10 U.S. states who are on waiting lists for their states' AIDS Drug Assistance Programs (ADAPs), which help low-income HIVers who are often uninsured pay for HIV/AIDS medications.
In South Carolina, one person has already died on the waiting list, which has grown to 112 people -- and the situation there may be getting worse this week. In March, a proposed South Carolina budget cut all funding for ADAP. The budget, which enters a final round of debates today, would also cut money for other health services, such as cancer screenings, and limit Medicaid to cover only three drug prescriptions per person. The South Carolina Campaign to End AIDS rallied in protest of the budget this morning.
More ADAP news is coming in from across the country as states seek to finalize their 2010-11 budgets:
Good news for ADAP is rare, but there has been some this month: The ADAP Crisis Task Force (ACTF) has met with all eight pharmaceutical companies that produce brand-name HIV/AIDS medications in the U.S. and has reached agreements with Abbott, Merck and Tibotec to help ADAPs in need. With this agreement, the companies will increase discounts and rebates and freeze prices on some HIV drugs for ADAPs, as well as improve access to pharmaceutical-based patient assistance programs for people left on ADAP waiting lists. ACTF is hopeful about reaching similar agreements with the other companies.
ADAP Crisis Task Force Reaches Agreements with Abbott, Merck and Tibotec
Source: ADAP Crisis Task Force press release
May 11, 2010
Washington, DC - With 1,056 people on waiting lists and many other access restrictions in place for individuals to receive consistent access to their HIV-related medications through AIDS Drug Assistance Programs (ADAPs), the ADAP Crisis Task Force (ACTF) announced that it has reached agreements with Abbott Laboratories, Merck and Co., Inc. and Tibotec Therapeutics to bring fiscal relief to the nation's state-administered ADAPs. The agreements are enhancements of long-term, existing partnerships and will help achieve savings through a mix of program adjustments including price freezes and increased discounts and rebates for HIV antiretroviral treatments as well as improved access to pharmaceutical Patient Assistance Programs (PAPs) for clients on ADAP waiting lists.
"Abbott, Merck and Tibotec's willingness to help with this crisis demonstrates that they are fully carrying their share of the burden, strengthening the case for further assistance from the federal and state governments at this critical time of unprecedented need for ADAPs," 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 these companies have come together to find ways to bridge the gap that ADAPs are experiencing in providing life-saving medicines to our most disadvantaged and underserved populations," added Brown.
The ACTF, convened by the National Alliance of State and Territorial AIDS Directors (NASTAD), met last week with all eight companies that manufacture HIV antiretroviral treatments in an effort to 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.
In addition to the agreements already reached, favorable negotiations continue with Boehringer Ingelheim, Bristol-Myers Squibb, Genentech, Gilead Sciences and ViiV Healthcare. "We are hopeful that agreements similar to these newly announced ones can be completed soon with the remaining manufacturers," noted Dwayne Haught, Manager of the HIV Medication Program for the Texas Department of State Health Services and a member of the ACTF. "Abbott, Merck and Tibotec have a keen understanding of the ADAP crisis and demonstrated strong leadership by coming to the table with significant financial commitments to assist ADAPs during this crisis. They have gone far beyond the mandated discounts to develop solutions for ADAPs that will help meet the needs of nearly 200,000 HIV-positive Americans," added Haught.
NASTAD routinely monitors the status of ADAP program needs on a continual basis. While the program will yield a savings from price freezes and increased discounts and rebates in drug prices, the trend of a deteriorating situation in both state government budgets and increasing demands on ADAP program enrollment continues to accelerate, resulting in a net additional need. NASTAD and other partners estimate the program is in need of an additional $126 million in FY2010 emergency federal funding as well as critical state funding. Increased funds from the federal and state governments in addition to price freezes and increased discounts and rebates from companies are all necessary to sustain ADAPs until health reform is fully implemented in 2014.
"We believe we have reached the perfect storm where the federal and state governments and our pharmaceutical partners must step up and ensure that eligible ADAP clients have access to their medications," remarked Julie Scofield, NASTAD's Executive Director. "With company agreements in place and others at the table demonstrating their commitment, we again call upon President Obama to provide sufficient funding to ease access restrictions in ADAPs nationwide. We also urge state legislatures to maintain and increase their support of ADAPs during this critical period," she added.
The nation's current economic situation, increased HIV testing efforts and more individuals living longer have resulted in a "perfect storm" that has rapidly resulted in swelling ADAP rolls. During FY2009, clients utilizing ADAP services increased by an average of 1,271 individuals per month. This is an unprecedented increase of 80 percent from FY2008 when ADAPs experienced an average monthly growth of 706 clients. ADAPs are the safety net under other public programs, such as Medicare and Medicaid. Over seventy-five percent of ADAP clients earn less than 200 percent of the federal poverty level, which is $22,000 for an individual.
As of May 6, there were 1,056 individuals in ten states on waiting lists for ADAP. 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 formulary and capping expenditures. To see a list of states with access restrictions please visit NASTAD?s website at www.nastad.org.
The ADAP Crisis Task Force (ACTF) was formed in December 2002 by a group of state AIDS/ADAP directors concerned about the nationwide fiscal crisis facing ADAPs. The ACTF works with pharmaceutical manufacturers of antiretroviral medications to determine solutions to the nation's ADAP fiscal crises. NASTAD provides logistical support for the ACTF. Founded in 1992, NASTAD is a nonprofit national association of state and territorial health department HIV/AIDS program directors who have programmatic responsibility for administering HIV/AIDS and viral hepatitis health care, prevention, education, and supportive services programs funded by state and federal governments. For more information, visit www.nastad.org .
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CLICK HERE to read related press release, "Merck and The ADAP Crisis Task Force Announce Key Initiatives to Help Provide Funding Relief to AIDS Drug Assistance Programs (ADAPs) across the U.S."
Release of the National ADAP Monitoring Project 2010 Annual Report
Source: National Alliance of State & Territorial AIDS Directors
May 3, 2010
On May 3rd, NASTAD released its 2010 National ADAP Monitoring Project Annual Report during the opening session of its Annual Meeting. The full report and presentation are available on NASTAD's website, www.nastad.org. Please feel free to contact Beth Crutsinger-Perry if you have questions.
ACROSS THE NATION...
North Carolina Group Lobbies Lawmakers for ADAP Funding
Source: TheBody.com
May 26, 2010
RALEIGH, NC - The North Carolina AIDS Action Network dispatched members to the Legislative Building on Tuesday to lobby lawmakers for more support for HIV/AIDS efforts. The activists asked legislators to allocate $18 million in the coming year so the state AIDS Drug Assistance Program can clear its waiting list and accept new enrollees. Many of the advocates wore a sticker reading "602" -- the number of low-income patients they say are waiting for ADAP's help to access HIV/AIDS medications.
Stop ADAP Waiting List in Illinois!
By AIDS Foundation of Chicago
May 27, 2010
CHICAGO, IL - Facing an historic budget crisis that could destabilize HIV treatment access for more than 4,000 low-income Illinoisans with HIV/AIDS, a state advisory panel voted on May 21 to urge Illinois to immediately close the AIDS Drug Assistance Program (ADAP) to new applicants and begin a waiting list. The recommendation is now under review by state officials. "Because the program is deeply underfunded, Illinois must take immediate steps to preserve services for those who rely on ADAP for their life-saving care," said David Ernesto Munar, vice president of the AIDS Foundation of Chicago (AFC), and a member of the ADAP Medical Issues Advisory Board, which made the recommendation. "The program faces total fiscal collapse unless immediate actions are taken."
TAKE ACTION NOW!
The Medical Issues Advisory Board, comprised of doctors, pharmacists, legal experts, advocates, and people with HIV, advises the Illinois Department of Public Health on ADAP policy. Jointly funded by the state and federal governments, ADAP provides HIV medications to low-income, HIV-positive Illinoisans who have no other means to afford the costly HIV therapies they need.
"Denying urgent HIV care will only heighten Illinois's already acute HIV crisis and result in greater numbers of preventable HIV deaths and new infections," said AFC President/CEO Mark Ishaug. "We call on Illinois Governor Pat Quinn, the Illinois General Assembly and the federal government to provide immediate assistance to maintain this and other core public health and HIV programs."
"Investing in ADAP is good public health policy and good fiscal policy," said John Peller, AFC's director of government relations. "To close the state's $12 billion budget deficit, state lawmakers should approve fair-minded tax increases. Meeting Illinois's current and future health, education, public safety, child care, and senior needs, depends on an adequately funded public safety net."
The Illinois General Assembly will convene this week in Springfield to finalize the fiscal year 2011 state budget. Governor Quinn's proposed budget would under-fund HIV-related services by more than $4 million.
"The General Assembly and Governor Quinn must act this week to avert ADAP waiting lists by allocating sufficient funding for the program," continued Peller. "For the past decade, Illinois ADAP has been one of the strongest ADAPs in the nation. We urge the state's leaders to uphold their promise that people with HIV in Illinois can get help from the state when they need it the most."
Advocates estimate that an additional $9.68 million in state funding in fiscal year 2011 is needed to avert a waiting list. In April 2010, 4,391 Illinoisans with HIV obtained HIV medications through ADAP, a new record. Each month, more than 100 people join the program.
Without ADAP or adequate insurance, HIV medications are simply too costly to afford for most people. An HIV medication regimen can cost as much as $20,000 per year.
"People of color will be most impacted by a closed program and waiting list," said Rev. Doris Green, AFC director of correctional health and community affairs. "Two out of three people using Illinois ADAP are African American or Latino. People of color are disproportionately impacted by HIV and they tend to be diagnosed at later stages of disease than their white counterparts. An ADAP waiting list will only worsen existing health disparities."
Because of the weak economy, many people with HIV have lost their jobs and are turning to ADAP for help. Thanks to the medications they receive, HIV-positive individuals already on ADAP are living longer and needing uninterrupted services for longer periods of time. Additionally, expanded HIV testing efforts are increasing the number of low-income people who know their HIV-positive status and need medical assistance.
ADAPs across the nation are facing financial crises. Illinois would become the 12th state to institute a waiting list if the advisory panel's recommendation moves forward. More than 1,000 individuals are currently on ADAP waiting lists across the U.S.
"It's a national embarrassment that people with HIV can't get access to the medications that will allow them to work, thrive and contribute to society," said Munar, who is living with HIV. "The United States is failing to meet the most basic need of people with HIV-medications that will extend their lives."
For more information about ADAP and the Illinois state budget crisis, visit www.aidschicago.org/budget.
Waitlist formed for Florida's AIDS Drug assistance program
By Dmitry Rashnitsov, Florida Agenda
May 27, 2010
TALLAHASSEE, FL - With one of the highest HIV infection rates in the United States, Florida's department of public health has many programs in place to help those that cannot afford to pay for the costly medications to fight the disease. But due to budget cuts in the state government one of the programs is being severely reduced in its scope.
Florida's AIDS Drug Assistance Program (ADAP) ensures that underserved and uninsured individuals living with HIV/AIDS have access to life-saving medications, but now some of the hardest hit individuals will be put on a waitlist because the program simply does not have the funding to continue to support everyone.
About 18,000 people qualified for ADAP in Florida because they met the requirements of being at 400% or less of the Federal Poverty Level; uninsured or without adequate prescription coverage; and not confined to a hospital, nursing home, hospice, or correctional facility. 9,000 of those people live in South Florida. Beginning June 1, anyone who applies for this program will be put on a waitlist until someone leaves the program.
"There are some cases where medical exemptions will be granted," wrote Shairi R. Turner, Florida Health Department Deputy Secretary for Health, in an interoffice memo.
Some of those exempt from the waiting list are people who meet all other ADAP requirements who are pregnant, children, post-partum women, patients who are on chemotherapy and those that also have hepatitis B infections.
The waitlists were necessary because Florida's ADAP saw a jump of 25 percent in the number of people applying for the program in the last two years, Turner wrote.
Also starting August 1, Florida ADAP will reduce the number of antiretroviral drugs it approves for patients.
Florida joins 10 other states who have waiting lists and about 12 other states that are considering them.
"This is terrible news," said Michael Rajner, a Fort Lauderdale HIV/AIDS activist. "We rely on the program for help with the drugs that keep us alive. Without it, I don't know what people would do."
National HIV/AIDS are urging President Barack Obama to use emergency funds to restore the ADAP programs all over the country for the roughly 1,140 people who are currently on waitlists.
"One possible source for these funds is the roughly $20 billion in unspent and unallocated funding for HHS (Health and Human Services) from the American Recovery and Reinvestment Act. A small portion of these funds re-directed to ADAPs could immediately resolve this crisis," wrote AIDS Health Care Foundation President Michael Weinstein in a letter to the President.
According to the AHF, there are approximately 1.2 million people in the US living with HIV/AIDS today. ADAPs serve over 160,000 people, accounting for nearly one third of the people on AIDS treatment in the U.S.
"Maintaining a sustainable drug assistance program is a critical need in our state," Turner wrote. "Additional costcontainment measures are carefully being considered and evaluated to ensure the most effective and proactive response during these challenging times."
Florida door to slam next week on program for people who can't afford AIDS drugs
Jane Musgrave, Palm Beach Post
May 26, 2010
PALM BEACH, FL - Workers at Palm Beach County's Comprehensive AIDS Program are hustling to get 10 patients signed up for life-saving drugs through a state program before the door slams shut next week, said agency CEO Yolette Bonnet.
On Tuesday, for only the second time in the nearly 25-year history of the state's AIDS Drug Assistance Program, no new people will be eligible for help. Except for high-risk cases, such as pregnant women, people in need of the expensive medications will be placed on a waiting list, said Tom Liberti, chief of the Bureau of HIV/AIDS for the Florida Department of Health.
Already serving 1,730 people, Palm Beach County officials are anticipating that they will be unable to provide medicine for as many as 240 new clients - nearly 30 a month. That is how many people they anticipate will need help before a new funding cycle begins next spring.
While state officials aren't making similar projections, figures show that across Florida a record-breaking 2,500 new people signed up for the program during the fiscal year that ended March 30.
And until the economy improves and people head back to work, Liberti said he sees no sign that demand will drop.
"It's the recession," he said of the reason program rolls skyrocketed to 18,000 this year.
Designed to serve low-income people, the uninsured and the underinsured, the program offers the last hope for people who have no other means to obtain the medicine that can cost more than $1,000 a month. When the state's unemployment rate began climbing, so too did the number of people in need of free medicine or money to fill gaps in their insurance coverage, he said.
"It's a very painful thing for us to do," Liberti said of the enrollment cap.
And very scary, said Channell Wilkins, director of Palm Beach County's Department of Community Services.
"I can't imagine it's not going to have some very serious ramifications," he said. Without drugs to keep the disease in check, he imagines increased hospital emergency room visits and increased demands on other programs that are designed to provide a safety net for people in distress.
A county health planning council will meet Friday to determine whether money can be pulled from other government-funded AIDS programs. But, Wilkins said, the need is too great. In Palm Beach County alone, it would cost $810,000 to provide medicine for the additional 240 people that are expected to seek help during the next nine months.
"There's just too much money being pulled out of the system," he said. "There's going to be a gap."
The problem is compounded because the county only received notice of the looming funding gap last week, he said.
Liberti said state officials realized the program was going to hit a funding crisis in April when they learned how much it would get from both the federal and state governments. While federal funding has remained steady at about $85 million a year, over the last four years the state has pulled about $1 million out of the $10.5 million annually it once gave the program.
"It became clear we didn't have enough money to fund new enrollments," he said.
Other states have already capped enrollment. Nationally, there are roughly 1,100 people on waiting lists in 10 states. Additional states are considering taking similar action. Florida, in contrast, hasn't had to institute a cap since demand swelled when ground-breaking protease inhibitors came on the market roughly 13 years ago.
Liberti said there is some reason for hope. A bill was introduced in Congress this week that would provide $126 million in emergency funding to the program nationwide. Further, he said, changes in Medicare that will kick in Jan. 1 as a result of this year's national health care overhaul, should reduce the number of people who need assistance.
Recently, AIDS drug manufacturers agreed to freeze prices and increase discounts. Further, in the wake of the funding crisis, efforts will be made to appeal to drug companies to increase drug giveaways to low income people.
But, Liberti said, the key is the economy. The quicker people get back to work, the quicker demand will abate.
"My biggest worry is that relief doesn't come as quickly as we're hoping," he said. "Then, we're talking about a very serious waiting list."
South Carolinians Rally as More Die on ADAP Waiting Lists
Housing Works
May 25, 2010
COLUMBIA, SC - Three hundred activists - startled by skyrocketing waitlists for critical AIDS medication - staged a rally on the steps of the South Carolina statehouse in Columbia on Tuesday.
The protest was a reaction to the growing number of people on AIDS Drug Assistance Program (ADAP) waitlists. This joint federal-state program provides essential AIDS medications to poor people living with HIV.
1,143 in Need
In South Carolina, 112 people are waiting for critical AIDS drugs, according to a May 21 ADAP Watch document."It's simply not a priority," said Housing Works' Director of National Organizing Larry Bryant, who attended the rally. Prompted by the recent death of a South Carolinian waiting for medication from ADAP, the event also memorialized Stephanie Williams, a former co-chair of the S.C. Campaign to End AIDS who played an instrumental role in forcing South Carolina to take action on its lack of ADAP funding in 2007.
The waitlists have resurfaced, and the rally of 10-plus organizations gathered under a gray May sky in Columbia served as a potent reminder that Williams' fight has yet to be won. Members of the Campaign to End AIDS participated in the demonstration.
The South Carolina crisis is not unique - waitlists have ballooned since the economy tanked, forcing state governments to slash budgets. At least 1,143 people nationwide are waiting for ADAP medications. Ten states now have wait lists - North Carolina's tops the charts at 602 individuals - and ADAP Watch predicts several more states will create lists in the coming year.
On Monday, Senators Tom Coburn (R-OK) and Richard Burr (R-NC), introduced a bill that would send $126 million in stimulus funds to the Department of Health and Human Services to resolve ADAP problems, including the waitlists. The senators now seek additional Congressional support for the bill.
Activists argue that by not properly funding ADAP, state and federal governments will eventually pay more - not less - to help HIV-positive individuals.
"The ironic thing is that providing prescription medications to poor people living with AIDS actually saves the state money by keeping people well," said Karen Bates, who fought with Williams to eliminate waitlists in 2007.
California State's AIDS drug program largely safe from cuts
By Seth Hemmelgarn, The Bay Area Reporter
May 19, 2010
SACRAMENTO, CA - Governor Arnold Schwarzenegger proposed slashing funds for people with mental health issues and families with children today [Friday, May 14] in his revised budget proposal.
Hoping to plug a $19.1 billion budget gap for 2010-11, the governor called for $12.4 billion in cuts.In announcing his cuts, Schwarzenegger said there's no more "low hanging fruit" to pick. And no medium or high hanging fruit, either.
"We have to take the ladder from the tree and shake the whole tree," he said.
But Anne Donnelly, director of health care policy for Project Inform, said the cuts, especially to Medi-Cal, are "really just an attack on the poor."
"It's just pretty outrageous," Donnelly told the Bay Area Reporter shortly after the cuts were announced.
There appeared to be some relief for people worried about the AIDS Drug Assistance Program.
Donnelly said the state ADAP took a $32.7 million adjustment, but that's mostly for administrative items, from what she and other advocates have been able to determine.
"It shouldn't affect ADAP services," said Donnelly.
However, she said, that also includes elimination of support to county jail inmates.
Large cuts have also been proposed in other parts of the budget.
"We are extremely worried about the cuts to other health care programs," Courtney Mulhern-Pearson, the San Francisco AIDS Foundation's policy and legislative associate, told the B.A.R. "We're talking about extremely limited-income people. Any cost increase results in limited access."
The reductions include $523 million from Medi-Cal."
Under Medi-Cal cuts, Donnelly said utilization controls are what she and others are most worried about.
The governor's proposal includes eliminating certain over the counter drugs, such as aspirin and cold medicine.
"That could seem minor, except we're talking about people who really have no money to support them," said Donnelly.
The proposal also includes eliminating prescriptions to six per month, except for "life-saving drugs," with no clarity about which drugs are in that category, she said.
The governor also wants to limit the number of clinician or physician visits to 10 per year.
Donnelly said another serious concern includes co-payments, such as $50 co-pays for emergency room visits.
In a conference call after Schwarzenegger's announcement Friday, Dr. Michelle Roland, chief of the state Office of AIDS, said the news on ADAP was "very, very good."
Roland also said there?s less money included in the budget proposal for the program because there's less need for the money. She said reasons for this include national health care reform and an increase in Ryan White Part B money, which is federal money that's distributed by the state.
However, Roland also noted the state legislative process "is a long process, it is a confusing process," and "we never really know what we?re going to be left with until we have a si