ADAP Pill Box: All Things ADAP
The ADAP Advocacy Association (aaa+) is pleased to share its July 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 email@example.com so that we can include them in the next edition.
Earlier this month, after fifteen months of the White House's Office of National AIDS Policy (ONAP) coordinating an intense national dialogue about the status of HIV/AIDS in the United States, President Obama's Administration finally released its long-awaited National AIDS Strategy (NAS) - which was the first in the nation's extended battle fighting the disease. CLICK HERE to watch White House video clip of President Obama's remarks about the National AIDS Strategy.
Unfortunately, aside from all the hype and fanfare, it lacked the necessary funding to ensure the plan's effectiveness. In fact, some groups - notably led by the AIDS Healthcare Foundation and Housing Works - called the plan a step backward, threatening to undermine prevention efforts and access to care for the people living with HIV/AIDS. aaa+ was a little more tepid in its criticism on the NAS, but nonetheless our message to President Obama was clear: We expected better, Mr. President!
CLICK HERE TO WATCH the ADAP Advocacy Association's statement during an AHF press conference held at the National Press Club (note: please go to minute 7 to hear my remarks).
Learn more about the National AIDS Strategy:
The NAS came on the heels of the Obama Administration also announcing it was making available $25 million in emergency ADAP funding. Unfortunately, it only represented about 20 percent of the money needed to adequately address the ADAP crisis - and that's a conservative estimate keeping in mind that the $126 million being requested would only eliminate existing waiting lists. It also does not even deal with the growing number of people living with HIV/AIDS who are being pushed off the program as states restrict their eligibility criteria.
Taking a strong stand on this crisis is apparent to anyone who attending the "AIDS Drug Assistance Program Crisis Summit" on July 5-7th in Washington, DC hosted by aaa+, in collaboration with the Community Access National Network (CANN) and Housing Works. The two words that best characterized the collective sentiment of the 100+ ADAP stakeholders in attendance representing their communities were fear and anger! We invite you to learn more about the ADAP Crisis Summit:
Moving forward we will continue to raise the red flag of caution with the White House and Congress until the escalating perfect storm ravaging the nation's AIDS Drug Assistance Program is adequately addressed beyond the lip service of our politicians and the band-aid funding remedies being proposed by them.
Thanks for your ongoing interest and support!
Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)
P.S. - In November 2008, I was asked to pen an article about the "Politics of ADAP" for GMHC's Achieve Magazine. In light of the ongoing ADAP crisis, I thought that you mind find the article relevant: "The Politics of ADAP".
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/.
NASTAD Releases May 2010 ADAP Watch
July 23, 2010
The National Association of State & Territorial AIDS Directors (NASTAD) released its July 2010 edition of ADAP Watch. As of July 23rd, there were 2,158 individuals on ADAP waiting lists in thirteen states - including 839 individuals in Florida, 192 individuals in Georgia, 13 individuals in Hawaii, 29 individuals in Idaho, 98 individuals in Iowa, 214 individuals in Kentucky, 189 individuals in Louisiana, 22 individuals in Montana, 182 individuals in North Carolina, 231 individuals in South Carolina, 23 individuals in South Dakota and 126 individuals in Utah. Editor's Note: There are an unknown number on the Ohio ADAP waiting list!
Read ADAP Watch - July 2010
ADAP Crisis Continues; Additional Action Required as Federal and State Governments and Pharmaceutical Companies Respond
WASHINGTON, D.C. (July 21, 2010) - There are now 1,879 individuals on waiting lists to receive consistent access to their HIV-related medications through AIDS Drug Assistance Programs (ADAPs) in 12 states. In addition to initiating waiting lists, 15 states have implemented or anticipate implementing other access restrictions such as lowering income eligibility criteria, removing drugs from their formularies and capping expenditures. Several states report an uncertainty about covering current clients through the end of the fiscal year without additional funding and several have disenrolled clients as their programs have decreased income eligibility levels. Other states are also considering this action. To see a list of states with access restrictions please visit NASTAD's website at www.NASTAD.org.
"ADAPs are in crisis and all of our partners must continue to respond to ensure that eligible ADAP clients have access to their medications," remarked Julie Scofield, NASTAD's Executive Director. There are signs of success in addressing the crisis, but much remains to be done. "With most of the pharmaceutical company agreements in place and others still at the negotiating table, we again call upon Congress and state legislatures and Governors to provide sufficient funding to ease access restrictions in ADAPs nationwide," Scofield added. NASTAD believes that a comprehensive solution to the ADAP crisis requires increased resources from the federal and state governments as well as deeper discounts, increased rebates and price freezes from pharmaceutical manufacturers of HIV medications.
The Obama Administration recently announced that it is reprogramming $25 million to address ADAP waiting lists and other unmet ADAP needs. This funding is expected to be distributed to states in mid-August. In addition, approximately $17 million in Ryan White Part B Supplemental grants will be distributed to states in early August and is expected to be used in many states to help address ADAP needs.
"NASTAD commends President Obama and Secretary Sebelius for helping to provide funding to ADAPs during our nation's ongoing economic crisis," remarked Scofield. "At the same time, however, $25 million is far less than what is required to shore-up all state ADAPs and prevent further cost-containment measures or access barriers," she continued. NASTAD and the HIV/AIDS community have been advocating for $126 million in additional FY2010 funding. Last week, the House Labor-HHS-Education Appropriations Subcommittee recommended an increase of $50 million for ADAPs in FY2011, which includes the $25 million in reprogrammed FY2010 funding. NASTAD continues to advocate for additional resources for FY2010 and FY2011 and urges Congress to provide its fair share of increased resources to address the ADAP crisis.
State governments have traditionally and over time provided growing support to ADAP programs with a total contribution in FY 2009 of $215 million. Although state support in 2009 decreased compared to 2008 as a result of state fiscal crises, there is evidence that state general revenue funds are being maintained, and in some cases increased, for ADAPs. NASTAD applauds state legislatures and governors who have prioritized funding for ADAPs in their budget processes.
For example, the North Carolina Governor and General Assembly recently appropriated an additional $14.1 million in recurring funding to the state's ADAP, making it possible to remove 627 people from their waiting list which was previously the largest in the nation. This action brings North Carolina's contribution to $25.5 million, or one half of the funding available for the state's ADAP clients. And California's yet to be enacted budget for FY2010-2011 includes a proposed increase of $54.8 million in new general fund support, on top of the $70.9 million in general fund support for FY2009-2010. For FY2010-2011, the total state general fund support would be $125.6 million, which would exceed their federal ADAP grant. Even with the proposed general fund increase, however, the program proposes the elimination of ADAP services to city and county jails.
Other states, including Hawaii, Idaho, Missouri, Nebraska, Pennsylvania, Texas, Virginia, Washington, and Wisconsin, report that their legislatures and governors have also maintained or increased funds to ADAPs. NASTAD calls on other states to provide their fair share of increased resources to address the growing ADAP crisis.
Finally, NASTAD recognizes the contribution pharmaceutical manufacturers have made and continue to make to help alleviate the fiscal challenges ADAPs are experiencing. Abbott Laboratories, Boehringer Ingelheim, Gilead Sciences, Merck and Co., Tibotec Therapeutics and ViiV Healthcare have all reached substantial pricing agreements with the ADAP Crisis Task Force to provide deeper discounts and rebates as well as price freezes on HIV medications for all ADAPs. Negotiations continue with Bristol-Myers Squibb and Genentech and NASTAD urges these companies to quickly reach agreements with the ADAP Crisis Task Force.
NASTAD also applauds pharmaceutical companies for increasing access to their medications through Patient Assistance Programs for clients unable to obtain their medications through ADAP or other programs. Merck and Abbott, for example, are participating in a unique Patient Assistance Program administered through Welvista. This program will provide expedited access to medications for people on ADAP waiting lists without the burden of enrollment in multiple company programs. NASTAD encourages other manufacturers of HIV medications to quickly join this program to help ease the burden that people on ADAP waiting lists face in obtaining their medications.
Source: National Alliance of State & Territorial AIDS Directors press release
CA Controller Chiang Urges BMS to Cut Price of AIDS Drug Reyataz, says AHF
In Letter to Bristol-Myers Squibb CEO Andreotti, Chiang Asks Drug Giant to "Step Up and Join the Other Pharmaceutical Companies" in Reducing Drug Prices for California and its AIDS Drug Assistance Program (ADAP)
SACRAMENTO, Calif. (July 27, 2010) (BUSINESS WIRE) - Since its Approval in 2003, BMS Has Hiked Price of Reyataz 25% to $13K Per Patient Yearly; Meanwhile, Patient Enrollment in California's ADAP Has Grown 50% Since 2000 While Drug Spending Jumped 165% During the Same Period.
Today AIDS Healthcare Foundation (AHF) announced that California State Controller John Chiang has sent a letter to drug giant Bristol-Myers Squibb (BMS) urging the company to reduce the price of its key HIV/AIDS drug, Reyataz--one of the most expensive first-line AIDS treatments in the U.S.--for California and its AIDS Drug Assistance Program (ADAP). State ADAPs provide lifesaving HIV/AIDS medications to low-income patients.
Controller Chiang sent the letter after officials from AHF approached the California Public Employees' Retirement System (CalPERS) and California State Teachers' Retirement System (CalSTRS)--the two largest public pension funds and long-term owners of BMS stock--and testified at an investment committee meeting about the impact that the steep prices of certain HIV/AIDS drugs including BMS' Reyataz are having on many financially strapped state programs. Chiang sits as a member of both Boards. Both CalPERS and CalSTRS have also sent letters to BMS regarding the cost of Reyataz.
With state budgets stretched thin and increasing numbers of unemployed workers without health insurance, many states have been forced to cap enrollment in their AIDS Drug Assistance Programs. Currently, there are 2,158 individuals on waiting lists to receive lifesaving AIDS medications in twelve states.
In a letter to BMS' CEO Lamberto Andreotti dated July 9, 2010, Controller Chiang states:
"California's AIDS Drug Assistance Program (ADAP), like ADAPs across the nation, is in jeopardy as California's budget continues to suffer the ravages of the recent recession. As available state general fund dollars continue to shrink, demand on the program has grown faster than normal (another byproduct of the recession) and the cost of drugs has been increasing.
"This is an unsustainable situation. California has no interest in depriving people with HIV/AIDS of drugs that keep them alive, so the only available recourse is to rein in the growing drugs costs. On balance, it seems that all parties should do their part to ease the pain this recession has inflicted on ADAP."
In order to help alleviate the crisis, other major AIDS drug manufacturers have agreed to significant reductions in the pricing of their lifesaving AIDS medications to ADAPs, including Merck and Company, Johnson & Johnson's Tibotec Therapeutics, Gilead Sciences Inc., Viiv Healthcare and Abbott Labs. But not BMS. Meanwhile, twelve states have instituted waiting lists. And the number of people waiting to access medicines continues to balloon. In Florida, the waiting list is increasing at a rate of 250 to 300 people per month.
Adds Chiang: "Ultimately, modest changes from drug companies are all that is needed to help ensure ADAPs can continue to serve the people who need them. It is time for BMS to step up and join the other pharmaceutical companies that have found ways to reduce the cost of drugs to California and its ADAP program."
"AHF would like to thank Controller Chiang for expressing his concerns over the pricing of BMS' Reyataz and for urging the drug giant to do its part to ensure that patients in need of lifesaving AIDS medicines are being served," said Michael Weinstein, AIDS Healthcare Foundation President. "AHF believes there is simply no justification for BMS to price Reyataz $3,000 to $5,400 more than other first-line AIDS drugs. The price of this drug is putting an unbearable strain on taxpayer funded, cash strapped State AIDS Drug Assistance Programs in California and around the country, ultimately limiting access to lifesaving HIV/AIDS treatment to those most in need."
Background on the Pricing and Impact of BMS' Reyataz
Since it was first approved by the FDA in 2003, BMS has increased the price of Reyataz by over 25%. Today, the Average Wholesale Price (AWP) of Reyataz (atazanavir) stands at $13,046 per-year. AHF officials note Reyataz must be taken with at least two other HIV/AIDS drugs as part of an effective antiretroviral treatment regimen.
AHF has seen firsthand the impact of high priced AIDS drug like Reyataz. In California, for example, since 2000 the number of new ADAP clients has only increased by 50%, but AIDS drug spending has increased by 165%. The price of Reyataz and other drugs is a major contributing factor to this increase.
Across the country, states have been forced to make cuts to ADAP services and enrollment because of high cost AIDS drugs like Reyataz. States can no longer afford to provide treatment to many of their current ADAP clients, and as costs increase more people will be put at risk of losing access to services. Ultimately, this means that the more people who go on high-priced drugs like Reyataz, the fewer who can receive lifesaving services.
Source: AIDS Healthcare Foundation press release
Oil Spill Impacting HIV Services Along Gulf Coast
HealthHIV Survey Finds Over Half of People Living With HIV Report Impact; Half of HIV Service Providers Responding Need Help Planning for Displaced Clients
WASHINGTON, D.C. (July 19, 2010) - According to the HealthHIV Pulsepoints 2010: Gulf of Mexico Oil Spill survey, 54% of people living with HIV along the U.S. Gulf Coast responding to the survey report their family and friends are impacted by the oil spill. In addition, 49% of HIV service providers responding to the survey indicate they need assistance planning for clients displaced by the oil spill.
"Our work with HIV service organizations and community health centers along the Gulf Coast alerted us that the oil spill is impacting their communities, so we conducted a survey to better determine the situation," said HealthHIV Executive Director Brian Hujdich. "Many HIV service organizations report needing help developing plans for clients displaced due to the oil spill. These results raise concerns about the public health impact the disaster may have on HIV services, as populations migrate due to the economic and environmental impact from the oil spill."
The HealthHIV Pulsepoints 2010: Gulf of Mexico Oil Spill survey collected online survey responses - from both people living with HIV and HIV service providers -- between June 21-July 14, 2010 from 114 respondents in the Gulf Coast states of Alabama, Florida, Louisiana, Mississippi, and Texas. Survey results will help guide HealthHIV's prevention, care and support efforts throughout the affected region.
"While it is too early to measure the full impact of the spill on people living with HIV, this data captures initial reactions to the disaster," said HealthHIV Researcher Paul Angelone. "Phase II of the survey, this Fall, will allow us to focus in greater depth on the impact the oil spill is having on HIV care."
For a complete report on the HealthHIV Pulsepoints 2010: Gulf of Mexico Oil Spill survey, visit http://www.healthhiv.org.
Source: HealthHIV press release
Conflicting Views: New Campaign Asks Is Obama "Better on AIDS?"
The Afro-America | by Krishana Davis
June 17, 2010
[Photo: Michael Weinstein, president of the AIDS Healthcare Foundation, shows off the new ad campaign - "Who's Better on AIDS?" which shows a split face between Barack Obama, on the left, and former president George W. Bush, on the right. The ads will run in print and online versions of Politico, as well as 16 bus shelters around the White House. (AFROPhoto/Krishana Davis)]
President Obama's plan to improve health care treatment for those suffering from AIDS and HIV was criticized at a recent forum during a public service ad campaign -- "Who's Better on AIDS?" -- that was unveiled comparing the Obama approach to his predecessor, George W. Bush.
AIDS Healthcare Foundation President Michael Weinstein characterized the president's new National HIV/AIDS Strategy as a "laggard approach" during a press conference on July 13.
In a forum at National Press Club, the organization expressed disappointment in President Obama's plan. The foundation is the nation's largest non-governmental provider of HIV/AIDS medical care and its president criticized Obama, citing what he called the White House's failure to provide adequate funding to cover costs for current and future HIV/AIDS victims.
The Obama administration plans to allocate $25 million to the AIDS Drug Assistance Program, a joint federal and state program that pays for life-saving AIDS drugs for low-income Americans.
Michael Weinstein, president of the foundation, said that the Obama administration's plan to combat HIV/AIDS is not a strategy at all and does not account for new cases of HIV/AIDS.
"You cannot fight a war without resources, as we know with the trillions of dollars we spend fighting foreign wars," said Weinstein. "You can't say this is a new strategy if you do not intend to spend any money on it."
In a press release, the foundation claimed that Obama has failed to continue the Bush President's Emergency Plan for AIDS which has been left it under-funded.
The foundation said it supports the Access ADAP Act currently before Congress, which would allocate needed funds as part of the stimulus funding. To successfully meet the program's current needs, the expected number of new patients, and to make up for state budget cuts the foundation said it needs $126 million.
Brandon Macsata, CEO of the ADAP Advocacy Association, has lived with HIV for 10 years and says that a bigger federal role is crucial to battling the disease.
"Without the federal government stepping up to the plate, there is really no other option because the states are not in the financial position [to curb HIV/AIDS epidemic]," he said.
The Obama approach is not without supporters, however. Phill Wilson, president and CEO of the Black AIDS Institute, a national HIV/AIDS think tank, said the administration needs to buttress its policy with evidence of results. In a press release he said, "We salute President Obama for placing Black America front and center in his national HIV/AIDS strategy. AIDS in America today is a Black disease."
"The Obama administration needs specifically to report outcomes for Black people," Wilson said. "Only if prevention and treatment programs work for Black America will we win our national fight against AIDS. In difficult economic times, it is often necessary to make painful choices. As a country, though, we need to transition from AIDS 'spending' to AIDS 'investments.'"
House Subcommittee Proposes New Funds for Critical HIV/AIDS Programs
Human Rights Campaign | By Brian Moulton
July 16, 2010
Yesterday, the House Appropriations Subcommittee on Labor, Health and Human Services, and Education passed an appropriations measure for Fiscal Year 2011 that provides for important increases in a number of critical federal HIV/AIDS programs. While the current economic times make funding increases of any kind hard to come by, it is especially in such a fiscal crisis that programs like the AIDS Drug Assistance Program (ADAP) are most needed. Thankfully, the Subcommittee has recognized that need, including an $84 million increase for Ryan White care and treatment programs, with $50 million going to provide HIV medications to those most in need through ADAP. Unfortunately, with a record number of individuals on ADAP waiting lists, and more and more states moving to close their programs to additional recipients, the estimated need for FY11 is far greater - $370 million. Even with $25 million in newly-announced emergency dollars from the Department of Health and Human Services, and deeper drug discounts and donations from pharmaceutical companies, ADAP remains in crisis. We urge Congress to provide additional funds for this essential effort to keep people with HIV and AIDS in treatment. The Subcommittee also adopted a welcome $29 million increase for prevention efforts at the Centers for Disease Control and Prevention (CDC). Again, however, these funds are far short of what is needed to reduce the number of new infections every year. Earlier this week, President Obama announced his National HIV/AIDS Strategy and among its bold goals was a 25% reduction in new infections by 2015. As we noted in our statement in response to the release of the Strategy, its important purpose cannot be achieved without the commitment of resources. The increase in prevention dollars proposed by the Subcommittee is a good start, but it will take millions more to turn the tide against new infections. Congress must do more. In addition to these increases for treatment and prevention, the Subcommittee also included an additional $1 billion for research efforts at the National Institutes of Health. As the House moves forward in the appropriations process, we will continue to remind Members that, even in difficult economic times, we as nation cannot let down our guard in the fighting the epidemic or lessen our commitment to caring for those living with HIV and AIDS.
Obama's National AIDS Plan Is Short on Funding For Most Vulnerable
A Century Foundation | By Naomi Freundlich
July 15, 2010
This week the White House unveiled its new national plan to cut HIV infections and curb the AIDS epidemic. The plan, the first ever since AIDS emerged on the scene some 30 years ago, has the goal of "intensifying HIV prevention efforts in communities where HIV is most concentrated" specifically in the gay and African-American communities who are disproportionately affected by the disease. It also aims to increase access to treatment and mount "a more coordinated national response to the HIV epidemic."
Some specific goals from the National AIDS Plan include:
This plan, which took 15 months to draw up and included input from 14 community forums around the country, is a good start and helps put the fight against AIDS back on the national radar. Some 1.1 million Americans are currently infected with HIV and infection rates haven't budged since the mid-1990s. After hitting a peak of 130,000 new infections a year in the 1980s, the rate dropped to 49,000 a year in the early 1990s, according to the Centers for Disease Control. But in the past decade this number has increased and remains at 56,000 new infections each year. Meanwhile, in 1995, 44% of Americans indicated that HIV/AIDS was the most urgent health problem facing the country; in March 2009 that number had plummeted to only 6%.
The complacency about AIDS partly results from the advent of better drugs that keep patients healthy and alive longer. But it also stems from the marginalized nature of the groups that bear the greatest brunt of the epidemic: young gay men, African-Americans and intravenous drug users. The irony of Obama's plan though, is that although it purports to shift more of the $19 billion in domestic funding for HIV/AIDS to these populations, only 4% of this funding is currently spent on prevention and only $25 million is being funneled to states to help pay for their important AIDS Drug Assistance Programs (ADAPs).
These are state-administered programs that provide free HIV-related medications to the 183,000 individuals living with HIV and AIDS (and the tens of thousands more who in these tough economic times are projected to soon need these services). Those who qualify for ADAPs are lower-income people who are uninsured or have very little prescription drug coverage. It costs ADAPs over $1,100 for a year's worth of just the antiretroviral drugs used by one HIV-positive individual.
The $25 million the plan provides for these programs is just a drop in the bucket, says Brandon Macsata, CEO of the ADAP Advocacy Association, an organization that aims to increase treatment access for persons living with HIV/AIDS. The federal-state ADAPs are facing a $126 million shortfall for fiscal year 2010, just to keep pace with demand.
This shortfall is not unexpected. According to the National Alliance of State and Territorial AIDS Directors, "the federal share of the national ADAP budget has been declining from a high of 68 percent in 2000 to the current share of 49 percent. Over that same time, state revenues for ADAPs have increased to help meet program demands. However, the economic downturn is now forcing states to decrease or eliminate their state support of ADAP as well as other care and treatment programs. In FY2008, states contributed $329 million, or approximately 20 percent, of the overall ADAP budget. In FY2009, the state share fell to approximately 14 percent."
What that means is that now some 2,300 HIV-positive people have been placed on ADAP waiting lists. Macsata says he is hearing from many of them and they are "fearful and angry." And, he continues, the 2,300 "are just the tip of the iceberg. States are restricting eligibility and we may soon be looking at 10,000 HIV-positive people not receiving their medications."
In Ohio, for example, 1,000 of the 5,000 people receiving ADAP benefits are losing access to free AIDS medication, and hundreds more with AIDS are losing other benefits like dental care, other medications and emergency help with rent and utilities. The problem in that state (which is typical of others), according to a recent article in the Cleveland Plain Dealer is that "As people lost their jobs or found themselves down-sized, more and more turned to the program for help."
"On top of that, rising drug costs used up more of the program's money."
"We are in an unfortunate situation largely due to the economy," [Jay] Carey [management analyst for Ohio's Ryan White Program] said in a phone interview Friday. "There's not enough resources."
"Without the cutbacks, the program would have had a $16.4 million deficit at the end of this fiscal year, Carey says. With the cuts, the program should end up with a zero deficit, he says."
The long-term goal is that under Medicaid expansion starting in 2014, the majority of those currently receiving medications and services under ADAP will be covered under public insurance. Those uninsured people with incomes up to 400% of the Federal poverty level (about $43,000 for a single individual in 2010) will have access to Federal tax credits and can purchase private insurance coverage through the insurance exchanges. New consumer protections will prevent insurers from discriminating against subscribers based on health status and pre-existing conditions.
But right now, there is a clear crisis occurring with ADAPs and the shiny new National Plan does not address it. Besides the pain and suffering experienced by HIV-positive individuals who will have to forgo their life-saving antiretroviral drugs, under-funding ADAPs can have serious public health consequences. According to work done by Brian Williams, an epidemiologist at the South African Centre for Epidemiological Modelling and Analysis, when people take antiretroviral drugs the concentration of virus in their bodies drops by a factor of 10,000, thereby reducing their risk of passing on the infection by 25 times. In this case, effective treatment is also good prevention.
The solution to the ADAP problem is tricky. Democrats want to provide $126 million in emergency funding to states for the programs as part of their economic recovery plan that is stalled in Congress. Republicans - who also support ADAPs - want that money to come out of stimulus funding that is already appropriated. Meanwhile, the cutbacks continue and people suffer.
In the end, the release of the nation?s first AIDS strategy is promising. It refocuses efforts on prevention, redistributes funds to groups and regions that really need them, and will hopefully lead to a more effective and concerted effort to stem this terrible disease. But we must make sure that in the short-run we are not abandoning the very people we purport to help; the vulnerable groups who depend on ADAP for their medications.
Merck Joins with the Heinz Family Philanthropies, Welvista and Abbott to Announce Solution to Help Patients on State ADAP Waiting Lists for No-Cost HIV Medications
Merck has joined with the Heinz Family Philanthropies, Welvista and Abbott in a solution that begins to address the needs of patients waiting for access to HIV medications.
These patients are on waiting lists in 12 states for the AIDS Drug Assistance Program (ADAP), which provides help and no-cost medication for those patients who cannot afford their medication, but do not qualify for Medicaid assistance. Patients in another 12 states are enduring cost containment strategies for their ADAP medications that include formulary restrictions and tougher income qualification guidelines.
In collaboration with Heinz Family Philanthropies, Merck and Abbott will be providing Welvista? a nonprofit organization that fills prescriptions for patients who are uninsured and underinsured? with the HIV/AIDS medications that will help patients maintain their independence. They will also be providing a grant to Welvista for the operation of the overall effort. No single entity in the partnership will shoulder all of the costs.
Enrollment in the program is virtually automatic for anyone currently certified on an ADAP waiting list and the program will provide direct access to no-cost Abbott HIV medications through Welvista. Patients who are on ADAP waiting lists and need to access this solution to receive their Abbott medications can request that their state ADAP program contact Welvista on their behalf. If need exists after one year, the program may be extended.
The Heinz Family Philanthropies, Merck and Welvista created this solution together in response to a call for help from NASTAD (the National Alliance of State and Territorial AIDS Directors) to find ways to clear the waiting lists that are growing across the country and make enrollment simple for patients. The ADAP waiting lists have increased exponentially in some areas due to state budget crises and increases in unemployment.
This is a national initiative designed to help patients in any state that has an ADAP waiting list. Today, states with ADAP waiting lists include Florida, Georgia, Idaho, Iowa, Kentucky, Montana, North Carolina, South Carolina, South Dakota, Tennessee, Utah and Wyoming.
"This new program is an important advance in simplifying patient assistance and an extension of Merck's longstanding commitment to ensuring access to our HIV/AIDS medicines through our SUPPORT Program," said Patrick Davish, executive vice president, Merck Patient Assistance Program Foundation. "Now patients on ADAP waiting lists will have immediate access to their critical medications from several manufacturers through a single source and at no cost."
"Heinz and Welvista have been quietly creating Rx solutions around the United States. Helping those with HIV/AIDS who are in need of immediate medications is critically important to us. We are very proud that Merck has joined with us and Abbott to ensure that every eligible person suffering from HIV/AIDS can gain immediate access to free medications so they never fear they will prematurely enter a long term care facility because they could not get the medicines they need. This solution begins to address this problem and we invite other private sector partners to support this effort to broaden the reach to more patients, "said Jeffrey Lewis, President of the Heinz Family Philanthropies.
"AIDS Drug Assistance Programs across the nation are experiencing the worst funding shortfall in many years. Through these efforts, eligible clients currently on the waiting list for ADAPs will be able to obtain Merck and Abbott's medications through Welvista," said Ken Trogdon, Chief Executive Officer of Welvista. "Welvista will be working with states across the nation to become their pharmacy connection in providing these patients with the HIV medications from these two pharmaceutical companies. It is our hope that other private sector partners will join us to further expand the medication reach to even more patients."
NPR's Talk of the Nation: In State Budget Cuts, Few Jobs Are Safe
National Public Radio's "Talk of the Nation" focused on the crisis facing the AIDS Drug Assistance Programs (ADAPs) nationwide, especially in South Carolina. Program guests included: Rep. Joe Neal (D-SC), proposed budget amendment to restore funds to the South Carolina AIDS Drug Assistance Program, Nicholas Johnson, director of the State Fiscal Project at the Center on Budget and Policy Priorities, John Myers, statehouse bureau chief, KQED, and Bill Cohen, statehouse reporter, Ohio Public Radio.
CLICK HERE TO LISTEN TO NPR AUDIO CLIP
ACROSS THE NATION...
Ohio: More HIV Patients Lose State Support
July 27, 2010
COLUMBUS, OH - The Ohio Department of Health is finalizing details of a plan that will tie eligibility for the state AIDS Drug Assistance Plan to a patient's CD4 cell count. The DOH plan is a response to a projected ADAP deficit stemming largely from increased demand for help, state officials said.
The plan would limit ADAP enrollment either to patients with CD4 counts of 500 cells/mm3 and below, or to those whose counts have dropped below 200 cells/mm3 at any point, said Jay Carey, a management analyst for the Ryan White program, which is administered by the Ohio Department of Health (DOH). Carey expects the change will occur next month, after which an additional 500 clients would be cut from ADAP.
Earlier this month, 250 clients were dropped from ADAP after the state restricted eligibility to those earning 300 percent of the federal poverty level or less - about $32,000 for a single person. Previously, the bar had been at 500 percent. DOH also implemented a waiting list and stopped paying for non-emergency dental care and prescriptions not directly related to HIV/AIDS.
In addition, the state will place spending caps in its next contract with CVS, the drug store chain that provides the ADAP drugs, said Jen House, a DOH spokesperson.
ADAP was anticipating a deficit of $3.9 million three months into the fiscal year and $16.4 million by next spring. Ohio now has 19 patients on the ADAP waiting list, and 30 more have applied.
"I'm not going to sit here and tell you that more cuts down the road are not a possibility," Carey said. That may depend in part on any federal assistance to Ohio's ADAP in the next month, he added. Case workers have been scrambling to provide alternative sources of assistance.
Nationally, 2,158 people with HIV/AIDS were on state ADAP waiting lists as of July 22, according to the National Alliance of State and Territorial AIDS Directors. The average cost of HIV drugs per ADAP client is about $12,000, and it is much higher for those outside of ADAP, said Ann Lefert, NASTAD's associate director of government relations..
More get AIDS drugs but funding crunch remains in Western North Carolina
Source: Ashville Citizens Times | by Nancy Bompey
July 27, 2010
ASHVILLE, NC - Funding in this year's state budget will help more people pay for their AIDS medications, but it's still not enough to keep up with increasing demand.
An additional $14 million added to the AIDS Drug Assistance Program this fiscal year enabled the state to enroll 627 people who were on a waiting list, which had 808 people and was the longest in the country before funding was added to the program earlier this month.
The program provides financial assistance to low-income residents for purchasing HIV and AIDS drugs.
"With good medical therapy, people who are HIV positive or have AIDS can live relatively productive lives," said Ron Curran, executive director of the Western North Carolina AIDS Project. "Without it, it's a very serious situation."
The increase in funding means some low-income people in Western North Carolina won't have to rely on getting their medications through pharmaceutical assistance programs offered by drug companies, which many were using while they were on the wait list.
Meron Abebe, a patient assistance supervisor at Western North Carolina Community Health Services, has enrolled six people in the ADAP program since it reopened earlier this month.
"It (ADAP) is more reliable," she said. "Private drug discount manufacturers can discontinue their programs any time they want and people would be left hanging."
But the funding provides only a temporary solution. The increased funding allows the state to open the program up to people who are at or below 125 percent of the federal poverty level. But it still isn't enough to enroll people up to 300 percent of the federal poverty level who are ADAP eligible, leaving 182 people on the waiting list.
The state also estimates that it will run out of money for enrolling new people in the program by February or March.
"Although we don't have sufficient funding to open totally or remain open, it was a tremendous coup for our program to be basically doubled with state appropriations," said John Peebles, communicable disease operations manager at the N.C. Division of Public Health. "State appropriations are virtually unheard of nationwide."
The program, which is funded by state and federal funds, has seen a 29 percent increase over the past two years. The increase is due in part to the economy and an increase in testing in North Carolina, according to the state.
WNCAP has seen the number of clients it serves increase to 388 people from 250 people over the past three years, which Curran attributes to people engaging in more risky behavior. Close to 300 of its clients are enrolled in the ADAP program.
"People are not leaving the program. They are living longer with HIV or AIDS, and new folks, unfortunately, are coming on every month," Peebles said. "The need is going to continue to grow."
Small savings for state, big cost to AIDS patients
Source: New Jersey Star Ledger | Guest Column by R. William Potter
July 20, 2010
TRENTON, NJ - More than 900 New Jerseyans received a bipartisan death sentence at the end of June.
That's when Democrats and Republicans, voting together to balance the budget without a tax increase, tightened eligibility for persons with AIDS who can't afford costly antiretroviral drugs that can stave off the ravages of a disease that has taken 35,000 New Jersey lives since data were first collected.
How did this happen? The budget law cut eligibility for the successful AIDS Drug Assistance Program (ADAP) from 500% of the federal poverty level ($10,000) to 350%. In other words, someone with AIDS who earned up to $50,000 a year was eligible for ADAP, but now the cutoff is reduced to $35,000.
To some, that may sound generous. After all, earning $35,000 seems almost middleclass these days, not an amount typically associated with recipients of public charity, especially in tough economic times.
But consider: The costs of these AIDS drugs -- like those keeping basketball legend and millionaire Magic Johnson healthy, not wasting away in the corridor of a public hospital -- can exceed $25,000 a year. The result is that an estimated 957 registered ADAP recipients are too wealthy for ADAP, but too poor to obtain access to these life-saving meds.
Thus while it might seem mean-spirited to call this budget-cutting measure a death sentence in slow motion, it's no exaggeration. And as their illness grows worse, sufferers' incomes fall or they become jobless, qualifying them for the full array of welfare and Medicaid treatment. Now you're talking real money, as the costs of drugs for just one AIDS patient exceeds an average of $600,000 lifetime, assuming (optimistically) the victim survives for 24 years.
But what about those state budget savings, which legislators worked so hard to find? They amount to a whopping $7 million. While even $1 million is no one's idea of chump change, $7 million -- compared to overall state funding of $29.5 billion -- is a rounding error of two-hundredths of 1% of state spending for the year. Broken down further, that's a cool two hours of state spending. Not much money saved, and it comes at the cost of lives shattered or lost, along with far greater taxpayer expense in the longer term.
So what is the state doing to prevent more AIDS infections, the ultimate budget-balancing and life-saving initiative? Precious little. Only three years ago, New Jersey ended its mindless holdout as the only state preventing clean needle exchange programs (NEPs) that contain HIV caused by intravenous drug users who share needles contaminated with the virus. Every study of NEP in other states has concluded that allowing addicts to exchange dirty needles for clean ones saves lives, prevents HIV in sexual partners and their children, and induces IV drug users to seek treatment for their addiction. And at 10 cents per clean needle or syringe, the benefit-to-cost ratio is staggering.
But cash-strapped New Jersey is not allowing any expansion of its NEP, which remains the most restrictive in the nation. The state limits the NEP to just six cities in a "pilot program" that has had to limp along on private donations. State law prohibits any public funds for needle exchange, despite an estimated 8,000 active IV drug users who need help most and can't get it.
What all this adds up to is an inexplicable lack of common sense -- never mind compassion -- among Democrats and Republicans in the Statehouse. Why vote to "save" $7 million by tightening the ADAP eligibility, when doing so could hasten the deaths of more than 900 residents or drive them into poverty where taxpayers will bear the full costs of their healthcare at an estimated $600,000 per AIDS patient? Why not invest in NEPs to prevent more HIV infections that can lead to full-blown AIDS and costly public dependence?
And what of the people who face these life-or-death decisions even as I write this? What of their orphaned children who may become wards of the state?
We all want to see more bipartisanship in Trenton. But not when it comes at such a high price -- for all New Jerseyans.
Advocates bring fight for HIV/AIDS drug assistance to Iowa Capitol
Source: Iowa Independent | By Lynda Washington
July 23, 2010
DES MOINES, IA - Each person who stood in front of the Iowa Capitol this week demanding that the federal government provide adequate funding for the AIDS Drug Assistance Program represented more than 150 people across the nation unable to access life-saving medications.
[Photo: Tasmania Clayburn, minority HIV program specialist with the AIDS Project of Central Iowa, participated in an awareness rally at the Iowa Capitol this week (Photo: AIDS Healthcare Foundation)].
"It seems odd that we've spent so much time fighting for these medicines, and that there is a way for people to live now, and yet we simply cannot get [people] the medicines that they need," said John Chamberlain, a member of Positive Iowans Taking Charge who is one of at least 100 Iowans currently on this state's waiting list.
The AIDS Drug Assistance Program (ADAP) is a specific funding stream within Ryan White Part B that provides medications to uninsured, under-insured and low-income Americans infected with HIV or who have AIDS. For such individuals the program is the pharmaceutical provider of last resort, meaning that all other resources, including Medicaid, must be exhausted before individuals are eligible.
Because the federal government's appropriations for the program have not kept pace with current patients' life spans and steady disease diagnosis, and because the economy has forced many off of employer insurance plans that previously paid for necessary medications, the program is experiencing a "storm of need." The Iowa Independent first reported on the state's waiting list crisis in September 2009, and the situation has worsened since that time. In fact, the Iowa waiting list impacted 77 individuals in May, while now there are at least 100 who are waiting.
Chamberlain, in addition to speaking at the rally, presented a letter to U.S. Sen. Tom Harkin, a Democrat who leads the influential Senate Health, Education, Labor and Pensions Committee. The letter reflects waiting list number from July 9, prior to action by the North Carolina Legislature to increase funding for their state's programs by $14 million. The end result is that waiting lists in North Carolina shrank from 811 to 179.
"Given the amount of funding [North Carolina] put back toward their state's ADAP, it shows up the poor response from the White House especially for a "National HIV Strategy" at $25 million," said Joey Terrill of AIDS Healthcare Foundation. "We want Senator Harkin's office to assist in coming up with a solution to the ADAP wait lists as they are expected to continue to grow as more people become eligible due to lay-offs and losing their insurance coverage while, at the same time, budget deficits are driving legislatures to make cuts to their state ADAP funding."
According to Rhea Van Brocklin, program/community relations director for the AIDS Project of Central Iowa, the state ADAP program saw a 153 percent increase in new clients during the first three months of 2009. Funding for the program, however, has remained flat since 2005. Since July 14 the ADAP in Iowa has been closed to new enrollees.
"The AIDS Project of Central Iowa's case management services attempts to help clients not on ADAP by finding alternative ways to fund their medication, such as Patient Assistance Programs and pharmaceutical rebates," she said. "However, these programs do not offer the stability of ADAP. And for clients on HIV medications, where missing one day of meds could lead to drug resistance, stability and adherence are everything."
Keeping those diagnosed with HIV on their medications also makes sense from a public policy standpoint, she said.
"The number of hospital visits is reduced, the onset of disabilities is delayed, and the burden on the Medicaid program is decreased," she said. "People living with HIV are living longer, healthier lives, and are remaining contributing members of their communities."
Chamberlain, in his letter to Harkin, noted that "through ADAP, people receiving treatment for HIV achieve undetectable levels of the virus in their blood making it less likely for transmission to occur." Without addition funding for the assistance program, Chamberlain fears that ?we will only further perpetuate the spread of the virus? and further strain state health care systems and budgets.
There are currently 441 Iowans enrolled in ADAP, who represent roughly 27 percent of people living with HIV in the state.
AHF Takes To The Streets For ADAP Funds
Source: South Florida Gay News | by Richard Gary
July 20, 2010
FORT LAUDERDALE, FL - Michael Weinstein, President of AIDS Healthcare Foundation led a protest in front of the Federal Building in Fort Lauderdale on Friday June 16, 2010 to protest the lack of federal funding for ADAP - the AIDS Drug Assistance Program.
Approximately 40 staffers and supporters gathered in the afternoon sun to demonstrate against the budget cuts. More than 600 people are on Florida's waiting list to receive lifesaving AIDS drugs. It is estimated that the list will grow by as much as 250-300 people per month. Florida is already ranked 3rd in the nation for the most new cases of HIV.
"On behalf of HIV/AIDS health care providers, advocates and patients living in Florida, we call on the federal government and the Florida delegation to intervene immediately to save the state's AIDS Drug Assistance Program," declared Weinstein, speaking with a bullhorn at the intersection of East Broward Boulevard and Northeast 3 Avenue.
Noting that persons in other states who are on ADAP waiting lists have died hoping for treatment, Weinstein declared that "As more and more people are added to Florida's waiting list, the likelihood of such an occurrence here increases, a situation that must - and can - be avoided with the necessary resources."
To address the crisis at the federal level, Senators Burr, Coburn and Enzi recently introduced S. 3401, the ACCESS ADAP Act, a bill which provides $126 million in unobligated stimulus funds to eliminate waiting lists through Fiscal Year 2010. Weinstein criticized the fact that the bill has failed to gain the full support of the Obama administration or Congress.
Many Florida officials who are currently facing elections have yet to address the crisis, including Democratic gubernatorial candidate Alex Sink, and the current Governor, Charlie Crist, now running as an Independent for a U.S. Senate seat. Protestors at Friday's rally were not so silent.
"Tell your elected officials - you bailed out the banks, you bailed out Wall Street, now bail us out!" said one activist to much applause from the other participants.
Weinstein, meanwhile did praise both Florida Senator George LeMieux and Congresswoman Debbie Wasserman Schultz for becoming co-sponsors of the ACCESS ADAP Act, which would provide an immediate increase in funding to save the AIDS Drug Assistance Program.
The Department of Health and Human Services (HHS) recently announced that $25 million would be re-allocated to state ADAPs for Fiscal Year 2010. But Michael Kahane, the Southern Bureau Chief for AHF told the crowd this would just not be enough. "This amount is simply insufficient to cover the need and neglects to take into account future uncertainty regarding budget cuts and the rate at which waiting lists are growing."
The cost to provide AIDS medications is roughly $10,000 per patient, per year, and the $25 million in additional funding proposed by the HHS would barely be enough to cover the more than 2,200 people who are currently on waiting lists - without taking into account new patients enrolling and further state budget cuts. The speakers at the rally argued that the situation is worsening and if action is not taken now, it will become a public health disaster for the state.
Congresswoman Debbie Wasserman Schultz has said both federal and state governments have fallen down on the job when it comes to ADAP funding. "Federal funding has not kept up with growing demand, and state budget cuts have resulted in funding reductions," she told SFGN last week. "Some states," she complained, "are even removing current beneficiaries from their program."
Ambitious goals of Obama?s HIV plan raise budget concerns; Unfunded mandate only increases state budget stresses
The Michigan Messenger | By Todd A. Heywood
July 23, 2010
LANSING, MI - While an ambitious national plan to reduce new HIV infections by 25 percent by 2015 has generally garnered praise, advocates and lawmakers say the increased testing and access to anti-retroviral medications come at a high price tag at a time when states can least afford it.
That is a problem for Michigan, which faces over $1 billion in deficits for the second year in a row and a legislature that (so far) refuses to raise any new revenues. That reality, advocates say, underscores the need for more federal funding.
"A prevention strategy based on test and treat with no additional funding support for testing or treatment isn't a national strategy," says Mark Peterson of the Michigan Positive Action Coalition. "It is a cruel statement to make in the face of growing numbers of cases and growing ADAP waiting lists."
ADAP is an acronym for the AIDS Drug Assistance Program. That program is funded with federal money out of the Ryan White Fund, and provides subsidies and the purchase of the anti-retroviral medications needed to battle HIV infection. The program in Michigan costs just under $26 million, funding medications for nearly 3,000 people with an average annual cost of $11,000 a year per patient.
The medications are a key weapon in the fight against HIV, according to the report from the Office of National AIDS Policy. Recent studies have found that reduction in viral load - the measure of virus in the blood - results in a corresponding reduction in the infectiousness of those living with HIV. Studies have also found that the sooner a person infected with the virus starts treatment, the better their long term outcome is.
As a result, in December the Centers for Disease Control and Prevention announced a change in guidelines for when Americans should start medications. The government now says people infected with HIV should start medications before their CD4 count - the blood cell the virus hijacks in order to replicate itself and key component of the immune system - drops below 500. The average CD4 count for a healthy person is between 800 and 1200.
That information, combined with the viral load studies, have resulted in the development of a controversial new HIV fighting strategy called test and treat. The program is being piloted in Washington DC and Brooklyn, NY. Under this strategy, which is supported in the National HIV/AIDS Strategy, those who test positive for the virus are encouraged to enter into viral treatment as soon as possible.
The plan is considered controversial because the medications have serious side effects, with many activists calling it chemotherapy. Many people with HIV do not have the requisite medical literacy to make an informed decision about taking the medications, activists like Sean Strub, who is founding publisher of POZ magazine, have said.
But Debra Szwedja, acting director of the MDCH's Division of Health, Wellness and Disease Control, says increased access to medications is about improving the quality and quantity of life for those infected with HIV.
She called the reduced viral load, and the subsequent decrease in infectiousness "a welcome side effect."
Studies have shown that those who know their HIV status are less likely to spread the infection, according to the plan. That means those who do not know their status but are infected are more likely to be infecting others.
In Michigan, health officials say the state conducts between 70,000 and 80,000 HIV tests are year - less than one percent of the state's population. Officials say that another three or four percent of the state is tested through private medical facilities, such as doctor's offices, hospitals and clinics. In response to a Freedom of Information Act request earlier this year, however, the state could not verify those numbers.
Michigan Department of Community Health records show there are about 14,000 Michigan residents who know they are infected with HIV, and the state adds an additional 25 percent to this number to estimate there are 18,000 cases of the virus in Michigan. This additional cases are an estimate based on a complicated formula developed by the CDC.
But the increase in testing and putting people on medications may be an academic controversy given Michigan's difficult budget crisis.
"Certainly additional resources would help us achieve those goals," says Szwedja.
Lawmakers, however, aren't sure where that money will come from. The state is already facing a massive budget deficit and haggling over Medicaid extensions in Washington could result in the state losing an additional $500 million.
Rep. Mark Meadows (D-East Lansing), chair of the House Judiciary, says increasing funding is essential to fighting HIV.
"We need to put our resources in public health," he said. He took the Bush administration to task for spending billions on the African AIDS crisis, while ignoring the problem at home. As a result, Meadows said, HIV "fell off the radar" in the U.S.
"An unchecked crisis in HIV will result in more money being forward for care, such as end of life care, which is much more expensive," said Meadows. "When you put money into prevention, it pays off. You spend less money in the long run."
But House Speaker Andy Dillon (D-Redford Township) says he is uncertain where that funding will come from. He said the House is constantly looking at priorities and how to fund them with dwindling state resources.
"It's our life with the budget," says Dillon, who is a Democratic candidate for Governor.
Other House Democrats echoed Dillon and Meadows in their concerns about the financial impact of pursing the goals laid out by Obama's HIV plan, while facing a state budget crunch, again.
And State Sen. Tom George (R-Texas Township) shares those budget concerns.
"This is a big question with the other health insurance reform measures - who's going to pay and can the state's afford it?" says George, who is a Republican candidate for governor.
He says there are benefits to increased testing and access to medications, and says an argument might be made that it makes economic sense to put the money out front now for medications and increased testing rather than wait for more people to become infected with the virus.
However, George says, "The state's broke. Do I favor more funding? Yeah. I also favor winning the lottery, but it ain't going to happen."
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