ADAP Pill Box: All Things ADAP
The ADAP Advocacy Association (aaa+) is pleased to share its March 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 aaa+ 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.
On March 24th, aaa+ hosted its wine tasting benefit to raise awareness about ADAPs. By all accounts the event - which also served as our 1st quarterly meeting - was a huge success; a special 'thank you' to Tibotec Therapeutics, Bender Consulting, DC's Most Fabulous Magazine, Peacock Cafe, The Macsata-Korngay Group and the DC Metro Business Leadership Network for helping to make the event a success! Rep. Joseph Cao (R-LA) attended as our special guest. Cao was the highest scoring House Republican on our Congressional Scorecard, which was released earlier this year.[Photo: William Arnold (left), President of the Community Access National Network, Rep. Joseph Cao (center) and Brandon Macsata (right), CEO of the ADAP Advocacy Association]
The developing news across the country continues to paint a bleak picture with respect to the growing ADAP crisis. Over the last month, ADAP waiting lists increased to 751 people in ten states - up from 662 people in February and 540 people in January. In addition, several states - such as Louisiana and South Carolina - are on the verge of complete breakdown under the extreme systemic pressures and state budget cuts.
In response to this growing crisis, ADAP Stakeholders are invited to participate in an ADAP VIRTUAL TRAINING APPLICATION: Linking AIDS Drug Assistance Programs to Pharmaceutical Prescription & Co-Payment Assistance Programs. The aaa+, in coordination with the Community Access National Network (CANN), Flowers Heritage Foundation (FHF), National Association of State & Territorial AIDS Directors (NASTAD) and National Network of ADA Centers (DBTACs) - which all work to ensure access to care and treatment for every person with HIV in need - is extending this invitation to all ADAP Stakeholders in Arkansas, Idaho, Iowa, Kentucky, Montana, Nebraska, North Carolina, South Dakota, Tennessee, Utah, and Wyoming to gain a fuller perspective from the pharmaceutical companies about how their prescription assistance and co-payment assistance programs can address the many issues confronting people living with HIV disease on wait lists.
Registration is FREE, but you must RESIDE OR WORK IN one of the states with an ADAP waiting list to register. A virtual conference platform provides the most accessible conferencing and collaboration experience available, anywhere in the country. No new hardware is needed. All you need is a PC with a soundcard, headset, and a high-speed connection to the Internet; and you can hold fully accessible, 508 compliant online conferences from your desktop.
The project timeline for the ADAP VIRTUAL TRAINING APPLICATION will begin on April 14th and continue weekly thereafter until all the states with ADAP waiting lists have been offered the training. Each session will occur from 1:00 pm to 2:30 pm EST. The current timeline is as follows (subject to change):
aaa+, recognizes that the ADAP waiting list crisis in ever-changing, so the schedule for the ADAP VIRTUAL TRAINING APPLICATION is subject to change. In the meantime, aaa+, invites you to learn more and register online today at http://www.adapadvocacyassociation.org/events.html.
For more information about the ADAP VIRTUAL TRAINING APPLICATION, please contact Brandon Macsata at info@adapadvocacyassociation.org. Thank you.
Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)
P.S.
In honor of National Women and Girls HIV/AIDS Awareness Day, the U.S. Positive Women's Network (PWN), a national membership body of women living with HIV, has launched a survey to track the extent to which HIV-positive women's human rights are being realized in the United States. This survey is the first in a series, and focuses on testing and disclosure, reproductive justice for women with HIV, and the criminalization of HIV. Please take the survey!
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 March 2010 ADAP Watch
March 19, 2010
The National Association of State & Territorial AIDS Directors (NASTAD) released its March 2010 edition of ADAP Watch. As of March 19th, there were 751 individuals on ADAP waiting lists in ten states - including 21 individuals in Idaho, 55 individuals in Iowa, 182 individuals in Kentucky, 15 individuals in Montana, 232 individuals in North Carolina, 5 individuals in South Carolina, 26 individuals in South Dakota, 131 individuals in Tennessee, 71 individuals in Utah and 13 individuals in Wyoming. ADAP Stakeholders are concerned that the situation on the ground in Arkansas, Louisiana and Nebraska are extremely bad despite not having waiting lists!
Read ADAP Watch - March 2010
The State of the Crisis: ADAP Advocacy Across the Country
Source: Merrell's blog
March 25, 2010
In this post we share some strategies and resources advocates around the country are using to respond to the widespread AIDS Drug Assistance Program (ADAP) funding crisis. Tell us what's going on in your neck of the woods!
First, some brief background:
States across the country find themselves in the midst of an ADAP funding crisis as the economic downturn is devastating their ability to raise sufficient revenue. Flat funding by the federal government and escalating drug costs are compounding the fiscal problems.
Demand is spiking as more people turn to safety net programs like ADAP as a result of becoming unemployed and losing health coverage. Increased efforts to identify HIV positive individuals through testing are likewise adding pressure as people become aware of their status and are linked to care.
What strategies and tools are advocates using to respond to this crisis?
Dose of Change offers up these examples of advocacy in action as groups across the country respond to the crisis. These are just a few of the endeavors we've identified so we are asking you to send us more examples of ADAP advocacy tools in your community. Let's all learn from each other and stop more cuts before they happen.
Read More...
Lessons Learned from SXSW 2010
Source: Blog by Jeremy Vanderlan, AIDS.gov Web Developer, and Cathy Thomas, AIDS.gov Technical Director
March 23, 2010
Austin is a town with a distinct vibe. Where cowboy boots would be expected, nose rings are present instead. We saw more mohawks than crew cuts, more ironic t-shirts then suit coat jackets. It's a town that thrives on individuality, and in this setting, the interactive community convenes for their flagship gathering, the South by Southwest (SXSW) Interactive festival.
Last year, we heard from our Federal colleague Andrew Wilson that leaders in the field are using new media to connect, collaborate, and engage in creative ways. Extracting a theme from this year's conference isn't easy for us. The web is continuing to expand exponentially. There are apps for phones, book publishers pushing content to Kindle, enhanced interactivity with HTML5 and CSS3, more browsers, thousands of social networking communities, and hundreds of ways to actually deliver content to a targeted audience.
With that in mind, we believe there are three pervasive trends: iterative process, soft launch, and location. We will go into more detail on what each of these means, but above all, we want to talk about how they relate back to the HIV/AIDS community.
Iterative process: The acceleration of real-time data and information means that content and web applications can grow old quickly. Early feedback and response is critical - there must be an open dialogue between users in the community and the content creators. We are no longer the sole distributors of information, and we must take into account what is being said and what needs are not met.
Soft launch: More products are being released each day, and not all of them are perfect. The truth is that you don't really know what you have created until real people begin to interact with your content or web application. At SXSW we heard that it can be valuable to release something online that is not yet perfect in the eyes of its creators, but is valuable enough to allow the public to interact with it and provide feedback.
Location: We want information that is relevant to us where we are now. The combination of mobile applications and publicly available data sets allow us to find relevant information about our surroundings in real-time. We can now easily search for what we want based on our location, and find it.In looking at these three elements, we at AIDS.gov have released a soft launch of the AIDS.gov locator service, a feature that allows users to find HIV/AIDS services for Testing, Housing Assistance, Treatment, and Mental Health related to HIV/AIDS.
We have already received feedback from some of the service stakeholders and there are features we plan to add and enhance, including a mobile interface, texting capability, more HIV/AIDS services provided by the Federal Government and printable directions. But by doing a soft launch, and through an iterative process, we have the opportunity to engage the HIV/AIDS community to find out what else we can be doing to improve these services.
For us at AIDS.gov, SXSW 2010, with all of the cool advancing technology, was about something more basic: the opportunity to provide a service to the community and find out what we can do to make it better. Call it customer/citizen service in the context of 2010.
New Online Application for Medicare
Source: Social Security Online
March 26, 2010
Americans who want to apply for Medicare now can do so online at http://www.socialsecurity.gov. Simply select the "Retirement/Medicare" link in the middle of the page. The whole process can take less than 10 minutes.
To help promote this new online application, Social Security has reunited the cast of The Patty Duke Show for a series of public service announcements. Watch these entertaining and informative spots at www.socialsecurity.gov/medicareonly.
Sign-On and Forward "An Open Letter to Pharmaceutical Companies on the ADAP Crisis"
Source: Fair Pricing Coalition press release
March 23, 2010
Washington, DC (March 23, 2010) - The Fair Pricing Coalition (FPC) is seeking organizational and individual endorsements of the "Open Letter to Pharmaceutical Companies on the ADAP Crisis," in anticipation of upcoming negotiations with ADAPs in May. The full text of the letter may be read at the end of this message or by clicking here. You may share this letter by forwarding this message, as well as sign on here.
AIDS Drug Assistance Programs (ADAPs) across the country are struggling to keep their doors open. Over 750 people in ten states are currently on ADAP waiting lists to access HIV/AIDS drugs, and more states are joining the ranks. This situation will not improve anytime soon -- certainly not till the new Healthcare Reform Legislation is fully implemented -- unless we act now!
ADAPs are at the center of a perfect storm, brought on by the economic meltdown, federal and state budget shortfalls, and continuing escalation of drug prices. The number of people who rely on ADAPs for their medications grew an unprecedented 80% each month in FY2009.
Join the Fair Pricing Coalition in calling on all HIV drug companies to do their part to help solve this crisis by:
1. Implementing a multi-year cost protection and rebate enhancement program for ADAPs to reduce their drug costs and allow them to reopen enrollments.
2. Offering streamlined Patient Assistance Program (PAP) eligibility for individuals on any state's ADAP waiting list.
Click here to read the full text of the letter.
Specialty Drugs, Medicare D & Catastrophic Coverage
By Ed Silverman | Pharmalot
March 2, 2010
A report from the General Accountability Office found that among all Medicare Part D beneficiaries who used at least one specialty tier-eligible drug in 2007, 55 percent reached the catastrophic coverage threshold, after which Medicare pays at least 80 percent of all drug costs. In contrast, only 8 percent of all Medicare Part D beneficiaries who did not use a specialty tier-eligible drug reached this threshold in 2007.
Specialty tier-eligible drugs accounted for 10 percent, or $5.6 billion, of the $54.4 billion in total prescription drug spending under Medicare Part D plans in 2007. And Medicare beneficiaries who received a low-income subsidy accounted for most of the spending on specialty tier-eligible drugs - $4.0 billion, or 70 percent of the total, according to the GAO. High-cost drugs eligible for a specialty tier commonly include immunosuppressant drugs, those used to treat cancer, and antiviral drugs.
For those unfamiliar, the Centers for Medicare & Medicaid Services allows Part D plans to use different tiers with different levels of cost sharing to manage drug use and spending. The specialty tier is designed for high-cost drugs with prices that exceed a certain CMS threshold and beneficiaries who use these drugs - such as biologics - typically face higher out-of-pocket costs than beneficiaries who use only lower-cost drugs (here is the report).
"The report documents that competition is needed so that health insurers can negotiate for lower-cost alternatives to high-priced specialty-tiered brand drugs," Kathleen Jaeger of the Generic Pharmaceutical Association, which has been agitating for Congress to allow the FDA to create a so-called pathway for approving biogenerics, says in a statement. "The GAO findings also underscore the fact that the current system leaves older Americans particularly exposed to the high cost of brand specialty-tiered medicines."
ACROSS THE NATION...
South Carolina Activists Fight for AIDS Funding
Source: By Jerrita Patterson | MidlandsConnect.com
March 17, 2010
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COLUMBIA, SC - The number of people in this state living with HIV and AIDS is on the rise. According to the South Carolina HIV and AIDS crisis task force, more than 14,000 people have the disease. Nearly 25 percent of them rely on government money for medication.Earlier this week, House lawmakers asked the feds for more than $170 million to fund services for prescription drug programs and the department of disabilities and special needs. However HIV/AIDS was left out of that mix.
"AIDS is not in recession and the funds to fight AIDS should not be in recession either," said Columbia Pastor Andy Sidden.
Hundreds gathered at the State House Wednesday to protest recent cuts to state funded HIV and AIDS services. Earlier this month, South Carolina budget writers slashed the "AIDS Drug Assistance Program's" entire $5.9 million budget.
"Cutting funding for ADAP is like a death sentence for the people who do not have health insurance or can't afford all of their medicines out of pocket," said AIDS activist Jean-Elizabeth Smith.
"This is $6 billion in this state alone that we're talking about the cost of treating this is 5% of that," said Dr. Helmut Albrecht.
Dr. Albrecht, of the USC School of Medicine, says without programs like ADAP not only will those with the disease face consequences but others may also be at risk.
"We cannot cure this but we can treat this," said Dr. Albrecht. "We can prevent this, but the alternative is to let this spread and this will spread."
"This disease is a very real disease and without medication, each one of us would not be here today," said AIDS activist Pamela Sykes.
Sykes is one of thousands in South Carolina living with the disease. She was infected by her husband in 1992 and says she's been on a mission to put a face on the epidemic ever since.
"We need to understand that HIV or AIDS can attach itself to anyone," said Sykes.
A budget amendment has been submitted to restore nearly $2.2 million to the program. But until the money is back in the budget, the AIDS activists say they won't be silenced.
North Carolina HIV/AIDS patients struggle to afford medications without state program
By Erin Hartness, NC WRAL
March 16, 2010
RALEIGH, NC - Since a state-run program closed to new applicants earlier this year, patients living with HIV/AIDS in North Carolina are struggling to get needed medications.
The AIDS Drug Assistance Program (ADAP), which receives state and federal funds, provides financial assistance to low-income HIV/AIDS patients so they can purchase medications to combat their diseases.
ADAP closed to new applicants on Jan. 22 after losing more than $7 million in state funding.
"The ADAP program is life or death," said John Paul Womble, interim executive director of Alliance of AIDS Services.
State AIDS and STD Director Jacquelyn Clymore said the program's increased enrollment played a part in the decision to close the program to new applicants. The program saw a more than 29 percent increase in enrollment in past two years and a significant boom in last six months of 2009.
Clymore said the decision was made because the program wanted to be able to continue serving the more than 6,000 patients currently enrolled.
"These were gut-wrenching decisions," Clymore said. "These are people we know."
New applicants have been placed on a more than 200-person waiting list to meet with case workers who are helping them apply to medication assistance programs. The process can be difficult because patients must apply to each drug company separately and all companies have different processes and applications, Clymore said.
Medications to treat HIV and AIDS can cost thousands of dollars a month, Clymore said. Patients take between three and five HIV medications in combination.
Among the medications needed are antiretrovirals, which most patients need to help them fight HIV infection.
"If you are on antiretroviral medications, you don't want to stop them, certainly not unless a doctor tells you to, because your body can build up resistance and your HIV gets stronger," Clymore said.
In addition to closing the program to new applicants, ADAP has also cut out assistance programs for medications for side effects of HIV and AIDS. The only drug programs available through ADAP are for life-saving drugs. Medicines that treat side effects can be stopped without the same type of effects from stopping an antiretroviral medication, Clymore said.
"It is a bare-bones program right now," she said.
The North Carolina branch is among 11 ADAP programs across the country that has a waiting list of patients.
To qualify for ADAP in North Carolina, a patient must be at or below 300 percent of the federal poverty level and do not have other resources, like Medicaid or private insurance.
"It is really a program for people who have nothing else," Clymore said.
People on the waiting list are at or below 125 percent of the poverty level.
"We are talking about folks that are so unbelievably poor that they have no way to get access to health care, much less medications that are going to keep them alive," Womble said. "If we don't get them the medications, we are killing them."
Clymore said the program has put in an emergency request to Congress asking for $126 million in emergency funds for state programs.
State Sen. Bill Purcell, D-Scotland County, said the congressional delegation is working to get federal money for the program. "There's not any state money," he said.
Purcell commends the program for keeping its patients on the program, despite the cuts.
"As a physician in my other life, it bothers me that people are having trouble getting access to these drugs, but we hope that some of these pharmaceuticals help will make a difference," Purcell said.
Sen. Key Hagan said she is concerned that ADAP offices have been forced to start waiting lists.
"I will be leading the annual appropriations letter asking for increased funding for all HIV/AIDS programs, including a $370 million increase for ADAP," Hagan said Tuesday.
Gov. Bev Perdue is in the process of putting together a budget and ADAP is one of the programs she will examine, a spokeswoman for Perdue's office told WRAL News Tuesday.
CLICK HERE TO WATCH NEWS CLIP
12 Kentucky Organizations Slam Frankfort over KADAP; most have uncertain future
By Michael Thomas, Kentucky Political Editor & Senior Contributor
March 13, 2010
FRANKFORT, KY - In a proposed commonwealth budget that allocates over $3.4 billion for road projects, a small request of $3.5 million to fund the Kentucky AIDS Drug Assistance Program (KADAP) has been ignored, leaving hundreds living with HIV/AIDS facing difficult choices.
The cost for HIV/AIDS medication averages around $1,200/month - more than the entire monthly income of most families enrolled in KADAP.
"We've heard stories from people seeking out second mortgages to pay for their meds," say Kentucky Equality Federation President Jordan Palmer and Kentucky HIV/AIDS Advocacy Action Group (KHAAG) President Bobby Edelen. "One person who approached us said, 'with the uncertainty of receiving assistance I am thinking about selling off my life insurance policy' to afford life-sustaining medications. We're back to the 80s."
The nearly 1300 patients enrolled in KADAP, which is currently unfunded, receive medications through a hodge-podge of resources that are temporary and unsustainable. In the meantime, Kentucky has the longest waiting list in the nation for drug assistance - numbering over 160 men and women - with more being added every day.
"When do we come off the waiting list?" asked one HIV/AIDS patient, "When we die?"
People with HIV/AIDS who do not have access to medications are at increased risk for opportunistic infections, more frequent hospitalization (often under indigent status), and early death. In contrast, a person who is taking HIV medications as prescribed and taking care of their health can reasonably expect to live as long as someone without HIV.
"Not funding the Kentucky AIDS Drug Assistance Program is inhumane, shortsighted, and threatens individual and public health," states Palmer, who met with lawmakers six times during the legislative session trying to get KADAP restored.
Palmer held several meetings with Representative Tom Burch, Chairman of the House Health and Welfare Committee, DeeAnn Mansfield, Staff Administrator, House Health and Welfare Committee for the Legislative Research Commission, and Representative Jimmie Lee, Chairman of the House Budget Subcommittee on Human Resources.
On February 17, Edelen met with House Representatives to discuss the state of KADAP and other factors causing health care disparities in those living with HIV/AIDS.
"Chairman Tom Burch, a champion for the cause of health equity, asked some very astute questions," noted Edelen. "In those questions, he demonstrated his support for re-funding KADAP and willingness to work on some measures to eradicate the waiting list. However, the House Appropriation and Revenue Committee did not seem willing."
As the commonwealth's budget makes its way through the Senate, time is running out for those who depend on KADAP for their medication.
The following is excerpted from a statement of opinion issued by the Board of Directors of AIDS Volunteers of Lexington (AVOL):
"Given the larger financial crisis facing the Commonwealth, this may seem a specific and 'special interest' concern. The impact, however, is far reaching. Individuals with HIV/AIDS are mothers and fathers, family providers, valued employees, consumers, and citizens. Lack of access to medication will result in more work missed, a greater strain on social service organizations as families are forced into poverty and homelessness, a burden on medical facilities who must write off astronomically expensive HIV/AIDS hospital care to indigent and low income people, plus further disenfranchisement of those Kentuckians already at highest risk. Inasmuch as the commonwealth is feeling the challenges of the current economic climate, low-income individuals and families living with HIV/AIDS are losing jobs, struggling to make ends meet, and deciding whether to use their meager incomes to buy life-sustaining drugs or to pay rent and buy food for their families.
AVOL sees an urgent need for action to restore KADAP. This effective program of preventative care is in the best long-term interest of the Commonwealth as well as those living with HIV/AIDS. Given the potential adverse effects and medical impact, time is of the essence."
HIV/AIDS has the most devastating impact on Kentucky's most at-risk communities, who already face significant barriers in accessing health care. KADAP is literally a lifeline for these men and women.
Minority populations are disproportionately at risk for HIV/AIDS. According to statistics from the HIV/AIDS Branch of the Kentucky Cabinet for Health and Family Services, African-Americans in Kentucky make 7.6% of the commonwealth's total population but account for 36% of all new HIV infections. Similarly, Latino Kentuckians make up 2.4% of the population but account for 7% of new HIV infections.
AIDS organizations across the Commonwealth are expressing alarm and dismay that the budget will be passed that does not include funding for the Kentucky AIDS Drug Assistance Program. Small non-profits do not have the resources to provide a safety net for the commonwealth's shortfall in funding.
Other news of interest
For further information contact:
ADAP Advocacy Association (aaa+)
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