Three People Just Died on ADAP Waiting Lists!
August 28, 2003 THE CHARLESTON GAZETTE Charleston, West Virginia
West Virginia's AIDS Drug Assistance Program stopped taking new patients almost seven months ago. Since then, three patients have died waiting to get the free HIV/AIDS drugs provided by the federally funded ADAP, a drug program for low-income patients who do not qualify for Medicaid or other drug programs. Another 14 patients are still waiting to be enrolled. "People are now starting to die while they're on the waiting list," said Dr. Faisal Khan, director of West Virginia's HIV/AIDS/STD program. "It is a crisis that will continue." read more
Five People Died Waiting This Year
Kentucky ADAP Crisis on Local NBC News
September 24th, 2003 Local NBC News LOUISVILLE, KENTUCKY
Right now, 169 people in Kentucky are on the ADAP waiting list. By December, that number is expected to grow to 200. Already this year, five people have died waiting for medication. read more
States Offering Less Assistance For AIDS Drugs
Federal Spending Is Up, but So Is Demand, Survey Finds
By Ceci Connolly, Washington Post Staff Writer
Thursday, May 20, 2004; Page A04
Tight budgets, rising drug costs and medical advances that help people with AIDS live longer have forced a growing number of states to trim prescription drug assistance for AIDS patients and place at least 1,500 people in 10 states on waiting lists, according to a national survey released yesterday.
Even though federal spending on the AIDS Drug Assistance Program has increased, the money has not kept pace with soaring demand for the expensive drug regimens that have dramatically extended and improved the lives of people with the disease, said the annual report by the Kaiser Family Foundation.
A handful of patients in West Virginia and Kentucky died while on waiting lists, but officials said it was difficult to determine whether the drug program could have prevented those deaths. The majority of clients are nonwhite low-income men 25 to 44 years old.
In addition to creating waiting lists, some states have reduced the number of covered drugs or raised income eligibility levels to try to control costs, the survey found.
Nationally, about 136,000 people participate in the program, known as ADAP. Congress increased federal ADAP grants from $714 million in 2003 to $749 million this year. President Bush has proposed adding $35 million next year.
But with 40,000 new cases of HIV infection diagnosed each year and most people requiring medication for many more years, the need for free or discounted medicine is probably far greater than the waiting lists suggest, said Murray Penner, director of care and treatment programs of the National Alliance of State and Territorial AIDS Directors, which also worked on the report.
ADAP, created in 1987, is considered the payer of last resort because it serves patients who are uninsured and do not qualify for other government programs such as Medicaid. Federal money is distributed based on the percentage of AIDS cases in a state or territory. Because states have wide latitude on how much they contribute and what services are provided, "what you get depends on where you live," the authors wrote.
In North Carolina, medication is provided to people with annual incomes less than $11,000, compared with about $45,000 in Massachusetts, New York and Delaware. Last year, 11 states cut ADAP funding, two reduced the number of drugs provided and three limited patient assistance.
Few states have been able to afford the newest medications or to cover a full complement of AIDS drugs. Seventeen of the 57 states and territories in the survey provide the full set of 14 drugs recommended by the U.S. Public Health Service and the Infectious Diseases Society of America.
Kentucky's ADAP is in particularly dire straits, said Lisa Daniels, the program's director. She created a waiting list in February 2000 and has had one ever since. Last year, five people on Kentucky's waiting list died before they could be enrolled in the program. But the individuals were eligible for other prescription assistance, she added.
Locally, the picture was mixed. While the District and Maryland increased eligibility or money for the program, Virginia scaled back its efforts slightly.
Dying for AIDS Drugs
by Esther Kaplan The Nation | October 16, 2003
AIDS deaths, which increased ferociously in the United States throughout the 1980s and early '90s to a peak of 51,000 a year, suddenly abated in 1996 with the advent of antiretroviral combination therapy, a pricey and toxic brew that pulled people from their hospital beds like Lazarus. The relief was so intense that Andrew Sullivan announced "the end of AIDS," and researcher David Ho held out the hope of "eradication." It's often forgotten that AIDS deaths didn't fall to 9,000 a year by 2001 because of drug discovery alone. Those lives were also saved by a national commitment to provide access to the new medications. Throughout the late 1990s, Congressional support for the AIDS Drug Assistance Program was so strong on both sides of the aisle that appropriations exceeded presidential requests every year.
That has now changed. As the growing epidemic slams up against state austerity measures, ADAP has descended into crisis, and Republicans in Washington have refused to intervene. As of early October, more than 600 people with HIV have been denied access to medications through the program. Three states have tightened income eligibility requirements; five have restricted the list of drugs they cover, hampering competent treatment; thirteen have capped their programs, leaving the sick to languish on waiting lists. ADAP has served as the payer of last resort since 1987, providing HIV medicines for hundreds of thousands of people with HIV who lack insurance, or whose prescription benefits don't come close to matching the drugs' exorbitant price tag. Most ADAP users are the working poor, earning too much to qualify for Medicaid at jobs that don't provide health plans. Study after study has confirmed that the program saves public-health dollars by preventing expensive hospitalizations--and saves lives. But since February, two people have died while on the West Virginia waiting list, and five more just died on Kentucky's. There are no death tallies for those whose income puts them a few dollars above states' new restrictive income requirements.
Doctors, social workers and people with HIV describe a desperate scramble to gain access to lifesaving medications. In Alabama, the waiting list is 137, growing by nine or ten a week; to save additional dollars, the state just blocked coverage of the latest HIV drug, Fuzeon, a treatment used almost exclusively by those who have run dry of options. In Oregon, when the cash-strapped state temporarily eliminated some Medicaid prescription coverage, the ADAP waiting list ballooned; administrators responded by restricting covered drugs and instituting "cost sharing."
Margaret Nicholson, a Springfield, Oregon, homecare attendant who survives with her mother and husband on less than $20,000 a year, lost her ADAP coverage because she couldn't afford the new co-pays; she has now gone four months without seeing a doctor and is scraping by on pill samples. In North Carolina, HIV doctor Aimee Wilkin says some of her waiting-list patients, forced to seek medicines through drug company charity programs, have faced multiple treatment interruptions, the result of bureaucratic delays, exposing them to the risk of HIV drug resistance. In Kentucky, caseworkers are so desperate they're asking churches to pass the hat to sponsor someone's pills for a few weeks at a time.
Even after aggressively negotiating with drug companies to save ADAP $65 million with price breaks for next year, advocates with NASTAD, an association of state AIDS directors, calculate that it will take an ADAP increase of $214 million to cover the growing need next year--the amount requested by Senator Charles Schumer in a budget amendment rejected on a largely party-line vote (with one brave exception, Republican Mike DeWine). Other Republicans, even from states with bursting waiting lists, like Alabama, Colorado, Nebraska and North Carolina, voted no, apparently under intense pressure from George W. Bush and Bill Frist to stick to their domestic budget cap. The health and labor spending bill is currently in conference, where a minimal increase of $25 million to $38 million is under debate.
Such underfunding, combined with an aggressive new federal HIV testing initiative, could swell ADAP waiting lists into the tens of thousands in 2004, according to Bill Arnold of the ADAP Working Group. In his State of the Union address in January, Bush made AIDS a cornerstone of his "compassion" agenda, announcing a $15 billion emergency plan to confront the global epidemic. He spoke of a doctor in rural South Africa who said that hospital workers, lacking drugs, simply tell their AIDS patients to go home and die. "In an age of miraculous medicines," the President went on to say, "no person should have to hear those words."
Six hundred--and counting--have now heard those words here at home. "For the people on those wait lists," says Arnold, "it will be just like the 1980s, when there were no drugs, where you get pneumonia or a brain infection and within a couple of years you're gone."
Thousands Face Loss of Treatment in ADAP Money Crisis
by Kate Krauss
Some time next spring the first fusion inhibitor, T-20, is expected to be approved by the Food and Drug Administra-tion. For some people with AIDS, this drug will be part of a "salvage" therapy that could keep them alive. T-20 is a complicated drug to manufacture and will have a very high price tag. Without financial help, most patients will not be able to afford it. But state AIDS Drug Assistance Programs (ADAPs) may be unable to pay for T-20 when it becomes available next year.
At least 12 states have already depleted their ADAP funding for this year, and many more are expected to run out of funds by the end of the year. Says Lei Chou, of the AIDS Treatment Data Network and co-author of the ADAP Monitoring Project: Annual Report, "The ADAP funding shortage has the potential to create a two-tiered system: people who get access to new salvage therapies and people who don't."
The twelve states currently in trouble have established waiting lists, expenditure caps, or restrictions on drug access; two more, New York and Florida, are also contemplating cuts. A recent attempt by activists to include $82 million dollars for ADAP in the Federal Emergency Budget Supplemental failed when no politician was willing to take the lead on the measure.
In North Carolina, the waiting list is 574 people long1; Oregon is actually planning to remove people from its ADAP rolls2. "It's a dire situation -- a lot of people are waiting to get life-sustaining medications," said Arthur Okrant, the head of North Carolina's AIDS programs.
What Went Wrong
Several factors have lead to the program's current predicament. People with AIDS are living longer and are enrolled in the program longer; ADAP served 140,000 nationwide last year3. They are using more complex and expensive regimens. And drug prices are skyrocketing -- retail HIV drug prices increased 10.4% between 2000 and 2001 even though the inflation rate in 2001 was only 1.6%4. Overall, monthly per capita costs for state ADAPs rose 81% between FY 1996 and FY 2000. Between June 1999 and June 2000 alone, costs increased 9%5 -- triple the inflation rate6.
Another important reason for the funding crunch is the Bush administration's decision to increase the ADAP budget by only $50 million this year -- far below the $130 million estimated need7. Says Chou, "ADAP is reaching a breaking point regarding our ability to ask for what is needed and what Congress and the Administration are willing to give out. It needs to become an entitlement program."
Many states contribute nothing to the program. More than a dozen states, ranging from New Jersey to North Dakota, rely solely on Federal funding for their ADAPs8. States that do help pay for the program are facing their own funding crises because of the economic recession. Most are struggling to pay for basic entitlement programs like education and Medicaid; they are scarcely in a position to increase their spending for ADAP.
What To Do About the ADAP Funding Shortage
On a policy level, the ADAP may not be sustainable if drug prices continue to increase at 9% or more per year. One possibility, which has been endorsed in a report by the Office of Inspector General9, is to extend Veterans Administration deep drug discounts to state ADAPs10. However, legislation would be needed to give states access to VA pricing -- and it would likely be opposed by the pharmaceutical industry and by the VA itself, which fears that it would be unable to get the same low prices if the ADAPs were included11. In addition, VA pricing is used for programs where drugs are bought in bulk -- and many state ADAPs use a reimbursement system instead. A more obvious solution is for drug manufacturers to simply cut their prices for ADAPs. Activists with the Fair Pricing Coalition and the Consumer Caucus of the ADAP Working Group, along with several others, recently induced GlaxoSmithKline, Pfizer, and Abbott to freeze HIV drug prices for two years. Why? According to Fair Pricing Coalition co-founder Martin Delaney (also co-founder of Project Inform), "They're very worried about the Congress, and that they won't be in a position to ask for ADAP money that goes into their coffers if they aren't seen as collaborating with the community. One of them said it was because they felt we all needed a two-year "period of stability" in which we weren't fighting about prices on a micro level and could use the time to work together on building long-term solutions. One of them has...made it explicit that they want to work on the long-term solutions."
Companies may be also be aware that drug pricing is a hot-button issue for the general public. Chris Aldridge, of the National Alliance of State and Territorial AIDS Directors, commented: "Drug companies need to see that state ADAPS make up a very small part of their market. And that more money available will just sell more drugs." Purchases by entities such as the ADAPs comprise less than 1% of the total U.S. pharmaceutical market12.
Another idea might be to begin an effort to reauthorize the ADAP as an entitlement program. The AIDS Drug Assistance Program was originally envisioned to address an emergency -- the urgent need to provide expensive medications to people with AIDS until the crisis passed. Unfortunately, 40,000 Americans still become infected with HIV every year, and the AIDS epidemic continues unabated. Making ADAP a permanent entitlement would provide stability for people who rely on the program, presumably for the rest of their lives.
Still another approach is to expand Medicaid (which provides care and medication) to include people living with HIV who have not yet been diagnosed with AIDS. The Early Treatment for HIV Act would allow states to extend Medicaid coverage to a significant proportion of people now covered by ADAP (however, it would leave many others out). A coalition of activists including NAPWA, Project Inform and AIDS Action is advocating for this bill, which has been introduced in both the House (H.R. 2063) and Senate (SB 987) and is gathering co-sponsors at this writing.
Another way to conserve ADAP dollars is to check applicants for Medicaid eligibility. The federal agencies that administer Medicaid and ADAP are pushing states to establish online databases that allow them to quickly verify a patient's eligibility for Medicaid, so that they are not mistakenly put on ADAP instead (although some patients may need both). This can relieve some pressure on the ADAP as well as on other programs of the Ryan White Care Act.
Finally, renewed grassroots lobbying and other advocacy efforts are needed. In the past, activists criticized AIDSWatch, the national AIDS lobby day, for rebuffing participants who wanted to discuss state AIDS issues with their legislators (instead of focusing on Federal funding alone). Concerned about this, some activists gradually dropped out of the program. But AIDSWatch represents a crucial opportunity for the AIDS community to speak as a powerful, single voice on funding issues. It also offers training and a model that people living with HIV/AIDS can use in lobbying legislators back at home. If it can incorpo-rate community concerns, AIDSWatch could become a focal point of a new campaign for domestic AIDS funding.
On a smaller scale, a brand-new grassroots group, the ADAP working group of the AIDS Treatment Activist Coalition (ATAC) will be lobbying for ADAP funding later this summer. Organizers plan to schedule local district visits in August (see Advocacy Groups, below).
And AIDS service providers must step up to the plate and lobby with their clients. While many believe this is not their job, others AIDS service organizations have become expert lobbyists. "It's the easiest thing in the world," says Jeff Graham, the Executive Director of Atlanta's AIDS Survival Project. He especially underscores the role that AIDS services organizations can have in lobbying their state legislatures. "Going to state lawmakers is crucial," says Graham. "The mentality is that AIDS funding is a federal issue, but more and more it's local. Georgia, which used to pay nothing into the AIDS Drug Assistance Program, now spends $11 million on the program. Nonprofits can lobby -- there are provisions built into the tax laws. There is an urgent need for service providers to lobby, and in these times they have a moral imperative to do it." Project Inform's Ryan Clary, an ADAP advocate and community organizer, echoed Graham's remarks: "It's so important for AIDS service organizations to lobby, and to bring their clients to lobby, not just the president of the board."
Others point to the need for outside pressure from activist groups. Says Chou, "There is a severe need for people to work outside the system right now to combat drug company price increases. People are in jobs that deal with access to treatment but are funded by the drug companies. There is a limit to what we can do and what we can say." He advises activists to "Look at the situation with a clear eye and go where they see they are needed most."
**AIDS Treatment Activist Coalition** (ATAC). This new group, formed by
leading treatment activists, works on many AIDS treatment issues by email,
so you can be involved even if there is no local treatment activist
organization. For more information, see
ATAC has a grassroots subgroup focused on advocat-ing for $152 million for
FY 2003 for the AIDS Drug Assistance Program. The group plans to organize
lobby visits across the country in August 2002 as well as letters to the
editor and call-in days. New people who are willing to work are welcome --
and the group will be teaching newcomers how to organize lobby visits, write
effective letters to the editor, etc. For more information, contact Ryan
Clary at Project Inform: call 415-558-8669, ext. 224 or email him:
**AIDSWatch 2003** The important national AIDS lobby day held each spring in
Washington, DC. For more information, see
http://www.napwa.org/aidswatch.htm, e-mail firstname.lastname@example.org, or call
**The Community Advisory Board of Your State's ADAP** The Ryan White Care
Act mandates that each state ADAP have a community group to advise it. For
more information, contact your state public health department's HIV/AIDS
division (usually located in the state's capitol city).
ACT UP Philadelphia regularly organizes state and federal lobby days
that involve new lobbyists. They are an important resource for first-time l
obbyists. Phone 215-731-1844 or email email@example.com.
**The National ADAP Monitoring Project** This group is composed of staff
members of the AIDS Treatment Data Network (http://www.atdn.org), the
National Alliance of State and Territorial AIDS Directors
(http://www.nastad.org), and the Kaiser Family Foundation
(http://www.kff.org). It produces important reports about issues such as
ADAP drug pricing. The group also writes an annual report on the state of
ADAP. For more information, see http://www.atdn.org/access/adap/.
**The ADAP Working Group** This longstanding alliance of AIDS advocates and
drug company representatives works to secure funding for the ADAP. The
consumer caucus of this organization recently helped secure price freezes
from three major drug companies. See http://www.tiicann.org or call
(202)-588-8868 for more information.
**Early Treatment for HIV Act** For more information about advocacy efforts
to support this bill, contact Ryan Clary at Project Inform, 415-558-8669,
ext. 224 or email him: firstname.lastname@example.org.
**Lobbying** Nonprofit organizations that are new to lobbying can calculate
the amount of money they are permitted to spend on it under IRS rules based
on their budget. A non-profit support organization, tax attorney, or local
IRS office can provide more information about how to do this.
1. Steve Sherman, North Carolina Department of Public Health, HIV/AIDS division.
2. Oregon Department of Community Health.
3. National Alliance of State and Territorial AIDS Directors, The Henry J.
Kaiser Family Foundation, and the AIDS Treatment Data Network, National ADAP
Monitoring Project: Annual Report, April, 2002. http://www.atdn.org/access/adap
4. American Institutes for Research (AIR) analysis of Scott-Levin data. This
data is not available online. The AIR can be reached at (202) 342-5000 or at
5. National Alliance of State and Territorial AIDS Directors, The Henry J.
Kaiser Family Foundation, and the AIDS Treatment Data Network, National ADAP
Monitoring Project: Annual Report, March, 2001.
6. United States Bureau of Labor Statistics:
7. GMHC Treatment Issues, Volume 16, Number 4, April 2002. "ADAP Strapped,"
by Lei Chou and Anne Donnelly.
8. National Alliance of State and Territorial AIDS Directors, The Henry J.
Kaiser Family Foundation, and the AIDS Treatment Data Network, National ADAP
Monitoring Project: Annual Report, April 2002. Appendix VIII: ADAP Budget
FY201: Federal and State Sources. http://www.atdn.org/access/adap
9. Office of the Inspector General, AIDS Drug Assistance Program Cost
Containment Strategies, OEI-05099-00610, September 2000.
10. National Alliance of State and Territorial AIDS Directors, The Henry J.
Kaiser Family Foundation, and the AIDS Treatment Data Network, Issue Brief:
AIDS Drug Assistance Programs -- Getting the Best Price?, page 5, April,
11. Staff, Office of Rep. Henry Waxman (D-Ca.).
12. Office of the Inspector General, AIDS Drug Assistance Program Cost
Containment Strategies, OEI-05099-00610, September 2000.
Your Help is Needed Again to Save ADAP
by Lei Chou and Anne Donnelly
ADAP stands for AIDS Drug Assistance Program, although some states have different names for similar programs. ADAP provides life-sustaining and life-prolonging medications to low income individuals with HIV who have no other source of payment for these drugs.
In June of 2001, ADAP served roughly 77,000 people and national ADAP enrollments have been growing consistently at about 600 people per month.
Although an average of 80 percent of ADAP funding comes from the Federal government, individual ADAPs are administered by the states and require some additional amount of state funding if they are to offer more than bare bones drug coverage. The list of medications provided by the ADAPs varies considerably from state to state, ranging from excellent programs in California and New York to very problematic programs in much of the Southeast and other areas.
Federal ADAP funding was increased by $50 million this year - well short of the $130 million estimated need. Recent pharmaceutical price increases may push this estimated shortfall up by an additional 50 percent during 2002. This means that most, if not all, ADAPs will run out of money towards the end of this year.
Pressure on ADAP is expected to increase as new drugs such as pegylated interferon and T-20 become available next year. Access to these newer products will probably require prior authorization. Additional pressure will likely come from rising unemployment and loss of insurance; a steady level of new HIV infections and a possible rise in AIDS cases; the emergenge of long-term drug side-effects; and the tightening of state Medicaid programs.
For 2003, the President has proposed flat funding ADAP (no increases). Advocates for ADAP say a push in Congress for an Emergency Supplemental Request to increase federal funding is needed right away. If no supplemental funding is received this year, then next year's shortfall could rise to $161 million or about 14 percent of the total ADAP budget.
With the Federal shortfall, the States (already under budgetary pressure from Medicaid and other health programs) will need to contribute additional money to avoid resorting to waiting lists or other restrictions. Six ADAPs currently have waiting lists representing about 700 people who are going without treatment. This number is expected to grow. Several states currently have restrictive eligibility criteria and several more are likely to introduce new restrictions later this year. Most states will soon begin to debate increasing their own contributions to ADAP funding, but few can afford to fill the gap.
All of this means that ADAPs - and the people with HIV who depend on them - are in deep trouble.
The 2002 National ADAP Monitoring Report will be released soon by the Kaiser Family Foundation. This report will be available at www.kff.org .
For detailed information on each state's individual ADAP, contact the AIDS Treatment Data Network/The Access Project: National AIDS Drug Assistance Program Index .
PHONE CALLS TO CONGRESS NEEDED NOW
AIDS Funding Votes in US Congress
HELP KEEP ADAP GOING
Activists are witnessing the near-collapse of the AIDS Drug Assistance Program under the weight of high drug prices and expanding utilization. There are PWAs right now in states like Florida who have discontinued their meds because they can no longer find a way to obtain them. Others are on long waiting lists. An ADAP waiting list means that needy people with HIV/AIDS are walking around sick without medication.
Important drugs like protease inhibitors and fluconazole are provided under this program for some 140,000 people with AIDS who cannot otherwise afford them.
One reason is high drug prices; another is a current lack of organized, grassroots support.
This is your chance to get off your butt and do something about it. Federal funding for ADAP is at stake--for many states, that's all the ADAP money there is.
Global AIDS funding is also at stake during this House vote; please support it. The vote is Wednesday. Make the call now.
AIDS DRUG ASSISTANCE PROGRAM (ADAP) BACKGROUND:
The AIDS Drug Assistance Program (ADAP) provides HIV/AIDS-related prescription drugs to low-income, uninsured and underinsured persons living with HIV/AIDS in the 50 states, the District of Columbia, Puerto Rico, Guam and the Virgin Islands. Each state or territory administers its own ADAP, including the establishment of financial and clinical eligibility criteria and drug formularies. Federal funding for state ADAPs is allocated by a federally prescribed formula.
Due to insufficient resources in FY 2001 and projected deficits in FY 2002, 10 state ADAPs have already closed enrollment to new clients or instituted other program restrictions - these include: Alabama, Georgia, Guam, Idaho, Kentucky, Maine, North Carolina, South Dakota, Texas and Wyoming. In addition, a number of states with traditionally fiscally stable ADAPs (e.g. California, New York, Florida and Pennsylvania) report the potential need to implement significant ADAP restrictions based on current funding levels and projected trends in program utilization.
GLOBAL AIDS FUND BACKGROUND:
When Congress passed the FY 2002 budget last November, it failed to include enough money for global AIDS programs. Advocates called for at least $1 billion to be provided to the Global Fund to Fight HIV/AIDS, TB,and Malaria. This Fund is an independent funding mechanism to channel resources to programs focused on prevention, care, support, treatment and programs that deliver desperately needed AIDS drugs to people living with HIV/AIDS. To date the US has provided only $300 million to the Global Fund. On April 25 the Fund announced its first round of grants, awarding a total of $378 million over two years to 40 programs in 31 countries.
If your Representative is a member of the House Appropriations Committee, call them today and urge them to support efforts to increase funding:
**** $82 million in emergency funding for ADAPs.
**** At least $700 million for the Global AIDS Fund
For a list of members of the House Appropriations Committee go to:
If your Representative is not on the House Appropriations Committee ask them to contact the Committee's Chairman Bill Young (R-10-FL) and Ranking Member David Obey (D-7-WI) to urge their support to include funding for the Global AIDS Fund and ADAP in the emergency supplemental appropriations measure.
Be sure to share this Action Alert with all of your friends and colleagues, and encourage them to join you in calling your respective Representative.
You can reach your Members of Congress through the Capitol switchboard at 202-224-3121 or you can find their direct contact information through AIDS Action's Legislative Action Center at: www.aidsaction.org
You can send an email about this issue to your Representative if you click here:
Note: see www.house.gov and www.senate.gov for fax, direct phone and email addresses for members.
- Urge support for the inclusion of at least $700 million for the Global Fund for HIV/AIDS, TB, and Malaria in the emergency supplemental spending bill.
- Urge support for $82 million in emergency funding for the AIDS Drug Assistance Programs. The funding should be appropriated in a way that
will give the Department of Health and Human Services the flexibility to distribute the funding to states experiencing ADAP budget shortfalls.
- Urge the House leadership - including Speaker Dennis Hastert, Majority Leader Dick Armey and Minority Leader Dick Gephardt - to support inclusion of funding for the Global AIDS Fund and the AIDS Drug Assistance Program in the emergency supplemental appropriations measure.
The House Appropriations Committee will make decisions regarding emergency spending by the federal government next Wednesday, May 1st as part of an emergency supplemental appropriations bill. Members of the House Appropriations Committee who favor a strong response to the global AIDS epidemic will attempt to offer an amendment in committee that would increase the United State's contribution to the Global AIDS Fund. The Senate Appropriations Committee will take up a similar measure May 10th.
AIDS Action is also urging the House Appropriations Committee to provide emergency funding for the AIDS Drug Assistance Program (ADAP). Due to insufficient resources in FY 2001 and projected deficits in FY 2002, 10 state ADAPs have already closed enrollment to new clients or instituted drug formulary restrictions (see list of states below). A number of states such as California, Florida and New York report the potential need to implement significant ADAP restrictions later this year based on current funding levels and projected trends in program utilization. Without additional ADAP funding in FY 2002, many low-income and uninsured people living with HIV/AIDS may be denied access to life-prolonging HIV/AIDS drug
>From Issue #381 of AIDS Treatment News
On an ADAP Waiting List? Advice from Treatment Activists
..by Kate Krauss
AIDS treatment activists submitted these suggestions during the writing of the story on the current ADAP funding crisis ("Thousands Face Loss of Treatment in ADAP Money Crisis," AIDS Treatment News June 2002).
1. Sign up for the ADAP waiting list, don't just walk away. Make sure that you keep in touch with your case manager so that he or she can find you when it's your turn.
2. No matter how upset and frustrated you feel, do not drop out of care.
3. Remember that people who are newly diagnosed with HIV are not supposed to start multi-drug therapy until they have fewer than 350 CD4 cells -- you may not need to start your treatment regimen yet.
4. Push your physician or case manager to enroll you in patient assistance programs. These are drug company programs that provide medications for low-income people who cannot obtain drugs through another source. A savvy doctor's office manager or case manager should fill out the paperwork. If you need advice on this, call Project Inform's treatment hotline: 800-822-7422 (toll-free in the United States) or 415-558-9051 (in the San Francisco Bay Area or internationally). Hotline hours are Monday-Friday, 9am-5pm and Saturday, 10am-4pm (Pacific Time). For a directory of patient assistance programs, see http://phrma.org/searchcures/dpdpap/ or call (800) 762-4636 for a copy. The directory is organized by drug company name.
5. Some clinics keep stashes of AIDS medications for people like you; some PWAs may operate a community "medicine chest" of free, unused medications. Ask around in support groups. Visit AIDS clinics and explain your situation -- discreetly. Get out the word that you are stuck and you need help. Remember, though, that interrupting antiviral therapy may be worse than waiting to begin.
6. Find out if your community has an emergency medication fund.
7. Check to see if you qualify for Medicaid.
8. Document your situation and distribute the informa-tion to AIDS law organizations and other advocates. It will give them ammunition to fight for funding. Offer to tell your story to legislators or other officials.
9. Join an advocacy group (see the list in the associated article). Learn how to lobby and write letters to the editor. Then do it. There is power in numbers.
10. Plan carefully before you move to another state -- ADAP formularies vary widely from state to state, and some don't even cover antiviral drugs. Some states require a six-month wait before you can access benefits. Some ADAPS may have a waiting list. Call local AIDS organizations and people with AIDS to get current information -- before you move.
National AIDS Drug Assistance Program State Listings Index [off-site]
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Your Help is Needed Again to Save ADAP
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