Thousands Face Loss of Treatment in ADAP Money Crisis
June 28, 2002
Some time next spring the first fusion inhibitor, T-20, is expected to be approved by the Food and Drug Administration. 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 and 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 led 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 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 incorporate 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."
See Advocacy Groups, below after the References, for a selected list of organizations engaged in advocating for AIDS programs.
This article was provided by AIDS Treatment News. It is a part of the publication AIDS Treatment News.