By Bob Roehr
The $4 billion spent in the U.S. this year on anti-HIV drugs has slashed the rate of death and dramatically improved the quality of life for most people living with HIV. But the growing caseload has far outstripped increases in funding, and systems of care are struggling to meet the challenge.
The most visible deficiency is with the AIDS Drug Assistance Program (ADAP). Official state waiting lists have passed a thousand, and that masks even greater numbers of people who have been excluded through tightened eligibility standards and extended application procedures. Others have not been able to gain access to drugs that they need because of restrictions placed on drug formularies or total numbers of prescriptions, increased copayments, and lower caps on total benefits.
The International Association of Physicians in AIDS Care convened a meeting in Washington, D.C., April 6 to discuss 'assured sustainability' of access to care in both the U.S. and overseas. President Jose Zuniga said that will require 'a mixed basket' of responses at a time when both the public and private sectors are experiencing sever economic constraints.
Joshua P. Cohen, an economist at the Tufts [University] Center for the Study of Drug Development, said, for all of the complaints about the rising cost of drugs in the U.S., only 10% of the healthcare dollar goes towards prescription drugs.
While that percentage is significantly higher with HIV care, there is also no doubt that those drugs have been responsible for slashing the number of AIDS deaths from their peak a decade ago, and dramatically increasing the quality of life for most of the survivors.
'The dramatic fall in deaths has been our trump card' in pushing for increased funding in the past, said Lanny Cross, ADAP manager for New York State, 'It's become a harder sell.' He pointed to New Jersey where, on April 1, the list of drugs covered 'went from an abundance to a very limited formulary.'
The approval of new anti-HIV drugs has been good for patients, 'but not such a good thing from a price perspective,' he said. The trend has been for newer drugs to cost more, the price of older ones to increase periodically, and for a greater number of drugs to be used in salvage therapy for those who develop drug resistance. That all contributes to increased financial pressure.
KAISER PERMANENTE EXAMPLE
'I have health insurance and I need ADAP too.' That was one of the realities put forward at a rally earlier this year in Sacramento that helped Californians stave off cuts to the AIDS budget, said Michael Allerton, HIV policy coordinator for Kaiser Permanente.
Kaiser is one of the largest healthcare providers in California and counts nearly 10,000 PWAs among its clients. He is proud of the fact that 72% of them have undetectable viral load. Kaiser has lost less than 1% of those patients over each of the last six years, and that includes accidents and non-HIV related conditions.
While only 0.16% of their patients have HIV, the cost of treating the disease is second only to depression for Kaiser.
Allerton said there is tremendous pressure from companies purchasing health insurance for their employees to reduce the cost of those policies. The major ways of doing that are to increase copayments and cap what is covered. That results in poorer coverage for the patients when they most need it.
As a result, Kaiser's case managers, who used to talk with patients about adherence, increasingly are working to qualify them for ADAP and other programs when they reach the limit set by their insurance policy.
Craig Thompson, executive director of AIDS Project Los Angeles, echoed that concern. He said money is being taken out of case management to cover shortfalls in other areas and that makes it even more difficult for PWAs to stitch together access to the services they need.
'The patients do not go away,' said Bill Arnold with the ADAP Working Group. 'They are going to crash into another part of the healthcare system, but nobody wants to discuss that.' And nobody has done a very good job of making the case of where they will go.
ACTION
A coalition effort has been successful in getting most of the pharmaceutical companies to agree to a price freeze for ADAP. Part of the reason is because of the argument that ADAP 'is unique in that it is not a whole system,' and so the cost of the drugs is not balanced by benefits such as reduced hospitalization, said Cross. Thus he does not see this as a useful model to expand to other parts of the healthcare system.
Colorado physician Ben Young saw the price freeze for ADAP as an acknowledgement by industry that prices are too high. He called industry access programs 'only a band aid' on the greater problem of price. While Allerton worried that pushing industry to expand access programs will become an excuse for legislators not to fix the problem by adding the necessary funding.
The CDC has on ongoing initiative to increase testing to make people aware of their serostatus and direct them into care. David Munar, with the AIDS Foundation of Chicago, said it would be useful to have the CDC document outcomes in the success or failure of those people in accessing care. He believes that information will strengthen the case for additional funding.
Thompson wants to see physicians take a strong stand against direct-to-consumer advertising of AIDS drugs. 'It would give pharma a graceful way to step out of it, saving them money which then could be better spent in the community or to reduce drug prices.'
Kansas City physician Patrick Clay voiced a standard complaint of direct-to-consumer advertising: 'You have to convince [the patient] that it is not the right choice for them.' Few were optimistic that the advertising would stop.
Arnold brought the discussion back to the political component—putting pressure on Washington to increase funding. AIDSWatch, held in mid-May, is planning a civil disobedience that will lead to arrests in order to draw attention to the problem. He suggested, 'Some white coats getting carted off in the paddy wagon would be helpful.'
