AIDS lobbies push for expanded care coverage
Groups say special disease needs special funding
The HIV Treatment Improvement Act of 1997, a bill introduced to Congress last month, would extend health care to thousands of HIV-positive Americans who have been excluded from the benefits of new therapies. But AIDS lobbyists warn that expanding Medicaid coverage and improving the AIDS Drug Assistance Program (ADAP) is not a long-term solution to treating the uninsured, who make up a majority of AIDS patients.
"Scientific developments have outstripped the ability of a bureaucratic health care system to provide care," said Mark Senak, JD, director of planning and research for AIDS Project Los Angeles, at the First International Conference on Healthcare Resource Allocation for HIV/AIDS. "There are significant problems with each of these systems [individual insurance, ADAP, Medicaid] and what has resulted can only be described as an apartheid of American Medicine."
The problems reflect fallout from the failure to reform health care three years ago, a failure exacerbated by the radical paradigm shift in HIV treatment, Senak told about 150 health care experts gathered in Washington in November.
The new standard of combination therapy has changed the needs for health care coverage almost overnight by adding more drugs to treatment regimens and expanding those regimens to include people before they get AIDS. Beset by expanding enrollment for treatments that have doubled and tripled the cost of care, many state ADAPs are having to close their doors to new patients and limiting the drugs they cover. At the same time, Medicaid, which covers 53% of people with AIDS in the country, is no longer responsive to patients who are responding so well to treatments they are no longer deemed disabled.
"It is almost a quintessential example of a system that makes very little sense," said Lawrence Gostin, JD, professor of medicine at Georgetown University. "Those who need the drug can’t get it until they get sick and once the drug works they are no longer eligible."
Confronted by this dilemma, lawmakers have responded in different ways. Last spring, Vice President Al Gore asked the Health Care Financing Administration to conduct a feasibility study of a demonstration project expanding Medicaid coverage to all people with HIV infection, not just those who have AIDS.
"We have taken that charge very seriously and have been looking at possibilities comprehensively," said Sally Richardson, HCFA’s director of Medicaid bureau. "There are difficult questions, such as how the demonstrations project could be meet budget neutrality guidelines, should we offer a full or limited benefits package, and what happens at the end of the project as far as services?"
Richardson pointed out that several recent improvements in Medicaid coverage for AIDS patients have added to a Medicaid budget that in 1997 will have paid $2 billion in HIV-related care, in addition to $1.5 billion from state matches. HCFA has expanded state capacity to use home-and community-based waiver services for patients who otherwise would have to be institutionalized. It has expanded Medicaid managed care coverage to populations not traditionally covered by Medicaid. And it has mandated that all state Medicaid programs cover all FDA-approved drugs for treating HIV disease, including protease inhibitors, she noted.
"We recognize what we have done in the past needs to be expanded," she said at the conference. "We have concerns that not everyone is getting the treatment they need."
Under the HIV Treatment Improvement Act introduced by Rep. Nancy Pelosi (D-CA), people who are HIV-infected and meet state income and resource requirements under Medicaid would receive a limited benefit, which would include primary care, therapeutic drugs, lab tests, and other services necessary for compliance with treatment.
The bill also would require that the secretary of Health and Human Services establish a formulary for therapeutic drugs that is consistent with recognized guidelines. State Medicaid formularies would be required to cover these drugs at the minimum.
The biggest obstacle to passing the bill is concerns that the expansion would be too costly, particularly with current budget constraints. "The difficult question to answer is how much this will cost," said Scott Hitt, MD, an AIDS physician and chairman of the president’s AIDS Advisory Council. "When we see the numbers I think we will find it will be more expensive than any of us thought."
Senak, however, argues that the budget- neutrality mandate should take into account the costs avoided if access is expanded to Medicaid. "If infectibility declines with combination therapy and widespread access, do we not have an opportunity to change the course of the epidemic?"
Skeptical that a Republican-controlled Congress would support Pelosi’s measure, Senak and others are pushing for Medicaid reforms through an administrative act. But as Pelosi’s senior aide, Steve Moran, pointed out, Gore asked for the study in April and it still has not been produced. Moran also pointed out another concern. Lawmakers have decided that Medicaid will grow at a slower rate over the next five years and domestic discretionary spending for health will have a phased-in reduction of 16%. If Medicaid eligibility doesn’t change and treatment continues to improve patients’ health, more people with HIV care will be moved out of Medicaid and picked up by discretionary income programs, which are shrinking, he warned.
Rep. Henry Waxman (D-CA), one of the authors of the Ryan White CARE Act, also argued that the patchwork of health care coverage for the poor is not adequate. He reported strong congressional interest in exploring the costs and benefits of expanding Medicaid coverage to asymptomatic HIV-positive people. "We need to transition people from ADAP coverage to more comprehensive Medicaid coverage and ensure that states are negotiating the best possible prices for drugs," he told the conference attendees.
Indeed, ADAP has been overwhelmed by demand, despite a 71% increase in emergency appropriations this year that brought total federal spending to $285 million in 1997. As part of the Ryan White CARE Act, ADAP provides money for drugs to those patients who have no insurance and don’t qualify for Medicaid. Recent surveys indicate that the number of uninsured AIDS patients is increasing. Senak, for example, reported that in Los Angeles the number of uninsured AIDS patients rose from 11% in 1994 to 15% last year.
The inconsistency in how state ADAPs are funded and administered is a serious problem that needs an immediate response, Moran said. States contribute 30% of ADAP funds, but those contributions vary from $25,000 in West Virginia to $40 million in California. Indeed, California and New York’s contributions account for half the state expenditures, and 29 states provide no contributions. Although Arizona had a $500 million budget surplus this year, it chose to curtail its ADAP, which had a $1 million shortfall as result of increased demand for its services, he noted. (For a state-by-state ADAP profile, see chart inserted in this issue.)
A recent report for the National Alliance of State and Territorial AIDS Directors (NASTAD) found that 35 state ADAPs have had to limit program enrollment, restrict access to formulary medications, reduce drug coverage, or delay or suspend coverage of new drugs. Nine states anticipate serious budget shortfalls.
Another problem, of serious concern to clinicians, is that state ADAPs are inconsistent in stocking their drug formularies. Moran reported that least 11 states have adopted policies that are medically inconsistent with drug formularies. The NASTAD report also found that a dozen states restrict access to protease inhibitors and two still do not offer the drugs. Additionally, five states do not cover preventive therapy for opportunistic infections. (See insert on state ADAP programs.)
The clinical consequences of not providing adequate treatment to patients is so serious that Gordon Nary, executive director of the International Association of Physicians in AIDS Care, charged that if drug formularies aren’t brought up to meet treatment standards, "the people in charge of those formularies should be held up for malpractice for unnecessary and untimely death and suffering."
As part of the HIV Treatment Improvement Act, ADAPs would be required to establish a formulary for therapeutic drugs consistent with the new federal guidelines. The bill would also prohibit states from adopting policies medically inconsistent with those guidelines. Moreover, the bill proposes that states receiving $1 million or more in federal ADAP funding be required to provide at least a 20% match in state funds.
"As generous as we may be at the federal level, there comes a point here where we think states ought to be participating in this program and that is what we suggested in the appropriations report this year," Moran said.
As an example of how a city with the political will can help pick up those who fall through the ADAP cracks, Moran mentioned San Francisco, which offers free drugs to anyone who is not covered by Medicaid or the state’s ADAP. As a result, no one in the city who wants therapy goes without it, Moran said. The city’s policy has translated into clinical improvements. AIDS deaths in the city have decreased from seven per day in 1993 to one per day this year, he added.
"It goes to show that if we can provide the right structure and if you have the will to care, you can have enormous impact on this epidemic."
How much is enough?
As federal programs shrink and health resources for other diseases are cut back, funding for AIDS has received significant increases in recent years, begging the question whether its special treatment is justified. Although an out-and-out battle with lobbyists for other diseases has been avoided, some critics say the AIDS community is asking for too much, especially as the epidemic appears to be on a decline in this country. A recent article in The New York Times, for example, discussed how even AIDS service organizations are questioning the concept of "AIDS exceptionalism," which has been the ideological underpinning for the large network of specialized services for the AIDS community.
"AIDS funding has increased more than 50% in the last four years in discretionary spending," Hitt noted. "So it’s beginning to stand out as pretty unique when funding for other budgets are shrinking, and I don’t see it doing as well in the future."
Like Hitt, Sandy Thurman, the new director of the Office of National AIDS Policy, argues that AIDS is a unique disease in that it hits people in their most productive years. Using the analogy that rising tides lift all boats, Thurman said "HIV has called attention to the gaps in services for all people with serious illnesses and in many ways has been a model. The model being built in terms of delivery of car by funding AIDS as a specific disease has a lot to teach us about how we look at health care for the rest of people who have disease."
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