Newsday - November 26, 2003
Laurie Garrett, Staff Correspondent

Such openings occur only when people in the program manage to get health insurance - or die. These days, neither is a common occurrence.

West Virginia is one of a growing number of states with waiting lists for access to the life-saving drugs, which can exceed $30,000 a year.

The list was started here April 1, when the state cited a budget shortfall so severe that funds weren't available to augment federal support for HIV drugs. That's when Jay Adams, the state's HIV care coordinator, knew he had to resort to a waiting list.

"I take this waiting list very personally," Adams says, his anger apparent. "I have no intention of letting it become permanent."

At a time when the Bush administration is asking Congress to allocate $15 billion to help finance AIDS treatment for people in hard-hit countries overseas, the U.S. safety net for HIV care appears to be fraying. An estimated 700 Americans are on waiting lists for treatment provided under the AIDS Drug Assistance Programs, known as ADAP, which get medication to patients who don't qualify under customary health care plans or Medicaid. According to the National Alliance of State and Territorial AIDS Directors, 120,000 patients were on the ADAP rolls last year.

A number of factors are threatening the supply of medications to needy HIV patients: Patients on the ADAP rolls are living longer; the number of infected HIV patients is growing; budget deficits are strapping states; and ADAP's guidelines restrict eligibility.

The ADAP program "is supposed to be the safety net of last resort," said Ryan Clary, who works across the continent at San Francisco-based Project Inform, an AIDS service group. Although California's program has not resorted to a waiting list, anticipated budget cuts have aroused concern about the potential impact on the program, which has 27,000 on the rolls.

West Virginia is one of 10 states with waiting lists, unable to afford treatment to new HIV patients who can't pay for their own care. Another five states have imposed a limit on the number of patients who can enroll, meaning that soon they, too, will have waiting lists.

So far, seven people on the waiting lists in two states - two in West Virginia and five in Kentucky - have died before getting a single pill under the program - though it appears the lives of the West Virginians may not have been extended because they didn't come forward until their untreated AIDS had reached an advanced stage.

Russell Lilley is on Adams' waiting list. Lilley, 42, returned home to Moundsville three months ago - only to learn that he was entering a state that didn't offer the same access to medications he had back in Texas. He left the state when his long-time lover died.

"I want to live, to be productive," Lilley said. But he said now he doesn't know "if I'm going to get my medicines, from month to month."

"I don't want to take somebody else's life over there" he said, alluding to Africa. But it "doesn't seem fair," he went on, for Americans to be dying for lack of medicines that the government plans to buy for people overseas.

Adams estimates there are another 25 HIV-positive West Virginians who haven't even made it on to the waiting list. One is a 51-year-old man named David, diagnosed with HIV in 1987 and who, since 1991, had been taking his HIV medications regularly, keeping the virus in his bloodstream below the level that could launch full-blown AIDS.

David, who asked that his real name be withheld so that his infection and homosexuality remain private, owned a restaurant. He had health insurance, and access to medications was routine.

But he was left reeling when his world - personal, financial and medical - was wracked by a series of forceful blows.

In February 2002, he lost the restaurant - by all accounts, a successful one. He filed for bankruptcy. Lost his income, his home and his savings. Then he suffered a stroke that left his right eye blind. A collision on Interstate 70 with a tractor-trailer sent him - and his mother - into the intensive care unit, and left him with a painful walk.

His best friend died, a death attributed to a combination of alcoholism and HIV infection. And David now contends not only with HIV, but also with high blood pressure and kidney disease.

When his insurance - and access to medication - disappeared, David was told to get on the state's waiting list. But, exhausted by so many other blows, he couldn't even bring himself to fill out the necessary forms.

In the back of a small coffee shop that he now runs, David rises with difficulty to greet a visitor. He wipes his hands across his apron, sets aside his accounting ledger, then shakes hands. He coughs and complains of pain deep in his lungs.

"I just feel lousy today," he said. Nevertheless, David is eager to share his story, knowing that what is happening to him is not unique.

"God must believe in me because he sure has thrown a lot at me," he said, noting that he is a God-fearing Christian who prays ardently before every doctor visit or hospital procedure.

David says the success of his restaurant prompted a rent increase that he couldn't meet: "I held on as long as I could, but I went bankrupt."

And for the first time in 12 years, David's medication supply is intermittent. An underground network of HIV patients and friends is keeping him alive, scrounging for drugs from doctors, who get free samples from pharmaceutical companies, as well as from other patients who relinquish one medication supply when they are prescribed another.

It's an underground of necessity, Adams says. "You do what you have to do in this time when there's no other option except taking people off their drugs," he said.

Just a year ago, David says, doctors couldn't find any HIV in his blood samples. But today he has full-blown AIDS. His options at this point, he says, include ending his life.

"Suicide has been a very real option to me in the last year," he said, the determination in his voice indicating he was not asking for pity, just for an end to it all. "I always keep suicide as an option. It looks more attractive to me some days."

Adams told him a visit to the psychiatrist might be in order. But Adams knows that as long as David is broke, and has no insurance, such intervention is unlikely.

ADAP was set up under the 1990 Ryan White CARE Act for people like David. The federal program provides health care for those with HIV disease who are low-income and have little or no insurance. But a number of factors are threatening the supply of medications to needy HIV patients.

When the law was passed, only a handful of marginally effective drugs were available for HIV care, and the size of America's needy population was small. But the powerful anti-HIV cocktails available since 1996 are keeping people alive, so patients are remaining on the ADAP rolls for decades.

The numbers of Americans newly infected with HIV continue to grow; the Centers for Disease Control and Prevention estimates that 800,000 to 900,000 people are living with HIV in this country, with 40,000 new infections every year. In West Virginia, Adams says seven or eight new patients enter the program's pipeline each month; there are now 335 people receiving medications and 23 on his waiting list.

Budget deficits have rendered many states unable to augment the federal ADAP funding, which hasn't kept pace with the increase in patients. Federal funding for 2004 is budgeted at $793 million, up from $714 million this year, according to the territorial directors alliance, which estimates the need at $928 million.

In states where HIV medications are available under Medicaid, a patient can qualify only if the infection has progressed to full-blown AIDS. The ADAP program provides the only access to medications for the poor whose HIV infections have not reached the AIDS stage.

Though the ADAP program is federally supported, each state can set its own standards for admission to the program, what drugs it provides, and what stages of HIV infection it chooses to address.

In New York, the program's funding has not been threatened. Single people can qualify if they earn less than $44,000 a year and have less than $25,000 in liquid assets. And the state offers the most generous list of medications of any ADAP in the nation.

But in some states, especially in the South, new HIV patients find themselves stranded. Lisa Daniel runs ADAP programs for Kentucky, where, she says, 130 people are on a waiting list that each month finds an average of 26 new applicants. So far this year, five people on the waiting list have died. All were receiving medicines that Daniels managed to scrounge up, but she said "it's hard to keep them on the program," taking drugs regularly. Kentucky gets 98 percent of its ADAP money from the federal government.

In Alabama, 141 people are on a waiting list, program director Jane Cheeks says. The funding is so dire that 100 people now receiving medications would have to be removed before a single person on the waiting list could get treatment. Even worse, Cheeks said by April she has to dump 41 people now receiving drugs. A recent state proposition would have allowed a tax to cover, among other things, AIDS care. But it was voted down.

"It's just a bad situation that's going to get worse," she said.

In North Carolina, a hundred people are on the ADAP waiting list. Colorado has 130; Indiana, 47; Nebraska, 30; Oregon, 24; South Dakota, 49; Montana, 1.

Though most of these waiting lists are less than a year old, Alabama's dates back to the early 1990s. In fact, Dr. Michael Saag, who runs HIV/AIDS care at the University of Alabama in Birmingham, says he can't remember when there wasn't a waiting list in his state.

Saag and his counterparts at six other federally funded AIDS clinics make sure that every needy person gets anti-HIV drugs regardless of whether they are insured or on the ADAP waiting list. They do so by obtaining drugs from pharmaceutical manufacturers, which dispense anti-HIV drugs free, patient by patient, under compassionate use programs.

"You have to document the patient's financial status, fill out multiple forms," Saag said. "Each drug company has their own forms, their own requirements. You must prove the patient is genuinely indigent."

The result is that his staff of caseworkers spends 90 percent of its time filling out forms - yet, nobody is dying in Alabama for lack of medicine, Saag says, so the ADAP crisis seems invisible. But he said the recent defeat of a tax-raise initiative, in a state that doesn't allow itself to run on a deficit, means the governor "has to come up with $540 million in cuts immediately."

"Either those cuts will come in ADAP money, or in tuberculosis or sexually transmitted diseases programs," Saag says.

And pharmaceutical companies aren't sure what they would do if more states were to lean harder on them for handouts.

"It's a big question we seem to be asking ourselves every year," said Mary Anne Rhyne, spokeswoman for GlaxoSmithKline. "Just this year we offered a $20-million package to ADAP [nationally] to help. We estimate we will pay out greater than $90 million to state ADAPs in rebates and drug donations."

If Congress does not increase funding for ADAP, Rhyne said, drug companies may feel they are reaching their limits. Their concern is focused on California, which has the second-largest ADAP program, enrolling 27,000. But observers in the state fear the program's budget will face cuts in 2004, as California confronts a deficit of $17 billion. Lowering the income levels for eligibility would send 2,000 into the ranks of those who depend on pharmaceutical companies' compassionate-use programs.

"Nobody wants to see people die without access to drugs that should be available," Rhyne said. "How do we address that in a long-term way? I don't know what the solution is."

In West Virginia, Adams says the two patients on the waiting list who died were in an advanced stage of AIDS by the time they applied. They were so concerned about confidentiality, he said, that their families aren't aware that they suffered from AIDS.

His quest to prevent such tragedies comes from a long experience on the frontlines: Adams, a native of Wheeling, said since the 1980s he has sat at the deathbeds of 264 West Virginians who succumbed to the disease. He described his role as a counselor of sorts, helping the dying come to peace with themselves and their loved ones. "Ninety-five percent of the time I was holding them when they died," he recalled. "I used to go to two funerals a day. All HIV."

When anti-HIV drug cocktails came along in the mid-'90s, Adams took the state job of coordinating HIV care. There was nobody on the state payroll in charge of providing HIV medication, he said, so he added that duty to his portfolio.

Up on an Appalachian mountain top about 30 minutes from Moundsville, Paul, another HIV-positive gay man who asked that his identity be protected, doesn't know much about the ADAP program and funding complexities. Paul, 40, a short order cook who has never had a job that offered health insurance, lives in a trailer festooned with family portraits and pictures of the Virgin Mary and Jesus. In January, he suffered a bacterial infection that caused his lungs to collapse. He landed in the intensive care unit at a local hospital, where his HIV was diagnosed.

Paul says he was so angry that he wanted to grab a gun and head over to Columbus, Ohio, to kill the man who gave him the virus.

He lost weight and grew weak - even as he tried to hide his condition from his 12 siblings and extended family because HIV and homosexuality wouldn't be welcome news. He managed to get on the waiting list and, with Adams' help, has gotten access to nine HIV drugs. His weight is back up and he's feeling better.

But Paul is caught in a Catch-22. Because there is no more money for ADAP in West Virginia, he can only move into the program if a current participant dies. Alternatively, he could get access to medicines if he can qualify for Medicaid.

But Paul receives Social Security disability payments of $875 a month, which puts him over West Virginia's Medicaid qualifying limit of $550 a month. So Paul, whose only assets are an old TV, a trailer and a car, has to "spend down" on medical care at a rate of $325 a month, getting him down to that $550 a month Medicaid limit, the poverty level recognized by West Virginia. Bad as that may be, in Alabama Paul would have to be even more impoverished to qualify for Medicaid, or would be placed on a longer waiting list - at No. 161.

A taciturn fellow, Paul just shakes his head, says he can't understand it all, "but it's wrong. It's just wrong."

State of the Pandemic

A report issued by the United Nations AIDS monitoring group says that efforts to control the spread of the epidemic are failing. According to the report, more people are dying from the disease than ever before.

NUMBERS LIVING WITH HIV/AIDS

Estimated total Potenital ragne of cases*

TOTAL 40 million 34-46 million

Adults 37 million 31-43 million

Children younger than 15 2.5 million 2.1-2.9 million

NEWLY INFECTED WITH HIV IN 2003

TOTAL 5 million 4.2-5.8 million

Adults 4.2 million 3.6-4.8 million

Children 700,000 590,000-810,000

AIDS DEATHS IN 2003

TOTAL 3 million 2.5-3.5 million

Adults 2.5 million 2.1-2.9 million

Children 500,000 420,000-580,000

*Range of cases defiens boundaries within which the true number of caes lies.

IN THE NATION

A centers for Disease Control and Prevention study released yesterday indicates that there are now more Americans living with HIV at any time sicne the epidemic began 20 years ago. Highlights from the study:

Estimate of total cases 850,000-950,000

Number unaware of infection 180,000-280,000

New cases annually 40,000

NOTE: Data compiled form 1999 to 2002

IN THE STATE

Total AIDS cases through 2001 149,341

Total new cases, 2001 7,476

ON THE ISLAND

Total AIDS cases through 2001 7,002

Total new cases, 2001 350

IN THE CITY

Total AIDS cases through 2001 126,237

Total new cases, 2001 6,152

SOURCES: Centers for Disease Control and Prevention, UNAIDS, State Health Facts, New York City Department of Health
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