Rationing feared as many flock to HIV drug program

A flood of HIV patients desperate for life-prolonging drugs is overwhelming the state assistance program of last resort, prompting public health officials yesterday to seek an emergency infusion of cash to avert rationing medications.

Enrollment in the HIV Drug Assistance Program has soared by more than 70 percent in the past year, with spending growing from about $1 million a month to more than $1.4 million as of March. If the increases continue at the same pace, public health authorities warned this week, the drug plan will face a $6.6 million deficit for the budget year that starts July 1.

Reductions in the state’s Medicaid benefits are probably one reason for the unprecedented surge in demand, state health authorities and AIDS specialists said. Last year the Legislature tightened the rules for HIV patients to qualify for medical coverage under the MassHealth plan and, as a result, patients have been shifting off that program and onto the HIV Drug Assistance Program.

The state’s commissioner of public health, Christine C. Ferguson, sent a letter to Beacon Hill lawmakers yesterday seeking $4.2 million to sustain the drug plan. Writing to Senator Richard T. Moore, chairman of the Joint Committee on Health Care, Ferguson said that if the drug plan’s deficit isn’t eliminated through additional funding and other steps, it could compel "radical restrictions, including wait lists and reduced drug benefits. These options risk serious health outcomes, including death, and will have an effect on the overall transmission rates of HIV in the Commonwealth." Brian Cournoyer, an aide to Moore, said that the Uxbridge Democrat intended to file an amendment to the Senate budget for a $4 million boost in funding.

The latest AIDS drugs have changed the course of the illness from almost certain death into a chronic, treatable disease, and doctors said that delaying their use would result in infections progressing much faster in patients newly diagnosed with HIV, which in turn could cause expensive hospital stays and premature deaths.

"There are people in places like North Carolina and West Virginia who are on wait lists for drugs, and they die while waiting," said Rebecca Haag, executive director of AIDS Action Committee of Massachusetts, New England's largest private provider of HIV services. "Is that we want in Massachusetts?"

The drug plan began in 1987 and is designed to provide coverage to patients who don't have insurance or whose health care policies do not provide enough coverage. While states run the program, most of the money historically has come from the federal government. Massachusetts is receiving $15 million this year, an amount expected to grow marginally in the next budget year.

To become eligible, patients must meet a series of requirements that includes income limits. Massachusetts has one of the more generous initiatives, allowing patients to earn as much as $50,000 a year and still receive some coverage.

For some patients, the program covers the full cost of medications, a bill that can easily exceed $15,000 a year in the era of drug cocktails that combine three or more expensive drugs. For other patients, the state pays health insurance premiums or copayments on drugs, an effort pioneered in Massachusetts.

"At some point, we realized that if we were paying $15,000 or more for people just for their medications, it was cheaper to buy them their health insurance and help them with their copay," said John Auerbach, executive director of the Boston Public Health Commission. "It's good financially, and it's also often good for the clients because the clients can take advantage of a full range of health services."

Enrollment, as well as the number of patients actually getting drugs or subsidies through the program, had remained fairly steady in recent years. But enrollment started climbing last spring, and higher spending followed, beginning in the fall and accelerating early this year.

Most telling has been a 28 percent increase from August 2003 to March of this year in the number of patients receiving the full drug benefit, which is by far the costliest component of the plan.

"We are very concerned about this sudden and dramatic increase in utilization," said Julie Marston, executive director of Community Research Initiative of New England, the private agency that administers the drug plan for the state. "The reason that we're so worried about this is because we've already exhausted all ways of maximizing efficiency in this program."

The timing of enrollment increases in the drug plan dovetailed with restrictions in a MassHealth program for needy HIV patients. Last year, for instance, the Legislature cut the income cap for eligibility from $18,620 for an individual to about $13,000.

State figures show that the number of patients enrolled in the MassHealth HIV program dropped from 625 last August to 490 in April.

"Obviously, the change in income eligibility for MassHealth is one possible explanation for the increases in the HIV Drug Assistance Program," said Roseanne Pawelec, spokeswoman for the Department of Public Health.

State health authorities and AIDS specialists said it's impossible to quantify how much of the jump in drug plan costs can be attributed to the MassHealth changes and how much to other causes, including rising drug prices, increasing numbers of uninsured patients, and the need to switch longtime patients to more expensive drugs as cheaper medications fail to keep their infections in check. Nearly 15,000 adults and children in Massachusetts are infected with the AIDS virus.

The acting director of the state HIV/AIDS Bureau, Kevin Cranston, said this week that he expects the drug plan to remain solvent through the current budget year, which ends June 30. But that will be accomplished in part by what Pawelec described as a "budget maneuver" -- because the federal dollars are appropriated on a different budget cycle, the state can get an advance to cover any deficits that might happen before the end of June.

State projections show that enrollment in the plan will increase from about 3,200 now to 4,000 by the end of the next budget year, with the number of patients receiving the full-pay benefit growing from about 800 now to 1,000. The bottom line result: a deficit of $6.6 million, with some authorities, including Auerbach, fearing it could reach as high as $12 million.

"We expect that the environment responsible for the last several months of increases will continue to exist," Cranston said.

Controlling a deficit without additional funding would require "gruesome options," said Dr. Calvin Cohen, research director for Community Research Initiative. Among the possible controls: establishing a waiting list, tightening restrictions on who is eligible for the plan, or limiting the drugs that are available.

Tonia Hines learned last year that she was losing her MassHealth benefits.

"They said I made too much money so they cut me off," said Hines, a single mother of two who makes about $26,000 a year as a counselor at Dimock Community Health Center in Roxbury.

So, she turned to the HIV Drug Assistance Plan. Hines, 37, isn't taking medications now to control her HIV infection, but the plan is paying her premiums for private health insurance. The prospect of changes in the program, she said, are "very scary."

"If people have to go on waiting lists and they have to cut the program, the epidemic is going to get even worse," said Hines, who lives in Jamaica Plain. "It's hard enough living with the illness let alone not to have the medicines."

Stephen Smith can be reached at stsmith@globe.com.