Massive AIDS Program Cuts Leave Some ‘Helpless And Hopeless’

by Julie Turkewitz
originally published at

The letters began hitting mailboxes late last week. For 967 recipients in New Jersey, the contents hurt: Facing its smallest budget in five years, the state changed eligibility requirements for those covered by its AIDS Drug Distribution Program, which pays for thousands of dollars in medications for low-to-middle-income, underinsured people who are HIV-positive.

“It’s pretty drastic,” said Troy Thomas, 43, who asked that his last name be changed to protect his privacy.


HIV positive since the 1980s, the former businessman and North Jersey native earns about $35,000 a year as a counselor at the Hyacinth Foundation, an AIDS service organization with offices in Jersey City, Paterson and elsewhere in the state.

The message announcing he’d be knocked from ADDP arrived a week ago this Thursday.

“My first thought was: helpless and hopeless,” he said.

Caught in a Catch 22

In the past, New Jersey residents making 500 percent of the federal poverty level were eligible for ADDP assistance. On July 1, that number dropped to 300 percent.

Those caught in the mid-income bracket—people making between $32,490 and $51,150—will lose coverage.

As of Aug. 1, Thomas will have to shoulder about $4,000 in co-pays annually. If he loses his health insurance, which he obtained through Hyacinth, the full cost of his five drugs, which he estimated at about $12,000 a year, could go to him.

At Hyacinth, the largest AIDS service organization in the state, frantic calls about letters are rolling in. Between Friday and Monday, at least 20 individuals phoned, rattled: New Jersey would no longer pay for their drugs.

Thomas said some of these people are former clients—people who had been down and out financially but currently have paying jobs and stable situations. Now, they need help again.

While the neediest cases covered by New Jersey’s drug assistance program are safe—at least for the next year—the nearly 1,000 individuals cut from the program are mid-income individuals who have been able stay healthy and on the job because of state medication coverage. Without coverage for pricey medications, many of them find themselves caught in a Catch 22: too poor to pay for medication and too rich to qualify for help.

New Jersey is struggling “to salvage the program for low income people,” said Beth Crutsinger-Perry assistant director of care and treatment at the National Association of State and Territorial Directors (NASTAD). For mid-income folks, “the concern is, what’s going to happen to them?”

Mid-income But in Need

It’s sometimes difficult to explain why a mid-income individual would need state assistance for medication. But Hyacinth’s executive director, Kathy Ahearn-O’Brian, said it’s often as simple as examining the numbers: New Jersey’s cost of living consistently ranks among the highest in the nation. “So when you have $460 in co-pays each month, and bills and rent and food and health insurance to pay, a salary like $36,000 just doesn’t go that far.”

HIV is considered a manageable disease, she pointed out, but “it doesn’t mean it’s easy.” Drug side effects, doctors appointments and stress sometimes prevent people from obtaining or maintaining higher paying jobs that might make treatment payments less of a burden. As a result, many people hover just above the 300 percent federal poverty mark.

Thomas once made around $50,000 a year as the co-owner of a video store. But when the video industry changed, he couldn’t incur the losses and pay for medications. He wasn’t eligible for ADDP and became sick.

He eventually left the store, and found a lower paying job—so he could qualify for the drug assistance program.

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