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“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. (Click here for a copy of the letter.)
“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.
Part of a National Crisis
New Jersey is not the only state trying desperately to save its AIDS drug assistance program. Enrollment in such programs, which are state run (and called an “ADAP” in most states, but referred to as “ADDP” in New Jersey) has grown steadily since they began.
As the economy slid, the programs have fallen into financial straits. As of July 8 there were 2,291 people sitting on wait lists to enroll in their states’ ADAP, essentially waiting in line to receive lifesaving drugs. (See: Economy Hurts Government Aid for H.I.V. Drugs / The New York Times.)
But few are paying attention to New Jersey’s program changes. In the AIDS community, NASTAD has played the role of leader in trying to quantify the ADAP crisis, releasing a weekly update tallying the number of states cutting people from their AIDS drug assistance rolls.
As of July 9, NASTAD had not even included the Garden State on its official list.
The truth, said Crutsinger-Perry, who helps construct the weekly data sheet, is that the ADAP problem has become so widespread her organization cannot track it all. She is sure there are other states that have implemented cost-cutting measures but have not yet made it onto her sheet.
“This is a part of the crisis that we haven’t even measured because we’re just finding out that it’s happening,” she said.
Susan Walsh, New Jersey’s deputy commissioner of public health services, assured that those cut from the program won’t disappear from her radar. Her staff, she said, is doing all that it can to find alternative funding for its ADDP, including trying to get a piece of $25 million in federal funds that President Obama recently announced he would issue to help eliminate drug assistance wait lists. (See: U.S. to Provide $25 Million to Help Buy AIDS Drugs / The New York Times.)
(It is not clear yet if New Jersey will be eligible for those funds, as it does not have a list).
She cautioned, though, “I think we are trying to be very careful not to give people hope that [any state funding] could be returned.”
Julie Turkewitz, a remarkably talented photographer, writer and multi-media artist, writes a blog for Housing Works in New York City, the largest community-based and minority-controlled AIDS service organization in the U.S. Now 20 years old, it saves lives, providing housing, medical and mental health care, meals, job training, drug treatment, HIV prevention education, and social support to more than 20,000 homeless and low-income New Yorkers with HIV and AIDS. To help pay for its services, spread the word of its mission, and employ graduates of its job training program, Housing Works operates a chain of upscale thrift shops, and is probably best known for its tiny Bookstore Café in Soho, just off Houston Street. The literary hub and concert venue draws incredible singers, authors and other artists, all seeking to help Housing Works fulfill its selfless mission.
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