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Funding for AIDS Drugs Faces Budget Uncertainty

The two houses of the General Assembly are differing on how much funding to provide for the N.C. AIDS Drug Assistance Program. At times, there’s been enough to provide medications to treat HIV for people earning as much as $45,000 per year. At other times, the program has been so underfunded that North Carolina had one of the longest waiting lists for AIDS medications in the country.

By Rose Hoban

Advocates for people with HIV and AIDS are busy calling legislators this week and working the hallways at the General Assembly in an attempt to ensure sufficient funding for the AIDS Drug Assistance Program.

The newly released budget being debated this week in the House of Representatives cuts $8 million in recurring funds for both this year and next. Those cuts are similar to those asked for by Gov. Pat McCrory in his budget.

Glen Cameron.

Glen Cameron.

The Senate budget approved in late May also cuts $8 million of recurring funds but allocates $6 million in one-time funding for the each of the coming two fiscal years.

“If I didn’t have [the AIDS Drug Assistance Program], I don’t know what I’d do,” said Glen Cameron, a 58-year-old AIDS patient who lives outside of Hickory. Cameron takes three drugs for HIV, a drug to relieve the nausea the drugs cause and one blood-pressure medication.

Cameron has been on ADAP for the past three years, since he lost his job and the health insurance that came with it. Even before he lost his job, he needed help paying the co-pays for his medications, which ran into the hundreds of dollars a month.

Cameron said the total cost of his medications is more than $4,000 a month.

“Buying the drugs on your own is not a possibility unless you’re a Lotto winner,” Cameron said.

Expanded eligibility

Lawmakers have said they feel comfortable cutting funds for ADAP because additional funds for the program are expected from the federal government.

“[Legislative staff] looked at the budget, and even with the $8 million cut, the funding in the ADAP account is $5 million more than it was for the current year,” said Rep. Marilyn Avila (R-Raleigh), a co-chair of the House Health and Human Services committee.

“And they’re expecting some increased funding from the Ryan White funding out of the federal government.”

Ryan White photo

Ryan White, a teenager with hemophilia who contracted HIV in the 1980s became the public face of the disease. Shortly after his death, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act shortly after his death in 1990. Photo: Wikimedia commons

The Ryan White Comprehensive AIDS Resources Emergency Act is a federal fund that helps provide doctor visits, transportation, nutrition services and case management for people with HIV and AIDS.

Lisa Hazirjian, head of the N.C. AIDS Action Network, disagrees with that assessment. She explained that the extra funds left in last year’s ADAP account were the result of foot-dragging by the state Department of Health and Human Services to expand eligibility for the program.

Several years ago, during the fiscal downturn, North Carolina had one of the longest waiting lists for ADAP in the country. That’s when Cameron came on the program.

“I was on the waiting list for a couple of months,” Cameron remembers. “I was scared for a while.”

He explained that if a patient stops taking anti-retroviral medications, the virus quickly develops resistance.

“The worst thing in the world is to miss a dose,” said Cameron, who said he’s assiduous about taking his medications. “You can’t go on and off medications like a light bulb.”

The funding shortfall was eventually resolved through reductions in eligibility.

“It created a two-tiered system, where really poor people got ADAP and everyone above 125 percent of the federal poverty level” – $14,360 for one person – “were wait-listed,” Hazirjian explained.

“They also reduced the formulary – the list of drugs available for people to use,” she said.

That gave North Carolina the most restrictive ADAP program in the country, and, even with reduced eligibility, the waiting list grew to more than 800 people in 2010.

Last summer, former-Gov. Bev Perdue’s administration agreed to re-expand eligibility to cover people with incomes under 300 percent of the federal poverty line ($34,470 for one person), with an expanded list of available medications – parameters more like those in other states.

But the newly expanded eligibility wasn’t implemented until January of this year, Hazirjian said, and that’s why there was an unspent $5 million left over in the program’s coffers.

Federal funding shaky

Federal dollars have taken a hit this year, said Carl Schmid, deputy executive director of the AIDS Institute, a public policy organization in Washington, D.C.

NASTAD sequestration map

Map courtesy of National Association of State and Territorial AIDS Directors

“ADAP, nationwide, will get cut $47 million this year – that’s 5 percent – due to sequestration,” Schmid said. “The president wants to increase ADAP spending by $10 million next year, but he’s constrained by sequestration too.”

He said the partisan gridlock in Congress also threatens next year’s spending.

Schmid said the U.S. House of Representatives budget cuts 18.6 percent from Health and Human Services funding for next year.

“If you apply that cut across the board in HHS, it’d be over $150 million cut additionally from ADAP, on top of reductions from sequestration,” he said.

Schmid said that level of cutting would also apply to the Ryan White CARE Act. Ryan White also provides money to support state ADAP programs.

“If you apply those House cuts, [Ryan White funding] could lose more than $400 million next year,” Schmid said. “It’s very precarious.”

According to research from the National Association of State and Territorial AIDS Directors, sequestration is likely to impact between 300 and 1,000 patients in North Carolina.

Hazirjian said she knows the federal funding stream is unsure, and so she wants to know where budget staff got their numbers.

Marjorie Donaldson, a budget analyst from DHHS, came to the N.C. AIDS Action Network’s annual meeting in April, but her only response to questions was, “I don’t have a direct answer for you.”

“The dollar figures I’m not able to give you anything specific that would be helpful or that would be correct going forward,” said Donaldson. “Its an ever-changing situation depending on the federal changes and the uncertainty we have there, and the fact that enrollment and the growth of enrollment is not a constant.”

“Since the beginning of April, we’ve been asking for projections from DHHS and have gotten nothing,” Hazirjian said. “We have periodically followed up on status of information requests and there’s no information forthcoming.”

“The HIV/AIDS community has been through a lot,” Hazirjian said, “so it’s understandable that people who depend on ADAP are wary.

“It’s a big leap of faith they’re asking us to make.”

Correction: The waiting list for ADAP grew to over 800 before changes to North Carolina’s program. The article originally said the number was 250 people, but that was actually the number of people on the waiting list when it was finally cleared in 2012.

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2 Comments

  1. Wis. Lawmakers Poised To OK Bill That Will Require Ultrasound Before Abortion | Health CareJun 12, 2013 at 3:05 pm

    […] North Carolina Health News: Funding For AIDS Drugs Faces Budget The two houses of the General Assembly are differing on how much funding to provide for the N.C. AIDS Drug Assistance Program. At times, there’s been enough to provide medications to treat HIV for people earning as much as $45,000 per year. At other times, the program has been so underfunded that North Carolina had one of the longest waiting lists for AIDS medications in the country (Hoban, 6/12). […]

  2. Jimmy Z WilliamsJul 25, 2013 at 5:35 pm

    Why is it AIDS meds here are billing over $5000 a month back to ADAP, when the same meds can be ordered from Canada for about half that? When big pharma is involved, somebody’s making a lot of money, at taxpayer expense.

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