Recently, the Utah AIDS Drug Assistance Program announced that it was facing a $312,518.93 deficit — a number less than the $375,000 shortage it predicted in September, but a significant number still. To deal with shortfall without shutting the program down completely, said Stan Penfold, Executive Director of the Utah AIDS Foundation, the program has closed access to new clients until March and has raised its financial eligibility requirements from 250 percent of the federal poverty level to 400 percent. As Penfold explained it, a single person living at what the U.S. government considers 100 percent poverty makes around $12,000 per year. So, an individual living at 250 percent poverty has an annual income of $4,400 and a person at 400 percent an income of $2,700.
“At [250 percent poverty], people are working but they may not have very good insurance,” said Penfold. “If you go lower than that, it’s people who can’t work full time, who probably don’t have health benefits. The level of need of assistance increases really dramatically the lower you drop in that percent.”
“There were just a few people, and I think this is fortunate, who were getting 100 percent of their medication through the ADAP program, so there are very few people who face getting cut off altogether, and I think we’ve been able to find some options for them,” Penfold continued, noting that most of the 87 people being shut out have some combination of funding to help them meet their co-pays.
Toni Johnson, Executive Director of the People with AIDS Coalition of Utah, gave QSaltLake a comprehensive breakdown of how the cuts effect those 87 people. Of these, 50.52 percent have lost ADAP’s co-pay assistance — meaning that they have insurance, but ADAP was helping them pay for their HIV regimen. Nearly 15 percent were dropped from HIP, Utah’s High Risk Insurance Pool, and 35.5 percent have lost all financial help with their medications.
But Johnson noted that the cuts are affecting more people than just those shut out of ADAP. She noted that the University of Utah’s Infectious Diseases Clinic (more commonly known as Clinic 1A), is currently being swamped with demand for services. Given that the clinic receives grant funding from the Ryan White CARE Act, which funds programs like ADAP, it is not difficult to see why.
Johnson also pointed out that the cuts are forcing many who received ADAP money to go onto prescription assistance programs run by drug companies — programs that all too often do not cover the regimen of medications they are currently taking. This is forcing many to switch to medications, an action that most doctors discourage because doing so can cause the virus to mutate, thus increasing the chances that it will resist treatment altogether and causing symptoms to worsen as stores of the new regimen build up in the body.
“It’s really scary,” she said. “It’s just a nightmare.”
Even worse, Johnson said that ADAP has also cut off dental treatment and medications related to mental illness which many enrollees also use.
“For people that are mentally ill, you know, their meds help them adhere to their HIV meds,” she explained. “We’re likely to see an even bigger increase in infections because people aren’t taking their mental health meds.”
Additionally, the 87 people who have been cut from ADAP do not include another group of people with HIV/AIDS who are still in need of services — those infected in other states who have since moved to Utah. The federal Ryan White CARE Act that funds ADAP does not let states count such people when asking for money, meaning that Utah and several other states consistently receive less funding than they need to help.
“There are approximately 200 people with AIDS in Utah who have moved here from out of state,” said Johnson. “The federal government doesn’t allow Utah to add them to their formulary because they weren’t infected here. But they live here, and we’re taking care of them.”
In the month since the program closed its doors to new enrollees, Johnson said that 25 people living at 400 percent poverty have been denied access — a number that would have been much larger if the guidelines still included people living at 250 percent poverty.
The number of applicants waiting for services, said Penfold, is the biggest long-term challenge ADAP and Utah HIV/AIDS service providers are facing, especially since Utah receives little Ryan White funding when compared with more densely populated states. He anticipates that people will continue to apply for the program, particularly as people continue to lose their jobs in the recession.
Johnson is also feeling the recession’s sting, and cites it as the reason PWACU had to cancel its annual Living with AIDS Conference.
“The drug reps typically bring in speakers to do our conference and they couldn’t,” she said. “Their budgets have been cut too so I didn’t have any speakers.”
Nonetheless, she suspects she would have had to cancel the conference anyway in order to devote all of her time to the ADAP shortfall, which she and PWACU are trying to combat in a number of ways.
“I’ve been corresponding with many clients urging them to contact their case managers,” she said. “We have clients who don’t think they need case mangers, but they do. There are clients cut from programs due to their income and this is not something they can wade through by themselves.”
“We’ve been working really hard to identify who the people are who will be impacted and seeing if we can help them with some alternatives,” said Penfold, noting that UAF may be able to help some people who need drug assistance get on drug companies’ assistance programs, or at least help them find housing and food so they can devote their money to prescriptions.
“We eliminated all of our financial requirements for our food bank access and holiday program access,” he added. “We expect to see an increase in access there. What ends up happening to people is they have to make decisions like do I pay my co-pay or do I buy groceries?” He encouraged members of Utah’s gay, lesbian, bisexual and transgender community and their friends and allies to support the foundation’s holiday program as well as the Utah Food Bank, from which UAF receives food and toiletries.
Although the state is facing the possibility of cutting 700-800 billion dollars from its budget in 2010, Johnson said that she and other PWACU officers will advocate for ADAP during next year’s legislative session. She is also working hard to keep the issue in the media and is currently working with the _Salt Lake Tribune_ on a number of stories about individuals affected by the ADAP cuts.
She encouraged concerned Utahns to write letters to the editor about the cuts and to call their representatives and Senators when the legislative session opens.
“Utah is one of few states that contributes nothing to our ADAP program and they’re not going to unless the community demands it,” she said.
Penfold agreed. “It’s going to be really challenging to make a case to them for addl funding on a state level,” he said.
Likewise, Penfold encouraged people to involve themselves in the ongoing debate about health care reform.
“I know it feels overwhelming sometimes. but this is what the national health care debate is about,” he said. “I think this situation has put a spotlight on HIV-specific issues, but if you’re living with cancer, any kind of chronic illness that requires name brand medication, there are thousand and thousands of people in this same situation, many of them with no assistance programs available. This whole conversation about our health care system and prescription medication, all of this gets wrapped up into the conversation [we’re having about funding for people with HIV/AIDS].”