Cuts in AIDS treatment subsidy could imperil nearly 100 Utahns

Many say they will risk illness and death because they can't afford to pay.
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For the past 20 years, Michael Berry has battled AIDS. Since his diagnosis, he has survived anal cancer, a nervous breakdown and a suicide attempt.

To keep his AIDS in check, the financial services worker has taken dozens of costly medications over the years, depending on two for the past two years. He's been able to get the expensive drugs only because a federal government assistance program has paid for them.

But by the end of October, Berry will be on his own to come up with $4,260 a month to pay for the medications and doctor's visits that keep him not only healthy, but alive.

Facing a $375,000 deficit, Utah's AIDS Drug Assistance Program and the Utah Department of Health have tightened eligibility requirements. That has translated into 99 Utahns no longer receiving free medications.

"I want to keep fighting, I don't want to die," Berry said. "But what the hell do you do when they come out of nowhere and tell you the money is gone?"

The fund has been struggling for the past several years as the level of federal funding has stayed at about $1.4 million while the number of applicants and costs for drugs and insurance steadily have increased. Each year, some services have been cut.

This year, though, it hit a crisis point.

For the first time, the program was forced to kick out people to cut costs. That means many HIV-positive Utahns, most of whom are uninsurable because of the disease, face overwhelmingly difficult choices.

A second Michael, who asked to use only his first name because he fears discrimination, contracted HIV from a blood transfusion in the late 1980s.

"I'm going to have to stop taking my meds because for me, it's either eat or take the meds," Michael said.

The Salt Lake City man has been on medications since the early 1990s, but people in his life do not know he is HIV-positive.

"I don't mean to be a drama king here, but I'll likely be dead in a couple of years," Michael said. "The virus takes hold and that's it. I'm scared."

The situation is infuriating for Toni Johnson, executive director of the People with AIDS Coalition of Utah.

She lobbied the Utah State Legislature this year for a state infusion of $275,000 but was rejected. Administrators from the Utah Department of Health told several legislators they didn't need more money -- because their projections didn't foresee the 45 percent increase in applicants that came later in the year and a $100,000 drop in federal funding, said Michael Lowe, ADAP administrator for the health department.

"It's very difficult," Lowe said. "This is a situation that no program wants to be in."

However, he said the department won't be asking for state funds next year to plug the holes because "it's not in the governor's budget."

Johnson believes the department "sabotaged" her efforts.

"It made our [request] completely irrelevant, and now we've got people who are facing this very scary situation of not being able to pay for their medications," Johnson said.

She'll be back on the hill asking for state money to supplement the federal funds in the spring. "I will have indisputable proof next year that our [request] is necessary and relevant."

She knows first-hand the importance of the medications. She was able to go 12 ½ years without HIV drugs. Then, all at once, she contracted pneumonia, a systemic staph infection and had a devastatingly low count of T-cells, which help the body fight off infections.

"If the program had been closed, like it is now, I'd be dead," Johnson said.

A handful of people aren't facing such dire situations.

Jared Neff, who has been HIV-positive since 2002 and just started taking medications in March, has insurance through his job at the University of Utah Hospital. The government program was paying the $286 monthly co-payment for the medication Atripla.

Now, he has to come up with that on his own. He says he's frustrated, as an employed adult working to contribute, while those who may not be working still can qualify for assistance.

"People who were homeless and not working at all are actually getting the meds for free, that doesn't make sense," he said. "I just feel like I'm screwed."

However, for patients in his situation, Bristol-Meyers Squibb, which manufactures Atripla, will pay $200 of his copayment each month for a year. The pharmaceutical company started the program for insured patients after the economy started getting shaky.

"We know in this economic climate, out-of-pocket costs are prohibitive," said Cristi Barnett, associate director of business communications for Bristol-Meyers Squibb. "We are dedicated to helping assure patient access to HIV treatment."

The company, and several others, also have a need-based assistance program to help uninsured patients.

But programs such as that may not help uninsured patients like Berry, who makes $38,000 a year -- usually too much to qualify for help, but not nearly enough to cover $4,260 a month for medications plus doctor's visits and other medical treatments.

"We may be sick, but we still want to live," he said. "I have no idea what I'm going to do."

HIV/AIDS in Utah

About 2,290 Utahns have AIDS or HIV. About 600 use the federal Ryan White program to pay for medications, health insurance premiums and mental health services.