State delays action on funding care

By James Thalman
Deseret News
Published: Tuesday, April 13, 2010

Janna Dove has had HIV since before it had a name and full-blown AIDS for 25 years.

"I was diagnosed in 1985, and they called it HTLV3," Dove said Tuesday. "I've been doing pretty well all these years, all things considered. But this non-decision by Utah that suddenly puts funding for medication up in the air that has absolutely has kept me alive and working and contributing taxes makes me sick, and they should be ashamed of themselves."

"They" and the "non-decision" Dove referred to is a postponement by the Legislature's top budget committee last week of an application for a federal grant that helps underwrite medical care for Utahns living with HIV and AIDS.

The money is part of the Ryan White Comprehensive AIDS Resources Emergency Act, also known as CARE, approved by Congress in 1990. It's a grant the committee has signed up for every year since 1992 without hesitation.

The state budget approved last month by the full Legislature includes $1.4 million in state funds for the program, an expenditure that is matched 3-to-1 by the Ryan White Fund. The program subsidizes the purchase of health coverage for AIDS patients with incomes below 250 percent of the federal poverty level, about $27,000 for a single-person household.

Utah Senate President Michael Waddoups, R-Taylorsville, along with Republican members of the state Executive Appropriations Committee, voted to approve state participation in dozens of other grants at an April 6 meeting. But they unexpectedly held up the AIDS grant application, agreeing they needed more background information and potential impact of funding between now and the next scheduled meeting in May.

Waddoups and others on the committee were quick to note that the postponement will not cause anyone who needs the grant funds to not receive them. However, they didn't say what will happen if they vote it down in May.

"I would just like Sen. Waddoups and those committee members to understand that by not doing this, they are sentencing people to death," said Dove, 54. "I'm not kidding. Without this, we can't possibly afford the prescriptions that are keeping us going."

Dr. David Sundwall, executive director of the state Department of Health, said he would find the funding to cover any interim gaps.

Sean Camp said he would have had to risk going without medication for at least two months had it not been for the Ryan White fund. Camp, who was diagnosed with HIV 14 years ago in Atlanta, moved to Logan two years ago and now works as a social work clinical assistant professor at Utah State University.

The Ryan White fund picked up the $1,500 co-pay for his medication that was required through extending his University of Georgia insurance through COBRA, which allows workers to keep their insurance coverage offered by a previous employer while switching to a different plan offered by their new employer.

Under most plans in Utah and across the country, if someone with insurance has a lapse in coverage longer than a month for any reason, they can be denied coverage for pre-existing conditions or often will have to wait six months before their new plan's benefits kick in.

"We had no idea that we wouldn't have coverage for those couple months until we got here," Camp said prior to teaching a Tuesday evening class at the USU campus in Brigham City.

Between the time he left Georgia and moved to Utah, the USU plan changed the qualifications for HIV/AIDS medications.

"And the cost of coverage was going through the roof at the same time, so it was a shock," Camp said, noting that without the bridge of the Ryan White fund that allowed him to maintain his coverage, he would have simply gone without medications.

"No matter how hard you work out or how well you stick to eating right, there is a fight going on inside that can change very quickly," he said.

"Anything that opens up more risk is something you don't even want to think about. It worked out really well for me, and it got us through a bad spot," Camp said. "It's not like the state is committing to covering everyone long term."

It's made all the difference to Dove, who said through the fund and other supports she now has half the normal T-cells — the cells in the body that are destroyed by HIV but are necessary to fight any opportunistic bug like the common cold — and went from an 800,000 viral count to below 50, or medically undetectable.

"If this were about cancer or diabetes, this wouldn't be questioned at all," Dove said. "Even after all these years and all we've learned, there is still a huge stigma attached to AIDS. I was given two years to live when I was diagnosed with full-blown AIDS. I've lived 25, and I've been sick a lot, but I have grandkids and family and friends who love me.

"I've been able to stay at work and pay taxes. I help people who have had drug problems. I've made the best of the 22 years, and I'm just trying to do what everybody does — keep going as long as possible," she said.