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Uncertainty Abounds For Program 'Critical' To HIV, AIDS Care

(Rachel Lippmann/St. Louis Public Radio)

As St. Louis Public Radio has reported before, the region is a tough place for sexual health.

The one bright spot, if you can call it that, is in HIV and AIDS rates. Though there are still new cases every year, the number has held steady around 300 for the last decade. Drugs known as anti-retrovirals play a big role in that statistic – but so do support services funded by a federal program known as the Ryan White CARE Act.

The care of HIV and AIDS patients may look completely different once President Obama’s health care overhaul is fully implemented in 2014. And that has providers here nervously watching what lawmakers in Jefferson City and Washington do to programs they say help keep patients alive.

One piece of paper

Steve Houldsworth climbs the steps to the second floor of an apartment building in south city with one mission in mind - delivering a crucial piece of paper to his client, Heath, a Navy veteran who was diagnosed with AIDS in 2002. (We're using Heath's first name only because of his health status).

Heath and Houldsworth, a case worker with St. Louis Effort for AIDS, have spent more than a month searching for a document that verifies Heath's small military pension. They've finally found it.

"So I just need a signature there, and this says that your pension is your only income at this point," Houldsworth directs Heath.

The piece of paper will allow Heath to prove his eligibility for government assistance like food stamps - which he lost while trying to navigate government bureaucracy. He was able to stay on his medicine - crucial for AIDS patients - but did have to reschedule a doctor's appointment.

Houldsworth's assistance, he says, was invaluable.

"We were getting the run-around by calling the proper numbers that we were told to call," Heath says. "We were sent to one organization, the ombudsman, nobody knew what we were talking about. I couldn’t believe that."

He says the entire ordeal nearly sent him back into a paralyzing depression.

Breaking barriers

For Nancy Kelley, the advocacy director at Effort for AIDS, Heath’s story proves why case workers like Houldsworth are essential, especially since the Affordable Care Act will require people to get health insurance.

"Care might be available, but if someone doesn’t have transportation, or they’re struggling with a housing issue, or they don’t know how to access the doctor, all of those things can be barriers," she explains.

Her boss, EFA executive director Cheryl Oliver, says all of the support that Ryan White provides has allowed the nation to reach a critical point in the fight against HIV and AIDS.

"We are actually looking at the end of a disease," she says. "Unless we go backwards. And then we’re looking at the re-emergence of an epidemic."

"A Lot of Political Uncertainty."

Kelley and Oliver agree that Congress is unlikely to make any major changes to the way Ryan White dollars are allocated until after everyone has a chance to see where its programs fit in with the Affordable Care Act. But they see a lot of ways to go backwards.

Congress could reduce the amount of money allocated for things like caseworkers and housing assistance that help HIV and AIDS patients lead more stable lives.

"We are actually looking at the end of a disease. Unless we go backward. And then we're looking at the re-emergence of an epidemic." - Cheryl Oliver

Or it could cut back on the dollars for medical expenses like insurance premiums, which could be a critical problem in Missouri.

The state has one of the lowest cut-offs for Medicaid eligibility in the country - about $2,100 for a single person. Nancy Kelley says she’s not optimistic state lawmakers will change it.

But the tax subsidies provided by the Affordable Care Act don't kick in until someone makes 100 percent of the poverty line - leaving a gap that puts now-mandatory health insurance out of reach for many EFA clients.

"If I make 95 percent of the poverty level, I do not qualify for a tax subsidy, nor do I qualify for Medicaid. I am expected to buy health coverage, which may be $500 a month full fare, whereas if I’m at 100 percent, I’m going to qualify for a tax subsidy, that expense monthly may be $25," Kelley explains.

The optimistic side believes policymakers will come to understand that HIV and AIDS patients need all types of support, and provide the appropriate balance of funding in any new version of Ryan White.

"But there’s always a concern when it comes to a pie that needs to be divided in a certain limited amount of ways that funding will shift away from what is a true life-saving priority," she says.

And with sequestration, that pie will be getting smaller. EFA has been told to expect a cut of at least 5 percent. The agency will learn what that will look like later this month.

Follow Rachel Lippmann on Twitter: @rlippmann

Rachel is the justice correspondent at St. Louis Public Radio.