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Federal health law doesn’t deliver HIV care as promised, advocates say

A bartender at one of Austin’s gay nightclubs recently decided to donate all tips he and his fellow drink pourers received one night to a local group dedicated to helping people with HIV and AIDS.

Ripped, shirtless and offering plenty of flirty smiles, 26-year-old Bradley Franklin, who is HIV positive, wanted to give something back to AIDS Services of Austin, the group that shepherded him through the treacherous health insurance landscape that has emerged since the passage of the Affordable Care Act, also known as Obamacare.

For Franklin and thousands of other people with HIV, the federal Affordable Care Act brought a lot of hope. There was a provision in the 2010 law that prohibited insurance companies from denying coverage due to pre-existing conditions. And the part of the law that allowed states to expand the universe of people who would be eligible for Medicaid offered another reason for those with HIV and AIDS to celebrate.

But the law didn’t live up to expectations, especially in Texas.

Franklin learned that the plans on the federally created health insurance exchange, the Internet-based marketplace where consumers can compare and buy health plans, didn’t offer affordable ways to buy the life-saving medications he needs or allow him to see a physician with expertise in HIV and AIDS, he said.

David Wright, one of the first physicians in Central Texas to treat AIDS patients, said the Affordable Care Act works well for people without chronic diseases. But for those with HIV and AIDS, not so much, he said.

Wright said that the people the law would affect most – doctors and patients – were cut out of the planning process before the historic rollout.

If they had been involved, some of the problems that exist today could have been avoided, he said.

One of the most significant issues is that many HIV patients who bought plans on the exchange can’t afford medications, which often run as high as $2,000 a month, he said. In most exchange plans, policyholders must pay a percentage of the cost of their drugs, not an affordable co-pay. Also, expensive and frequent lab tests for HIV and AIDS patients can run upwards of $1,700 a test.

“For a lot of patients, it actually created more barriers,” Wright said. “It’s kind of overwhelming.”

In the days before the enactment of the Affordable Care Act, only about 30 percent to 40 percent of HIV patients in Central Texas had private insurance. The percentage remains the same today, Wright said.

Relying on existing public care

Nearly two-thirds of HIV-positive people in Central Texas continue to get medication from public programs, such as the David Powell Clinic that provides primary medical care to HIV-positive residents. The clinic receives federal funding through Ryan White CARE Act grants that pay for about 6,000 patients who cannot get coverage through Medicare, Medicaid or private insurance, according to Wright and the clinic.

Peter Pitts, a former U.S. Food and Drug Administration official and current president of the Center for Medicine in the Public Interest, echoed Wright’s assessment. He said before the law’s rollout, the standard talking point of proponents was that people shouldn’t have to choose between food or medicine.

“Unfortunately not only did the ACA not solve that problem, it made it worse,” Pitts said. “That’s shameful.”

Carl Schmid, the deputy executive director at the AIDS Institute, blamed insurance companies that offer plans that he said discriminate against HIV and AIDS patients and require huge out-of-pocket payments for their expensive medications.

“They are designing their benefits in such a way to dissuade people with HIV and other conditions from choosing their plans,” he said, “and that’s against the law.”

Schmid’s national public policy group filed a complaint with the Office of Civil Rights in the U.S. Department of Health and Human Services. The case is pending.

Clare Krusing, director of communications at America’s Health Insurance Plans, said critics’ assessments of insurers are unfair.

“Consumers have choices when it comes to their coverage,” Krusing said from her Washington, D.C.-based trade association that represents the health insurance industry.

There are many coverage options that have lower deductibles and different types of cost savings, she said.

Local and national-level advocates — including Schmid and Pitts — have called for more transparency in marketplace plans.

No Medicaid expansion

Poor HIV patients in states like Texas, which opted not to expand Medicaid under the Affordable Care Act, are left with yet fewer treatment options, advocates say.

“That’s where (Medicaid expansion) could really help people living with HIV,” Schmid said.

Medicaid, which provides health care to the very poor, is the largest payer of HIV care in the country, and it is a critical source of antiretroviral therapy for people infected with HIV.

According to the Kaiser Family Foundation, a nonprofit and nonpartisan health policy research organization, more than 60 percent of non-elderly adults being treated for HIV had incomes at or below 138 percent of the federal poverty line — $11,490 for a single person in 2013 — the foundation reported. (The Affordable Care Act allowed states to decide if they want to expand Medicaid to people earning up to 138 percent of the poverty line.)

But for all the complaints about the Affordable Care Act and the HIV community, some people with the disease have found plans that work for them and offer medication at reasonable prices.

Cy Daigle, a 24-year-old HIV-positive makeup specialist in Austin, said he found a plan with Blue Cross and Blue Shield of Texas that he purchased with federal subsidies. He pays $85 a month in premiums and $50 a month for his particular HIV medication.

“It’s a great deal,” Daigle said. “All the fees are very affordable to me.”

Still, he knows he couldn’t have gotten his plan without working with social workers at a local clinic.

“I wouldn’t have known what to do,” he said.

Franklin, too, counts himself as lucky. After weeks of research and dozens of telephone calls, he found a plan with a $3,650 deductible and affordable drug costs. He also is able to see his trusted doctor.

But the plan wasn’t on the exchange. He discovered it on the private market.

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