Health Law Inspires Hope But Also Worry Among Those With HIV

Matt Sharp had high hopes for the nation’s health law. The self-employed health consultant is HIV positive and has been denied insurance in the past because of his illness, so he was relieved to learn that the law wouldn’t allow that to happen again.

But now, the 57-year-old San Francisco Bay Area resident is less sure that Obamacare will live up to his expectations. 

He plans to enroll in coverage through the state’s insurance marketplace — but he still doesn’t know if his doctors will be included.  And although he will get help with premiums and medications through an existing program for HIV patients, Sharp worries he won’t be able to afford co-payments and other out-of-pocket expenses.

“I am apprehensive,” said Sharp, a former classical dancer. “There is a lot of unease with the whole rollout. But when you are talking about a person in my situation, there is even more unease.”

The Affordable Care Act provides an unprecedented opportunity to reach the more than 1 million people nationwide living with HIV. The law requires private insurers to cover them and others with pre-existing conditions and bars companies from charging patients more because of their illness.

HIV-positive patients can also buy coverage through insurance marketplaces, often with the help of federal subsidies. And the law allows states to expand their Medicaid programs to cover low-income HIV patients who were not previously eligible.

Advocates and doctors agree that the changes will help a population that has struggled for decades to maintain regular access to care. New insurance options also could lead to more preventive care and earlier diagnosis and treatment, they said.

But they worry that the transition— along with confusion and unexpected costs— could lead to gaps in care for HIV patients, causing their illness to progress and be spread to others.

“Having an insurance card alone isn’t a guarantee that people will get high-quality HIV care,” said Jen Kates, who directs HIV policy for the Kaiser Family Foundation and helped put together an online guide about the health law for HIV patients. (Kaiser Health News is an editorially independent part of the foundation.) “There are ongoing questions: Will people be able to see the doctors they need to see? Will all the benefits they need be covered?”

Advocacy groups have criticized some health plans in the insurance exchanges for failing to cover key HIV medications, charging high amounts for necessary drugs or failing to tell consumers which doctors and medications are included.

Last month, a coalition detailed the problems in a letter to Health and Human Services Secretary Kathleen Sebelius.  It cited several examples of health insurers requiring consumers to pay a large percentage of the cost for preferred HIV medications and expressed concern that insurers were trying to discourage people with HIV from enrolling in their plans.

“In the long run, this is a move forward for people with HIV,” said Anne Donnelly, director of health care policy for Project Inform, an HIV and Hepatitis C advocacy organization in the San Francisco Bay Area. “In the short run, this is going to be a rough road.”

Only about a third of U.S. residents living with HIV now receive regular medical care. HIV patients receive coverage through work, private insurance plans or government programs such as Medicare and Medicaid. In the past, to qualify for Medicaid in most states, HIV-positive patients had to be sick enough to be deemed disabled.

Lower income HIV-positive patients now often rely on the Ryan White HIV/AIDS Program, which helps pay for primary care, support services and medications. The $2 billion program provides services to about a half million people each year. But as many of these patients become eligible for new insurance options under the health law, advocates fear Ryan White funding could be reduced or fall away.

John Hogan, a doctor who has worked with HIV-positive patients in the Washington D.C. area since 1993, said the Ryan White program is still needed, including for some who are gaining new coverage. The funding will be essential in 23 states that don’t plan to expand Medicaid and for undocumented immigrants, who don’t qualify for Obamacare, experts said. 

Health Law Inspires Hope But Also Worry Among Those With HIV

Dr. John Hogan, a heptologist with Unity Health Care in Washington, has treated H.I.V. positive patients for over two decades (Photo by Ankita Rao/KHN).

Oscar Lopez, 34, who works in retail merchandising, is in the country illegally and was diagnosed with HIV two years ago. He has been receiving care funded by Ryan White in Pasadena, Calif. He knows he isn’t eligible for insurance under the Affordable Care Act but still is afraid the new law could cost him access to his doctors and medications.

“We need our meds, and we need to take them every day,” he said. “I am trying to stay calm and figure out what is the next step.”

Even HIV patients with insurance often turn to the Ryan White program for help.  Bradley Land, who was infected three decades ago, is covered through both Medicaid and Medicare.  He receives his medical care at Kaiser Permanente (not affiliated with Kaiser Health News)  for both HIV and a heart condition and goes to the Pasadena Public Health Department for additional Ryan White services including  therapy, dental care and  case management.

“My medical is very well-managed,” said Land, an insurance adjuster before he retired in 1993 because of his illness. “But I also need that wrap-around care that helps me live every day. In my 15 minutes with the doctor at Kaiser, I am not going to get that.”

In cities across the nation, HIV-positive patients have been attending workshops to learn more about their options and how their coverage and medical care may change under the health law. Many are trying to navigate a world of private insurance that wasn’t open to them in the past.  At the same time, advocates for HIV patients are scrambling to find enough people with expertise in both insurance and HIV to help.

Vanessa Velez, 25, infected when she was raped as a young girl, is uncertain about how the law will affect her and her family. She is covered by her husband’s insurance plan but turns to Ryan White when the coverage falls short. The two drugs she has taken in recent years each cost $800 a month and her Cigna plan has a cap of $10,000 a year.

She knows what it’s like to feel anxious when money runs short, and how weak she feels when she isn’t at her healthiest. But she said living with the illness and trying to deal with expensive medical care has taught her confidence, faith and patience.  “Everyone has something they’re going through,” she said. 

Sharp, the former dancer in California, said he, too, is anxious but thankful. “I am lucky to be able to even get any kind of insurance,” he said.

Annag@kff.org

AnkitaR@kff.org