HIV and AIDS patients encounter health care hurdles

Allie Johnson

The news of a baby reported to have been cured of HIV touched off a storm of controversy, as well as speculation about whether aggressive treatment might routinely cure other HIV-infected babies.

But the reality for the 1.2 million U.S. adults living with HIV today is that it’s a chronic condition requiring regular preventive care and treatment with expensive drugs.

But how easy is it for patients to get the HIV care they need? Experts say many people with HIV do not have health insurance, and those who do can face challenges in getting care.

Current HIV treatment

Doctors say the current treatment for patients with HIV zeroes in on going for regular doctor’s visits and lab testing, and taking a cocktail of anti-HIV drugs. It also can include taking other medications to manage the side effects of those drugs and to treat HIV complications.

Here’s an overview:

• Preventive care – Patients with HIV typically need to visit a doctor two to four times a year, according to Dr. Michael Horberg, chairman of the HIV Medicine Association and director of HIV/AIDS for the nonprofit health plan Kaiser Permanente. A patient whose HIV is controlled with medication might see the doctor every six months.On the other hand, a patient with a high viral load – a large number of HIV virus particles in the blood – and a low number of T cells (which activate the body’s immune response) might schedule more frequent appointments, Horberg says. Patients also need regular lab tests to measure the amount of virus in their blood, their immune function and other health indicators, according to the National Institutes of Health.

• Antiretroviral drugs – Good HIV care requires at least three medications working together, Horberg says. Some patients are able to use combination pills such as the brand-name drugs Atripla, Complera or Stribild, he says. The drugs prescribed will depend on each case and whether the patient has resistance to certain drugs, Horberg says.One patient might be able to use less expensive generic medications, he says, while another patient might need a more complicated regimen with brand-name drugs. Other health issues also can come into play, Horberg says. For example, if a patient suffers liver problems, the doctor might separately prescribe the three drugs found in a combination pill such as Atripla to be able to adjust the doses.

• Other medications – Many patients with HIV take other medications to manage the side effects of their HIV drugs or to treat HIV complications. For example, a doctor might prescribe the antibiotic Bactrim to prevent pneumonia in a patient who has a low T cell count, Horberg says. Other drugs regularly prescribed to HIV patients, according to the U.S. Food and Drug Administration, include Marinol for loss of appetite, Serostim for weight loss and Diflucan for candidiasis, an overgrowth of yeast that can occur in various parts of the body.

• Other care as needed – Some patients with HIV will need additional care, especially if they develop complications or other conditions such as heart disease, cancer or other illnesses.

Insurance coverage for HIV

Only about 17 percent of people with HIV have private health insurance, and an additional 30 percent don’t have insurance at all, according to Amy Killelea, senior manager of health care access for the National Alliance of State & Territorial AIDS Directors.

That’s partly because patients with HIV have been mostly shut out of the individual health care market, where applicants with pre-existing conditions often are denied coverage, says Carl Schmid, deputy executive director of The AIDS Institute, a national nonprofit AIDS agency. Starting in January 2014, the federal health care reform law will prevent insurance companies from denying coverage to adults with pre-existing conditions, including HIV and AIDS.

Now, patients who don’t have private health insurance might be covered by public health insurance such as Medicare or Medicaid. Also, patients who qualify, depending on the income guidelines in their state, can receive care and HIV drugs through the federally funded Ryan White clinics and programs, including the state AIDS Drug Assistance Programs.

Patients who do have private insurance, though, can face challenges, experts say. For example:

1. Finding the right doctor. A patient with private insurance will have to find a doctor to provide regular care, typically a primary care physician with an interest in treating HIV or a physician who specializes in HIV treatment. “There is often a lot of legwork required,” Horberg says. For example, a patient might have to ask his primary care doctor for a referral, check with a local AIDS service organization and call their insurance company to find out doctors on their plans specialize in treating HIV.

2. Out-of-pocket expenses. It’s not common, but some insurers do decline coverage for some brand-name drugs, Horberg says. However, brand-name HIV drugs tend to be placed in higher prescription drug “tiers” by insurance companies, meaning patients might have higher co-pays or co-insurance (the percentage of the service charge that your health plan calculates for you, which you pay after the time of service). Cost sharing might range from $5 to $10 a month for a generic drug to $30 or $40 a month for a brand-name drug, according to Horberg.

The total amount a patient pays depends on the drug regimen and the insurance plan. Some patients on forums at the HIV and AIDS website POZ.com report paying hundreds of dollars a month. For example, one patient reported paying $500 a month in co-insurance for the combination drug Complera. However, patients who qualify can get co-pays or co-insurance covered through a state drug assistance program, so they pay nothing out of pocket.

3. Navigating services. Patients with HIV often need a network of services that could include case management, dental care, mental health services, legal services and housing assistance, experts say. Patients insured through a managed care organization, such as a health maintenance organization (HMO), might have an easier time getting some of these services, Horberg says.

All patients with private insurance likely will need to seek some services through public programs, experts say. “Private insurance only goes say far,” Killelea says.

In any case, it’s crucial for patients with insurance to know their coverage details, Horberg says. “You have to do your homework,” he says. “An informed consumer is a more effective one.”