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People with HIV are being told to wait to even try to sign up for health insurance offered under the Affordable Care Act until patient advocates can figure out which doctors are connected to which policies and which plans provide the best coverage.
The health care law, also known as Obamacare, offers people with HIV a rare chance to get health insurance. HIV advocates say that about 100 people with HIV in Nebraska and 160 in Iowa are eligible to buy insurance on the federal marketplace — they don't have private insurance or qualify for Medicaid and meet income guidelines.
An estimated 2,000 Nebraskans and 2,200 Iowans have been diagnosed with HIV. Officials say hundreds more have the virus but don't know it.
Nationally, 30 percent of people living with HIV don't have any health coverage. High costs or exclusions based on pre-existing conditions have made coverage unattainable for many, said Amy Killelea, associate director of health care access for the National Alliance of State and Territorial AIDS Directors.
That makes the health care law “a real game changer,” Killelea said.
That's true for Andy Dillehay. The 26-year-old Lincoln man doesn't have health insurance and gets his HIV medicine, which costs $3,100 per month, through a government program. So far, he has been unable to review options on the health care website.
He's one of more than half a million Americans who have had to rely on the Ryan White HIV/AIDS Program, a federal grant program for people who lack sufficient health care insurance or financial resources for dealing with HIV. Drugs that keep HIV under control are expensive, though not all of them cost as much as Dillehay's three meds — Truvada, Prezista and Norvir.
Insurance would give Dillehay access to a general physician. He currently has only an HIV specialist. When he was injured in a car accident a couple of weeks ago, he was treated in the emergency room but couldn't get a follow-up appointment because he didn't have health insurance.
The new health care law will allow Ryan White funds to go further, said Jordan Delmundo, policy and program director for the Nebraska AIDS Project.
“Normally,” Delmundo said, “we'd pay $1,500 a month for (a person's) medications, but if we purchase insurance, it could be $200 a month (for a premium). That's a huge cost savings.”
The Ryan White program, established by a 1990 congressional act, announced last week that it had awarded more than $1.9 billion in grants to cities, states and local community-based organizations in fiscal 2013.
It's much cheaper to pay for HIV medication than it is to pay for treating someone in whom the virus has progressed to AIDS, said Dr. Mark Goodman, who treats HIV patients at a downtown Alegent Creighton Clinic.
“We don't save any money by generally denying people maintenance (medications) out in our community,” Goodman said. “Because the fallback is always the ER. When it gets bad, people hit the emergency room. They can't be turned away. And watch the (financial) charges go nuts.”
Keeping somebody on their HIV medications — or getting the person on them in the first place — helps stop the transmission of the virus, he said.
But everything in the AIDS drug assistance program now is confined only to HIV care, Goodman said. “We're not covering heart problems, we're not covering diabetes, we're not covering asthma, we're only covering HIV. And now, with a policy that's somewhat portable, people for the first time have access to comprehensive care.
“Restoring the immune system is important, but all the rest of this stuff has been back burnered. And represents significant health threats.”
It's not yet clear, though, which insurance plans people with HIV should buy, Delmundo said. “We've asked all our clients and any other HIV-positive patients we can reach out to to hold off from enrolling so we can figure out which plans are most beneficial,” he said.
Waiting shouldn't be a problem, Killelea said, because Dec. 15 is the date by which people must be enrolled in a health plan in order to have coverage by the law's Jan. 1 deadline.
Killelea said HIV/AIDS advocates across the country are discovering a few drawbacks with available plans, which are offered at the bronze, silver, gold and platinum levels. “Some of the red flags we've seen early on are particular medications being on very, very high tiers which carry with it very, very high cost-sharing,” she said. “That's been a concern.”
Delmundo said his group has found that some insurance plans will work well for people in western Nebraska, while others offer better coverage for people who live in the eastern part of the state.
State and Nebraska AIDS Project officials will have finished a full analysis of the plans — which ones cover what meds and what doctors are in which networks — by Nov. 15, Delmundo said. By then, he said, he hopes the federal website, HealthCare.gov, is working better. People who aren't in regular contact with an HIV case manager can call the Nebraska AIDS Project at 402-552-9260.