HIV Patients Asked to Pay More Under Obamacare

Advocates say insurers are finding new ways to squeeze patients with HIV

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One of the most popular provisions of the Affordable Care Act is the requirement that insurance companies sell policies to anyone who wants them, without charging higher premiums based on pre-existing conditions. But premiums are just a part of what Americans pay for health care and even under Obamacare, some people with underlying health issues are facing less choice and higher costs than those who are healthy.

More than two months after the launch of health law’s private insurance markets, Americans with pre-existing conditions like HIV are discovering that some of the policies being sold through Obamacare’s new insurance exchanges do not cover commonly prescribed medications for their disease and require much higher out-of-pocket spending than for other drugs. In many 2014 plans offered in the ACA’s insurance exchanges, that can mean patients are required to cover as as much as 50 percent of the cost of HIV medications, an expense that could run as high as $1,500 per month. (The health law caps annual out-of-pocket spending for individuals at $6,350.)

This kind of coinsurance for expensive medications, in which patients pay a percentage of total cost instead of a fixed copay, existed before the ACA, but experts say it could become more common under the law as insurers are forced to sell policies to sick and healthy consumers alike. These companies must compete in Obamacare’s new marketplaces, where consumers can easily compare premiums, but not coinsurance drug costs and other out-of-pocket spending.

Some HIV advocates see the limited offerings as part of an intentional move by insurers to scare away HIV patients in order to keep their risk pools full of healthy people and their profits up. “It’s blatant discrimination,” says Carl Schmid, executive director of the AIDS Institute, a non-profit advocacy organization based in Washington, DC. Others say insurance companies, many of which have little experience offering individual market coverage to those with HIV, may have simply overlooked certain drugs in their initial plan designs. “I’m going to give the insurers the benefit of the doubt,” says Robert Greenwald, co-chair of a national working group on HIV policy and director of Harvard’s Center for Health Law and Policy Innovation. “This is a new paradigm they’re working under.”

Either way, for those with underlying health conditions—including HIV—the process of choosing a new health plan under Obamacare is no simple matter. Rather, choosing a plan means navigating a maze of confusing and sometimes inaccurate medication lists and fewer viable insurance choices than those available to their healthier counterparts. “We wanted these protections for vulnerable populations and we’re not getting them,” says Schmid. “I don’t know want to knock the ACA because we support it, but we want it to work for patients.”

Of the six health plans offered through Illinois’ Obamacare insurance exchange, for example, just two offer accompanying prescription drug coverage that allow HIV patients to obtain prescription medications with copays of $50 or less, according to says John Peller, vice president of policy at the AIDS Foundation of Chicago. The other four plans, which Peller characterizes as “problematic,” require enrollees to pay 30 to 50 percent of the cost of HIV drugs.

Variation in drug coverage among health plans is common and legal, but advocates worry that the limited options for HIV patients could dissuade many from getting the coverage they need and can afford under the new law. “We have to be careful to hold all the insurers accountable so they do not implement practices that discourage people living with HIV from applying for their plans,” says Greenwald.

Federal regulations require that insurers cover a certain number of anti-viral drugs used to treat HIV, but do not specify which drugs must be included in a plan. Regulations require that drug coverage plans be designed in a non-discriminatory way, but allow insurance companies to classify drugs into difference “tiers” that require different levels of patient cost-sharing. In many cases, HIV drugs are classified as higher tier medications. A spokesperson for the Department of Health and Human Services said that patients can ask insurers to make exceptions for un-covered drugs.

In October, Greenwald spearheaded an effort to alert insurers and federal health officials that some drug coverage plans on the exchanges omitted combination single dose medications for HIV patients. These insurers instead covered individual HIV drugs, but most HIV patients prefer to take pills that combine several drugs into a single pill. “When patients are on single tablet regimens, their adherence goes up, their hospitalization costs goes down and their overall treatment costs go down,” says Peller. After Greenwald and others raised the issue publicly with HHS, several insurers added single dose medications to their drug lists, known as formularies. WellPoint, which sells plans through exchanges in 14 states, said it added one common single dose drug, called Atripla, to its formulary after Oct. 1.

Not everyone has followed suit, Greenwald says, and he notes that some insurers have not updated the lists of covered drugs that are publicly available to consumers shopping in the insurance exchanges. The omission, he says, “could rise to a discriminatory practice because it discourages people with HIV from applying because they don’t see their medications covered.” To Greenwald and other advocates, placing high coinsurance rates on all HIV drugs is a way of treating these patients differently than their healthy counterparts — despite the ACA’s promise to end discrimination against those with pre-existing conditions. “The whole point of the Affordable Care Act and these marketplace plans is to give people access to health care and essential health benefits that meet the standard of care,” says Greenwald. But for some HIV patients, he says, “The coverage will be meaningless because many people will not be able to afford their medications.”

Public funding programs help cover HIV health care and drug costs not picked up by insurance, but eligibility for such programs varies by state. “I’m very concerned that six months from now what you are able to get in Illinois is going to look very different in Alabama and that is not how one deals with an epidemic and a communicable disease like HIV,” says Greenwald. HIV patients who adhere to individually tailored drug regimens are far less likely to transmit the disease as their viral load drops.

Before the ACA, insurance companies could simply refuse to cover HIV patients, part of the reason some 25 percent of this population is uninsured and about half do not receive regular medical care, according to the Centers for Disease Control and Prevention. Peller, of the AIDS Foundation of Chicago, says half of those with HIV and AIDS in Illinois are currently uninsured and many will gain new coverage not through the ACA’s private insurance marketplaces, but through Medicaid. This public insurance program and other funding programs to cover costs not picked up by private insurers “really blunts the impact of some of these discriminatory plan designs,” he says. “But we feel very strongly that the coverage that exists in 2014 is really going to be the template for the future. We want to make sure that the plans that are out there are fair to people with every kind of chronic condition, including HIV.”

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