Silver (Level) Fox

Even After Obamacare, It’s Still Way Too Hard to Get HIV Meds

Seeking a better, safer sex life, people are using open enrollment to switch their health plans to ones that bring Truvada in reach. If only it were that simple.

02.08.15 11:45 AM ET

Since the Affordable Care Act went into effect, Robert Shore’s health insurance premium has more than doubled, from $173 for a discontinued bare-bones plan with a $10,000 deductible to $373 for the least expensive bronze plan he could find on HealthCare.gov. Then in November, the Ft. Lauderdale man’s health insurance went up again under Obamacare, as the ACA is popularly known.

The reason? Shore, a gay man, wanted to make sure he was as protected as possible from HIV. And that meant finding a plan that would allow him to afford the only medication approved by the Food and Drug Administration for HIV prevention.

“To be honest,” he said, “the whole reason I have health insurance now is to cover the cost of PrEP and doctors visits for PrEP.”

PrEP, which stands for pre-exposure prophylaxis, is a new approach to HIV prevention. Shore wanted it because he found himself using condoms less often, and knew that could be a recipe for disaster. Studies show that Truvada, the the only drug approved for PrEP, can prevent HIV infection more than 90 percent of the time when taken daily. The U.S. Centers for Disease Control and Prevention estimates that 275,000 gay men and 140,000 straight people in relationships with HIV-positive people could benefit from Truvada’s preventative regimen.

The problem is the expense. The drug costs $13,000 a year without insurance. So before open enrollment ends on Feb. 15, people interested in Truvada’s preventative effects are wading into the murky waters of copays and coinsurance, premiums and out-of-pocket maximums, with the hope of drastically reducing their HIV risk.

Shore doesn’t want them to end up in the situation he was in last year, when he went to pick up his Truvada prescription under his ACA plan, and was hit with a several-hundred-dollar deductible.

“Wow,” remembered Shore, who has since switched to a plan with a higher premium—$565 a month—but lower prescription drug costs. “I’m one of those people now, hit by a hundreds-of-dollars bill just to get a prescription. Wow. I’m going to have to do this.”

So, a case of pricey drugs and Obamacare conspiring to screw over the poor and vulnerable, right? Just like its critics claimed.

It’s not that simple.

“Cost is the elephant in the room,” said Dr. Brad Hare, director of HIV Care and Prevention at Kaiser Permanente San Francisco, one of the largest PrEP prescribers in the country. “When you’re seeing a doctor once a year for a cold, it’s OK that you have a plan that doesn’t cover medications. If you’re going to be on a drug that costs $15,000 a year, you don’t want a plan that doesn’t cover medications well.”

All Coverage Not Created Equal

Matt Sachs is a thin, well groomed 20-something who can also occasionally be seen spreading sex positivity, affirmation and knowledge in face paint and rhinestones as Sister T’aint A Virgin, a member of the Sisters of Perpetual Indulgence. But on this day, Sachs is doing—well, pretty much the same thing as the first and only official PrEP navigator in San Francisco.

Several times a week, Sachs brings men out the front door of the health and community center Magnet, located in the Castro District of San Francisco, through a metal security gate, up a set of stairs and to a small office at the back of the building. There, he explains the difference between copays (the amount you pay per office visit) and coinsurance (the portion of each medical bill you’re liable for after you’ve met your deductible) and between premiums (the monthly cost to be enrolled in the program) and deductibles (the amount you pay out of pocket before benefits kick in).

“A big component of what I do is just going over that terminology,” he said. “[ACA plans] can be easy to obtain but it can be very confusing, too.”

Then he asks guys the state of their insurance, how much they pay and how much they earn a month. It could be awkward to delve into the personal finances of strangers, he said, except for the fact that most of these guys have just had their personal and sexual histories taken. Once you’ve been asked about the number and frequency of sexual partners, the last time you had condomless sex and your drug habits, talking about your adjusted gross income is not that difficult.

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So far, Sachs has helped about 80 men get access to Truvada. To each person, he says the same thing: To afford Truvada, you need a manageable monthly premium, an affordable drug benefit and a reasonable copay for office and lab visits. This last one is essential because, in addition to the cost of the drug, the PrEP protocol calls for an initial negative HIV test and lab work on liver and kidneys health, as well as quarterly follow ups and STD screens. He also tells all of them about Gilead’s copay assistance card, which will cover $300 a month toward the cost of the drug.

Bronze plans, like the $5,000 deductible, $373-a-month plan Shore had at the beginning of 2014, usually put Truvada out of reach. Gold and platinum plans, with no deductible and low copays can make Truvada affordable—but the monthly premium may not be.

It’s the silver level plans, with $250 deductibles and prescription copays of $50 a month that are just right.

“For individuals seeking PrEP—and only in the realm of PrEP—as long as someone has the Gilead copay assistance card, a silver-tier plan is perfectly adequate,” said Sachs.

That’s the kind of plan Shore switched to and it’s working. With the Gilead copay assistance card, his out of pocket cost for Truvada is down to zero. This new plan, it turns out, is less expensive overall.

Sisters Are Doing It For Themselves

Brittany Johnston works two jobs and goes to school. Even still, affording Truvada would be tough for the 22-year-old Oakland, Calif., resident. And that would be a shame. African American women like Johnston are 20 times more likely than their white counterparts to contract HIV. So the fact that she can get the drug for free through The CRUSH Clinic, a youth clinic at the East Bay AIDS Center, is like an act of God.

“I’m very religious,” said Johnston, who asked that her real name not be used because her ex-boyfriend is not out to everyone about having HIV. “Honestly, I feel like God is protecting me.”

Drug research is how a lot of people, including Shore, first found themselves taking Truvada. Clinical trials and so-called demonstration projects across the country have allowed hundreds of people free access to Truvada while clinicians learn how to offer and monitor the drug in people who need it most.

But as those studies wind down, people like Robert Wilder Blue have become de facto health insurance navigators. Blue is program coordinator of the PrEP Demonstration Project at San Francisco City Clinic, a public health clinic. As study participants started cycling off the year-long study, Blue, a trained social worker, scrambled to get up to date on the requirements of Covered California, the state’s insurance marketplace, and for Medi-Cal, California’s version of Medicaid, the federal health program for the pregnant, poor and disabled. About half of the participants in the San Francisco demonstration project wanted to stay on Truvada once the study was over, estimated Blue, and about half of those had private health insurance—but not everyone had a primary care doctor, and not all of those who did felt comfortable asking their doctor for a prescription for Truvada.

Some people without insurance or much money have easier access to Truvada than those with private insurance, said Blue. Those with no insurance and who earn less than $58,000 a year are eligible for Gilead’s patient assistance program, which provides the drug free of charge on a limited basis. At any one time, 30 to 35 patients at San Francisco City Clinic (which can include but aren’t limited to demonstration project participants) are getting Truvada for free from Gilead. And those who qualify for Medi-Cal can also get Truvada for very low or no cost. “The problem right now is for people who have health plans with high deductibles, or plans that classify Truvada as a specialty drug and charge a copay,” said Blue. “Gilead offers a $300-a-month copay assistance card, and that’s great if your copay is $200. But if you’ve got a $3,000 deductible, it’s still a lot out of pocket.”

Indeed, at a public hearing on Truvada drug assistance at San Francisco City Hall in September, Erik Gibb estimated that his plan included a $3,000 deductible and a $3,600 copay for the drug. Courtney Mulhern-Pearson, director of state and local affairs at the San Francisco AIDS Foundation, has heard stories about $800 drug copays, 40 percent coinsurance after meeting deductibles, and, yes, massive deductibles. It all adds up to people who are trapped in plans that prevent access to Truvada.

“It’s was non-starter,” she said of a man who called her in August with a high deductible and copay and a desire for Truvada. “All we could do was make sure he knew about open enrollment.”

Getting to Zero (Cost)

In a city like San Francisco, which wants to “Get to Zero” new infections, Truvada is a key player. But even in a city that offers healthcare to all resident through Healthy San Francisco and where the San Francisco AIDS Foundation will equip people who want Truvada with free access while their insurance changes over, affordable access to Truvada is not a given. At a PrEP Open House held in the Castro in January, men with employer-based plans complained that none of their options would make Truvada affordable.

When these men come to see Sachs, he tells them they have two options: disclose to their benefits managers that they’d like to take Truvada—something that still carries a stigma—and ask them to adjust benefits to make available plans more Truvada-friendly, or ask their employer if it will allow them to opt out of employer-sponsored plans and provide a subsidy they can use to buy their own insurance on the marketplaces.

Then there are the insurers’ drug formularies. Most insurers put generic drugs on the lowest, least expensive tiers, and specialty and high-priced drugs on other tiers. Last year, the San Francisco AIDS Foundation and another nonprofit, Project Inform, created an analysis of health plans offered under the Affordable Care Act (so did the AIDS Foundation of Chicago), as well as an analysis of where Truvada falls on various marketplace drug formularies.

What they found was that insurers regularly move drugs from one tier to another without warning.

“Price transparency is a really big problem,” said SFAF’s Mulhern-Pearson. “Insurers can change the formulary at any time, so from month to month it can look really different. The process is not consumer friendly, and not enrollment counselor friendly, either.”

And this is just in San Francisco. In Shore’s Florida, a state that declined to expand Medicaid, people who fall between the traditional Medicaid threshold and eligibility for HealthCare.gov are out of luck—for coverage in general and PrEP-friendly coverage in particular. Florida has the second highest rate of HIV diagnoses in the country, just behind California.

And then there’s the bigger issue of why the drugs and healthcare is so expensive in the first place. Blue has counseled people only to discover that they can’t afford the silver plan that would put Truvada in reach.

“If you tell people that it will cost them $300 a month, and they need that $300 for rent, there is no choice,” he said. “I overheard the other day, ‘The thing about the Affordable Care Act is that it’s great that people have access to health insurance. But for many, it’s not that affordable.’”