Won’t Be Screwed Again

This Story Made an Insurance Company Cover AIDS Drugs

Can you trust your insurance company’s drug formulary? Robert Shore thought he could. He was wrong.

05.18.15 9:15 AM ET

Robert Shore walked in his front door, dropped his stuff and sorted through the mail. In among the circulars was a letter from his insurance carrier, Assurant Health. The letters are almost always notices that the New York-based company had received a claim from one of Shore’s Fort Lauderdale-area providers.

“I got this Assurant letter, expecting to see another like that,” said Shore, 50. “Instead, it had these big, bold letters—‘This is about coverage.’ ‘This is about Truvada.’ I started reading it. I was kind of floored.”

Floored because, after just four full months of coverage—and four months of the company covering Truvada, a drug he takes to keep himself free of HIV—Assurant had decided that it would no longer cover Truvada as a preventative treatment.

“Our records indicate that you have received Truvada in the past year with no other antiretroviral agents which would suggest use for pre-exposure prophylaxis,” the letter read. “Prophylactic treatment is not a covered benefit as listed in the Exclusion Section of your member contract.”

If Shore were to become infected with HIV, Assurant would cover it, no problem (Truvada is also used to treat people who have HIV, in combination with other drugs). But as for prevention? He was out of luck.

And it’s not just him. Men in Florida and Georgia have reported receiving the letter. Truvada costs about $13,000 a year without insurance.

And there’s nothing someone like Shore could do about it until the end of the year, when open enrollment begins again for individual plans on HealthCare.gov.

Abrupt Reversal

Thankfully, however, when contacted by The Daily Beast about this change in behavior if not change in policy, Assurant took 27 hours to issue this statement: “We are reversing our decision and will be reaching out to policyholders who received the letter.”

The letters announcing its reversal began to be received on Thursday.

No word on how many people received the original letter telling them Truvada was no longer covered. No comment on whether people using medications to prevent other diseases, like heart disease or diabetes, had received similar letters. Assurant declined to comment further. And no word on whether other insurers will change course. Shore’s insurance broker, Cliff Eserman, is worried that policies he’s written for other clients taking Truvada for prevention may be in jeopardy.

Eserman received an email from one large insurer, saying that Truvada is not on the company’s preventive drugs list—a list required by the Affordable Care Act—and so, even though it’s on the drug formulary, would not be covered. But when contacted by The Daily Beast, the company, Blue Cross Blue Shield of Florida, said they do cover prophylactic use of Truvada and “we have no plans to change our coverage policy for this.”

What is clear is that all of these exclusions are legal, said Patrick Burns, owner of Burns Employee Benefits, a health insurance benefits company based in Oakland, California.

“It’s legal. Sure, it’s legal,” he said. “The pharmaceutical policies of insurance companies are pretty complicated and oftentimes will cover one thing and not something else.”

The problem, he said, is that “prevention” is nebulous. And when you have two prevention options—say, one that’s high-cost, like a $13,000-a-year pharmaceutical, and one that’s not, like a $10 box of condoms—an insurer is likely to carefully consider its coverage. Burns, who has no connection to Assurant, said it’s likely that this decision has been in the works for months. There are protocols. There are committees. The process moves slowly. But, he added, “It certainly looks bad at this point.”

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And this shows up a central flaw of Obamacare. While many people thought these kinds of denials might go the way of rescission of coverage or denials for pre-existing conditions when the Affordable Care Act passed in 2010, Assurant’s attempt to cut off Truvada proves that’s not the case. Many treatments, sometimes expensive, fall into a gray area of wellness and prevention, but just short of actual medical care. And despite all of the law’s reforms, that ambiguity allows insurers to pick and choose what to cover and what to deny.

Prevention Paradox

One of the big innovations of the ACA—or Obamacare, if you prefer—is that for the first time, it requires insurance companies to cover certain preventative services such as immunizations, HIV and STD tests, and blood pressure and diabetes screenings, free of charge. Those services are spelled out under Section 2713 of the law and include immunizations and specific services for women and children spelled out by the U.S. Health Resources and Services Administration. It also requires insurers to provide free access to evidence-based screenings and services that the U.S. Preventative Services Task Force, a government-supported, independent organization, has given an A or B rating.

It’s thanks to this provision that you and your children can get immunized for free and that things like aspirin for heart disease ought to be free of charge under the law.

Truvada, which was just approved for preventative use by the FDA in 2012, is not on that list. The USPSTF is a slow-moving organization; HIV tests were only added to the list in April 2013.

The ACA requires health insurers to provide so-called essential health benefits, such as ER coverage, inpatient stays, and prenatal care, as well, said Timothy Jost, a law professor at Washington and Lee University Law School who specializes in health care, but it doesn’t require insurers to cover other preventive treatments. These essential health benefits, and the preventive services they mandate, are laid out in so-called benchmark plans—that is, model health insurance plans dictated by each state that tell insurers the minimum coverage they’re allowed to offer in their plans. This means that insurers are no longer allowed to sell, say, health plans without ER coverage on Healthcare.gov. But it also means that unless a state explicitly includes preventive use of Truvada in their benchmark plans, insurers don’t have to cover it, he said.

The issue is that Assurant’s drug formulary does cover Truvada—Shore and his insurance broker Eserman checked before he signed up for the plan at the end for 2014. Eserman said he even called the company directly to check if the drug would be covered for prevention, and got an affirmative answer. It never occurred to either of them that the insurer would cover the drug—but only for HIV treatment, not for prevention.

“I’ve been doing this for 19 years and I’ve never seen this before,” said Eserman, who said he reached out to other insurance companies to see if they plan to follow suit—a prospect that alarms him. “It’s really baffling. There were no notations that if patients used Truvada this way that it would not be covered. It just says in the formulary that it’s covered.”

The Not-So-Fine Print

Assurant issued the letters on May 1. By Monday, May 4, Eserman got his first email from a client (not Shore), informing him of the letter. The same day, Jim Pickett at the AIDS Foundation of Chicago got an email from someone in Atlanta, wondering if there was anything he could do about Assurant discontinuing coverage of the drug. Then, Joey Wynn, community relations director at Empower U, a community service organization and health clinic for gay men in Miami-Dade County, Florida, saw a Facebook post from one of the guys Empower U serves that he’d received the letter. He’d soon find out that two more men helped by Empower U got the same letter.

By Wednesday, a Facebook group dedicated to Truvada as PrEP (pre-exposure prophylaxis) was abuzz and strategizing, and Lambda Legal, the gay rights and HIV-advocacy organization, had begun soliciting people who’d received the letter to contact them. Scott Schoettes, an attorney at Lambda Legal, said in an email that the organization “has been on the lookout for insurance coverage denials of Truvada as [prevention].” The organization is “exploring potential legal action.”

In the letters received by Shore and others, Assurant promised to cover the drug for the next two months, but then they would cease coverage, citing the exclusion section of the policy.

But if you take a closer look at the exclusions section of Shore’s policy, you’ll see a lot of things that aren’t covered—nine pages worth, in fact.

It doesn’t cover treatments for injuries that might be paid for by workers compensation—even if you don’t file a workers compensation claim. It doesn’t cover treatment for injuries from car accidents if the patient is entitled to payments under other forms of insurance. It doesn’t cover injury or illnesses that are the result of war or extra-military service. So if you work for a company like the former Blackwater, you better hope that company has a good plan. It doesn’t cover “treatment of dental injury from an accidental blow to the face causing trauma to teeth, the gums or supporting structures of the teeth”—if you are watching a baseball game and a hit smacks you in your face, Assurant isn’t liable. It doesn’t cover anything that would enhance sexual experience—presumably, your Viagra is out of pocket, pal. It will cover anabolic steroids if deemed medically necessary but it won’t cover “charges to address quality of life or lifestyle concerns.” No explanation of exactly what that means.

And, finally, Assurant health doesn’t cover “prophylactic treatment.”

A Lifestyle Thing

Assurant’s move and reversal look bad, Burns of the health insurance benefits company said, because once you offer coverage, it’s hard to take it back. “The question,” he said, “is if they feel like they can ask their members to make the switch to something else.”

For his part, Burns said he sees an analogy between preventive Truvada use and weight-loss drugs—another thing Assurant doesn’t cover. They, too, are often approved by the FDA, and they are often marketed as a preventive measure against diseases associated with obesity, like diabetes. But Burns said insurers have been slow to cover them. It’s that “lifestyle” thing again.

“It’s kind of like saying, ‘This is a choice that you’re making, almost, and we are not going to pay for that choice,’” he said.

The code here, of course, is that lifestyle equals bad behavior. And with HIV, moralizing and stigmatizing behavior can have drastic consequences. That’s why Lambda Legal got involved. The fear is that people like Shore are being unfairly excluded from coverage and access because of HIV status.

The difference is that unlike weight-loss drugs, or other preventative services some insurers offer, like a discount on a gym membership, refusing to cover Truvada could put the insurer and the insured in precarious positions. For the insurer, preventive Truvada may be expensive, but treating someone who acquires HIV is much more costly.

For the insured, it puts the drug, which studies have found to be more than 90 percent effective when taken daily, out of reach.

“It’s a more impactful thing,” Burns said.

Get a Life

Besides, the “lifestyle” argument has its limitations, said Burns, adding, “If you’re married to someone with HIV, that’s not a lifestyle—that’s a…”

It’s a life. And access to Truvada, even outside a marriage—when someone is dating in a community with high levels of undiagnosed HIV—can be the difference between life and death.

Take Atlanta, where Danny Sprouse, who received the Assurant letter, lives. The HIV infection rate there is the fifth-highest in the country, and even higher among young gay black men, who have the highest rate of HIV in the country. About one in three people who are diagnosed with HIV progress to AIDS within 12 months of diagnosis in Atlanta—a sign of late diagnosis and, likely, lots of unintentional transmission of the virus.

“We sit in the epicenter of the epidemic,” said Sprouse, the 52-year-old director of an Atlanta-area HIV prevention center. “The disease is out of control in metro Atlanta.”

Or consider Florida, where Shore lives. In 2013, Florida surpassed California for the No. 1 spot for the number of new HIV diagnoses—and Broward and Miami-Dade counties, where he lives and mingles, have among the highest rates in the state. And still, 28 percent of those with HIV progress to AIDS within a year, meaning they’ve probably had the virus for a while, and probably not known it.

Shore compares the experience of dating in an area where a lot of guys don’t know they have HIV to traveling to Kenya, with it’s high rate of malaria.

“I took anti-malarial meds because I was in a high-risk environment,” he said. “Well, I’m in a high-risk environment here for HIV.”

Now that he’s received, well, assurance that Assurant isn’t going to pull the plug on his access to Truvada this year, he’s relieved. But he’s not at ease. Assurant announced last month that it will be shutting down its health insurance business by the end of this year (insiders say that the Truvada decision is unrelated to the closing of the business). And he’ll be in the market for health insurance again.

And Shore, who changed health plans at the end of last year to afford Truvada, isn’t sure he can trust insurers anymore.

“I learned that I have to get ahold of the actual policy [before I sign up],” he said. “I thought I did my due diligence [last time]. I asked my doctor what insurance he takes. I worked with an expert, my broker. This never came up. It was never mentioned in the [drug] formulary. It was a tier five, specialty drug. It’s FDA approved. There were no red flags that this wouldn’t be covered by this policy. It becomes, you do your due diligence, you spend time to vet out the plans—and by the way, you’re still going to get screwed.”