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Health Insurance Companies Are the Biggest Impediment to PEP and PrEP for HIV Prevention

September 12, 2014

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Howard Grossman, M.D..

Howard Grossman, M.D., is the director of AlphaBetterCare, an LGBT-friendly primary care provider serving New York City and New Jersey. An HIV physician and researcher for more than 20 years, Grossman is also a senior attending physician at Mount Sinai Roosevelt Hospital.

Post-exposure prophylaxis (PEP) for HIV, which consists of immediate treatment for possible exposure to HIV to prevent infection, has been the standard of care for quite a few years.

And now, pre-exposure prophylaxis (PrEP) provides an ongoing method of protection against HIV infection. In May 2013, the U.S. Centers for Disease Control and Prevention (CDC) issued guidelines for its use in high-risk populations. In June 2014, PrEP was again cited by CDC as an important part of HIV prevention efforts. Later that month, New York Governor Cuomo chose "providing access to Pre-Exposure Prophylaxis (PrEP) for high-risk persons to keep them HIV negative" as one of the three cornerstones of his plan to end the HIV epidemic in New York state. And in July, the World Health Organization (WHO) issued guidelines recommending oral PrEP for those at high risk.

Given all this, what is the greatest impediment to scaling up PEP and PrEP as HIV prevention efforts? It's not the refusal of patients to seek new ways to protect themselves. Nor is it the lamebrained disinformation efforts of those whose factory model of HIV care depends on having a continuing epidemic.

The greatest threat to successful HIV prevention in the U.S. is the so-called health insurance industry.

We have known for some time that insurance company policies are creating havoc for many HIV-positive people seeking to get medication. Routine denials, forcing people to use inefficient mail-order companies in which the insurer has a controlling investment if not outright ownership and pushing people to go on generic versions of outdated and more toxic medications are only a few ways that insurance company policies have interfered with adequate treatment. Every doctor can tell stories of patients who missed medications simply because of insurance company foul-ups.

Now the insurance companies are setting up roadblocks that virtually ensure that significant numbers of people who seek medication to prevent HIV infection won't get it in the timely manner that is required. Or if they do, they won't be insured a steady supply.

Let me share just a few stories with you:


PEP: Out of Pocket or Out of Luck

Some of you read of my own experiences trying to get PEP. On a holiday weekend last summer, I had a possible exposure to HIV. I was in a resort area and called several pharmacies to find Isentress [raltegravir] and Truvada [tenofovir/FTC], the current first-line recommended treatment. The only one that had a supply on hand was a Rite Aid pharmacy. I assumed my insurance would pay in this emergency situation.

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When the pharmacist tried to submit, he was told he had to call United. He did so, and was told he needed to speak to someone for prior approval for the drugs. He was put on hold.

I also called and was told it required prior approval.

We waited on hold for 40 minutes.

At that point he decided to try calling the prior approval phone number he had on file, only to find out that they were closed for the holiday weekend. At no time were we told that there was anything unusual required with this request.

I ended up paying over $200 for two days' supply of medications.


Endless-Hold Land

The next day, I tried to get coverage for the medications. First, I was told I needed to use mail-order. I had to explain that this was an urgent situation that could not wait.

I was transferred for preapproval, but then had to be transferred to another place for approval to use a local pharmacy. I got all those approvals and asked if I could just use my local pharmacy and was told that was fine.

When my pharmacy tried to put the medications through, though, they were told I had to use a "specialty pharmacy," and that only Walgreens or Duane Reade qualified. Let's not even talk about the restraint of trade issues involved here.

I sent the prescriptions to Duane Reade. When I went to get the drugs, it turned out they only had approval for the Truvada and not the Isentress. So it was back into endless-hold land with United and OptumRx to get the Isentress approved.

I started the process at 10 a.m.; it took until after 7 p.m. to get the medications. How fortunate that I could afford to lay out the money so I had enough medication to cover me and start it within the 36 hours when it would be effective!

Trying to get reimbursed by the insurance company for the money I spent was another saga.

There were two denials, which I appealed. I was finally able to get them to approve it, but then OptumRx, for some unknown reason, decided to slice off $10 from the promised reimbursement.

At that point I threw up my hands and gave up.

How much sooner would someone give up who did not have money, was not used to dealing with insurance company nightmares on a daily basis and did not have the medical background to fight the people issuing the denials? How many people would end up seroconverting because of that?

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