Before the pharmacist retrieves my prescription, she leans in and whispers: “Just so you know, it’s $1,300.” This happens almost every time, so I already have at the ready my coupon card from the drug’s manufacturer.
The card provides me with $3,600 in co-pays, or about three months worth of medicine, but now I’ve run out. I’m only on the hook for $80, after which I’ll hit my $7,150 health insurance deductible for the year. Then, until January, each monthly prescription will be free for me. I swipe my credit card.
Between the manufacturer-provided discounts and my private health insurance, I can afford Truvada, which blocks HIV transmission, and, most likely, I’ll be able to continue my regimen even if the Affordable Care Act is repealed. But, that won’t be the case for thousands of other at-risk people who could potentially lose coverage, meaning we may miss the best chance we’ve ever had to end the AIDS epidemic.
“Universally available PrEP and treatment could end the HIV epidemic,” said Dr. Robert Grant, an AIDS clinician and researcher at the University of California, San Francisco. However, the implementation still needs some work.
In 2012, when the Food and Drug Administration approved Truvada for the prevention of HIV, a treatment also called pre-exposure prophylaxis (PrEP), it seemed like a watershed moment. The pill is taken once a day, has comparatively mild side effects, requires only routine blood tests, and is up to 99 percent effective. Public health officials in major U.S. cities, such as New York and San Francisco, embraced Truvada, which is more effective than condoms and also an option for IV drug users, who now account for 10 percent of all new HIV infections.
The major barrier then — and now — is the $1,300-a-month price tag.
Currently, only 125,000 people are on PrEP in the United States, the majority of whom are white men living in cities — a troubling disparity considering that, during the past decade, overall HIV infection rates have fallen by 20 percent but risen, during this same period, by almost a quarter for black and Latino men who have sex with men, populations that are also disproportionately uninsured and on Medicaid. Likewise, because of a combination of stigma and inaccessibility, rural communities are also lagging behind.
Moreover, the benefits extend beyond greater protection from HIV. Truvada is “a wonderful gateway drug to primary care,” according to Grant.
When someone comes in for an HIV test, Cody Shafer, the PrEP coordinator for Iowa’s Department of Public Health, directs him to a patient navigator who specializes in ACA enrollment and assists him during the 20-minute wait for results. Shafer says it’s the first time that many of his patients have had insurance, which allows them to access a host of preventive services, such as programs to quit smoking, treat substance abuse and combat diabetes risks.
What’s more, to maintain their PrEP prescriptions, each recipient must get tested for HIV every three months, four times as frequently as other men who have sex with men, according to Grant’s experience as a clinician and data from the Centers for Disease Control and Prevention. This infrequent testing helps explain why 1 in 8 HIV-positive people in the U.S. is unaware of their status.
But, these secondary benefits may soon disappear.
Though it’s unclear how (or if) the ACA will be repealed, the plan passed by the House this month would certainly lead to fewer insured Americans and, by extension, fewer patients able to afford PrEP. Gilead offers that $3,600 co-pay discount to patients with insurance and a full subsidy to those without, but that assistance will be insufficient.
“To qualify for those programs, you need to have a motivated physician who’s willing to fill out the forms. If you don’t have insurance, you won’t have a physician,” Grant said.
And, Gilead also doesn’t cover lab fees, which, for my latest visit, would have cost me $615.81.
The dangerous practice some users engage in
When patients are unable to access Truvada through official channels, they find other means. Shafer told me he’s already seen men in Iowa who drop down to four doses a week to conserve pills, HIV-positive patients who ask for early refills to share or sell, and PrEP users who continue to fill prescriptions even after they’ve stopped engaging in risky behavior.
“They want to have extra on hand to help out friends and partners who lose coverage,” he said.
Considering the drug’s effectiveness and ease of use, it’s understandable that patients will choose to have some protection over none. However, the greatest risk of PrEP is contracting HIV and then taking Truvada, which is also used to treat the disease, and that potentially leading to mutations that make patients resistant to an entire class of antiretrovirals.
To make matters worse, HIV can lie dormant and asymptomatic in the body for years, and at-home tests can miss an infection as far back as a month. Newly infected patients are the most contagious vectors, and without any symptoms to slow them down, they can spread the disease with astonishing quickness. (Some of the first men to die of AIDS reported more than 2,500 lifetime partners.)
A missed opportunity
Republicans’ health care reform proposal comes at a precipitous time for the AIDS epidemic. Current treatments are effective enough that HIV becomes nearly undetectable in the blood, but antiretrovirals don’t come cheaply. The CDC estimates that the lifetime cost of treatment is $379,000, and allowing insurers to discriminate based on pre-existing conditions would, of course, be catastrophic for HIV-positive patients, 30 percent of whom are already uninsured.
Echoing Shafer, Dr. Michael Ohl, an infectious disease specialist at the University of Iowa, says that these patients may sell their Truvada to make ends meet, which will raise their viral load — and their chances of transmission.
By all accounts, I’m fortunate: for being young, healthy and without any pre-existing conditions and for being well-equipped to navigate bureaucracies, able to afford health insurance, and now in a monogamous relationship. If the ACA is repealed, however, others won’t be so lucky, which could jeopardize the last three decades of progress in combating the epidemic.
CORRECTION: An earlier version of this post misstated the amount of the Gilead co-pay discount. It’s $3,600.
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