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About 38,000 Americans develop HIV each year, according to the Centers for Disease Control and Prevention. Two prescription meds—Descovy and Truvada—could sharply reduce that number by preventing the infection in people who take them. But fewer than 1 in 5 of the estimated 1 million people in the U.S. who could benefit from the drugs gets a prescription, in part because of the historically high cost, up to $1,800 a month.
That means hundreds of thousands of people who could benefit from the medication go without. That’s especially true for African Americans and other people of color.
But that could soon change. Most insurers must now cover the cost of the drugs for free and, starting Sept. 19, cover the cost of the services associated with them, including regular HIV tests and doctor's office fees, according to new rules from the Centers for Medicare and Medicaid Services.
Descovy and Truvada—often referred to as PrEP, for “pre-exposure prophylaxis”—are approved for men at high risk of acquiring HIV through unprotected sex or injection drug use. Truvada is also approved for women.
The Biden administration’s action is based on research showing that each drug is up to 99 percent effective at preventing HIV infection. And under provisions established by the Affordable Care Act, insurers must make all preventative care available free to their members.
The step is a welcome development for HIV prevention efforts, says Carolyn Chu, MD, chief medical officer at the American Academy of HIV Medicine, because the number of people currently getting PreP is “lower than what many providers, public health organizations, and advocacy organizations have hoped for.”
There’s also good news for people who don’t have insurance or whose insurance still won't cover the drugs: There's now a generic form of Truvada, which is just as effective and safe as the brand-name version and can be found for about $40 a month.
Still, experts worry that some people who could benefit from the drugs may continue to go without. That's especially true for African Americans and Hispanics, who are much more likely than whites to be diagnosed with HIV but much less likely to talk with a healthcare provider about the drugs, says Devin Barrington-Ward, founder of the Black Futurists Group, a social justice organization in Atlanta.
Chu hopes that making the drugs more affordable may remove some of those barriers. “A significant component of ending the HIV epidemic,” she says, “is ensuring that in addition to medication coverage, communities most at risk for HIV and those with the greatest need have access to care that is free from stigma, and delivered by providers who understand the experiences of the community.”
A Deep Distrust of the Medical System
One reason for the low number of Black people taking Truvada or Descovy for PrEP is that many of them live in states, mainly in the South, that haven't expanded their Medicaid programs, Barrington-Ward says.
“There are 1.6 million Georgians, for example, who don’t have health insurance, many of whom are Black men or people of color, who are not getting access to regular checkups and preventative treatment, much less having conversations about their sexual practices,” he says.
Another reason is a deep distrust of the medical system among some African Americans, especially in the South and especially related to sexual health, Barrington-Ward says. Some of that distrust traces back almost 90 years to an infamous government-funded study in which Black men with syphilis were told that they were being treated for “bad blood,” but didn't receive care for about for 40 years.
“You can’t talk about HIV and other sexual health disparities and not have conversations about that experiment” [the Tuskegee Study of Untreated Syphilis in the Negro Male], Barrington-Ward says. “There are communities in and around metro Atlanta where people have family members or friends who were impacted by the Tuskegee experiments.”
That experience still makes many Black men in the U.S. distrustful of government-funded research related to HIV prevention and treatment, he says, and even of programs designed to make the drugs more affordable.
New Federal Requirements
In 2019 the U.S. Preventive Services Task Force—an independent group that helps the government review medical research on drugs and other treatments—concluded that the benefits of Truvada vastly outweighed its risks, giving the drug an A rating. (Descovy wasn't available in time for that analysis.)
At that same time, Rochelle P. Walensky—then chief of infectious diseases at Massachusetts General Hospital and now director of the Centers for Disease Control and Prevention—wrote an editorial in the Journal of the American Medical Association saying that insurers should cover the drugs for free, noting that federal law requires many insurers to cover any preventive measure that earns a high rating from the task force.
The new CMS mandate applies to Affordable Care Act plans that individuals purchase on their own through state or federal marketplaces, as well as most Medicaid plans. In the 39 states (and Washington, D.C.) that expanded Medicaid in recent years to allow people with higher incomes to enroll, Medicaid will have to cover the full cost of Truvada for PrEP, with no copays or coinsurance. (See whether your state expanded Medicaid.)
Most insurance offered through employers will also have to cover Truvada for PrEP, with one exception, according to CMS: if your employer is “self-insured,” meaning it pays all its own medical bills, and was “grandfathered,” meaning that it got an exception in 2009 when the ACA was passed. Some of those insurers may cover the drug anyway. Contact your human resources department to find out. If your employer doesn't, you can ask if it would consider it.
Nearly all Medicare Part D plans currently cover Descovy, while only some cover either the generic or brand-name versions of Truvada, according to research from GoodRx, which tracks Medicare prescription drug coverage. You’ll need to check before you enroll in a plan during open enrollment toward the end of the year.
If You Don't Have Insurance
Your first step should be to see whether you qualify for your state’s Medicaid program. To apply, go to HealthCare.gov and fill out the screener questions about your monthly income and where you live. Depending on your answers, the site may forward you to your state’s Medicaid program.
In states that expanded Medicaid, the monthly income cutoff for 2021 is $1,481 for an individual and $3,047 for a family of four, according to the Kaiser Family Foundation. In other states, the annual median income limit for Medicaid is about $9,003 for a family of three.
If you don’t qualify for Medicaid, your best bet may be to try to buy generic Truvada, which costs just $40 a month through GoodRx.com. To find the exact price in your location, type in your ZIP code or city to see a list of prices in your area or via mail order.
You can also look into one of these programs:
Ready, Set, PrEP: This federal program offers Descovy and Truvada free to anyone without insurance, regardless of their income level, as long as they have a Social Security number and a prescription. You can apply here or call 855-447-8410.
Once approved, you can fill the prescription at any of the participating pharmacies, which include Albertsons, CVS, Rite Aid, Vons, Walgreens, and Walmart.
Drug manufacturer patient assistance programs: Gilead Sciences makes both drugs available to people who earn less than 500 percent of the federal poverty level—about $64,400 for an individual and $132,500 for a family of four—according to NeedyMeds, a website that tracks major drug manufacturer discount programs. You’ll need to be a U.S. citizen, according to a Gilead spokesperson. Go to the Gilead website or call 800-226-2056, 24 hours a day, 7 days a week.
Patient groups: Several national patient groups offer medical services as well as free or reduced-cost PrEP. They all have different requirements; check to see if you qualify. The Department of Health and Human Services maintains a list of state-specific HIV support groups. Here are some national and regional ones:
Good Days: To apply, you’ll need a Social Security number and have valid Medicare or military insurance that covers at least half of your medical costs, and your income can’t exceed 500 percent of the federal poverty limit. If you meet those requirements, you can get help with out-of-pocket costs for HIV drugs up to $7,500 per year, says Clorinda Walley, president of Good Days. To apply, go to the Good Days website or call 877-968-7233. A healthcare provider, including your pharmacist, can also apply on your behalf.
Patient Advocate Foundation: This nonprofit operates the Co-Pay Relief program, which covers copay costs up to $7,500 for HIV/AIDs treatments, regardless of your insurance, as long as your earnings don’t exceed 400 percent of the federal poverty level (about $51,500 for an individual). Apply at copays.org or call 866-512-3861
AIDS Healthcare Foundation: This group can fill HIV prescriptions free and provide other HIV-related services to people living in California, Florida, Nevada, Ohio, Texas, Washington, D.C., and several other states. You don’t need to be a U.S. citizen to get help, says Adam Sukhija-Cohen, PhD, director of advocacy and policy research at the foundation. Patients simply need a photo ID. Make an appointment for HIV care at hivcare.org, or walk in for free testing for HIV and sexually transmitted diseases—as well as PrEP and post-HIV exposure, or "PEP" services—at AHF’s Wellness Centers. Find one at freestdcheck.org.
If Your Insurance Doesn't Cover PrEP
For people whose plans don't cover PrEP, Gilead also offers a copay assistance program that covers up to $7,200 in copays per year.
Tim Wagner, 54, of Seattle says that last year he used the program to cover his $125 annual drug deductible and the $50 monthly copay, saving him hundreds of dollars. He takes several prescription medications and says he’s always looking to cut his costs when possible.
If you have insurance through your employer but were denied coverage, it’s worth asking for an exception. Gilead says it can help in that process: call 800-226-2056. If needed, ask your doctor to help you file an appeal.
Help With Other HIV-Related Expenses
Note that no matter how you obtain Truvada or Descovy, once you start either medication it’s recommended that you see your doctor every three months for an HIV test. That’s because if you test positive for HIV despite being on the medication, your physician may change or add drugs to your regime. And women must have a pregnancy test. You may also get other tests for sexually transmitted infections, as well as a test to check your kidney and liver functions.
The new CMS mandate now ensures that these tests, as well as the related office visits, will be covered in full as well.
If your insurer isn’t required to cover those costs, or you're uninsured, any of the patient advocacy groups described above, as well as the Ready, Set, PrEP program, can sometimes help with these costs. To find low-cost HIV services, go to hiv.gov.
Editor's Note: This article was updated to include information about the new rule mandating most insurers to cover the cost of PrEP drugs. It was originally published on June 30, 2020.