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Some 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 those numbers by preventing the infection in people who take either drug. But fewer than 1 in 5 of the estimated 1 million people in the U.S. who could benefit from the drugs get a prescription, probably in part because of the drugs’ high cost.
That means hundreds of thousands of people who could benefit from the medication go without. That’s especially true for Black Americans and other people of color.
Descovy and Truvada—often referred to as PrEP, for “preexposure prophylaxis”—are approved for men at high risk of acquiring HIV through unprotected sex or injection drug use. When taken daily, each drug is up to 99 percent effective at stopping the infection. Only Truvada is approved for women.
Despite their effectiveness, the number of prescriptions filled for the drugs dropped by 30 percent between 2015 and 2019, according to an analysis by GoodRx, a company that tracks retail prices for prescription drugs.
One contributing reason: For people without insurance, each drug costs more than $1,800 per month. Even people with insurance can have difficulty affording the drugs.
That’s in part because many Americans now have insurance plans that have high deductibles, requiring them to pay $1,400 or more out of their own pocket before coverage kicks in. In addition, for expensive drugs such as Descovy and Truvada, insurers often require patients to pay a percentage, typically about 25 percent, of the drug’s list price, instead of a flat copay fee, says Stacie Dusetzina, Ph.D., a drug cost expert at Vanderbilt University in Nashville, Tenn. With drugs such as Descovy and Truvada, that can add up to thousands of dollars per year.
Insured or not, Blacks and Hispanics are much less likely than other people to take Descovy or Truvada for PrEP, or to even talk with a healthcare provider about them, says Devin Barrington-Ward, founder of the Black Futurists Group, a social justice group based in Atlanta. And that disparity is getting worse, according to a 2019 CDC report. That’s especially worrisome given that 3 out of 4 HIV diagnoses in the U.S. are among racial minorities, according to figures from the Office of Minority Health in the Department of Health Human Services.
Some relief could be on the way. Starting in 2021, most insurance plans will be required to cover at least one of the drugs, Truvada, with no or low copays, says Jeffrey Kirchner, D.O., chief medical officer of the American Academy of HIV Medicine and an HIV specialist at Lancaster General Hospital in Pennsylvania. And starting in September 2020, Truvada will be available as a generic, with prices expected to drop starting in spring 2021, Dusetzina says. (A generic form of Descovy isn’t expected until 2032.)
Until those changes are in place, there are several ways consumers can get low-cost or even free versions of Descovy or Truvada for PrEP.
Here’s more about the special challenges faced by Black Americans, changes coming to make the drugs more affordable, and what you can do now to get the lifesaving drugs at low or no cost.
A Deep Distrust of the Medical System
One reason for the low number of Black men taking Truvada or Descovy for PrEP is that many of them live in states, mainly in the South, that have not expanded their Medicaid programs, says Barrington-Ward of the Black Futurists Group.
“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 Black Americans, especially in the South and especially related to sexual health, Barrington-Ward says. That distrust traces back almost 90 years to an infamous government-funded study in which Black men with syphilis were told that they would be treated for “bad blood,” then were not treated at all for some for 40 years.
“You can’t talk about HIV and other sexual health disparities, and not have conversations about that experiment” (which was called 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.
Feds to Require Insurance Coverage by 2021
Last year, 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 was not available in time for that analysis.)
That’s important because federal law requires many insurers to cover any preventive measure that earns a high rating from the USPSTF, Rochelle P. Walensky, M.D., writes in an editorial in the Journal of the American Medical Association. (Walensky is the chief of the division of infectious diseases at Massachusetts General Hospital and co-director of its Medical Practice Evaluation Center.) Patients can also expect little or no out-of-pocket cost for Truvada.
That 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 37 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: 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.
Medicare Part D plans won’t have to cover it at a low cost, though some still may. You’ll need to check before you enroll in a plan during open enrollment toward 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 income cutoff is $1,467 for an individual or $3,013 for a family of four, according to the Kaiser Family Foundation. In other states, the annual median income limit for Medicaid is about $8,700 for a family of three.
If you don’t qualify for Medicaid, here are some programs that can help people without insurance.
Ready, Set, PrEP: This federal program, run by the HHS, offers Descovy and Truvada free. It’s available to anyone without insurance, regardless of their income level, so 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, Walmart, and others.
Drug manufacturer patient assistance program: Gilead Sciences makes both drugs available to people who earn less than 500 percent of the federal poverty—about $63,800 for an individual or $131,000 for a family of four—according to NeedyMeds, a website that tracks major drug manufacturer discount programs. You’ll also 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. HHS maintains a list of state-specific HIV support groups. Here are some national and regional ones.
If You’re Insured
Gilead also offers some financial help to people who do have insurance but still need help to pay for the drug.
Many insurance plans, especially those offered by employers, require people to pay a percentage of the cost of the drugs, typically 25 percent, says Dusetzina at Vanderbilt. Because Descovy and Truvada are so expensive, that can leave you on the hook for hundreds of dollars per month. To bring that expense down, Gilead offers a copay assistance program that covers up to $7,200 in copays per year.
Tim Wagner, 54, of Seattle says he uses the Gilead copay program to cover his $125 annual drug deductible and the $50 monthly copay, saving him hundreds of dollars per year. He takes several prescription medications and says he’s always looking to cut his costs when possible.
There is one hitch: Once the cost of the drug exceeds your annual deductible, you might have to cover the deductible cost again, according to NeedyMeds. For example, the out-of-pocket cost for Truvada is about $1,800 per month. So if you have a deductible of $7,200, the assistance from Gilead will stop after four months.
You can apply here for Gilead’s copay assistance program. Note that people on Medicaid or Medicare, and those who get insurance through Tricare or another form of federal health insurance, aren’t eligible, according to a Gilead spokesperson. And the company could cancel the program whenever it chooses.
If you have insurance through your employer but have been denied coverage completely for PrEP, it’s worth asking for an exception. Gilead says it can help in that process. For assistance from the company, call 800-226-2056. 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 physicians may change or add drugs to your regime. And women must have a pregnancy test. You may also receive other tests for sexually transmitted infections, as well as a test to check your kidney and liver functions.
All that other care can also be expensive and is another reason people may avoid taking Truvada or Descovy in the first place. Many 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.
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- Good Days: To apply you’ll need a Social Security number and have valid Medicare or military insurance coverage 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. Your healthcare provider, including your pharmacist, can also apply on your behalf.
- Patient Advocate Foundation: This nonprofit operates the Co-Pay Relief program, which also 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 $51,000 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 a dozen other states. To get help, you don’t need to be a U.S. citizen, says Adam Sukhija-Cohen, Ph.D., director of advocacy and policy research at the AIDS Healthcare Foundation. Patients simply need a photo ID. Make an appointment for HIV care at AHF Healthcare Centers 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.
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