“If there is any example of the dysfunction in the American pharmaceutical system, it is this case,” said James Krellenstein, a member of the AIDS advocacy group ACT UP New York. “We have the most effective tool for ending the HIV epidemic, and one reason we’re unable to scale up is because it costs so [much] unnecessarily.”
By Shefali Luthra and Anna Gorman, California Healthline
Public health officials are expanding efforts to get the HIV prevention pill into the hands of those at risk, in a nationwide effort to curb infections. But they’re hitting roadblocks, including the drug’s surging price tag and growing out-of-pocket costs for patients.
Since brand-name Truvada was approved for HIV prevention six years ago, its average wholesale price has increased by about 45 percent. Now, the drug — which rakes in billions of dollars in annual global revenue for its manufacturer, Gilead Sciences — carries a list price of close to $2,000 for a 30-day supply.
Most insurers cover the pill, also known as pre-exposure prophylaxis, or PrEP. It has been shown to be more than 90 percent effective in HIV prevention when taken daily. But private health plans are making patients responsible for a larger share of drug costs. And more are restricting use of the “copay coupons” that pharmaceutical companies have used to shield patients from out-of-pocket expenses.
Insurers say the drug companies use coupons to steer consumers toward pricier meds, so one way they are limiting the use of coupons is by no longer allowing them to count toward patients’ deductibles.
“If there is any example of the dysfunction in the American pharmaceutical system, it is this case,” said James Krellenstein, a member of the AIDS advocacy group ACT UP New York. “We have the most effective tool for ending the HIV epidemic, and one reason we’re unable to scale up is because it costs so [much] unnecessarily.”
HIV provider groups in California are trying to figure out which health plans are making the changes and the impact they have on people taking PrEP, said Courtney Mulhern-Pearson, a senior director at the San Francisco AIDS Foundation.
Many people on PrEP are healthy other than their HIV risk, and are likely to have high-deductible plans, said Anne Donnelly, director of health care policy at Project Inform, a San Francisco advocacy organization.
If patients can’t use the copay card, “there will come a point when people won’t be able to pick up PrEP,” she said.
Jared Wile, who lives in Chicago, started taking PrEP about three years ago, when he was dating someone with HIV. Wile, who has a $2,750 deductible, used a coupon to obtain the drug. He never paid anything out-of-pocket, he said, because Gilead waives up to $4,800 in out-of-pocket expenses for commercially insured patients.
That changed for Wile in May, when he learned the coupon no longer counted toward his deductible and that he would have to pay the full cost of the prescription — $1,600 per month — until he hit his deductible. Wile said he felt “blindsided” and stopped taking the medication.
Gilead spokesman Ryan McKeel said the company helps patients overcome financial barriers so more people can access the medication. He cited assistance programs for uninsured and underinsured people.
“We have designed our assistance programs with the intent that people can benefit from their full value, and we cannot control the actions or decisions of health insurers,” McKeel said in an emailed statement.
The federal Centers for Disease Control and Prevention estimates that more than 1 million people are at high risk of contracting HIV, but Gilead says only about 167,000 people currently take PrEP.
Beyond The Money Crunch
Price is one of many barriers — alongside patients’ lack of awareness and doctors’ hesitation to prescribe — that threaten to exacerbate the already stark disparities in PrEP use and HIV infection rates.
One major disparity is along geographic lines. The South, for example, accounts for over half of new HIV diagnoses but only about 30 percent of new PrEP users, according to data from AIDSVu, which maps HIV disease and PrEP use. HIV rates and PrEP use also vary by race and ethnicity.
Kehinde Elemuren, a nurse practitioner at St. John’s Well Child and Family Center in Los Angeles, said that stigma is a bigger issue than cost for many of his patients. “No one wants to take an HIV medication,” he said. “That’s a barrier.”
Others don’t consider themselves at risk, he said. “They don’t feel like they need it and they don’t want to take a pill every day.”
Gilead has recently gone all-in with advertising to reach people at risk, including print campaigns and TV ads that will air through the summer. Since 2012, it has spent $28 million to fund U.S. organizations that seek to raise awareness of HIV, McKeel, the company spokesman, said.
“We recognize that many people who are at high risk for HIV infection still face challenges in accessing Truvada for PrEP, and we are in regular dialogue with public health officials, advocates and physicians to better understand and, where possible, help to address these challenges,” he added.
Some states — California and Florida among them — have launched PrEP assistance programs that can help patients cover the cost of the medication, along with required lab work and medical visits.
California’s program, run by the state Department of Public Health, helps low-income residents cover the drug costs.
Beyond these state-based programs, some public health departments and HIV service organizations are hiring PrEP navigators to help patients navigate the maze of copays and deductibles, and to improve recruitment and retention of new PrEP users.
Between California’s new assistance program and PrEP navigators, “we are hoping we can increase the uptake,” said Donnelly, of Project Inform in San Francisco.
States are spending millions of dollars on the drug. California’s Medicaid program, for example, spent about $50 million in 2017 and expects the costs to continue climbing. But officials said the expense is offset by long-term savings in preventing new HIV cases.
A Complex Solution, And No Competition
PrEP is only one part of HIV prevention, so help paying for the pill is only one piece of the puzzle.
Patients also need regular HIV testing and medical care, which add to the cost borne both by patients and the health system. Some experts warn that Truvada’s high price point could financially undermine such broad prevention efforts.
Competition could help.
A generic version of the drug, manufactured by Teva Pharmaceuticals, is available abroad and gained approval for use last year from the federal Food and Drug Administration. When it becomes available in the United States, it could bring down prices, though it’s unclear when that will happen. Gilead’s own forecasts reflect that expectation, showing declines in future revenue from Truvada.
For now, though, Truvada is the only PrEP option available in the U.S., said David Howard, a health economist and professor at Emory University, who previously worked in the pharmaceutical industry. “From a company standpoint … their best strategy is to make as much money as they can.”
This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
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