Every morning Ryan Nistler, a 34-year-old Bostonian, swallows a little blue pill. The drug doesn’t alter his mental state. It doesn’t alleviate any illness. Yet he considers it essential to his well-being.
Nistler’s morning pill is called Truvada, and it prevents him from getting HIV. Also known as PrEP — for pre-exposure prophylaxis — the medicine serves as a backstop to other methods of avoiding infection for those who are at high risk. It’s considered one of the most significant advances in the fight against AIDS.
Although Truvada was approved as a preventive drug four years ago, less than one-tenth of those who could benefit from it take the drug. The need is greatest among blacks and Latinos, who are disproportionately affected by AIDS, and gay men under 30, whose rates of infection are growing.
That’s why Massachusetts public health officials recently started a project with AIDS service agencies and health centers, testing ways to bring PrEP into wider use. That effort got a boost last week when the Planned Parenthood League of Massachusetts started offering PrEP to its patients, men and women.
PrEP is made of two drugs originally developed to treat people after they became infected with the virus that causes AIDS. Years ago, researchers started investigating whether the medications could also prevent people from getting the virus in the first place.
Critics questioned the wisdom of giving powerful drugs to healthy people, and worried that access to a preventive drug would encourage promiscuity or lead to a spike in other sexually transmitted diseases by reducing condom use.
But as study after study — some conducted in Boston — found the drug safe and effective, public health officials came to embrace PrEP, concluding the benefits exceed the hazards. The US Centers for Disease Control and Prevention estimates that some 1.2 million people at risk of HIV infection should at least consider PrEP.
While condom use and clean needles can also prevent the spread of HIV, PrEP has been shown to be effective 92 to 99 percent of the time, said Dawn Fukuda, director of the Office of HIV/AIDS at the Massachusetts Department of Public Health.
“No HIV prevention method is 100 percent perfect and we know that no person is 100 percent perfect,” Fukuda said. “In a world where we don’t have perfection, having HIV prevention that is 92 to 99 percent effective is extraordinary. It would be unethical not to expand access to this intervention.”
From 2000 to 2014, Massachusetts saw a 47 percent drop in the number of people newly infected with HIV each year. But that decline is starting to level off, Fukuda said.
Nistler, a pharmaceutical researcher and a gay man, has been taking PrEP for four years, and said it changed his life.
“Ever since I first came out, the general consensus, the general idea, is that sex is very dangerous,” he said. “There was always that sense of trepidation.”
“For the first time,” he said, “I felt relaxed.”
Why not just use condoms? Nistler said he does — and like all PrEP users was counseled to continue doing so. But he said condoms sometimes break, and people sometimes neglect them in the heat of the moment.
PrEP has the potential to advance what activists call “getting to zero” — eliminating the transmission of HIV, said Carl Sciortino, executive director of the AIDS Action Committee of Massachusetts.
“It’s a total game-changer,” he said, especially when combined with new drugs that suppress the virus to the point that infected people no longer transmit it.
But even so, people need to be recruited and coaxed. In 2012, the first year PrEP was on the market, only 6,210 people nationwide started the drug, according to data from Truvada’s maker, Gilead Sciences.
By the end of 2015, more than 79,000 people had started PrEP since the regimen was introduced. A higher percentage of people take PrEP in Massachusetts than in any other state — but that percentage is minuscule, 0.07 percent or just 4,950 people, according to Gilead’s data. And many states with higher rates of HIV transmission have fewer people taking PrEP.
What’s the problem? One obstacle is that PrEP, which is made of two drugs that treat HIV, is familiar primarily to specialists treating patients who are already infected, instead of people at risk. Primary care doctors often don’t know enough about PrEP to feel comfortable offering it.
Another challenge is the commitment required: In addition to taking a daily pill, patients must come back every three months to test for HIV and other sexually transmitted diseases, and to check for kidney problems, an uncommon but serious side effect.
And cost can be an obstacle. The list price for the drug is $1,500 a month, although most insurers negotiate discounts. Nearly everyone in Massachusetts has health insurance that covers it, but many have plans with high deductibles, leaving them with significant out-of-pocket costs for the drugs and the testing.
The state’s newly launched PrEP project includes an allocation of $50,000 — in total — to help patients with their out-of-pocket costs.
Otherwise, Fukuda said, no new money is involved. Instead, the state is working with 12 agencies that already have contracts to provide HIV prevention and treatment services, asking them to try out ways to broaden access to PrEP.
For example, Boston Medical Center has reallocated resources to hire a nurse practitioner to work with people who have sought testing for sexually transmitted diseases, said Dr. Meg Sullivan, director of HIV Clinical Programs. Many of these people don’t have HIV but are at risk for it. Having a dedicated nurse will open additional appointment times to accommodate them.
Fukuda said she is particularly concerned with reaching young gay men, whose HIV infection rates are increasing, as new treatments lessen the fear of AIDS. In 2005, 79 men younger than 30 tested positive for HIV as a result of having sex with other men. In 2014, that number had risen to 118, and represented 41 percent of all new infections in Massachusetts attributed to men having sex with men. Gilead’s data show that only 11 percent of men taking PrEP were younger than 25.
The state is also seeking to reach blacks, who represent 30 percent of Massachusetts residents living with AIDS, and Latinos, who account for 25 percent — a burden hugely disproportionate to these groups’ share of the state’s population.
Planned Parenthood, although not part of the state’s project, may help reach other populations in its six clinics across the state.
Although Planned Parenthood is often regarded as a women’s health care provider, Dr. Jennifer Childs-Roshak, CEO of Planned Parenthood League of Massachusetts, said 12 percent of its patients are men, and more than 30 percent of those who seek HIV tests are men. Women are at risk of HIV as well, and Planned Parenthood will offer PrEP to transgender women, women who have HIV-positive partners, and female sex workers.Felice J. Freyer can be reached at firstname.lastname@example.org.
Correction: An earlier version of this story incorrectly described the medication to prevent HIV. It is called pre-exposure prophylaxis. The story also incorrectly described the number of new HIV infections among men under 30 in Massachusetts. Those numbers -- 79 cases in 2005 increasing to 118 cases in 2014 -- refer to the number of new HIV infections only among men who have sex with men. The 118 cases represent 41 percent of new infections attributed to men having sex with men.