The Register Citizen (Torrington, CT)
Barriers remain in PrEP use
Drug reduces HIV exposure, but fewer than 10 percent at the most risk take it
NEW HAVEN — As new infections of a “gay cancer” began to spread in the 1980s, White House officials under the Ronald Reagan administration were notoriously derisive, laughing the idea off until 1985 after thousands of mostly gay men had already died.
But today, decades into a global AIDS crisis, the Center for Disease Control and Prevention says a pill known as pre-exposure prophylaxis, taken daily, reduces the risk of getting HIV from sex by more than 90 percent and among people who inject drugs by more than 70 percent.
However, the CDC estimated in March that slightly more than 8 percent of the estimated 1.1 million Americans at substantial risk for HIV filled prescriptions for PrEP in 2015.
“Part of the problem with the uptake is people don’t know about it, so they don’t know to ask, medical providers might not be knowledgeable about it, and anecdotically we know many medical providers are uncomfortable talking to patients about their sexual histories,” said Shawn Lang, deputy director of AIDS CT, a statewide coalition of AIDS-based organizations based in Hartford.
“We have a chance to change the course of this epidemic with a one-a-day pill and I think the beauty of PrEP is, when you’re on it, you see your doctor once every three months,” he said.
Marianne Buchelli, health program supervisor at the state Department of Public Health, said in an emailed statement that the department does not yet have accurate statewide statistics on the use and cost of Truvada, a drug manufactured by Gilead Sciences and the only commercially available form of PrEP.
“There’s a lot that needs to be done on the medical provider side of this,” Lang said.
Tom Butcher, the local project director of the Ryan White CARE Act program, which provides HIV/AIDS services for low-income people in New Haven and Fairfield counties, said he takes PrEP, which is made easier because he attends a gay-oriented health care practice, which, he says are “few and far between.”
“They’re for white, privileged guys like me, for the most part,” he said.
Butcher said a young, low-income black man in Connecticut may not have the same access, opportunities or knowledge base as someone like him.
“It’s up to the providers to understand that young man, to do a sexual assessment, to create an environment where that young man would feel safe to say he’s a gay man and ‘This is the kind of sex I enjoy,’ and let’s talk about risk,” he said.
Cost barriers
According to the state DPH statistics, in the fouryear period after the federal Food and Drug Administration approved Truvada in 2012, the number of annual new infections in Connecticut has not gone down substantially — from 294 in 2012, to 269 in 2016.
However, even with that decline, massive racial gaps exist. According to state data, from 2012 to 2016, the rate of newly reported HIV infections in black residents of Connecticut fell from 36.4 per 100,000 people to 32.8, a number that eclipses the 3 in 100,000 white people newly diagnosed with HIV in 2012, which fell to 2.7 in 2016. In Hispanics, the rate fell from 18.2 per 100,000 in 2012 to 17.1 in 2016.
Young black and Hispanic men who have sex with men and trans women are “really the bullseye of all of this,” Butcher said.
Additionally, Butcher said federal funding is often allocated to areas where the need is greatest, so if Connecticut were to begin cutting into its rate of new diagnoses, it would also see its budget for prevention services and care slashed.
“It’s leaving Connecticut residents behind and putting us behind the eight ball,” he said.
Although the drug pricetracking website GoodRx estimates that 30 pills of Truvada cost about $1,600, a group of activists penned an op-ed in The New York Times arguing that the generic drug in other countries costs $6 for a month’s supply. Activists also argue that, since public funding from the National Institutes of Health largely funded the development of Truvada, Gilead Science’s patent on the drug is unethical and has transformed a drug with potential to end an epidemic into a luxury.
Gilead Sciences reported $5.6 billion in revenues in the second quarter this week, with a net income of $1.8 billion. The company, which markets 25 products, saw its revenue exceed Wall Street expectations, but stock prices fell as the company failed to surpass revenues in prior years. Gilead CEO John Milligan recently announced his resignation after 28 years, saying in a statement that it was a mutually agreed-upon decision with the company’s board of directors.
Butcher, who works with a low-income population — which qualifies for the Ryan White program once they are already infected — said Gilead’s patient assistance programs, including co-pay coupon programs and patient support programs, help to offset costs and make the drug affordable.
Gilead did not return a request for comment Friday.
A spokesman for U.S. Sen. Chris Murphy, DConn., said the senator is “aware of the pricing issue with these and other drugs” but has not had any letters or complaints from Connecticut patients about Truvada.
“(C)urrent federal HIV Prevention funding though the Centers for Disease Control (CDC), prohibits the purchasing of PrEP medications. This is the barrier. People who don’t have insurance or have the type of insurance that will not cover the medication due to cost, are the populations that the department is planning to focus more on in the future,” Buchelli wrote in an email. “Despite this, DPH has concentrated on raising awareness about PrEP, how to access it, and last year piloted several programs with the goal of assisting people to access PrEP services regardless of insurance.”
The DPH announced a public health initiative in June to target new infections in the five municipalities with the largest number of new HIV infections — New Haven, Bridgeport, Hartford, Waterbury and Stamford — called “Getting to Zero.”
“The commission aims to engage with consumers and providers to determine how to most effectively use those tools to reach the G2Z goals of no new HIV infections, no AIDS-related deaths and no more AIDS-related stigma and discrimination. The commission is focused on learning what barriers exist to ending the epidemic,” said Buchelli, of the DPH. “Using a data-driven process, the campaign is focused on three populations at greatest risk (young men of color who have sex with men, African American/ Black women and Transgender Women). The Commission is currently conducting listening sessions with the various groups in each city as well as with other consumers and providers of prevention services.”
According to DPH statistics, the number of new diagnoses in New Haven has not exceeded 40 annually since 2010, but it did not go below 29 between 2011 and 2016. It’s a noticeable decline from the first year of data, where there were 103 reported new diagnoses, a number which didn’t fall below 60 until 2007. In Bridgeport, the annual number of new diagnoses has mostly been level this decade, hovering between 26 and 45, although there were 119 new diagnoses in 2002.
The decline is more noticeable in Hartford, which reported 26 new diagnoses in 2016, down from 43 in 2012 when Truvada was introduced to the market, and from 164 in 2002.
Getting the word out
Lang, of AIDS CT, said the Getting to Zero initiative’s commission, which includes stakeholders local to several communities, can be valuable assets in the fight against new infections.
“We like having more tools in our toolbox,” she said. “I think a lot of people don’t even know about (PrEP).”