New York’s state health department is estimating that in the first five months of this year more than 3,000 people on Medicaid were taking an anti-HIV drug to avoid becoming infected with the virus that causes AIDS.
“For the period January 2014 through May 2014, the State Health Department estimates that 3,149 Medicaid recipients were on HIV pre-exposure prophylaxis (PrEP),” a department spokesman wrote in an email. “Data regarding the number of privately insured individuals on PrEP are not available.”
Estimates in two studies by Gilead Sciences, the company that manufactures and markets Truvada, the only drug approved for PrEP, were much lower. Using pharmacy data, the company estimated that 2,319 “unique individuals” across the nation started PrEP between January 1, 2012 and September 30, 2013. That increased from the estimated 1,774 “unique individuals” starting PrEP between January 2011 and March 2013. There is overlap between the two estimates, and it is unknown how many of those individuals are still taking the drug. In its most recent study, Gilead estimated that 570 “unique PrEP users” began the treatment in the entire Northeast during that period, accounting for 25 percent of all new users across the US.
The disparity between the Gilead estimate and the state health department estimate was so great that Gay City News asked the department to reconfirm it. On July 2, Bill Schwarz, who heads the press office at the department, wrote, “I did confirm… that the number we provided is the Department’s estimate of negatives on Truvada.”
The Food and Drug Administration approved Truvada for PrEP in 2012. The once-a-day pill is taken by people who do not have HIV and is highly effective at preventing HIV infection if the dosing schedule is followed.
Failed adherence, however, was a serious issue in PrEP studies.
AIDS activists and advocates have been concerned since the FDA approval that few people were using the HIV prevention tool. They offer various reasons for people not taking the drug, including gay men fearing they would be seen as promiscuous if it were known they were on the drug and people simply not knowing about the intervention.
“I’m surprised at how high it is,” said Jim Eigo, a member of ACT UP New York, an AIDS activist group. “It’s the biggest I’ve heard.”
While 3,149 is still a small number, it suggests that far more people may be taking the drug than advocates previously knew and that there may be a greater willingness to use PrEP than was previously known.
The higher estimate comes as Governor Andrew Cuomo endorsed a plan to use new laws and HIV prevention tools, including PrEP, to reduce the number of new HIV infections in New York from roughly 3,400 in 2013 to 730 or fewer in 2020.
This plan to end AIDS, which is supported by more than 30 AIDS groups, also envisions increasing HIV testing, increasing the number of HIV-infected people who are in treatment and have an undetectable amount of virus in their blood making them far less infectious, and greater use of post-exposure prophylaxis (PEP), a 28-day course of anti-HIV drugs that prevents infection in someone with a recent exposure to HIV.
After leaking endorsement of the plan to the New York Times, which reported it in a June 28 story, Cuomo formally announced his support prior to the start of New York City’s Pride parade on June 29. In a press scrum, Cuomo, who was joined by Dr. Howard Zucker, the interim state health commissioner, said the plan would rely on more testing, more treatment, and PrEP. The state has negotiated lower prices with a number of drug companies, including Gilead, to make the plan economically feasible.
“We’ve worked with drug companies to make the drugs more affordable,” he said.
AIDS groups, notably Housing Works, had announced on June 26 that they would hold a press conference prior to the start of the parade to demand that Cuomo support the plan. Instead, they praised him, though the groups are pressing for a task force to spell out the specifics of the plan.
“We can end AIDS as an epidemic without a cure,” said Matthew Bernardo, chief operating officer at Housing Works, at the press event. He was joined by other AIDS groups and advocates, including ACT UP, Harlem United, the Treatment Action Group, Gay Men’s Health Crisis, VOCAL-NY, and State Senator Brad Hoylman, an out gay Democrat who represents the West Village, Chelsea, and Hell’s Kitchen.
“We have the science, we have the technology to solve this crisis,” Hoylman said. “We do need a task force.”
Missing from Sunday’s announcements was Mayor Bill de Blasio. Since the great majority of the state's new HIV infections occur in New York City, the city’s participation is a requirement for success. Dan Tietz, chief special services officer at the city’s Human Resources Administration, read a statement at the groups’ press conference that had the mayor endorsing the plan, but de Blasio himself has not made a statement. Tietz headed ACRIA, an AIDS group, until two weeks ago.
Activists also urged Gay City News to contact the White House for a response to Cuomo’s announcement. The White House was ready with a statement from Douglas Brooks, director of the White House Office of National AIDS Policy.
“The White House applauds Governor Cuomo’s naming of a task force to develop a comprehensive plan to end HIV/ AIDS in New York State by 2020,” the statement read. “We look forward to working with Governor Cuomo on this important initiative. The President's National HIV/ AIDS strategy lays out a path for us all to work together to achieve an AIDS-free generation, and we welcome efforts to accomplish that goal.”