Bar­ri­ers re­main in PrEP use

Drug could help end new HIV in­fec­tions

New Haven Register (Sunday) (New Haven, CT) - - FRONT PAGE - By Brian Zahn

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 Cen­ters 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, some­thing 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 costs 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, D-Conn., 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 through 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).”

Butcher said he spoke to a young gay man in New York City who said he was aware of PrEP be­cause of the preva­lence of ad­ver­tise­ments on the sub­way. Lang said she saw a com­mer­cial on tele­vi­sion for PrEP and felt sur­prised and ex­cited at see­ing the drug dis­cussed on a main­stream plat­form.

In fact, Gilead launched its first branded ad for PrEP in 2016, four years af­ter its ver­sion of the drug was ap­proved. That year, it spent $450,000 ad­ver­tis­ing Tru­vada, mostly to gay black and Latino men, trans­gen­der women and cou­ples in which only one of the part­ners has a pos­i­tive di­ag­no­sis for HIV/AIDS, ac­cord­ing to MM&M. By com­par­i­son, the com­pany spent $101 mil­lion in 2016 ad­ver­tis­ing its hep­ati­tis-C treat­ment.

Mara Lavitt / Hearst Con­necti­cut Me­dia file photo

The 2007 AIDS Walk fundraiser start­ing up at Chapel Street in New Haven.

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