Why Life-Saving Drugs Haven’t Ended AIDS in America

Meet the team that’s taking on HIV in Miami’s hardest-hit neighborhoods.

Mobile Borinquen Health Care Center is pictured in January 2014.
National Journal
Sophie Quinton
Feb. 19, 2014, 12:05 a.m.

MIAMI — The glit­ter­ing sky­scrapers seen from the streets of Over­town may as well be vis­ions from an­oth­er plan­et. The largely Afric­an-Amer­ic­an neigh­bor­hood has among the highest poverty rates in Miami. At night, chil­dren bi­cyc­ling up and down the side­walk pass drug users light­ing up in plain view.

One re­cent Thursday even­ing, a mo­bile clin­ic pulled up out­side a bar in Over­town and about four out­reach spe­cial­ists got out. They handed out con­doms, chat­ted with loc­als, and en­cour­aged listen­ers to head in­side the van for free, fast HIV test­ing and oth­er screen­ings. At one point, a couple of spe­cial­ists ran in­to the street and helped a fall­ing-down drunk wo­man out of the path of an on­com­ing bus.

On a team known for ded­ic­a­tion and street sense, out­reach spe­cial­ist Don­ald Crews is con­sidered something of a mas­ter. He’s the quiet, fath­erly pres­ence who knows where to park the van, whom to ap­proach, and whom to avoid. He’s the guy who will not only help the dan­ger­ously drunk wo­man out of the road but who will sit with her un­til the am­bu­lance ar­rives. “I can really con­nect with the people, as I’ve been there and done that,” Crews says. He be­came in­volved in out­reach work after kick­ing a crack co­caine habit of his own.

(Cen­ters for Dis­ease Con­trol and Pre­ven­tion)

Six days a week, Borin­quen Med­ic­al Cen­ters of Miami Dade’s mo­bile clin­ic heads to neigh­bor­hoods where doc­tors are scarce. The pro­gram’s goal is to find HIV-pos­it­ive men and wo­men and link them to med­ic­al care as quickly as pos­sible. Com­bat­ing the spread of HIV in Miami’s most dis­ad­vant­aged neigh­bor­hoods starts with test­ing and de­pends on build­ing trust.

Lack of Ac­cess to Care Drives the HIV Epi­dem­ic

HIV, the sexu­ally trans­mit­ted and blood-borne vir­us that leads to AIDS, can now be as man­age­able a con­di­tion as dia­betes. The key word is “can.” In Flor­ida, the HIV death rate is al­most 10 times high­er for Afric­an-Amer­ic­an and Afro-Carib­bean res­id­ents than it is for whites. Na­tion­wide, minor­it­ies are more likely to be­come in­fec­ted with HIV, less likely to be know they’re HIV pos­it­ive, and less likely to be con­sist­ently tak­ing the an­ti­ret­ro­vir­al med­ic­a­tion needed to sup­press the vir­us.

The Obama ad­min­is­tra­tion wants to re­duce ra­cial dis­par­it­ies in in­fec­tion and treat­ment, and has called on fed­er­al agen­cies to work to­geth­er to meet that goal. Borin­quen, a com­munity health cen­ter that primar­ily serves low-in­come black and Latino cli­ents, knows firsthand that tak­ing on HIV also means ad­dress­ing the over­lap­ping prob­lems of sub­stance ab­use, men­tal health, and stigma.

Miami ranks second in the coun­try both in the num­ber of res­id­ents liv­ing with HIV and in the num­ber of new in­fec­tions. Here and na­tion­wide, the hard­est-hit pop­u­la­tions are black people and gay men. New in­fec­tions are of­ten linked to drug use, primar­ily be­cause people have ris­ki­er sex when they’re high. A re­cent study from Fort Laud­er­dale’s Nova South­east­ern Uni­versity found that, of gay men who moved to South Flor­ida and got in­volved in the area’s drug-fueled party scene, about 30 per­cent be­came HIV pos­it­ive with­in five years of their ar­rival.

While risk-tak­ing be­ha­vi­or helps fuel the epi­dem­ic, it doesn’t ex­plain ra­cial dis­par­it­ies. To un­der­stand why not, it helps to take a look at the U.S. pop­u­la­tion hard­est hit by HIV: black men who have sex with men. That group, com­pris­ing less than 1 per­cent of the pop­u­la­tion, ac­counts for one in three new HIV dia­gnoses. Yet the Cen­ters for Dis­ease Con­trol and Pre­ven­tion has found that black gay men are no more likely to en­gage in risky sex or to use drugs than oth­er gay men. (Cen­ters for Dis­ease Con­trol and Pre­ven­tion)

Al­most cer­tainly, the dis­par­ity is driv­en by the fact that Afric­an-Amer­ic­ans are less likely to re­ceive med­ic­al care, says Ron­ald Stall, pro­fess­or at the Uni­versity of Pitt­s­burgh Gradu­ate School of Pub­lic Health. Dis­par­it­ies ex­ist “around find­ing out wheth­er you’re HIV pos­it­ive; and if you’re pos­it­ive get­ting in­to care; and if you’re in care be­ing able to achieve an un­detect­able vir­al load,” he says.

Be­cause black gay men tend to get dia­gnosed later, they’re sick­er when they are dia­gnosed and their sur­viv­al rates are lower. HIV pos­it­ive people who are out of care are also sig­ni­fic­antly more likely to in­fect oth­ers, be­cause they’re not tak­ing med­ic­a­tion that both sub­stan­tially re­duces the pres­ence of HIV in their bod­ies and the risk of trans­mit­ting the vir­us. Adding fuel to the fire, Stall says, is that race is a strong pre­dict­or of whom Amer­ic­ans will have sex with.

The avail­ab­il­ity of life-sav­ing med­ic­a­tions has made many people apathet­ic about HIV test­ing. But people at high risk of in­fec­tion — gay men, drug users, sex work­ers — should be get­ting tested every three months. Med­ic­ally un­der­served com­munit­ies need ac­cess to both test­ing and treat­ment.

Borin­quen’s Re­sponse

Borin­quen Med­ic­al Cen­ters of Miami-Dade star­ted its out­reach pro­gram in 2001. Fun­ded through fed­er­al grants, the pro­gram cur­rently in­volves two vans, 19 staff mem­bers, and a fo­cus on sub­stance-ab­use pre­ven­tion. Out­reach spe­cial­ists are re­cruited loc­ally, as the Na­tion­al In­sti­tute of Drug Ab­use sug­gests. Al­most all of the spe­cial­ists are bi­lin­gual, and most are flu­ent in three lan­guages: Eng­lish, Span­ish, and Haitian Creole.

Last year, the team con­duc­ted 5,100 HIV tests and con­nec­ted 120 people to care at one of Borin­quen’s sev­en loc­a­tions. Typ­ic­ally, about 3 to 4 per­cent of people who re­ceive an HIV screen­ing test pos­it­ive.

To re­duce the stigma of HIV test­ing, Borin­quen rolls it in­to a bundle of oth­er tests, in­clud­ing screen­ings for hep­at­it­is, blood pres­sure, and gluc­ose. Res­ults are pro­cessed in 15 to 20 minutes. In Over­town, it didn’t take long be­fore res­id­ents star­ted form­ing a loose line out­side the mo­bile clin­ic. “Where are my fa­mil­i­ar faces?” one young wo­man asked, re­cog­niz­ing the van but not the out­reach spe­cial­ists out­side it.

The van doesn’t leave a neigh­bor­hood un­til res­id­ents lose in­terest. Once, the team stayed at a trail­er park un­til mid­night in or­der to serve a large group. “It was al­most a mob, not a line,” re­calls Blanca Galvez, an in­de­pend­ent eval­u­at­or of Borin­quen’s pro­gram who some­times travels with the team. To leave be­fore every­one wait­ing had seen a med­ic­al as­sist­ant would have been a be­tray­al. “If you were ever plan­ning on com­ing back to that area, you couldn’t just leave,” Galvez says.

Win­ning the trust of loc­al com­munit­ies makes what comes next pos­sible. When someone tests pos­it­ive for HIV, the out­reach spe­cial­ist who de­liv­ers the news also shares his or her cell-phone num­ber, so the re­cently dia­gnosed per­son can call when ready to get in­to treat­ment.

Re­ac­tions to a dia­gnos­is range from fear to deni­al to in­dif­fer­ence, out­reach spe­cial­ist Moises Hernan­dez says. Some people fear cost of the treat­ment more than the vir­us it­self. Some are too de­pressed to care. While the mo­bile van lingered in Over­town, an an­dro­gyn­ous, stick-thin per­son got up close to Galvez and muttered, “Do you think that in my hor­rible life, hav­ing HIV is my only f—-ing prob­lem?”

In the Haitian com­munity, the stigma sur­round­ing HIV is so deep that people can be ex­tremely re­luct­ant to get care — and if they do, they some­times don’t tell their spouses. “We are see­ing a lot of Haitians that have come in very sick in­to our clin­ic, be­cause they have AIDS,” says Bar­bara Ku­bilus, chief spe­cial pro­grams of­ficer at Borin­quen Med­ic­al Cen­ters of Miami-Dade.

Typ­ic­ally, Hernan­dez says, once a cli­ent reaches out it takes about three months to con­vince the cli­ent to see a doc­tor and about three more to get the cli­ent com­fort­able with com­ing in to Borin­quen’s chron­ic care cen­ter reg­u­larly for ap­point­ments and pre­scrip­tion re­fills. When cli­ents first come in to meet with a doc­tor, they sign a re­lease al­low­ing Borin­quen staff to come to their house and find them if they stop show­ing up.

Borin­quen works to make care as af­ford­able and ac­cess­ible as pos­sible. The med­ic­al cen­ter helps cli­ents sign up for health care cov­er­age un­der the fed­er­al Ry­an White HIV/AIDS pro­gram, Medi­caid, or in­sur­ance on the new state ex­changes, and it charges un­in­sured cli­ents ac­cord­ing to their abil­ity to pay. Borin­quen helps home­less cli­ents find shel­ter, con­nects drug ad­dicts to res­id­en­tial treat­ment, and will provide free trans­port­a­tion to and from ap­point­ments. Each HIV pos­it­ive cli­ent is as­sessed by a be­ha­vi­or­al health spe­cial­ist, as­signed a case man­ager and a primary care doc­tor, and med­ic­al pro­fes­sion­als share health re­cords in­tern­ally to co­ordin­ate a pa­tient’s care.

Still, some pa­tients slip through the cracks. Al­though Borin­quen’s six-month fol­lowup rate with HIV-pos­it­ive cli­ents is 90 per­cent, 62 of the 120-HIV pos­it­ive people who re­ceived care at Borin­quen last year have since stopped com­ing in for treat­ment. An­ti­ret­ro­vir­al drugs are so valu­able on the black mar­ket that some cli­ents choose to sell their medi­cines for cash.

Many HIV-pos­it­ive men and wo­men need lo­gist­ic­al and emo­tion­al sup­port as much as they need medi­cine. When new cli­ents are brought to Borin­quen, the first per­son they meet might be An­gel Ca­macho. “There’s no reas­on why any­one should have to die from HIV,” Ca­macho, a pre­ven­tion case man­ager, tells them. He should know. He’s liv­ing with HIV him­self.

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