UN­EX­PECTED sur­vivors

Grow­ing num­ber of ag­ing HIV/AIDS pa­tients cre­ates new chal­lenges for providers

Modern Healthcare - - NEWS - By Steven Ross John­son

For in­fec­tious-dis­ease spe­cial­ist Dr. Ni­cholas Van Sick­els, treat­ing HIV in his older pa­tients re­quires him to know much more than how to keep white blood cell counts high. In ad­di­tion to man­ag­ing HIV med­i­ca­tions, a typ­i­cal visit may in­clude pre­scrib­ing blood pres­sure med­i­ca­tion to con­trol pa­tients’ hy­per­ten­sion, or putting them on a statin to lower choles­terol.

Older pa­tients of­ten have mul­ti­ple things go­ing on, and you need to have kind of a holis­tic ap­proach to tak­ing care of them and not just fo­cus on the HIV alone.” DR. JONATHAN APPELBAUM PRO­FES­SOR OF IN­TER­NAL MEDICINE AT FLORIDA STATE UNIVER­SITY AND CO-PRIN­CI­PAL IN­VES­TI­GA­TOR OF THE HIV AND AG­ING CON­SEN­SUS PROJECT

“We’re hav­ing to get bet­ter at chronic dis­eases be­cause our pop­u­la­tion is liv­ing longer and ag­ing,” said Van Sick­els, an as­sis­tant pro­fes­sor of clin­i­cal medicine at Tu­lane Univer­sity. “It forces me and other (in­fec­tious-dis­ease) physi­cians to be upto-date on hy­per­ten­sion guide­lines, choles­terol guide­lines and on di­a­betes-man­age­ment guide­lines.”

Med­i­cal ad­vances in an­tiretro­vi­ral drug ther­apy and in­creased ac­cess to spe­cial­ized care have ex­tended the lives of many peo­ple liv­ing with the virus. But this longevity also has brought new health chal­lenges not widely con­sid­ered dur­ing the early days of the HIV epi­demic.

Older pa­tients with HIV face higher rates of car­dio­vas­cu­lar dis­ease, di­a­betes, hy­per­ten­sion, im­paired cog­ni­tive func­tion, can­cer, frailty and be­hav­ioral health disor­ders than those of the same age with­out HIV— and thus higher costs.

Such con­di­tions also ap­pear to af­fect HIV pa­tients at an ear­lier age com­pared with the gen­eral pop­u­la­tion.

A study pub­lished last year in the Jour­nal of Clin­ico-Eco­nom­ics and Out­comes Re­search found that HIV pa­tients be­tween ages 41 and 50 had higher rates of bone frac­ture and re­nal fail­ure than HIV-neg­a­tive peo­ple over age 60.

“We have no real track record with this,” said Dr. Stephen Boswell, CEO of Bos­ton­based com­mu­nity health cen­ter Fen­way Health, which serves the city’s les­bian, gay, bi­sex­ual and trans­gen­der pop­u­la­tion. “HIV pa­tients in their 60s, 70s and 80s are some­thing new, so we have to study it and put a sys­tem in place to re­ally look for things that we might not ex­pect.”

The com­plex­i­ties of pro­vid­ing care are com­pounded by the pro­jected in­crease in the num­ber of older HIV pa­tients. Of the es­ti­mated 1.3 mil­lion peo­ple liv­ing with HIV in the U.S. in 2010, half are ex­pected to be age 50 and older by 2015, ac­cord­ing to the Cen­ters for Dis­ease Con­trol and Pre­ven­tion. As many as 50,000 new HIV cases are di­ag­nosed in the U.S. each year.

“We are learn­ing as we go along,” said Daliah Me­hdi, chief clin­i­cal of­fi­cer at the AIDS Foun­da­tion of Chicago. “We don’t have the body of re­search around treat­ing and liv­ing with HIV in older adults that we do in younger adults.”

The wide-rang­ing med­i­cal and so­cial needs fac­ing the ag­ing pop­u­la­tion liv­ing with HIV/AIDS were the driver be­hind a project that has pro­vided the first set of clin­i­cal treat­ment strate­gies for man­ag­ing older HIV pa­tients.

Started in 2011, the HIV and Ag­ing Con­sen­sus Project is a joint col­lab­o­ra­tion be­tween the Amer­i­can Academy of HIV Medicine, the Amer­i­can Geri­atrics So­ci­ety and the AIDS Com­mu­nity Re­search Ini­tia­tive of Amer­ica. It was de­signed to of­fer guid­ance for providers serv­ing the first gen­er­a­tion of HIV pa­tients who have lived with the dis­ease be­yond the age of 50.

A spe­cial pop­u­la­tion

“Older pa­tients of­ten have mul­ti­ple things go­ing on, and you need to have kind of a holis­tic ap­proach to tak­ing care of them and not just fo­cus on the HIV alone,” said Dr. Jonathan Appelbaum, a pro­fes­sor of in­ter­nal medicine at Florida State Univer­sity, who served as co-prin­ci­pal in­ves­ti­ga­tor of the treat­ment rec­om­men­da­tions. “The av­er­age clin­i­cian per­haps may not be aware of some of the is­sues about treat­ing older (HIV) pa­tients. We’re try­ing to make them more aware that it is in fact a spe­cial pop­u­la­tion.”

In the 1980s and ’90s, the fo­cus was pri­mar­ily on treat­ing ag­gres­sive in­fec­tions when they arose and pro­vid­ing pal­lia­tive care dur­ing a pa­tient’s fi­nal days.

In 1996, the highly ac­tive an­tiretro­vi­ral ther­apy, or HAART, was in­tro­duced, a break­through that had an im­me­di­ate im­pact. By 1997, HAART had trans­formed HIV/AIDS from a dis­ease that was a lead­ing cause of death among adults ages 25 to 44 to a more man­age­able chronic dis­ease. The rate of mor­tal­ity fell from its 1995 peak of 16.2 deaths per 100,000 peo­ple to 2.6 deaths by 2010, ac­cord­ing to the CDC. There was a tran­si­tion in treat­ment to ap­proach­ing HIV/AIDS as a chronic dis­ease that can be man­aged for years if not decades.

His­tor­i­cally, HIV re­search and clin­i­cal tri­als of drug ther­a­pies have fo­cused on younger adults be­cause of the need to re­duce con­found­ing co-mor­bid­ity fac­tors in eval­u­at­ing ther­a­pies, Me­hdi said. “When you com­bine that with our so­ci­ety’s in­vis­i­bil­ity of older adults, they’ve just been sys­tem­at­i­cally ex­cluded from re­search,” she said.

HIV drug treat­ment alone re­mains ex­pen­sive, cost­ing be­tween $2,000 and $5,000 a month, with an­nual costs as­so­ci­ated with health­care uti­liza­tion for such pa­tients of about $23,000, ac­cord­ing to the CDC. A life­time of HIV treat­ment is es­ti­mated to cost more than $367,000 per pa­tient.

Cov­er­ing the costs of this care is a chal­lenge. Na­tion­ally, as many as 70% of older HIV pa­tients live alone and many are on Med­i­caid, said Stephen Karpiak, se­nior direc­tor for re­search and eval­u­a­tion for the AIDS Com­mu­nity Re­search Ini­tia­tive of Amer­ica. Such eco­nomic in­sta­bil­ity has

Even on good an­tiretro­vi­ral ther­apy, it’s hard on the body to have HIV in­fec­tion for decades.” DR. WAYNE MCCORMICK PRES­I­DENT OF THE AMER­I­CAN GERI­ATRIC SO­CI­ETY AND PRO­FES­SOR OF MEDICINE AT THE UNIVER­SITY OF WASH­ING­TON

led to nearly half of those pa­tients not re­ceiv­ing reg­u­lar HIV care.

In 2012, Med­i­caid spent $5.3 bil­lion on HIV care, with 36% of that fed­eral spend­ing go­ing to treat­ing the dis­ease, ac­cord­ing to the Kaiser Fam­ily Foun­da­tion. Medi­care spent $5.9 bil­lion, ac­count­ing for 39%. States spent $4.3 bil­lion. Fi­nan­cial sup­port for HIV pa­tients avail­able through the Ryan White Care Act is lim­ited in scope; ser­vices such as the fed­er­ally funded AIDS Drug As­sis­tance Pro­gram, which pays for med­i­ca­tions, of­ten cover pa­tients only when their white cell counts have dropped very low.

The ex­act rea­son why chronic dis­eases are so preva­lent among older HIV pa­tients is not known for sure. One lead­ing the­ory has to do with the way the virus causes in­flam­ma­tory re­sponses, mak­ing pa­tients more sus­cep­ti­ble to var­i­ous health con­di­tions.

Another po­ten­tial fac­tor could be HIV treat­ment it­self, whose ef­fects on the body af­ter sev­eral decades of drug ther­apy re­main un­clear.

“Even on good an­tiretro­vi­ral ther­apy, it’s hard on the body to have HIV in­fec­tion for decades,” said Dr. Wayne McCormick, pres­i­dent of the Amer­i­can Geri­atric So­ci­ety and a pro­fes­sor of medicine at the Univer­sity of Wash­ing­ton. “Most peo­ple now in their 50s with HIV have had HIV for a cou­ple of decades and been on pow­er­ful drugs for that long.”

It also takes close mon­i­tor­ing of all of the drugs pa­tients are tak­ing for their non-HIV re­lated health con­di­tions to make sure they don’t neg­a­tively im­pact the ef­fec­tive­ness of their an­tiretro­vi­ral med­i­ca­tions.

While HIV spe­cial­ists have im­proved in de­liv­er­ing the kind of care nor­mally pro­vided by pri­mary-care physi­cians, Van Sick­els thinks more could be done to pro­vide clin­i­cal guid­ance on the best ways to man­age chronic dis­ease for those liv­ing with HIV. “Right now, the guide­lines are lack­ing,” he said.

Those who have lived with HIV for decades are now be­ing joined by a grow­ing num­ber of older Amer­i­cans who are newly di­ag­nosed, as well as those who are newly in­fected. That in­crease is due in part to de­nial and ig­no­rance about HIV and sex.

“Nei­ther older in­di­vid­u­als nor their physi­cians of­ten think of HIV quite the same way younger in­di­vid­u­als do,” said Dr. Amy Jus­tice, a pro­fes­sor of medicine at Yale Univer­sity. “Even older in­di­vid­u­als with iden­ti­fied risk fac­tors like men who have sex with men will of­ten say, ‘I just didn’t think it would hap­pen to me—that hap­pened to younger gay men.’ ”

Ag­ing with HIV can take a heavy emo­tional and fi­nan­cial toll on older pa­tients. “Many didn’t re­ally pre­pare or plan to have an older life ex­pe­ri­ence,” said Hugh Cole, a sub­stance-abuse coun­selor at Howard Brown Health Cen­ter in Chicago, a com­pre­hen­sive-care fa­cil­ity for the city’s LGBT com­mu­nity.

Older HIV pa­tients also may feel iso­lated be­cause of the stigma as­so­ci­ated with HIV that re­mains in some parts of Amer­i­can so­ci­ety, and they may not seek spe­cial­ized HIV care.

“That works against peo­ple main­tain­ing good health,” Me­hdi said. “If you don’t feel like it’s safe for you or com­fort­able for you to be open about your HIV di­ag­no­sis, which many peo­ple don’t, then you’re not go­ing to feel com­fort­able walk­ing into a clinic that is known to spe­cial­ize in HIV care.”

Lim­ited ru­ral safety net

This can be a par­tic­u­lar prob­lem in more ru­ral parts of the coun­try. While Howard Brown and other health cen­ters pro­vide older HIV pa­tients with a med­i­cal and so­cial safety net in ur­ban set­tings, some ru­ral ar­eas in the South suf­fer high rates of HIV cases but lack ready ac­cess to spe­cial­ized care and ser­vices.

“It’s more an is­sue of get­ting peo­ple to come to us be­cause they’re afraid of whom they might see when they’re in the wait­ing room,” said Deb­o­rah Kon­kleParker, as­so­ciate pro­fes­sor of nurs­ing and a nurse prac­ti­tioner in the in­fec­tious dis­ease clinic at the Univer­sity of Mis­sis­sippi Med­i­cal Cen­ter in Jackson.

UM’s in­fec­tious-dis­ease clinic serves about 1,800 HIV pa­tients from Jackson and the sur­round­ing It’s one of the few

area. fa­cil­i­ties in that area where res­i­dents can seek spe­cial­ized treat­ment. About 40% of the clients treated at the UM clinic are lower-in­come and unin­sured. That means the clinic staff must ad­dress eco­nomic is­sues such as pro­vid­ing trans­porta­tion to and from ap­point­ments.

Case man­agers link HIV clients to gov­ern­men­tal so­cial ser­vices, while a sup­port group com­posed of HIV pa­tients has been es­tab­lished to pro­vide a sense of com­mu­nity.

But Kon­kle-Parker said neg­a­tive com­mu­nity at­ti­tudes to­ward HIV have dis­cour­aged the clinic from pub­li­ciz­ing its ser­vices be­cause of the po­ten­tial back­lash clients may get.

“We don’t want to re­ally em­pha­size that when you come to this clinic, it’s to get HIV care,” she said. “We don’t want to make it more dif­fi­cult for peo­ple to walk into our clinic.”

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