Aban­doned

HIV/AIDS pa­tients have nowhere to turn for treat­ment

The Compass - - FRONT PAGE - BY DENISE PIKE

When Linda (not her real name) heard mem­bers of the New­found­land and Labrador AIDS Com­mit­tee say pa­tients with HIV/AIDS were not re­ceiv­ing the spe­cial care they re­quire, she broke down and cried.

“They were sum­ming up how I’ve been feel­ing for a long time,” said the Con­cep­tion Bay North res­i­dent who con­tracted HIV from a boyfriend in Bri­tish Columbia nearly 10 years ago.

“The health care sys­tem here in the prov­ince is pretty bad, even for those who are not se­ri­ously ill, but for peo­ple like me who have HIV or AIDS... it’s down­right pa­thetic. “

Al­though she has a heavy chest cold, Linda says seek­ing med­i­cal at­ten­tion is out of the ques­tion. Her physi­cian, Dr. Ian Bowmer, an in­fec­tious dis­ease spe­cial­ist, has left the prov­ince and the only nurse prac­ti­tioner for the AIDS clinic in St. John’s re­cently re­signed. The nurse, who has been on a leave of ab­sence, de­cided not to re­turn to her job. She had been re­spon­si­ble for see­ing pa­tients af­ter the dis­ease spe­cial­ist moved away.

Linda feels go­ing to the emer­gency depart­ment or to a lo­cal doc­tor is just too risky.

“I just don’t have it in me to go see an­other doc­tor to get this cold checked. It’s just too stress­ful,” said the 44-year-old, who moved back to the prov­ince so her two chil­dren could be near their bi­o­log­i­cal fa­ther.

“A reg­u­lar GP just doesn’t have the ex­per­tise or all the back­ground in­for­ma­tion on my med­i­cal his­tory, so what should be like a stan­dard check up usu­ally turns into a com­pli­cated or­deal. I know, be­cause it has hap­pened to me all too of­ten. The last doc­tor I saw told me to stop tak­ing one of my med­i­ca­tions and gave me an­other that, when com­bined with what I was al­ready tak­ing, caused vi­o­lent headaches. I thought I was go­ing to die. It took nu­mer­ous phone calls to my for­mer in­fec­tious dis­ease spe­cial­ist in B.C be­fore I was back on track again.”

Linda says she’s also con­cerned some doc­tors might even refuse to treat her and peo­ple in the com­mu­nity will find out she has HIV.

“It’s not un­com­mon for a doc­tor to send some­one like me, who has HIV, to an­other doc­tor,” she said. “I’ve heard of that hap­pen­ing many times to oth­ers with this dis­ease. My fam­ily and close friends know I have HIV and I would never be in­ti­mate with some­one without in­form­ing them first, but that doesn’t mean I want it broad­casted through­out the com­mu­nity. The stigma around it isn’t as bad as it once was, but it’s still there.”

Ac­cord­ing to Linda HIV/AIDS pa­tients in B.C re­ceive far bet­ter health care than those in this prov­ince.

“B.C has a re­ally good AIDS treat­ment cen­tre and prov­ince wide drug pro­gram where drugs are pro­vided to pa­tients for free,” she said. “There are all kinds of sup­ports and stud­ies be­ing con­ducted as well. The health care sys­tem there is be­ing proac­tive in the fight against HIV/AIDS, in­stead of re­ac­tive, and they’re looking at ways to keep peo­ple healthy. Along with giv­ing peo­ple who have con­tracted it a bet­ter qual­ity of life, they know it will be less of a strain on the gov­ern­ment and health care sys­tem down the road. Too bad it isn’t like that here in New­found­land.”

Aban­doned

Chris Pickard, ex­ec­u­tive di­rec­tor of the AIDS com­mit­tee says peo­ple liv­ing with HIV/AIDS in New­found­land are feel­ing aban­doned.

“We’re not try­ing to cre­ate panic, but the sit­u­a­tion as it is right now is crit­i­cal,” said Pickard. “Peo­ple re­ally don’t

know what to do. They have nowhere to turn for proper treat­ment. “

One day clin­ics, held in St. John’s on Satur­days, ev­ery three to four weeks are cur­rently be­ing of­fered by out of town physi­cians, how­ever Pickard says those clin­ics won’t even cover the num­ber of HIV/ AIDS pa­tients in the prov­ince who need med­i­cal treat­ment.

“They can only ac­com­mo­date around 80 peo­ple, but there are about 120 pa­tients with HIV/AIDS, who vol­un­tar­ily seek treat­ment at the clinic,” said Pickard.“So what hap­pens to the rest? Where do they go for treat­ment?”

Ap­par­ently con­cerns over lack of ad­e­quate staffing and ser­vices at the St. John’s AIDS clinic are noth­ing new.

The Com­pass learned that a pro­posal, which would have ad­dressed all of the above con­cerns was sub­mit­ted to East­ern Health by a pro­vin­cial HIV team, a few months ago, just prior to the 2009-10 bud­get. A let­ter of sup­port from the AIDS com­mit­tee, ac­com­pa­nied it. The let­ter was also for­warded to Ross Wise­man, min­is­ter of Health.

The team, made up of phar­ma­ceu­ti­cal spe­cial­ists, nurse prac­ti­tioner and other pro­fes­sion­als put forth three main re­quests. They in­cluded the need for more ad­min­is­tra­tive sup­port (med­i­cal sec­re­tary) at the AIDS clinic; more time al­lo­cated for the nurse prac­ti­tioner and the need and ben­e­fit of ex­tend­ing the scope of du­ties of the nurse prac­ti­tioner.

The pro­posal, which was turned down by East­ern Health, cited the nurse prac­ti­tioner at the clinic as “play­ing a vi­tal role in the health and well be­ing of the pa­tients.”

Higher num­bers

Un­til a new in­fec­tious dis­ease spe­cial­ist for the AIDS clinic can be found, East­ern Health has asked a num­ber of in­ter­nal medicine spe­cial­ists to con­sult with pa­tients. Linda says that is of lit­tle help to some one like her.

“Some of th­ese spe­cial­ists are on the main­land, so if I hap­pen to get se­ri­ously ill, how are they go­ing to be able to help me? Treat me through some kind of con­sul­ta­tion by a doc­tor who is hun­dreds of miles away? That doesn’t even make sense,” she says.

Linda says HIV and AIDS pa­tients need con­stant mon­i­tor­ing and con­sis­tent check­ups. They also re­quire reg­u­lar treat­ments of anti-vi­ral drugs to keep their im­mune sys­tems strong and to guard against dis­eases like pneu­mo­nia.

“All the more rea­son for the need to have an AIDS clinic staffed with the proper med­i­cal peo­ple like an in­fec­tious dis­ease spe­cial­ist and a cou­ple of nurses,” said Linda. “Even just go­ing to the emer­gency room of a hospi­tal that is filled with peo­ple who have the flu puts me at risk.”

While there are around 120 HIV-pos­i­tive pa­tients who have been vol­un­tar­ily seek­ing care at the HIV/AIDS clinic, the num­ber of peo­ple in the prov­ince with the dis­ease is much higher.

“We’re see­ing an in­crease, even in the Carbonear area where in­tra­venous drug users, are con­tract­ing the dis­ease,” said Pickard. “The out mi­gra­tion of work­ers to other parts of Canada has also had an im­pact as well,” he added. “Es­cort ser­vices are a dime a dozen in some cities and some of the work­ers are us­ing them and con­tract­ing the dis­ease that way and then com­ing home and pass­ing it onto their spouse.”

Hope­ful

On April 15, Pickard, along with other mem­bers of the Aids Com­mit­tee, met with Health Min­is­ter Ross Wise­man to dis­cuss their con­cerns.

“It was a pos­i­tive meet­ing at least the lines of com­mu­ni­ca­tion are opened now,” said Pickard. The po­si­tion has been posted and hope­fully a spe­cial­ist or two will be hired with in the next few months be­cause right now we’re in a cri­sis sit­u­a­tion.”

Wise­man is ex­pected to get back to the AIDS

Com­mit­tee chair­man some­time this week.

For Linda, news that an in­fec­tious dis­ease spe­cial­ist has been hired couldn’t come fast enough.

“It’s about time the min­is­ter got mov­ing on this is­sue,” she said. “ I heard Ross Wise­man on the ra­dio re­peat­edly say­ing he wasn’t aware the nurse had re­signed, but she sub­mit­ted her no­tice be­fore Christ­mas, so why didn’t he know? And he knew the in­fec­tious dis­ease doc­tor had left, so what was he wait­ing for? Look if this were any other ill­ness, other than HIV or AIDS the gov­ern­ment and the health care sys­tem would be mov­ing a lot faster to re­solve it. Any­way the min­is­ter has all the in­for­ma­tion he needs now doesn’t he, so hope­fully that’ll get the ball rolling and we’ll get the treat­ment we need.”

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