An HIV response that works
“I used to scorn people with HIV long time,” he says. Irony wasn’t lost on the 32-year-old tradesman. His wife died shortly before he was diagnosed with the virus earlier this year. Next to him sat a 66-year-old with shining silver hair and trembling lips. She tested positive three years ago although she says she must have been living with the virus for a long time. Until her diagnosis she’d never known anyone with HIV. “Anybody can get it when you take a chance,” she resolved.
Then there was the petite 24-year-old. She was just 16 when her 20-year-old boyfriend passed away. HIV hadn’t been something she had thought or even knew about. And although she had been on antiretroviral therapy (ART) for the last seven years she hadn’t always taken the pills as she should have. “I used to hide the tablets in a little teddy bear but then it came down to a 50/50 chance of life or death. Sometimes it makes me feel upset, but if I stop taking it I wouldn’t see my daughter grow,” she said. Five months ago she was weak. Now she’s far healthier and a little petulant. She wondered why the nurses didn’t trust her completely to stick to her meds while she was visiting her toddler over the weekend.
This poignant conversation about living with HIV takes place at a one-of-a-kind facility. Bedroom windows frame the green of the garden while sunlight pours onto polished wooden floors and up to a high, whitewashed ceiling. Along with necessities like a kitchen, laundry room and nurses’ station are a host of extras—a TV room, a recreation corner, even a chapel. This is Mercy Home, an HIV hospice run by the Living Water Community.
This ten-bed facility was opened in 2006 in a direct response to T&T’s high HIV rates. (T&T’s current adult prevalence of 1.5 per cent is higher than the regional average of one per cent.) Since inception, Mercy Home has served more than 130 people living with HIV (PLHIV). They are all non-paying clients. Administrator and head nurse for the past year, Sister Michael Lewis, reveals that the hospice works closely with the Medical Research Foundation (MRF) on screening, referrals, treatment and a multi-disciplinary response to patients’ needs. That includes access to social workers and counselling. People’s situations vary wildly.
“Sometimes the family members are having a difficult time coping because the patient can’t walk, they don’t have money for transport or they have to go to work. Others think it’s his or her fault because they were not listening to mummy and daddy. We have people coming here who were left home and not taken care of. In other cases the person is capable of caring for themselves once they get back on their feet. We have had some in top jobs,” said Lewis. “Whatever the situation we tell families to try your best not let them feel rejected.” A recovering drug addict who was once a Mercy Home client now helps with housekeeping and gardening. When asked how she and her team approached patients who have chequered pasts Lewis cocked her head, momentarily confused.
“We are all one. God has made us. Whatever has happened we can overcome that with our brotherly and sisterly loving concern and attitude. We love, treat and care for everyone as they deserve,” she says.
Some patients are coping with a new diagnosis. But even for those who had already begun ART, adherence could be tough. Lewis said that some patients stopped their medicines when they began to feel better while others believed the bad advice of bush doctors that they had been cured. Volunteer physician, Ayanna Sebro, explained why patient adherence was at times difficult. “Taking medicine on a daily basis at a certain time is fairly challenging for the average person, even more so for someone who doesn’t have as full an understanding of the process, people who are very young or individuals who might be mentally challenged. There is also a psychological aspect of taking the meds and dealing with the diagnosis,” Sebro said.
According to T&T’s 2010 United Nations General Assembly Special Session (UNGASS) country progress report the proportion of PLHIV who were on ART 12 months after they started was just 77 per cent. UNAIDS and the World Health Organisation (WHO) recommend a standard of 90 per cent.
A National Institute of Allergy and Infectious Diseases’ study showed that if an HIV-positive person is started early on ART, the risk of passing on the virus to their uninfected sexual partner can be reduced by 96 per cent. Treatment protects and prevents. Ernest Massiah, director of the UNAIDS Caribbean Regional Support Team (RST) points to the way medical advances have changed HIV’s status. “HIV is not about death. Science has come to a place where medicine allows you to live and manage this illness just like one does diabetes, hypertension or any other condition. But it still has a stigma,” he stressed. “And that is what we must change.
The nurses at Mercy Home know firsthand about both the beauty of medical miracles and the fact that they could be undone. “My greatest joy is when patients come here and they cannot walk but they leave walking,” said nurse Sherry Jackson. “For me what is emotional is when they come and you give them your all and they go back home and stop taking their medicine so that they end up worse than before,” said a second nurse, Joanne Best Rose. Both women have been with the hospice since inception and have cared for patients from 17 to 85-years-old of various ethnic, social and religious backgrounds.
Visits from family and friend are welcomed and a system of phased weekend visits is used to ensure that the patients and their families are ready before discharge. Patients are invited to a 3 o’clock rosary although it isn’t mandatory. And since the hospice serves people of any faith, religious leaders of other denominations are welcomed when a patient wants to commune or is near the end. In her gentle, soothing style, Lewis issued a challenge to all former patients: “I would like them to form a support group so that they can tell others ‘I’ve been through that. If you are in that situation seek Mercy Home, have patience with yourself and you will be out of there and back to society’.”
Credit: UNAIDS Caribbean