HIV patients care for others who have virus
May 15, 2006
Toronto Star, by Karen Palmer, special to the Star
On an unseasonably damp and chilly morning, most patients arrive breathless at Reach Out headquarters, weakened not by the virus in their veins but by the cruelly steep incline leading to the HIV clinic.
Nearly all clutch bags filled with pill bottles.
Annet Namayanja greets them with a smile, inviting each patient to step on the scales and see whether their weight shows they're thriving or sliding.
For these people, Namayanja is an inspiration.
After all, she weighed fewer than 100 pounds the first time she stepped into the clinic.
"I was almost dying. I was dying," she says, then giggles as she tells of gaining nearly 40 pounds since starting HIV treatment.
"What Reach Out has done for people living with HIV is beyond measure."
In a way, the clinic is run by patients for patients. Reach Out uses volunteers called CATTS — for Community ARV and TB Treatment Supporters — many of whom are themselves HIV-positive.
"With the number of people living with HIV in Africa about to eclipse 25 million, innovative programs like Reach Out are finding simple ways to solve some of the problems that plague larger, more expensive programs.
And as AIDS organizations gear up for the big August international conference in Toronto, Reach Out is being hailed by such organizations as UNAIDS and the Stephen Lewis Foundation as the kind of holistic service that works.
"Small is beautiful," says Dr. Margrethe Juncker, the Danish physician whose volunteer work got Reach Out rolling.
"It's important to keep close contact and a little bit of a family feeling, even with 2,000 clients."
Reach Out teams up with research programs to test patients' CD4 counts, which show the number of white blood cells in the immune system.
Local nurses receive intensive HIV training to become "medical officers" who work four days a week at the clinic.
On the fifth day, they sling backpacks over their shoulders, grab coins for the matatu bus and head into the community to aid patients too sick to visit the clinic.
"I've worked with the poor forever," says Juncker, who has hopscotched around the world, following her husband's rise through the ranks at the World Food Program.
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`I've worked with the poor forever. You learn that there's so much more to health than the physical problems' Dr. Margrethe Juncker, Reach Out physician |
"You learn that there's so much more to health than the physical problems."
In addition to offering free access to medication and life-saving antiretroviral drugs, the clinic operates a food distribution centre, a training workshop for tailors, a micro-finance program to help clients pay rent or set up small businesses and a school fees' fund to get their children into school.
Reach Out began humbly enough in 2001, when Juncker's husband was transferred to Uganda and she was looking for a place to volunteer while caring for their five children.
After being stymied by the rigid bureaucracy of most charities and non-governmental organizations, she teamed up with a group of nuns who were trying faith healing with destitute AIDS patients, essentially praying for them as they slipped closer to death.
She and her helpers rushed to get people the drugs that would save them and found more and more people turning up as they saw their friends and neighbours not only surviving but thriving. And right from the start, Juncker says, patients began gaining strength simply by seeing that someone cared about them and was looking out for them.
"It was a revelation, how much people can improve with a little TLC."
Dozens of patients offer testimonials to the power of the clinic, but the best evidence is sitting in the waiting room at Our Lady of Africa Church, where the clinic has taken over virtually every available inch of space.
Patrick Edamu, for example, has seen his CD4 count rise dramatically in the past year. Patients qualify for anti-retroviral therapy when their CD4 count drops below 250; they are considered to be very ill if it sinks below 100.
When Edamu first arrived at the clinic, his white-cell count was one. Now it is 137 and he smiles when medical officer Rosemary Atim asks whether he has any complaints.
None, he replies in Luganda. He only came to get a refill on the pills that are helping keep him alive.
The key with anti-retroviral therapy is keeping patients healthy enough to take their drugs and getting them to adhere to taking them on schedule.
The concern over adherence has kept many countries and HIV programs from distributing ARVs, because they fear patients on multiple medications will do themselves more harm than good if they're not carefully monitored.
Reach Out has an astounding rate of drug adherence: 80 per cent of the 618 clients on free ARV therapy have a 95 per cent adherence rate, thanks in part to CATTS counsellors who help patients sort out their medications and conduct home visits to ensure they are managing.
Meanwhile, start-up kits are being prepared to share with other clinics and Juncker is confident the Reach Out approach can be implemented almost anywhere.
"There's nothing really to it, except that it works," she says.