Restoring Hope through Compassion and Acceptance
Some patients walk away from HIV treatment. This faith-based organization brings them back.
Ndumiso was afraid his wife would find him taking his HIV antiretroviral medication, so he threw the pills away. He did not go to the local clinic to set up regular appointments and get more medication. He just dropped out of treatment.
Daily adherence to antiretroviral therapy (ART) is crucial to keeping HIV-positive people alive and well. Getting people who are living with HIV on to ART and keeping them on their medication is a vital step toward controlling the HIV epidemic.
The week before Ndumiso got rid of his pills, the 25-year-old walked into a mobile clinic in a remote area of Eswatini (formerly Swaziland) seeking help for an eye problem that had troubled him since birth. But in truth, he had not been feeling well and while he was there he agreed to take an HIV test. When he returned to the mobile clinic to get his test results, Ndumiso was immediately tested a second time. “I was thinking I might be positive,” he admits.
Since 2006, mobile hospital outreach units from USAID partner The Luke Commission have traveled great distances from its “Miracle Campus” in Sidvokodvo to reach people like Ndumiso who have little access to comprehensive HIV/AIDS testing and treatment. To date the mobile units have served about 456,000 patients. Eswatini has the highest HIV prevalence in the world, with 27.4 percent of the population living with the disease.
When The Luke Commission ‒ or TLC, for tender, loving care ‒ mobile unit doctors diagnose someone with HIV, they make a referral for patients to get their follow-on antiretrovirals locally. The TLC medical team started Ndumiso on antiretroviral treatment and referred him to a nearby clinic for monthly follow-ups.
But Ndumiso did not go. A TLC counselor called the facility and found that Ndumiso had not registered. For many organizations this would have been the end of their counseling and support. But what sets faith-based TLC apart is that for them, the care was just beginning.
There are many reasons why someone diagnosed with HIV will stop taking ART. For one thing, the regimen can be cumbersome and confusing. The pills can have uncomfortable side effects, and patients have to take ART drugs regularly for the rest of their lives.
Then, there is the stigma that often accompanies an HIV diagnosis; or the depression that settles in after a person fully embraces it.
“Many times with HIV patients, it is difficult to get the real story,” said Gugu Sikhondze, the operations manager/senior counseling lead at TLC. “Often, they are afraid loved ones will leave them, or that others will look down on them. But in some cases, what they are hiding from others is not as much as what they are hiding from themselves.”
Undeterred by his being a no-show, the TLC counselor called Ndumiso at home. She was met with hesitation and vague answers. She pressed on. Ndumiso eventually said: “It’s hard to talk to my wife. She told me when I first tested at the outreach that she could not stay with a person that had HIV.”
“Let us come to your homestead,” said the counselor. “We will just talk.”
“I didn’t know they would come to my home,” said Ndumiso. “That was a surprise.”
TLC will indeed go into homes where patients may be hiding from their diagnoses and defaulting on their treatment programs. They search out those afraid to tell their families they are positive. Those afraid of the stigma. Those who have lost hope.
With their messages of love and acceptance, TLC is often able to bring these patients back to treatment. Often they will drive them to the local clinic ‒ transport being a major impediment to adherence.
The next day, with Ndumiso’s permission, the counselor gently explained the diagnosis to his wife, Buhle. She was quiet throughout the counseling session. The couple had been married only two years. Eventually, she agreed to be tested for HIV. She was negative and agreed to take pre-exposure prophylaxis ‒ or PrEP ‒ to prevent her from getting the disease. Their baby, Melokuhle, was also negative.
After the session, Buhle agreed that Ndumiso should take his medication. She would not leave him.
TLC’s efforts are always centered on the patient. “If the focus of our staff was on themselves, and if what they did was just a job, they would not be inclined to go the extra mile for our patients,” said TLC Executive Managing Director Echo Vanderwal. “We treat every patient with a higher regard than we have for ourselves. The goal is to get to the truth of the matter with perseverance and determination so patients can live and thrive while HIV positive.”
Such commitment is the cornerstone of USAID’s faith-based partnerships and the reason the Agency seeks to enhance them.
About the Author
Leslie Rose was a communications consultant in the USAID Office of HIV/AIDS.
