Three men, three positive lives

Fred

Fred Ssenga’s daughter died in 2010. Ssenga had been sick and was afraid of what might be wrong with him. When his daughter died, he realize he could no longer wait to be tested for HIV.

For testing, he went to the Skin Clinic at Mulago Hospital, the largest hospital in Uganda’s capital city Kampala. After testing positive for HIV, he was referred to The AIDS Support Organization (TASO) an organization that offers counseling and health services to HIV-positive people.

At first, the only person he told was his wife. He said she feared her own results and he struggled to convince her to be tested. She tested positive and received treatment. Together they had another daughter in 2009, but his wife died in 2012. Ssenga had to find work to so he could take care of their daughter.

“I had to look for jobs because I had to get to look for school fees for my child and even clothes for her,” he said.

In 2012, he was offered a job at TASO packaging antiretroviral drugs or ARVs, the drugs taken to treat HIV. Though they do not cure HIV, they slow down the virus. Ssenga’s job also included acting as a peer supporter to clients struggling with their own HIV status.

Today, his daughter is eight years old and she’s HIV-negative. Her favorite color is pink. In May, she went back to school a week later her peers because it took Ssenga a while to find the money.

“The school fees here in Uganda are very high,” he said.

Ssenga said he enjoys working at TASO, but he is not salaried and can only work nine shifts a month, at most three times a week. Each day he is paid 24,000 Uganda shillings, or about $6.66.

Ssenga came up with the idea to open his own clinic. He took out a 1.5 million Ugandan shillings loan ($418). He wanted his clinic to be in an area with few other health service providers. He said many of the fisher folk do not want to go to large hospitals and are more comfortable going to his clinic.

Fred Ssenga keeps records of the clinics expenditures. He was diagnosed with HIV in 2010, and opened the clinic last year. (Gwynneth Hurley | The Media School)

The center occupies a three small rooms of an unfinished building, and one room in another building next door. The front room is the pharmacy, and behind it is the small appointment room, filled with a few chairs and equipment for basic medical checkups.

A pastor who lent Ssenga some money for the clinic asked him to call the it Grace Medical Centre. By coincidence, the only other employee besides Ssenga is a young nurse named Grace, who lives in the back of the clinic.

“It helped me because by that time I had feared during those days I was thinking that maybe I would die but when they counseled me and I started taking drugs, it helped,” Ssenga said.

Ssenga travels to the center on days he is not working at TASO. Ssenga buys all the drugs available in the clinic’s pharmacy. He buys what he can afford. He tries to buy the medications most commonly needed, and things available in bulk.

TASO uses his clinic as a satellite location for bringing ARV’s to people in the surrounding community. He would like to be able to supply ARV’s, but they are not available to small clinics like his. He said typhoid and malaria are common illnesses he deals with at his clinic.

A mural by a local artist decorates the outside wall of the clinic. On the left is the waiting place for patients who are very sick. On the right is the room for patients who need testing, basic medical care, or counseling. (Gwynneth Hurley | The Media School)

Due to a recent government regulation restricting fishing, many in the community no longer have a source of income. Ssenga said often, clients cannot afford the drugs they need. He has them sign a book saying they will pay him when they can. Often times, people do not end up paying.

Business is slow because of the rural area where the clinic is located. Ssenga hopes to soon have enough money to move the clinic to Kampala. In the future, he hopes his daughter becomes a doctor.

Richard

When Richard* was 17 years old, he became sick and stayed sick, despite the medications he was taking. He feared he could have SLIM, as HIV was previously called in Uganda. Not wanting to be recognized at a clinic in his community, he moved to a district far away. The year was 1990, and stigma against individuals with HIV was extremely high.

Now, Richard is the National Coordinator for the Positive Men’s Union or POMU, a group dedicated to mobilizing and supporting men living with HIV. He did not always have such high aspirations when he was first diagnosed.

“I was more interested in whether I was going to live long with HIV or when I was likely to see my death,” he said.

In the 90’s, many more people died of HIV. He said it was difficult to stay positive surrounded by death, but the support he received at The AIDS Support Organization or TASO helped him to live his life.

“Through the counseling and encouragement that I was going to stay longer with HIV if I chose to do what was called positive living or living positively with HIV, I would live longer” he said.

He made friends at TASO. He was in an all-male support group. The communities, he said, were not good places for them. After noticing a lack of men coming to the clinic, Richard had an idea to create an organization dedicated to helping men with HIV and providing them with support.  This organization eventually became POMU. Today, the group has grown from the original eight members to over 6000 men all over Uganda.

Richard; the national coordinator of the Positive Men’s Union in Uganda; works on compiling a report on POMU’s latest initiative, a collaborative health camp event with Men Engage Uganda. (Gwynneth Hurley | The Media School)

Now POMU focuses on community mobilization and education. They go to schools and local institution to educate people about HIV. They tell people if they take care of themselves properly, they can live for a long time with HIV. They provide counseling as well.

Their advocacy is often hindered by financing issues. To reach people in different parts of Uganda, there must be resources available in those regions.

“The government has not allocated adequate resources to fighting HIV,” he said.

One of the most frustrating aspects for Richard and his colleagues is the governments continued delay of implementing the AIDS Trust Fund. The fund was announced in 2014, but regulation is still being discussed in parliament.

Richard said POMU is interested in donating to the fund, when it is finally established.

“When fund comes let us mobilize ourselves and make a contribution to that fund,” he said. “We are the chief beneficiaries.”

Recently, POMU was part of an effort to get men tested in a rural district of Uganda. To incentivize men, they allocated some of their limited budget to buying bars of soap they cut in half, so the first 50 men in line received half bars of soap. He said the
government and different organizations need to apply innovative approaches to reach men and encourage more men to be tested.

The sign post for the Positive Men’s Union headquarters, located on the same premises as National Forum of People Living with HIV/AIDS Networks in Uganda or (NAFOPHANU). (POMU) was first founded in 1993. (Gwynneth Hurley | The Media School)

Richard has now lived with HIV for 27 years. For 18 years, he took no medications other than treatment for opportunistic infections.

“I am lucky and I am thankful to my service providers that cared for me and I thank myself because if I didn’t take the advice that was given to me those days maybe it could have been a different story,” he said.

[* Richard requested that only his first name be used to avoid discrimination and harassment.]

DON

Don Abel* is an only child. In Uganda, this is rare. The average family size is BLANK. But Abel enjoyed a close relationship with his parents.

“You cannot blame someone who has already gone, but we can at least help someone who is already present and living,” he said.

When Abel’s father died, his mother took him to be tested at Reach Out Mbuya,a community faith-based NGO funded by the Catholic Church that provides HIV related services. Afterwards, his mother took him to a clinic to be tested for HIV. His mother already knew she was HIV-positive.

Abel said his knowledge of HIV at the time was rudimentary, basic. He was 11 years old. He was counseled first, told about HIV and what it would mean if he tested positive, and then was given the test.

He was told he was positive. The counselors offered support.

“I remember shedding tears,” Abel said. “They encouraged me to be strong, they told me HIV’s not the end of life.”

Abel now volunteers at Reach Out, and he just finishing up an internship as a counselor. He wants to be a counselor to help people like he was helped.

Don Abel stands in one of the counseling offices at Reach Out Mbuya Parish. He is interning as a counselor and hopes to be able to help other youths dealing with their HIV positive statuses. He asked for his face to be obscured to avoid harassment. (Gwynneth Hurley | The Media School)

He said when people are first diagnosed with HIV they feel self-stigma. Abel said a group called the Friends Forum, a club organized for HIV positive youths, helped him to overcome self stigma.

“But when they’re taught how HIV works the stigma goes away,” he said

One topic of debate is whether or not their parents should be blamed for them having HIV. Abel said he does not feel anger or blame towards his father. Instead, he is thankful for the way his father raised him.

“If not for them I couldn’t become the person I was today,” Abel said.

In the Friends Forum they focus on self-stigma within the children. They talk about discordancy in couples, when one partner is positive and one is negative, and explain it is possible to live life with a negative person.

The club takes place twice a month on Saturdays. There are fun activities like playing football, making crafts and playing cards and dice.  At the end of the day, Abel said, the club is about making friends.

He said some of the children come from households where they are abused, or they have no parents. He said it is difficult to reach children who have experienced psychological torment, but they emphasize peer support in the Friends Forum.

“The bigger kids counsel the smaller ones,” he said.

One of Abel’s heroes is Philly Lutaaya, a Ugandan musician who came out as HIV-positive in the 1980’s. He is credited with giving a face to AIDS in Uganda, and he traveled around the country speaking about his personal experience and encouraging people to be tested.

“He was confident and stood on his two feet, his story has inspired many other people to know about HIV,” he said.

Abel wants to become a counselor one day so he can help others as he was helped. He credits his father with teaching him the importance of having a strong character and getting to know people before you judge them.

“I’ve lived a simple and quiet life,” Abel said. “if you don’t talk to me you can never know my story.”

[* Don Abel is not his real name. His identity is being concealed so he can avoid discrimination and harassment.]