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  • Photos by Cody Thompson Uganda's AIDS Support Organization is headquartered in this building in Kampala. It was here that Nakato Martha Clara found the voice to speak for others who, like her, are living with HIV.

  • Nakato Martha Clara mentors young HIV-positive people in a crowded health facility room in Kisenyi. Martha participates in many advocacy events for people living with HIV.

  • Bukenya

  • Thompson

  • Nakato Martha Clara mentors young HIV-positive people in a crowded health facility room in Kisenyi. Martha is a Y+ ambassador for UNYPA and participates in many advocacy events for people living with HIV.

  • Nakato Martha Clara mentors young HIV-positive people in a crowded health facility room in Kisenyi. Martha is a Y+ ambassador for UNYPA and participates in many advocacy events for people living with HIV.

Sunday, July 15, 2018 1:00 am

A positive influence

Diagnosed with HIV at 14, Ugandan dedicates her life to advocacy

Cody Thompson

About the author

Cody Thompson is a Fort Wayne native and graduate of Heritage High School in Monroeville. A senior at Indiana University-Bloomington, he has contributed to The Journal Gazette as both a freelancer and staff intern. Through IU's Media School, Thompson traveled to Uganda this summer to cover the HIV epidemic in East Africa. He spent a month in Kampala, the capital city of Uganda, reporting for the Daily Monitor, Uganda's largest independent newspaper. A version of this story was originally published July 9 in the Daily Monitor newspaper in Kampala.

 KAMPALA, Uganda

When she was 14, Nakato Martha Clara's twin brother approached her and said, “Martha, I think I messed up my life.”

He told her he had had unprotected sex with who she assumes was a classmate. Martha said he was nervous and scared.

He told her he wanted to be tested for HIV.

So she escorted him to the health center in Kamwokya, the slum in northern Kampala where they'd lived since birth. While there, she decided she'd take the test too, even though she was still a virgin.

After about 20 minutes, her brother's results returned negative for the virus that causes AIDS.

But there was a delay in Martha's results. After waiting another hour and a half, the nurse returned. She refused to tell Martha her results until her parents returned. After pleading, she told Martha she was, in fact, HIV positive.

“Trust me, the first time I heard that, I froze,” Martha said. “I felt like collapsing. I felt like it was the end of life.”

Daily challenges

Martha is one of millions born with HIV in sub-Saharan Africa during the height of the epidemic in the 1980s and '90s. She was unaware of her status until 14 years later.

According to 2017 data from the Henry J Kaiser Family Foundation, sub-Saharan Africa is home to about 70 percent, or 25.5 million, of people living with HIV in the world. Most infections are transmitted via heterosexual sex, a contrast to the image of HIV in the U.S., though some key populations in sub-Saharan Africa – such as men who have sex with men, transgender people and sex workers, among others – remain more at risk than other populations.

Roughly two-thirds of new cases of HIV in the world are found in this region. But Uganda, through early sexual behavior intervention and condom promotion, has been able to curtail the epidemic better than other countries on the continent (such as South Africa).

Yet, Uganda struggles with HIV like the rest of the continent. In 2016, there were 52,000 new infections and 28,000 deaths related to AIDS, according to UNAIDS data. However, medical improvements over the past decades have allowed people to live longer and healthier lives.

But just because they're living longer doesn't mean it's without hardship.

As many of the children born with HIV decades ago enter adulthood, they struggle with their identity, school and relationships like everyone else, but they must also take daily medication, live with the side effects, endure personal and societal stigma, and accept a positive status that will never change.

These challenges make the lives of these early generations of adults born with HIV especially difficult. But the heartening aspect to these stories is that the people in them are alive.

Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association, said children who have survived being born with HIV is one of the most exciting and uplifting stories of the epidemic. Palliative care provides holistic treatment via counseling, medical treatment and support to people living with HIV from diagnosis to death.

While Luyirika is positive about medical advancements, he recognizes the struggles people born with HIV have faced throughout their lives. He said they frequently started their lives in hospitals and on demanding, daily antiretroviral drugs, which boost the patient's immune system otherwise depleted by HIV and reduce the virus' presence in their body, called the viral load.

“Out of that, these kids have grown, and they are thriving like anybody else,” he said.

HIV-positive children are segregated in their schools, he said, and discriminated against by potential employers even though they are no different from any other child born with any other disease or abnormality.

Misunderstandings

Now 21 years old, Martha recalled that moment in the clinic seven years earlier as a nurse explained her positive result. Surely they had mistaken her results for those of her twin brother. After all, he was the one who had had unprotected sex, not her.

She called her brother and told him that the results must have been mixed up. The nurse had them sit down and take the test again.

And again, her brother's test was negative and hers was positive.

“I couldn't stop crying, and my brother was telling me 'Martha, tell me, have you ever had sex?' ” she said. “ 'Dad is going to kill you. Dad is going to beat you up.' ”

Martha didn't know it at the time, but her mother had died from AIDS-related causes five years after Martha's birth. Her father always told her that her mother died of lung cancer. She said she thinks it was to avoid scaring her, but the deception only left her confused and disoriented when she did test positive

As her brother predicted, her father screamed at her when he heard her results. Her stepmother then took her aside, consoled her and told her how her mother actually died.

It was only after her stepmother told her the truth of her mother's death that it all made sense. But that truth came with the bitterness that she was the only one of her seven siblings to have been born positive.

Martha realized she soon had to report back to school and wondered how she would disclose her status to her classmates. She wondered how she was going to accept the disease herself.

“I was even scared of death because I knew anyone who has HIV is going to die,” she said.

Push for acceptance

Lewis Denis Bukenya is deputy director of the Naguru Teenage Information and Health Centre, on the east side of Kampala. The center works to educate teenagers on safe-sex practices and overall sexual health, but it also advocates for acceptance of those who are living with HIV.

“I think one of the key challenges is that many people didn't know how, and most still don't know how, to deal with adolescents' issues that are associated with young people born with HIV,” Bukenya said.

For instance, he said, how do you speak to these people who are now becoming sexually active who are also HIV positive? What information do you give them? Are they supposed to be in relationships or not? These are the questions, he said, that have yet to be answered as these children age into adulthood.

He said the health services these young people need haven't been created yet. And so, parents have little support as they raise HIV-positive children. Their involvement is an area that Bukenya's organization grapples with, especially with fathers.

'An outcast'

From 14 to 17, Martha took only Septrin to protect her from opportunistic infections. In addition to the medication, she dealt with stigma like many HIV-positive people.

“I was an outcast,” she said.

She said she went from being top in her class to the very bottom, and she would think about death and hear voices.

“It really changed me, and I became this aggressive person, this bad person, this kind of a person, you know, who wants to commit suicide all the time because I never saw life in me,” Martha said.

 She repeatedly tried to overdose on her medication. She would take 10 Septrin pills instead of one. Overdosing on Septrin is often associated with nausea, dizziness and loss of consciousness.

She attempted suicide eight times. Each time she would go to sleep expecting to die – and each time she woke up.

After urging from nurses, Martha's father took her to The AIDS Support Organization in Uganda, where she met other young people like her. She realized her life could be worse when she saw many girls with visible maladies such as skin rashes.

On her first day with TASO, Martha was nominated as the day's group speaker. It was now her responsibility to represent the young people to the board. She said the girls who nominated her saw her potential to lead.

At TASO, she also met Dr. Kulubya Micah Phillip, who was both her doctor and mentor.

She said he taught her to accept her status and inspire other HIV-positive people. She said he was friendly and engaged in conversation with her like a peer.

“He's one of the people who have really given me a second chance of life,” she said.

 These events marked the start of Martha's advocacy efforts as a Y+ ambassador for Uganda Network of Young People Living with HIV & AIDS.

A new purpose

Martha walks up the stairs of a health facility owned by Uganda Cares, a program that works to improve access to testing and information about HIV in the packed slum of Kisenyi in central Kampala. The walls in some parts of the building are missing, but it makes for a nice view of the crowded clothing market below.

She peeks into several rooms until she finds the one she's supposed to be in. Many people recognize her along the way.

Today she will spend several hours mentoring a group of around 40 young people living with HIV.

There are many children as young as 11 in their school uniforms, but there are also young mothers breastfeeding their infants. They are all packed, shoulder to shoulder, onto wooden benches in a small classroom. The door is open at the back, allowing for a breeze.

The close proximity of the people still leaves the room stifling, but they don't seem to care.

Martha began the meeting by having each person in the room introduce themselves. Many were quiet and clearly nervous. Martha also asked whether they were single, prompting shy blushes from several.

Martha was full of energy. Her voice was loud. She stopped the meeting at one point for a 10-minute dance break. During her presentation, she filled an entire whiteboard of tips for positive living:

1. Know who you are

2. Acceptance

3. Embrace treatment (antiretroviral drugs are my life)

4. Live healthy (Nutrition, sports, yoga)

5. Talk positively/Be positive

“When you're positive, nothing can put you down,” Martha said.

Martha began taking ARVs four years after she knew her status. Her CD4 cells, the white blood cells responsible for fighting infections, had dropped below 500, which, at the time, was the threshold to start ART.

She said she had minimal side effects, only nausea for three nights. This is her third year on ART, and her CD4s are high and her viral load, the detectable number of virus in her system, is at 40, which is considered suppressed.

Martha is currently in a relationship with a British man and is open with him about her status. She said she always tells her partners at the start now. She's upfront.

“I really want someone to love me for who I am,” she said.

She said she is upfront because she's wasted her time before on men who tell her they'd do anything for her, only to change when they hear she is HIV-positive.

Martha said her experience of accepting herself and her status is similar to that of others she has met. They often lack of acceptance from others; the stigma is also a common thread.

“That kills you,” she said. “It kills your confidence. It kills your esteem. It kills every good thing in you. It is too hard to pick up those broken pieces and put them back in order.”

Martha said she plans on continuing her work in advocacy but would like to shift to financial accountability.

After her time on the ground, she said she's interested in making decisions to ensure the efficient and proper use of money for programs. She said many people making these decisions haven't spent much time on the ground.

That is most certainly not the case for her.