By Francis Musasizi
I was born into a family of three children: my sister, the oldest, and my brother, next in line. I was the last to be born, and we were all raised by our mother, a single parent.
I’ve been living with this epidemic since the day I was born. For the past 21 years, I’ve experienced real ups and downs because of HIV. For years, I had no idea I was HIV-positive: my mom had not disclosed to me, fearing that the status would worry me. All the same, I remember taking one tablet at 6 a.m. every day – and because I was thin, I faced all kinds of bullies at school.
As the years went by, my mom and I were introduced to Alive Medical Services. I met a loving lady named Dr Pasquine, the director of AMS, who welcomed me into the clinic with all her heart. I was then introduced to Lorna, the head of the Youth Wing.
Since then, Lorna has played a big role in my life; she introduced me to a group of youths who were like me. The youths were a part of the Victor’s Club, AMS’ group for HIV-positive youth. We would chill together, have fun, and entertain ourselves. Finally, I knew I was in a safe place, and AMS became my second home.
By that time, my mom still hadn’t disclosed to me. I was in that curiosity stage of life, where I would ask my mom a series of questions.
“Why am I taking this pill every day?” I would ask. Eventually, she told me the truth, and explained how important that pill was to my life.
When she told me I was HIV-positive, I was shocked. I wondered how I would keep swallowing this pill, every single day, for the rest of my life. With the help of my fellow youths at AMS – and the awesome counsellors who had my back – I realized it was possible.
Even so, returning to school after discovering my status was difficult. I was terrified of how others would think of me. At times, I would skip my medicines. And sometimes, I would go through moments when I started to give up the fight. I became quiet at school, as I didn’t want to share anything with my peers; I started viewing my status as an impediment to my academic performance. However, every time I would feel down, I would call one of the counsellors at AMS.
A few years later, a community music leadership training program came to AMS. The program was launched in partnership with Musicians Without Borders (MwB), the goal of which was to use music to fight stigma. Along with 28 other youth, I went through a series of training at the clinic with MwB. At the end of the program, we were awarded certificates and became community music leaders.
Our newfound knowledge enabled us to provide music training during youth days, children’s days, and additional days during the week, something I’ve been involved with ever since. We would gather with children and lead music sessions, so by the time the client saw a doctor, they would have participated in our session. These sessions had a big impact on clients’ health, as many of their viral loads became suppressed after participating.
After the community music leadership training program, I started believing in myself. I knew I had nothing to change regarding my status, so I embraced it. I accomplished this with the help of my fellow youths at AMS, who always visited and backed me up when I felt down.
My message to all the youths and adolescents living with HIV out there is not to give up on your dreams. We also have bigger dreams to chase, just like any HIV negative person, and we shouldn’t lose hope. We can make it to the stars and beyond if we adhere to our prescriptions and exercise positive living.
Today, Alive Medical Services said goodbye to two important members of our team: Isabel Bedford and Ella Polczyk-Przybyla, music therapy trainees from the University of the West of England (UWE). During their three months at AMS, Isabel and Ella engaged 711 individuals in music therapy activities by holding targeted sessions five days a week.
“People really responded to the program, and to an opportunity to be part of something that is creative,” Isabel said. “It’s another facet of AMS’ holistic care, because clients can engage in musical activities while receiving their medication.”
Though AMS and Musicians Without Borders engaged 30 youth in a community music project last year, AMS did not have a daily music therapy program prior to Isabel and Ella’s arrival.
The trainees provided multiple music therapy groups for clients, including open adult groups, mother-and-baby groups, open community groups, open children/youth groups, closed adult groups, and individual sessions.
“When you come to the doctor, you’re told what to do,” Ella said. “That’s important. But when clients come to a music session, they get their agency back. They have the opportunity to play, sing, and dance, and whatever they do, it will be exactly right.”
Adult open sessions aimed to promote group bonding and social cohesion, provide an opportunity for emotional release, and enable self-expression. Similar goals were set for the open community groups and children/youth groups, while also alleviating boredom, encouraging playtime, and counteracting the medical environment of the clinic.
The mother-and-baby groups provided an opportunity for mothers and babies to spend time together, and encouraged bonding, interaction, sensory stimulation for babies, and stress reduction, among other objectives. The closed groups offered opportunities for regular music-making, song creation, and bonding among a group of consistent participants.
“I’m feeling very happy, and hoping at least now, I can feel the world,” one client said after participating in a music therapy session.
The impact of music therapy has been well-documented. Many studies have shown music therapy can be a therapeutic tool for vulnerable populations, and Isabel and Ella’s work illustrated similar findings. Through quantitative feedback surveys, the trainees found elevated levels of relaxation, confidence, and optimism after participants engaged in music sessions. They also found improved perceptions of connection to others and respect from their peers.
Isabel and Ella also held weekly sessions for staff to increase bonds and collaboration between staff, promote relaxation, and encourage self-expression and creativity. In addition, they trained staff members and select youth to use music for communicating and building relationships with clients. These trainings facilitate the program’s sustainability at AMS.
Today, the trainees return to the United Kingdom to finish their degrees in music therapy. Because of the program’s success, AMS will remain a music therapy placement site for the University of the West of England. We hope to take on new trainees later this year.
“This session made my week begin with peace,” one staff member said after participating in the staff group. “I feel like it will stay with me forever.”
Leading up to the International Day of Women and Girls in Science (February 11), Alive Medical Services is recognizing one of our own: Saudah Asiimwe Kiganda, head of the laboratory. Saudah has been at Alive since 2008, joining the team at the clinic’s beginnings. Today, she manages nine other laboratory professionals and oversees over 5,100 laboratory tests every month.
“In the lab, we uncover the root causes of why someone is sick, and give doctors the information they need to help the clients get better,” Saudah said.
Around the world, women are highly underrepresented in the field of science. The probability of female students graduating with a master’s degree in a science-related field is just 8% – compared to the probability of male students, which is more than double the female ratio.
“If women are given a chance, they can achieve scientific breakthroughs,” Saudah said. “When a woman puts effort into something, she goes all the way.”
When Saudah was just 17, she was recognized as the best in biology throughout the entire region of Western Uganda. Though Saudah was first interested in marine biology, she gradually became more interested in working with people – and investigating the reasons behind illness in evidence-based ways.
She left her hometown of Kabale to start her diploma in biological sciences after finishing secondary school. Soon after, she began her degree in medical laboratory science at Makerere University, and gained laboratory experience working at three clinics in Kampala.
In 2008, Saudah joined Alive’s three-person laboratory team. Since then, she’s watched the team triple in size as the clinic’s client-base has expanded: in 11 years, AMS has gone from having six clients to over 13,500. Since joining the laboratory, Saudah has spearheaded a number of improvements throughout the years, including but not limited to contributing to increasing the variety of tests provided, improving laboratory safety, and increasing the number of certificates the team has received.
“Seeing the progress our team has made pushes me to achieve more,” Saudah said. “It’s exciting to keep improving.”
Happy International Day of Women and Girls in Science to all our female colleagues, friends, family, and supporters!
On January 30, 2018, Catherine’s second-born daughter was confirmed HIV negative.
A clinician smiled as she brought Catherine into the treatment room, embracing her to celebrate the good news. Ever since she realized she was pregnant, Catherine had worked hard to ensure the baby, Charity, wouldn’t contract HIV. She received continuous support from AMS staff to prevent mother-to-child-transmission of the virus, and faithfully adhered to her medication.
“I’m so relieved,” Catherine said. Charity smiled in her arms, almost as if she was relieved, too.
The joy in the room was tangible. But it hadn’t always been this way for Catherine and her family.
When Catherine gave birth to her first-born daughter, she went to live with her mother and extended family in the village. As Catherine recovered from the delivery, her family helped her with the baby. Her husband stayed in Kampala to work – and during that time, he contracted HIV from another woman.
Catherine returned to Kampala after three months in the village, unaware of her husband’s infidelity or illness. She put all her time and energy into caring for her daughter. And when the two of them fell sick, she assumed it was a temporary bug, or at worst, malaria.
Catherine tested HIV positive at a health facility near her home. Her neighbour urged her to get another test at Alive Medical Services – and after her diagnosis was confirmed, the doctors tested Catherine’s daughter, who was also diagnosed HIV positive.
“I was shocked, but there was nothing to be done except to begin treating myself and my daughter,” Catherine said. “I convinced my husband to get tested, but he never accepted his diagnosis. For me, the only option was to stay strong for my child.”
Catherine has since separated from her husband, who refused to get treatment and was inhibiting Catherine’s own progress. By continuing to visit AMS for check-ups, Catherine’s viral load is suppressed, and her first-born daughter – now three years old – is stable and healthy. Catherine now works as a farmer in her village, where she grows fresh produce for her family and sells whatever is left.
“My advice to other HIV-positive single mothers is to do as much as possible to support your children,” Catherine said.
On Saturday, January 20, approximately 100 clients came together for a peer-to-peer adherence counselling workshop at Alive Medical Services.
The event provided a platform for HIV positive clients to come together, discuss adherence and viral load suppression, and link to existing psychosocial and income-generating groups at AMS. Many participants signed up for AMS’ Peer Network Group, all of whom will be encouraged to meet quarterly to engage with one another, socialize, and provide peer support.
AMS will synchronize participants’ appointment dates, helping to facilitate Peer Network Group meetings and reduce travel costs for clients. In addition, AMS is creating focus groups focused on psychosocial, economic, and developmental growth, allowing clients to discuss more specific topics with their peers in the future.
“The event created a safe space for clients to connect and network,” said Beatrice Mujuni, a member of the workshop coordination team. “It was a great turnout.”
Throughout the day, clients were given space to introduce themselves, interact with one another, and participate in a number of different activities, including a group music therapy session. They also engaged in focus group discussions on adherence and viral load suppression.
Highlights of the event included a speech from Dr. Stephen Watiti, a renowned doctor and HIV/AIDS activist, and a performance by the Canaan Gents, a Kampala-based acapella group. Dr. Watiti spoke to clients about his own experiences fighting not only HIV, but cancer, tuberculosis, and meningitis.
As the first doctor in Uganda to go public about his HIV status, Dr. Watiti was able to deeply connect with the clients; he even gave out his phone number to the group, encouraging clients to reach out to him with health concerns.
The event culminated in voluntary medical consultations for interested clients.
Growing up, George knew he wanted to be a doctor. He was good at math and biology, and he idolized his uncle, a well-known doctor in his Lira community.
“My uncle had a passion for his patients, and I respected that,” George said. “I wanted to learn to do what he did – so I studied clinical medicine, community health and public health.”
After finishing his studies, George got a job with Medicines Sans Frontiers (MSF) in Northern Uganda. He was stationed in Lira and Kitgum, where he worked with children in two therapeutic feeding centres that served as referral points for health facilities throughout the region. He had studied malnutrition and its effects at university, but seeing such issues in person changed the course of George’s life.
After two years with MSF, George moved to Kampala to continue his studies at the International Health Sciences University. Right down the road, Alive Medical Services (AMS) was growing at a rapid pace. Though only in existence for three years, word about the small clinic was spreading.
“One thing I noticed immediately was the teamwork,” said George, speaking of his impressions after first visiting AMS. “Seven years later, that teamwork is one of the major reasons I continue to work hard today.”
Eventually, a spot opened up at AMS. George took it, and immediately, he began noticing an all-too-common trend, something he had seen regularly in the refugee camps in the north. Many of his HIV positive clients were malnourished, running the risk of never getting better due to lack of food.
“Good nutrition and antiretroviral treatment reinforce each other,” George said. “When a client is taking ARVs but not eating well, they’ll never get better.”
George took it upon himself to expand AMS’ nutrition programming. Every quarter, AMS now screens more than 5,000 clients for malnutrition. Twice a month, we provide packages of rice, beans, sugar and vegetables to thousands of families in food crisis.
In 2014, George took over AMS’ budding gardening program, which trains HIV positive clients to grow healthy food in their own neighbourhoods. George began training multiple groups of clients from across Central Uganda, including patients in Kampala, Mukono, Kapeeka and beyond. Today, there are 18 established gardening groups of AMS clients, all of whom cultivate produce for subsistence and sale.
To strengthen his knowledge of nutrition even further, recently, George went back to school to receive a master’s degree in human nutrition. He has continued to work full-time at AMS, helping clients better understand the value of nutrition through counselling, nutrition check-ups, and health talks.
“Nutrition is critical for people managing HIV,” George said. “We can’t leave it behind.”