The crown that won the HIV battle

Swapna Majumdar, CNS Special Correspondent, India
Barbara Kemigisa
Photo credit: Swapna Majumdar
She is not traumatised by it, nor does she want to hide it. On the contrary, Barbara Kemigisa wants the whole world to know that she has the Human Immunodeficiency Virus (HIV) infection. In fact, the 33-year-old flaunts it by wearing a victory crown made with empty bottles of antiretroviral (ARV) drugs used to treat the infection and leftover pills. “I’m not afraid of the stigma of living with HIV. I want people to know my status so that they can see that people living with HIV don’t need to wither away and die. By wearing this crown, I can attract attention without saying a word,” says Kemigisa.

This innovative strategy certainly worked for her during the recent International Conference on Population and Development (ICPD+25) Summit in Nairobi. The petite Kemigisa was the cynosure of all eyes. Invited by UNFPA to speak on her experience and ways to ensure inclusive, effective and transformative HIV/AIDS responses, the HIV activist from Uganda grabbed eyeballs not just with her novel headgear and her outfit (a dress with 120 ARV bottles), but also with her inspiring story. “I wanted to give the message that there is no shame in living with HIV and we, too, can live with dignity,” says Kemigisa.

In Uganda, women are disproportionally affected by HIV. Of the 1.3 million adults living with HIV, 59.23 per cent are women. According to the latest figures, new HIV infections among young women aged 15–24 years are more than double those among young men. There were 14, 000 new infections among young women as compared to 5000 among young men. An estimated 50,000 new infections occur in Uganda every year, according to the Ministry of Public Health in Kampala.

Life changed for Kemigisa when she was diagnosed with HIV. “I was sexually abused by my uncles when I was 11. I thought it was a game and was bribed with sweets and pancakes into secrecy and consent. As I grew older, I began having unsafe sex with other men. I had no idea that I could land into trouble. When I became pregnant the first time, I had no idea what it meant,” recalls Kemigisa.

Then in school, the 15-year-old was tricked into going to hospital by her family and given an injection to go into labour. “I gave birth but I don’t know what happened to the baby. I came home and went back to school. This was the worst period for me. Suddenly, no one wanted to talk to me anymore. I felt unwanted even at home. So, I ran away and began living on the streets of Kampala,” recounts Kemigisa.

During this time she became pregnant for the second time and returned home. During an antenatal check up, Kemigisa, then 22 years old, learnt that she had tested positive for HIV. “But I didn’t panic. I knew the family would not accept me. So I went back on the streets and gave birth. My daughter tested positive and has been on ARV drugs since she was 8 months old.”

But instead of wallowing in self pity, Kemigisa turned this adversity into an opportunity to focus attention on the issue. She started reaching out to young girls and boys, using her crown and outfit to talk about the need for safe sex. “I wanted to share my story so that others would learn from my experience.”

She began appearing in TV and radio shows and speaking at schools and churches. Here, she would underline the need to remain positive and adhere to treatment for a healthy life. She has also travelled outside Uganda to share her story and presented her innovation of recycling ARV bottles at various international like the 2015 international conference on recycling and waste management in Singapore and several international AIDS conferences. Kemigisa’s innovative recycling of empty ARV bottles has been adopted by six youth groups in Uganda. Her innovative ideas and drive to help others won her the Mandela Washington Fellowship in 2018 to study civic leadership at Wagner College in New York.

Support from her husband made it easier for her, says Kemigisa. “My husband always boosts my morale and helps me create new things with the empty bottles. He is HIV negative and my son, born three years ago, is also negative. This was possible because I did not stop taking medication. Girls living with HIV can live their dreams, marry and have children just like me”.

One of the reasons why Kemigisa founded Pill Power Uganda was to underscore the importance of treatment adherence. The organization pushes for greater awareness on the need for proper medication and its adherence, facilitates peer interaction and, capacity building and skill development.

She has reached out about 50,000 people through talks, social media and her organization. “I always give out my phone number. This helps them talk to me. I have counselled many who came to me. Some even stayed with me for months. Even my 10-year-old daughter has helped many get back on track. She, too, has become a HIV activist.”

Kemigisa says that her daughter never blamed her for being HIV positive. “She wasn’t angry at me. I told her my whole story and since I was a single mother for a long time, she would accompany me to the talks. So she understands everything. In fact, she composes songs of hope and is an activist for children’s well being and rights. I still remember how she inspired a young man some years ago to resume his medication by telling him that she had been taking two and half tablet every day since she was eight months. The young man broke down and promised to adhere to his treatment. Today, he is healthy and always says that he owes his good health to my daughter. I am really proud of her.”  

Swapna Majumdar, Citizen News Service - CNS 
Nairobi, Kenya 
23 November 2019