The Child Who Survived HIV/AIDS and Thrived
Few children diagnosed with HIV in the 1980s survived to adulthood. But Claire Gasamagera, who was diagnosed as an infant in Rwanda, did not just survive—she thrived. And her story speaks to the many triumphs against AIDS since the first days of the pandemic. On this World AIDS Day, we bring you Claire’s story in her own words.
“I live by my grandfather Saverio Nayigiziki counsel: Neither the misfortunes nor the blows of life, nor marriage, nor age, nor even fatherhood could calm me down. I am always a big child, a dreamer, and a runner of mountains and valleys.”
Against All Odds
During the 1980s, less than 50% of children diagnosed with HIV survived. And this is why: the limited treatment options, and the aggressive nature of the AIDS disease at that time.
Many children died before reaching their 5th birthday. I am one of the luckiest; I am one of the children who survived. And I have many reasons for celebration today.
In his book, Four Thousand Weeks, Oliver Burkeman explains that human beings in average live 80 years. That’s roughly 4,000 weeks. Burkeman reminds us that life is short. Now, should we not make the most of our finite existence?
As far as I’m concerned—given the death toll of children diagnosed with HIV at the time I was an infant born with the virus—I am celebrating that I have lived half of life’s marathon. At 41, I am a lifetime AIDS survivor; I just ran past 2,000 weeks, the halfway of this marathon.
Apart from the invisible HIV virus, I am an award-winning writer. I’m a scientist, an artist, an activist. And I’m a mother of three healthy children.
Like any adult, of course, I’ve had my share of sad and happy days. But I live by my grandfather Saverio Nayigiziki counsel:
“Neither the misfortunes nor the blows of life, nor marriage, nor age, nor even fatherhood could calm me down. I am always a big child, a dreamer, and a runner of mountains and valleys.” I sure came a long way.
My parents were upper middle class. They were educated young people with jobs that paid well. Everything was laid out for me to succeed. And this is why that detail is important: It debunks those tales that HIV and AIDS only affected people with no formal education, and those in the low-income bracket. To me, that didn’t apply.
After I was born, my mom and I were always sick. At the time, the medical profession believed that HIV only affected men who had sex with men—AIDS was believed to be a scourge for the gay community.
Fifteen months after my birth, my mom had my young sister. Given that I looked malnourished, the healthcare providers advised her to continue breastfeeding me, while giving my young sister cow milk. Mum never recovered from her two consecutive pregnancies.
Her health—and mine as well—continued to deteriorate until we were both diagnosed with HIV in 1988. The same year, my mom died from AIDS-related complications. I was five years old.
The paediatrician told my dad there was no treatment for AIDS; that there was no way I was going to live beyond the next two years.
My widowed father, left with two kids who were respectively 5 and 3, vowed to give me the best years of my life. He did everything to make me happy. For him, every day was the last day. And I’m grateful he could afford to be there for me.
My Dad was the mayor of our city. People say he spoiled me. But it paid off in good ways—My Dad always told me I was beautiful; I grew up believing I could do anything I put my heart to.
He paid me to read and summarise news from local newspapers and update him on what was happening in the community. I was in charge of choosing and approving his outfit, his haircut. I brimmed with confidence to see him on telly or at public meetings, wearing the outfits I chose.
Dad called me Madame—the Lady. It made me feel special. In fact, he treated me as special; he would cancel important meetings when I was not feeling well. And all of it seemed of little meaning at the time. But this stuff added up to build in me a great deal of self-confidence and resilience.
But despite all the love, my health was deteriorating. Every single day. I can count how many days I was unable to attend school in person.
My tiny body was a battleground of all kinds of infections: from shingles, skin rashes, chronic pneumonia to weight loss. I looked malnourished, yet I lived in abundance.
Though I was always coughing, was always weak, my dad reassured me that most children outgrow a period of sickness. But to my surprise, I once overheard him tell family members of his fear that I might die alone in my bedroom, and that my ghost would haunt him.
My very first experience with stigma and discrimination came from our own housemaids. They often refused to change my bedsheets and clean my bedroom.
Their excuse was that I talked nonstop—I was too much talk, yet with the size of a BIC pen, a skeleton amid my bed sheet. They were afraid I was a ghost.
At the same time, I often overheard whispers that I had AIDS. And each time I heard those rumours, I reported them to my dad. He would ensure me the rumours were lies. And his own white lies seemed to have helped my spirits.
Just like a Baobab tree—an African tree of life—I made it. I made it against all odds; I am still here, having graduated from childhood to adolescence to adulthood.
I experienced different challenges at each stage of atypical life: I survived the Rwandan Genocide at 11; all my parents and caregivers died when I was 17, and at that age, I became the head of a household; and in my early 20s, I was struggling with those new HIV medications.
The side effects were severe. But I stuck with the prescriptions. And amid the toughness of it all, I was raising my young sisters, and struggled with keeping up with college education. And college was a bit different for me, of course.
Alongside the usual stuff of learning, I started my advocacy work for young people living with HIV. It would take me around the globe. I would meet world leaders, including the late Archbishop Desmond Tutu.
And in my early thirties, I was an immigrant—I relocated to the United States. And in my new life, I discovered a new challenge—dating with HIV. Tough. But I’m glad I didn’t relent.
At 34, I became a mother in a foreign country, with none of my usual support network. But did I let that break me? Well, here I am in my early 40s, with three children of my own—two boys aged 7 and 5, and an 11-month-old baby girl.
Yes, just like the big African Baobab tree, I have weathered the winds and I am still standing; I abide in a great measure of resilience, the silver lining in the cloud of all these adversities life has thrown at me.
“By putting people first and ‘taking the rights path,’ African leaders can ensure that there are no more new HIV diagnoses among children, and among women in 2025 and beyond.”
—Claire Gasamagera
The Ultimate Conquest
Though I made it and crossed the halfway marathon of life, I am sad that in Africa many young women and children are still being diagnosed with HIV in 2024.
Recent UNADS data sets reveal that in the sub-Saharan African region, women—particularly young women between 15 and 24—accounted for 66% of all new HIV diagnoses this year. And sub-Saharan Africa also accounts for the majority of all children under 15 who were newly diagnosed with HIV.
If nothing is done, I—as a survivor—I am heartbroken that many young people living with the virus on the Continent may not cross the halfway life marathon as I was lucky to have just done. But there’s hope.
In theory, the end of HIV and AIDS is on the horizon. A cure is no longer a hype; it’s within reach. And here are the promising pathways:
Gene-Editing Technologies hold the promise of allowing scientists to disable the virus’s ability to replicate and spread. It involves the editing—the modification—of genetic material within the cells.
Scientists are developing therapeutic vaccines that could train the immune system to recognise and destroy HIV-infected cells.
And Long-Acting Antiretroviral Drugs are being explored as a way to provide an extended protection against HIV.
As it happens, the future looks bright. But we need not wait. Besides these prospective cures, we already have the tools and the technologies and the science to control HIV and AIDS. Among them, we have:
Pre-exposure prophylaxis (PrEP) which is for HIV negative people taking a daily HIV medication to reduce the risk of getting HIV.
Post-Exposure Prophylaxis (PEP) grants protection to HIV negative people who can take a combination of HIV medicines to prevent infection, 72 hours after possible exposure.
Undetectable equals Untransmittable (U=U) allows people living with HIV to reach and maintain an HIV undetectable viral load, eliminating the risk of transmitting the virus through sexual intercourse.
Unfortunately, these tools and technologies are not enough without a matching energy in care for patients. To make AIDS history, people must be at the centre of any strategy.
HIV- and AIDS-related stigma, discrimination, and criminalisation are still obstacles to proper care. Many countries still have HIV penalty laws and HIV travel bans. Then, we have a host of other factors.
Political instabilities, socio-economic status, environment change disasters, cultural norms, mental health issues, limited resources, unemployment: these continue to make young Africans vulnerable to HIV and AIDS.
In adopting Put People First as its 2024 motto, the International AIDS Society recognises these outstanding challenges, and is pushing for world leaders to remove barriers that prevent access to prevention, treatment, and care. And it is a message reflected in the theme of this World AIDS Day—Take the rights path.
By putting people first and taking the rights path, African leaders can ensure that there are no more new HIV diagnoses among children and among women in 2025 and beyond.
By putting people first and taking the rights path, they will allow those living with HIV to thrive even in the face of life’s adversities, just like the legendary African Baobab tree.
