Losing Faith: Reflecting on 40 years of the HIV pandemic

Faith was the first child I lost to HIV.

I can still see her, sitting next to her mother on a rusting metal bed in the ward of the hospital in Kenya where I was working as a pediatrician in 2004. Her mother, Rose, is pleased that they were able to reach the referral hospital where I worked. She thinks that if there is anywhere to have hope, it is here.

Faith, who was 4 years old, weighed just 11 pounds. Most babies weigh 11 pounds before they are 4 months old.

She was too sick to look pleased, too sick to be wooed by colorful stickers or sweet, milky tea. I suspected from my physical exam that Faith had AIDS, and her blood tests confirmed my worst fears. She died two days after she was admitted to the hospital.

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I had given her mother a copy of a photograph I took of the two of them when we first met. After Faith died, her mother thanked me over and over for making this picture of her daughter. She was so grateful, and I felt terrible. I felt like I hardly did anything, and I certainly didn’t save her daughter.

Every Dec. 1, I think of Faith. Not just because it is World AIDS Day, or because she was the first patient I lost to HIV, or because she altered the course of my career in medicine and research. I remember and honor her because Dec. 1 was her birthday. Faith should have turned 21 this year. She should be falling in love, studying something she is passionate about, making big plans for her life. Instead, she died of an entirely preventable, and now manageable, infectious disease.

Forty years after the first cases of AIDS were reported, Faith’s story illuminates what it means to be able to access the health care and treatment that one needs. Had whoever infected Rose with HIV been taking antiretroviral medicines before they met, Faith and her mother would still be alive today and Rose would be free from the wrenching guilt and despair from carrying in her body the virus that would kill them both. Barring that, had Rose known she had been infected with HIV and started taking antiretroviral medicines during her pregnancy, Faith would not have been infected with the virus. Or if Faith had been able to start taking these medicines early in life, she might be in college today. She could be learning and laughing and dreaming today.

The real and achievable goal for every person living with HIV today is that antiretroviral medicines suppress the virus so it is undetectable in their blood and they cannot infect another person. Undetectable equals untransmissible, or as those working in this field say, U=U.

Even as countries around the world struggle with the Covid-19 pandemic, all of us must remember that the AIDS pandemic is not over. The transmission of the human immunodeficiency virus is not anywhere near ended. Millions of people are living with HIV today, and millions have already died from it. Covid-19 puts those living with HIV at a higher risk from serious disease or death from it, but the pandemic also makes it harder for people to access their HIV medicines, obtain specialized care at clinics, and get essential peer support. Increased costs of transportation to clinics, loss of income, difficulty maintaining medication supplies, struggling to even find enough food for the day — all of these additional burdens create barriers to keeping the HIV pandemic under control. These increased burdens can have long-term and life-threatening consequences for anyone living with HIV.

Individuals living in places like Kenya today who, unlike Faith, survived childhoods with HIV and are now teenagers, are now finding their families’ incomes, their homes, their access to medications, and their friends crumbling in the Covid-19 pandemic.

Pandemics aren’t over until they are over for all of us. This is as true for HIV as it is for Covid-19.

Today, of the 1.8 million adolescents living with HIV, only 48% are on the life-saving treatment they need to transform HIV into a chronic disease. More than 110,000 children die from HIV each year — children just like Faith. And HIV remains a top cause of death for adolescents in sub-Saharan Africa. That is tragic because these deaths are due to an infection that can be prevented — in both babies and in adults — and that can also be treated.

After 40 years of struggle and success, the HIV/AIDS pandemic is far from being over. As the world moves toward a half-century coping with this disease, clinicians, public health experts, and governments need to keep dreaming and planning and advocating and taking the actions needed to end this pandemic — and any others that might emerge.

On this World AIDS Day, I ask you to remember Faith and all of those who have been lost to HIV/AIDS, support those who are living with HIV, and recommit to ending the devastation from both HIV and Covid-19 for every person around the world. Let us celebrate more birthdays, and fewer deaths.

Rachel Vreeman is a pediatrician, HIV researcher, chair of the Department of Global Health at the Icahn School of Medicine at Mount Sinai, and director of the Arnhold Institute for Global Health.