From fear to hope: Reflections from Dr. Gloria Sangiwa on a career tackling HIV

“There was a lot of fear in the early 1990s. You walked down the street and everyone was talking about HIV and AIDS. There were bulletin boards everywhere warning that HIV was coming to kill you,” reflects Dr. Gloria Sangiwa, a medical doctor and vice president of global health at Pact. 

To many, the 1990s are a particularly memorable moment in the history of HIV, although not a positive one. While the timeline of HIV stretches back to the 1920s, it wasn’t until the mid-1980s that scientists discovered the HIV virus and identified it as the cause of AIDS. At the end of 1985, there were more than 20,000 confirmed cases of AIDS, with at least one case in every region of the world. By 1988, that number had risen to 400,000. For many, it only seemed to worsen as we started the next decade.

At the time, Dr. Sangiwa was beginning to practice medicine. She trained as a psychiatrist at Tanzania’s University of Dar es Salaam, Faculty of Medicine and then worked at Tanzania’s then-only teaching hospital, the Muhimbili Medical Center. Dr. Sangiwa had a unique role: she was one of the few doctors who served as a liaison, linking the internal medicine unit and the acute psychiatric ward. Working in the medical unit, half of the patients she saw were HIV patients. When in the acute psychiatric ward, the picture was the same — half of the patients were experiencing stress, depression, and other acute mental health impacts due to their HIV status.

“People were dying in front of me,” says Dr. Sangiwa. “I was starting to lose close friends, colleagues, and family members to the disease. You couldn’t avoid it. I knew that I could continue my path [in psychiatry] and promote mental health, serving three roles as an academician, clinician, and researcher or I could expand to be one of the pioneers proactively finding a way to contribute to this emerging epidemic.”

She chose to be part of the solution, eventually becoming the principal investigator of a randomized controlled trial in Tanzania, part of a multi-country study led by a group of scientists from the University of California, San Fransico’s Center for AIDS Prevention Services.

In the early days of the epidemic, the virus was able to run rampant because of immense stigma, denial, and a lack of treatment.

“Stigma was unbelievable in those early years,” she recounts. “It wasn’t just in communities. It was in health facilities.”

Self-stigmatization was also a challenge. People who were diagnosed with HIV often felt shame and fear, isolating themselves from others, including healthcare workers who could provide much-needed care and support.

The focus at that time was primarily on prevention. There were different prevention options available, but the prevailing method was known as ABC — abstain, be faithful, use condoms. But this didn’t resonate with everyone. It was also difficult for women to demand their partners use condoms — a challenge that persists today.

Treatment wasn’t readily available in Tanzania at that time. While the first treatment, azidothymidine, or AZT, was approved by the U.S. Food & Drug Administration in 1987, it was expensive, had severe side effects, and only worked on those who had progressed to the end stage of HIV infection — AIDS. It was also extremely regimented. The medication had to be taken at specific times of the day.

“We were doubtful that it could work in Africa,” recalls Dr. Sangiwa when thinking back to the earliest treatment options. 

It took time. AIDS-related deaths and hospitalizations in developed countries began to decline sharply in 1995 thanks to new, combined medications. Despite this progress, by 1999, AIDS was the fourth biggest cause of death in the world and the leading cause of death in Africa. 

Dr. Sangiwa recalls a huge change at the turn of the century. 

“Everyone rallied around the epidemic. Everyone came together. It was part of the UN General Assembly agenda,” she says. “This significantly impacted acceptance globally.”

From 2000 to 2010 there was a stunning global health shift — an ‘epidemic of mega-funds’ with $80 billion committed to AIDS, TB, and malaria in seven years and the launch of the Global Drug Facility, Global Fund to Fight AIDS, TB, and Malaria, U.S. President’s Emergency Plan for AIDS Relief, UNITAID, and the International Drug Purchase Facility.

With the addition of new, better treatments, strong advocacy efforts, and a global push toward ending the epidemic, treatment became more affordable. The new combination therapy also reduced the risk of HIV transmission, including between an infected mother and her unborn child.

People began to realize that HIV wasn’t a death sentence; it was a chronic disease.

“I remember a man I’d seen who was dying with HIV. Ten years later, I saw him again, but I didn’t know who he was. I didn’t recognize him because of how well he looked,” she recalls.

She knew then that we’d turned a corner in the fight against HIV.

Political will was high. Leaders were taking ownership of the epidemic in their countries, allocating money and other resources to fight the disease. President George W. Bush created the U.S. President’s Emergency Plan for AIDS Relief, or PEPFAR, in 2003, the largest commitment by any nation to address a single disease in history. And eventually, the data confirmed that progress was being made. Population-level data showed the incidence of HIV coming down in all age groups.

While immense progress has been made since those dark days of the 1990s, there are still ways in which we are falling short of the global goal to end AIDS by 2030. For Dr. Sangiwa, this means we need to be more innovative and find new ways to be efficient. We need to look at different approaches and develop measured, targeted solutions. Compared to the nineties, today there is a mountain of data at our fingertips that can help us refine our approaches to reach the 2030 goal.

We can learn a lot from the response to HIV that can help us close the remaining gaps, as well as address future epidemics and improve public health overall.

One is that we need people at all levels. The move from a narrow, medicalized approach to HIV to a broader public health approach in the early 2000s was a turning point. Improving the health of entire communities through health education, supportive policies, and community-based interventions have been shown to deliver the same or better outcomes compared to a purely medicalized approach alone.

HIV has also shown us that we can’t go it alone. Not a single country or organization could have achieved what the world has achieved together in the fight against HIV. 

It has also demonstrated the critical importance of strong, integrated health systems, localization, and clear policy guidance that is understood by medical professionals, advocates, and policymakers. In Dr. Sangiwa’s home country of Tanzania, as in most sub-Saharan countries, the health system before the 2000s was primarily built around acute care — someone breaks their arm, you set it, and you send them home — not chronic care, which focuses on managing long-term conditions. Both are necessary for comprehensive, patient-centered care. 

But for Dr. Sangiwa, if we’ve learned anything from the HIV response so far, it is that we can turn the impossible into possible. Even in this era, there is now a shift away from aid dependency, with a need for all communities and countries to focus on redefining development, including how to maintain and not lose the gains we’ve already made. 

Her message to future global health professionals and advocates is clear.