Overcoming fear and stigma in the age of HIV/AIDS

By focusing on treatment of HIV/AIDS, not prevention, could a bubble be growing in the global response to this disease?

Even three decades later, Dr. Lorna Tumwebaze still remembers the fear she felt after encountering her first patient living with HIV at a hospital in her native Uganda. She had just performed a Cesarean section under poor infection control measures when the medical staff learned the mother had recently been diagnosed with the virus.

“It was the early days of the AIDS epidemic when testing positive for HIV was almost like a death sentence,” Tumwebaze says. “As a doctor, I knew there wasn’t much that could be done to help patients. It took weeks just to get an HIV test back and treatments like ARV (antiretroviral) drugs were expensive and hard to get.”

Tumwebaze would eventually test negative for HIV, but many of her colleagues at the hospital wouldn’t be as lucky. Doctors, nurses, and other health care workers would contract the virus from exposure to patients with HIV. The experience motivated Tumwebaze to dedicate her career to confronting the enduring challenges of the AIDS epidemic.

In her role as an HIV policy advocate at the Bill & Melinda Gates Foundation, Tumwebaze consults with government sectors around the world about how best to design and implement their policy and resource decisions about HIV/AIDS, and to increase the participation of at-risk populations. In honor of the 30th annual World AIDS Day, Tumwebaze spoke with The Optimist about what her life experiences have taught her about the global health community’s response to HIV and AIDS.

Since the first World AIDS Day, much has been gained, but also lost in the battle against HIV/AIDS

The first World AIDS day was focused on raising awareness for young people and removing the stigmas associated with the disease. It’s ironic that 30 years later we’re still having to focus on that same challenge. Yes, there has been positive progress that is cause for celebration. At the same time, I still see a lot of fear, stigmas, and unknowns in the HIV/AIDS community.

ARVs have saved lives, but they also mask a problem that is smoldering.

In some parts of Africa, during the early years of the epidemic, HIV/AIDS was called “slim disease” because people literally wasted away until they died. We could almost diagnose people the moment they walked into the hospital because of how much body weight they’d lost, the skin rashes and instances of opportunistic infections. Now, thanks to the availability and affordability of ARVs, patients can be tested and started on treatment quickly. We also have tools that can prevent new HIV infections in all age groups, from parents to a child. Patients who used to show up at hospitals with those old symptoms have almost disappeared. At the same time, it hides a problem that governments will soon face in their response to HIV/AIDS. By focusing a disproportionate amount of effort and money on treatment rather than on primary prevention, it’s creating a growing pool of patients who need to take ARVs their entire lives for decades to come.

New tools require de-stigmatization in order to work.

We have new tools that can help in the fight against AIDS, like PrEP (pre-exposure prophylaxis) which can prevent people from getting HIV infections if used before they enter into sexual relationships. But the key populations who need it most – girls, women, and men in homosexual relationships – are often the most stigmatized members of society. While homophobia is prevalent around the world, some countries even have policies that criminalize it, as well as engaging in commercial sex work. That makes it hard to reach those populations, which are at a higher risk of HIV infection.

Fear and homophobia make the problem worse. In India, I visited with a group of gay and transgender men. One of them asked: “Are there other people in the rest of the world who are like us and are suffering?” He told me how in India, people like them are persecuted, beaten, making them feel like the rejects of the world. I explained there are other people like him in the world. It lets them know it’s a shared problem. But that doesn’t take the pain away. There needs to be a shift in cultural attitudes about sexual identities and practices.

Learning from her father’s example about the need to educate girls and young women

In southwestern Uganda, my first name means “to thank.” That’s significant considering at the time I was born, it was still considered more important for a family to have male children. But my father was a British-trained police officer and for him all children mattered. He felt thankful for my birth, even as the third girl in the family, when he could have instead divorced my mother to look for a woman who would give him a male child. That was the beginning of my life story, being born to great parents who were thankful for me and all my siblings.

My father was born in a very poor family and my grandparents had to make a choice about which child they would send to school. They decided my father would go to school. When he became a parent, he was determined that none of his children would ever go through what he went through. He knew education was the only way out. I remember him saying: “I don’t care if you get married the day you walk out of your graduation. But you have to graduate first.” That taught me a lesson about the need for empowering girls and young women, two of the groups that are among the most vulnerable to getting HIV/AIDS.

Calling for a return to the “multi-sectoral” approach

Many governments realized a long time ago that HIV/AIDS is not a health problem, alone. The epidemic affected other sectors like tourism, labor force, education, even business. A lot of them setup their original AIDS responses as commissions under the office of the head of state allowing them to be managed as a coordinating neutral body, rather than by the ministry of health. This was called the “multi-sectoral approach” and was at one point an effective response to the epidemic. Due to a myriad of factors, including influence from funding sources, governments have become biased towards programing for HIV/AIDS as a medical health problem, grouping it as one of many efforts run by their ministries of health. That creates competing priorities and tradeoffs. We need to rethink of how to revitalize the “multi-sectoral” approach because treating HIV/AIDS as strictly a health problem simplifies what is a very complex problem. We started off the HIV epidemic with suffering, fear and unknown. It’s been 30 years since the first World AIDS Day, yet we’re still battling the same challenges of the unknown, fear, and stigmatization. Despite the progress made, the global health community needs to recognize we’ve arrived at a tipping point before it’s too late.

To end the HIV/AIDS epidemic, we need renewed political will, realization of commitments, and accountability to prevent new infections, all while sustaining the treatment of people already living with HIV. We live in a world that is far advanced in technology, research, and development. We know so much more about the AIDS epidemic than we did 30 years ago, when the first World AIDS Day was held. With sustained global funding and meaningful participation of affected individuals and communities, we can collectively end the HIV/AIDs epidemic as a public health threat.