These days, world leaders like to proclaim the beginning of the end of AIDS. But for Winnie Sseruma, a veteran advocate who’s lived with the deadly virus for 25 years, the reality is different.
"Saying that it is the beginning of the end of AIDS is really terrifying, because I don't think we have started to see the end of AIDS," said Sseruma, while acknowledging that it "depends on interpretation."
For a person living in Washington or London, for instance, where HIV treatment services are more accessible and companies are more open to hiring people living with the virus, the “beginning of the end” slogan may be an easy sell. But for people living in desperate conditions — in countries health facilities are lacking, health systems are broken and infected people are stigmatized, discriminated against or even punished — the phrase is incomprehensible.
Sseruma speaks from experience. She had the opportunity to live in both worlds: In 1988, when she was diagnosed with the virus, she was able to access the earliest antiretroviral treatments in the United States, albeit not without side effects: She lost weight and her skin and nails turned ashy black. But when she returned to Uganda in 1994, she lost that privilege, contracted tuberculosis and pneumonia. She almost died and for years, silently wished that she would.
Eventually, she started private treatment and, in 1996, moved to London, where she’s had access to antiretroviral therapy to this day while raising awareness of the predicament HIV-positive people face especially in the developing world. Her parents died without knowing hers.
"It's not an easy thing to tell anyone because it is so stigmatized, and many people have their own interpretation of what living with HIV means and interacting with people living with HIV and all sorts of things," she said.
That remains true to this day, despite enormous progress in the global fight against HIV.
Travel bans and workplace woes
Contracting HIV is life-changing, and it has many unforeseen consequences. Sseruma encountered problems securing a visa to the United States, for instance, for the 2008 U.N. High-Level Meeting on AIDS in New York, where she was invited as a speaker. The global body had to intervene for her to make it in time for the summit.
The United States has since lifted its travel ban on people with HIV, but more than 60 countries still have restrictions in place.
Searching for a job can be a daunting task, too, Sseruma said.
She recalled: "I was incredibly worried about applying for jobs and how people would react if they knew that I was HIV-positive, because I felt that was something I wanted to declare so that if there was any policy about maybe working half-time, being able to go to the hospital when I needed to, that I was able to access that kind of support.”
Despite her concerns, Sseruma soon found a job working on U.K. health issues. After several years, her focus shifted: She began advising international development agencies and eventually joined Christian Aid, the U.K. nonprofit, some eight and a half years ago.
The global development industry, Sseruma said, is "incredibly aware" and "helpful in terms of highlighting the issue of HIV globally and helping to get support and address it." Yet although many aid groups have relevant workplace policies in place, those aren’t always implemented properly, Sseruma said, citing stories from peers that suggest employees living with HIV don’t always receive the support they need.
"Some of them give me the sense that there isn't really that much support within their organizations, that they are just expected to deliver,” she said. “Yes, they can take the time off, but it's like [they] still believe that they can be dismissed [at any moment] — although it is illegal to dismiss somebody just on the basis of his HIV status."
Out of sight
The antiretroviral drugs Sseruma continues to take at one time cost her as much as 1,000 pounds per month. That doesn't include other medication and supplements which are important for people living with the virus, such as vitamin intake and treatment for opportunistic infections that happen when a body's immune system weakens.
"Treatment is for life," Sseruma said. "I'm lucky enough that I can access it on the national health service here in the U.K. I'm not sure if I moved to a different country I would be able to have the same access."
Over the years, there have been many breakthroughs in the science and treatment of HIV and AIDS. With greater awareness has come more funding and reforms meant to reduce stigma. Yet those living with the virus — including HIV-positive development professionals — continue to face daunting obstacles. If we’re at the beginning of the end of HIV, the road to the end, Sseruma suggests, may still be long.
How does Sseruma’s experience differ from yours? What can the international community do to advance the cause of an AIDS-free generation? Let us know by leaving a comment below.
Read more development aid news online, and subscribe to The Development Newswire to receive top international development headlines from the world’s leading donors, news sources and opinion leaders — emailed to you FREE every business day.