As we often learn during our Corvias Alumni Summit, members of our family are constantly doing inspiring and world-changing things that somehow we don’t know about. A few months ago, I saw a post from current scholar Sarah Nakasone that mentioned she was going to be spending the summer in Africa working first-hand in implementing HIV transmission prevention through a truly life-changing medical treatment. I’ll let her explain the rest, but I think that after reading – you’ll be impressed & inspired to invoke change in your own community.
For those who have not yet met you in person, please tell us a little about yourself!
My name is Sarah Nakasone and I’m a current junior at the University of Chicago where I study epidemiology and international power relationships in medical activism (think WHO, United Nations policy but with a lot bit of Ebola and HIV thrown in). My father is an army officer, though my best friend has since joined the USNA, making the Army-Navy football game a fractious time in my circle of family and friends. My family was at Fort Meade, Maryland (about an hour from DC) when I received the Corvias Scholarship though they have since moved to Virginia, so I consider Chicago home for now. Future plans change with alarming regularity, though I assume it will have something to do with HIV considering my recent work. Ideally, I’d like to complete a master’s program in epidemiology and then go on to medical school, the goal being to work in infectious disease with low-income communities here in the US.
Fun fact wise- after growing up as a military brat, I have a huge passion for travel and will have visited five different continents in the span of about a year this December. My friends joke that if they want to find me, it’s probably easier to just spin a globe and pick a spot randomly than anything else. I also bake anytime I get stressed, a hobby that has served me well when trying to build goodwill with new flat mates.
How did you become aware of the project or get in contact with the Gates Foundation? Where did you find your passion for helping those affected with HIV, and were you specifically looking for a project in this area?
I started working in HIV prevention my senior year of high school. I was part of a dedicated engineering program where all of us were required to complete a capstone project and my project focused on developing apps to help educate youth about HIV (Baltimore, where I was going to school, still has a large problem with HIV). Considering I was going to a Catholic school, it was seen as a little bit of a ‘risqué’ project (I remember the principal scolding me because the phrase ‘HIV and other STIs’ apparently made our very conservative nuns uncomfortable). I think that stigma was what made me initially interested in continuing prevention work- I wasn’t used to being told that I shouldn’t do something, and that resistance made me want to do it even more.
(This is, of course, a TERRIBLE reason for doing anything so don’t follow my example here.)
I continued doing HIV prevention work once I got to college, still running on this ‘how-dare-someone-tell-me-what-I-should-and -shouldn’t-be-doing streak’ and ended up on a project researching PrEP. PrEP is this new drug that, if taken once a day, can prevent an HIV negative person from getting infected (think of it a little like birth control for HIV!) The Southside of Chicago, where I live, has a huge problem with HIV infections. As it stands, one in three black gay or bisexual men are HIV positive and we fully expect within the next few decades, about half of them will have been infected with the virus.
It is probably the hardest work I have ever done. I remember days when I would come home in tears because guys in the study would confess to me how their friends were dying of AIDS or because every single person we tested that day would be positive for the virus. But it’s also what finally gave me a good reason for doing the work. I would talk to men who had been activists for decades and committed their lives to stopping those around them from getting infected. People who confessed to me how much their lives had changed because of PrEP- because they didn’t have to worry about getting infected. We were making a difference with our research, even if it was just in the tiniest of ways.
As part of my degree program, we are required to do internationally-focused work and I wanted to continue working with PrEP. In circumstances that probably sound better suited for a networking conference (I have a friend who fought Ebola with someone who was engaged to a guy, who worked with a woman who needed someone with my background), I basically fell into the project on which I currently work. My current boss, Dr. Maryam Shahmanesh at the University College London, was working on a district-wide evaluation of DREAMS and, given my background with PrEP, she invited me to join the team and help design parts of the evaluation that would try to see how we could best give PrEP to young women. There wasn’t any formal application here, I just got very lucky that I had done similar work in the US and knew some well-connected people.
To back up a little bit, because I know that’s a lot of acronyms and introductions at once, DREAMS is a program that’s running in 10 sub-Saharan countries in Africa and is funded by the Gates Foundation and PEPFAR (a US program that tries to help fight AIDS abroad). DREAMS wants to make sure that young women grow up determined, resilient, empowered, AIDS-free, mentored, and safe so that we can cut rates of HIV by 40% in girls. I’ve been specifically working with the DREAMS program in uMkhanyakude District here in South Africa. The district is incredibly affected by HIV- 35% of the population has it- and young girls are at the most risk given that they generally don’t have the power to ask their partners to use condoms and get involved with much older men (‘sugar daddies’) just so they can make a little money for school or food or shopping. We think that PrEP can be a real help here because they would be able to take it without their partners knowing, but the South African government is still trying to plan how to get it to young women. My job has been to research how best we could get PrEP to young women (e.g. who should give it out, what sort of community education should we do, how should we market it, etc.)
It’s a different sort of life, being here. I live in a guest house with other researchers so often we will stay at the office for 10ish hours a day, only to go home and debate our research over shared meals and wine (good wine is about 40 rand a bottle, or $3.50) Most of us were born somewhere else and have no family here, so we become each other’s family. In my three months here, I’ve lived with a French nanotechnologist, a Malawian Ph. D student, a bunch of Brits, an Australian doctor, and a whole mess of South Africans. It made 4th of July an incredibly interesting affair because we had a multi-cultural bunch of us sharing my home-made apple pie with no one but me being quite sure as to why we had to celebrate anything.
What was the biggest thing you learned about the population you were working with that surprised you?
I think what surprised me most about living and working here is how often HIV does not rank as the primary concern for so many people. Many of the people in my generation lost parents to the disease and many of them are likely to be infected by it one day but it isn’t necessarily the thing about which they worry the most. 80% of the people here are on government assistance because they can’t find work, for example. It’s really hard to think about a disease that may affect you someday in the future if you’re starving today. It’s one of the many factors that will make ending AIDS here extremely difficult.
What did you learn about yourself during this experience both professionally and personally?
I loved my work this summer and I count myself as so, incredibly lucky to have had this opportunity. I have been surrounded by amazing people and have had the chance to grow both as a person and researcher here. I do not take that for granted. But I also realize that this is probably not the area of the world in which I want to work. AIDS in Africa gets a lot of attention (as it should) but we have a huge problem with AIDS in America as well- we just don’t have the problem in groups that attract a lot of interest and funding. It’s easy to spin stories about young women who don’t have the ability to negotiate for condoms and are thus at risk for HIV. It’s less easy to talk about injection drug users or gay black men or transgender women.
Something that was mentioned a lot during our Corvias Alumni Summit this year was the idea of hope. Knowing that our world is in desperate need of hope right now – what kind of hope do you now have after finishing this project for this population? Can that hope be transferred on a global scale?
Hope has been something I’ve thought a lot about here as well. There are so many days when you get caught up in these statistics about how many people who are infected and the numbers don’t seem to be getting better or they’re not getting better fast enough, no matter how hard we try. Somedays it feels a lot like lobbing water balloons at a forest fire. But then you talk to nurses here who remember what things were like before there were drugs to treat HIV and how their patients would die alone. How all day they would listen to the cries of people they could not save.
And we are so far past that. HIV isn’t a death sentence anymore and people here largely have access to the drugs they need to treat it. What seems like baby steps in the moment become immense progress in the end when you have the opportunity to look back.
I think that’s what gives me hope, both here and in HIV work in general. You have so many people who are committed to making this incremental progress, even when it doesn’t look like progress at all. I keep this quote anyplace I work so that I remember it:
“When we study the biographies of our heroes, we find that most of their time was spent in quiet preparation doing tiny, decent things, until one historic moment catapults them to center stage and causes them to tilt empires.”
I am surrounded by people every day trying to do tiny, decent things. And that gives me a lot of hope- both for here and for our world.
Interview & Pictures: Sarah Nakasone
Questions provided by: Samantha Seifert