Humanizing science
Bridgette Picou

There is a method to the madness of everyday life with HIV. Everyone has their own method of dealing with madness, right? Our own little theorem and experiments when it comes to dealing with the highs and lows and processes of understanding our life with the virus.

I’ve been in the mindset of science since February when I attended CROI 2022. It stands for Conference on Retroviruses and Opportunistic Infections. A mouthful to say and, trust me, a brain-full to take in. CROI is HUGE in the HIV treatment community and is a way for science and research to share ideas and studies and failures and successes. Any area of HIV treatment you can imagine—there are 10 other subcategories you never thought about under that. And they are all relevant! Although I thought my little A’s in science from high school and my nursing license were going to help me play Marie Curie on Zoom, I was very quickly reminded that the science of nursing is different from the science of HIV and research! bNAbs (broadly neutralizing antibodies) and SHIV challenges and glycoproteins, oy vey! Science and the business of science-ing is hard! Nonetheless, it did give me an “a-ha” moment in relation to our role as people living with HIV, and the role of scientists in HIV.

While we’re all trying to find a way to live with HIV, scientists are trying to find a way for us to not only live healthily with HIV, but also without it. With medical mistrust at an all-time high, I think it’s more important than ever to stay focused on the human element of science. If I asked you about the human impact and input to science, what would that mean to you? The human bodies that contribute to it? The blood and tissue we donate?

With medical mistrust at an all-time high, I think it’s more important than ever to stay focused on the human element of science.

 We have to broaden our definition of human participation in research and studies. It’s never just about the patient’s perspective of trying to stay adherent to their medication or the process of functioning with the disease, but it’s also the element of hope for a cure that keeps a lot of us moving forward. Even if we are using a holistic and non-medication methodology of controlling the virus, it’s important to respect and know a little bit about the science of why those things work (or don’t work).

My a-ha moment was realizing that while science is made of research and hypothesis, experiment and conclusion, humans are behind those formulas. I think we sometimes forget that. Even though their reasons for wanting to find a cure may be different from ours—the hope that sustains them as people is the same. The disappointment that we feel when another “promising treatment” or “cure” we hear about in the news turns out to be a bust, is the same disappointment they must feel at its not working. I’m choosing purposely to use “not working” rather than “failure” because at the end of the day, any time someone misses the mark while purposely trying to help me, it’s not a failure. It’s a “We’ll get ‘em next time, Tiger” moment. After all, the alternative is what? No one doing anything? Let that marinate a little. So, while science ain’t for everybody, science is most definitely for everyone. 

Even though after the conference I know what broadly neutralizing antibodies are, I don’t totally know how they work. I’m okay with that. I’ll leave it to science. The science that for me, has a new, humanized element to it.

Be well. You matter.

Bridgette Picou is a licensed vocational nurse in Palm Springs, California. She uses her voice to speak for others as a member of the Board of Directors for HIV & Aging Research Project-Palm Springs (HARP-PS) and as a Community Advisory Board Member for The Well Project-HIV and Women. She is also an active HIV blogger and member of ANAC, the Association of Nurses in AIDS Care, Greater Palm Springs Chapter. Finding a voice in advocacy and activism is a natural progression, since she feels that every time she fights for someone else, she affirms her own life.