From GRID to PrEP: Modern Life with HIV

This post kicks off our series on LGBTQ+ populations and the health concerns and disparities that effect these communities, in alignment with our newest workgroup here at the Bree, LGBTQ Health Care. We invite interested members of the public to join upcoming meetings by phone or in-person.

We’ve come a long way since HIV was first referred to as GRID (gay-related immune deficiency disease) in 1982.^[1] For one, the medical community thankfully accepts that HIV is not a virus that solely affects gay men.^[2] For another, medical breakthroughs like protease inhibitors, which block the creation of new viral particles,^[3] and HIV pre-exposure prophylaxis (PrEP), a preventive pill taken regularly by those who don’t have HIV but are at risk for it,^[4] have increased life expectancy and decreased the number of new infections. And while we still have work to do to reduce stigma and increase screening in clinical care, progress in areas of increased awareness and public funding for research has come a long way.

Today, those living with HIV in the US have an average life expectancy close to that of the national average^[5]  — an incredibly promising jump from where we were in the 1980s, when life expectancy was approximately 12 years from time of infection.^[6] Unfortunately, the same can’t be said for other parts of the world where these treatments and preventive measures are less available, particularly Africa where AIDS, though rates have slowed, still remains one of the leading causes of death.^[7] Charity organizations working globally to reduce HIV/AIDS include the Global Fund, Gates Foundation, PATH, UNAIDS, and the Elton John AIDS Foundation, if you’re inclined to donate.

Here in Washington, there are excellent local efforts being made, like those of End AIDS Washington. Described as “a collaboration of community-based organizations, government agencies and educational and research institutions working together to reduce new infections in Washington by 50% by 2020,” their focuses include helping folks get insured, tested, and given access to PrEP and treatment. The End AIDS Washington Fact Sheet can be found here.

What I’m particularly interested in are the individual stories of those in our communities living with HIV, or with HIV-positive partners. How is life made different by a positive diagnosis, and how is it the same as everyone else’s? How have new medical options changed things? Has stigma gone down? Below is a collection of these stories, from Washington State and beyond:

The Guardian | Living with HIV: Six Very Different Stories by Eleanor Tucker
“Back then, you were told that HIV might take five or 10 years off your life. Now, your life expectancy is the same: they call it ‘life altering,’ not ‘life limiting’… There are still the remnants of deeply homophobic attitudes in this country. They’re not the prevailing voices any more, but it’s hard to drown them out completely.” Read more.

The Stranger | The Case for PrEP, or How I Learned to Stop Worrying and Love HIV-Positive Guys by Evan J. Peterson
“I grew up at a time in which HIV was every bit the ‘death sentence’ that we now affirm it’s not. This is why I’m staring at the bottle of Truvada, still in mild disbelief after several months of waiting to get it. I’ve told my new HIV specialist, Dr. Kathy Brown, that I’ve dragged my feet on getting the preliminary blood tests to clear me for my prescription. I’ve done this because part of me still doesn’t believe that I can take one pill every day and be protected from HIV. It still feels like science fiction.” Peterson went on to write a full-length book on this topic called The PrEP Diaries. Read more.

Women’s Health | 6 Women with HIV Share How Their Diagnoses Affect Their Lives by Charlotte Hilton Andersen
“People with HIV who are receiving treatment and have no other health problems can now expect to live into their seventies, according to a separate 2016 study. But while treatment options continue to improve and bring hope to those suffering, public health experts say it’s still critical to focus on reducing the number of new cases each year … When it comes to contracting HIV/AIDS, women are the minority – in 2015 women made up just 19 percent of the 29,513 new cases in the Unites States, according to the CDC – but that doesn’t mean you can let your guard down.” Read more.

HuffPost | Where Is the Modern HIV Story? by Charles Sanchez
“As much as I’m glad to see any depiction of HIV in movies or television, I find myself wondering, where’s the modern story about HIV? Where is an HIV story being told that doesn’t end in a horrible death? How come no one is writing a story where someone has HIV, and it isn’t the main thing about him/her? And where, maybe, the HIV+ person is actually happy?” Read more.

Compilations:

POZ | POZ Stories
“The virus made me a better person. It made me appreciate life and the people around me.” Read more.

Avert | Living With HIV: Personal Stories And Experiences
“There are a lot of misconceptions about what it means to be living with HIV. Ultimately, everyone’s lives are different – how you cope with your diagnosis and how you move forward will be unique. Read these stories about some people’s experiences of being diagnosed with and living with HIV.” Read more.

SOURCES

^[1] Centers for Disease Control and Prevention (CDC) (1982) ‘A Cluster of Kaposi’s Sarcoma and Pneumocystis carinii Pneumonia among Homosexual Male Residents of Los Angeles and range Counties, California‘ MMWR 31(23):305-307

^[2] Centers for Disease Control and Prevention (CDC) (1983, 7 January) ‘Epidemiologic notes and reports immunodeficiency among female sexual partners of males with Acquired Immune Deficiency Syndrome (AIDS) – New York’ MMWR Weekly 31(52):697-698

^[3] Types of HIV drugs – Protease inhibitors. (2018). http://www.aidsmap.com/Protease-inhibitors/page/1729414/

^[4] Pre-Exposure Prophylaxis (PrEP) | HIV Risk and Prevention | HIV/AIDS | CDC. (2018). https://www.cdc.gov/hiv/risk/prep/index.html

^[5] Life expectancy for people with HIV now ‘near normal’ – National Library of Medicine – PubMed Health. (2018). PubMed Health. Retrieved 6 January 2018, from https://www.ncbi.nlm.nih.gov/pubmedhealth/behindtheheadlines/news/2017-05-11-life-expectancy-for-people-with-hiV-now-near-normal/

^[6] HIV Treatment Extends Life Expectancy. (2008). https://sciencebasedmedicine.org/hiv-treatment-extends-life-expectancy/

^[7] FACTSHEET: Africa’s leading causes of death | Africa Check. (2017). Africa Check. Retrieved 6 January 2018, from https://africacheck.org/factsheets/factsheet-africas-leading-causes-death/

Emily Wittenhagen
Program Assistant, Bree Collaborative