The Next Battle in LGBTQI Equality: Our Health Data

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As we approach the 50th Anniversary of the Stonewall Riots, I look ahead to the next battle in LGBTQI equality: our health data.

June 28, 1969, at the Stonewall Inn, in Greenwich Village, was in many ways, LGBTQI Independence Day.  A little more than a decade later, our D-Day came and we all landed on the Normandy Beach of the HIV/AIDS epidemic.

The virus, now, in many ways, is under control.  But 700,000 young people died to get to this point and 1.1 million Americans are still living with the disease. While we’ve repealed Don’t Ask, Don’t Tell and legalized gay marriage, our fight for equality is far from over.  The battle still rages when it comes to our healthcare.

Our HIV population is aging, as is the general LGBTQI population.  We now face all the vagaries of life that come with getting old in addition to chronic illness, the side effects of years of pharmaceuticals and aging effect cis gender LGBTQI people.  We need more data collected on our transgender brothers and sisters to help become who they truly are in a healthy way.

All of this has left our population vulnerable.  LGBTQI Americans are living, growing, transforming and aging in a system still riddled with stigma and fear. Or even worse, living in a world where others don’t care about improving our prospects for living healthy lives and aging and dying with dignity.  The rest of the world is just beginning to understand our specific needs. We simply do not have time to wait. We must demand and drive a quicker and better process.

Fortunately, there is a solution. Collecting and analyzing more comprehensive information on LGBTQI Americans needs and the needs of their loved ones.  We’re now in a world where treatments are being tailored to individuals.  But researchers can’t continue to talk about precision medicine unless they are precise in molding our healthcare to our lives.  Pharmaceutical companies, hospitals and insurers need to know that we are a unique population with biological and physiological markers that make us and our care unique.

For all intents and purposes, there is no significant amount of data that has been amassed to make a difference in our healthcare.  There is not enough information on our specific lives and the social determinants of living an LGBTQI life.  We are unique. Decisions impacting our lives can literally be life and death decisions.  Yet, gerontologists, urologists, dermatologists, cardiologists and every other specialty are all making decisions about our lives in a vacuum.   The data on the LGBTQI population that will inform clinical research, preventative medicine, management of chronic disease and the care of our aging LGBTQI community is sorely lacking.

Data analytics are making people rich, but now, data has to make people healthy. We must ensure that marginalized and underserved members of society like the LGBTQI community live healthy and hopeful lives.

What is the responsibility of LGBTQI people in changing how healthcare and medical interventions are delivered to our community?  At Stonewall, 50 years ago, we stood up and said enough.  In the late 1980s at the height of the AIDS epidemic, we stood up and said enough.  We are now well into the new millennium and it is time to demand what is due us – healthy lives, effective medicine, affordable care and housing for our aging LGBTQI brothers and sisters.

Fortunately, the scientific community has made some progress. The All of Us Research Program run by the National Institutes of Health has prioritized engagement with marginalized and stigmatized communities in an effort to seek volunteers to donate their health data.  Through partnerships with amazing organizations like CenterLink, The Association of Nurses in AIDS Care (ANAC) and the HIV Medical Association (HIVMAA), All of Us is bridging the trust barrier and reaching into our community asking us to be a part of a larger movement.

But we need more.

We need large data sets that reflect the fact that there are more than 20 million LGBTQI Americans.  Let’s honor those that fought back at Stonewall.  Let’s honor the hundreds of thousands who died because of AIDS.  Let’s honor ourselves by demanding that the US healthcare system reflect us in the decisions they make moving forward.

New York’s Gay Pride is next Sunday.  In the ’80s and ’90s, I marched for the Manhattan Plaza AIDS Project.  I pushed the wheelchairs of young men who couldn’t walk because of the devastating conditions caused by the AIDS crisis.  They are all gone now.  To honor them and Stonewall, our job is to live long, safe and healthy lives, and we can’t do that without the data.

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