This was the first article that appeared in the New York Times, that told us about the devastation, the Hell that was to come.
35 years later, while we have treatments, preventative medications (PrEP) and now concrete scientific evidence that persons with HIV who have an undetectable viral load for six months or greater are unable to transmit the virus to sexual partners (Undetectable=Untransmittable/Treatment as Prevention or TasP) we are still suffering with stigma, arguing over funding, dealing with barriers for ALL persons to get adequate and comprehensive medical care, psychological care and suport services and there are still disagreements over how to end the HIV epidemic.
I have my own very strong thoughts that we have the tools right now available to end or dramatically reduce HIV within the next 20 years if governements would just cooperate.
I was on the front lines of the battle in the early days, and I still am on the battle lines today as an advocate. To give you an idea of how this illness has impacted my life, I went through a notebook that I have kept during my years as a health care provider. It contains the names of all of my friends that I have lost to HIV and it contains a monthly number of every HIV patient I treated from the years 1987-1992 who died in NY/NYC.
THE TOTAL NUMBER IS 1,229
I worked at Albany Medical Center Hospital in Albany, N.Y. and I also worked at St. Vincent's Hospital in NYC. I actually started in health care as an EMT and then as a paramedic at age 16 with the volunteer ambulance service in the small town that I grew up in (in most rural to mid size communities this was common-they have volunteer fire and EMS services).
Albany Medical Center has a service area from Franklin and Clinton Counties on the NY/Canadian border with Quebec, then half way to Syracuse to the west and south halfway to NYC, They also serve 2 counties in Vermont as the tertiary referral center.
My areas of nursing specialty are Emergency, Critical Care and Burn Unit but early on I noticed that there was an aversion to working with HIV patients. I would pick up extra shift on their dedicated HIV inpatient treatment floor. I also noticed that there were a large number of patients who were either going to NYC on their own for care or being transferred to NYC so I inquired where they were going and found out about St. Vincent's. I signed up to become a part-time staff nurse there and would take Amtrak from Albany to NYC.
Much of the care at St. Vincent's was far more advanced than what we were offering in Albany (though this was a hotly contested item by the physicians/management) and I made it my goal to bring this knowledge back to Albany so that it could be shared with treatment providers, patients and their families, much in the same way that we are now doing with the U=U project.
I myself have been HIV-positive since 3/11/1993. For me this fight has been very personal. So many of my friends, both in Albany and NYC died, so many of my fellow health care workers and patients, but yet I live for all these years as a silent witness to their lives and their deaths.
I however have tremendous hope. It is why I joined the Undetectable=Untransmittable group in the first place. I think that for the first time, with the proper community partners, with outreach, education and with government participation and a buy-in by all of the stakeholders this is the first chance we have of beating this illness.
If we can get large scale testing, and effective treatment to persons who are undiagnosed, support services and medical/pharmeceutical support to those in treatment and those who need treatment, education to the public, stigma reduction and re-education of the health care community/public I think we can see numbers drop dramatically, just like DC, or other communities.
Yes it will take time, but we have model cities. It is why I have chosen to come out all over again, and make my voice heard, and be that bridge between what happened in the past and what is our future. to help educate, to help teach those younger generations of activists and to hopefully get us to an HIV/AIDS free generation.