World AIDS Day: Reflections from an Advocate

Today is World AIDS Day.  I find myself reflecting on how my journey as a patient advocate began with my work in HIV/AIDS and how my patients taught me to help get their voices heard.

In 1983, I had a  job as a nursing intern at Roosevelt Hospital in New York City.  I worked on a ward floor where most of the HIV/AIDS patients were placed.  None of us knew what the disease was except it was killing many people, especially young men.  I worked the 3-11PM shift and spent many hours speaking with patients about their families, dreams and hopes.  By the time, I met them, they had an immune related illness like PCP or MAI.  Many would return months later to die.

I was often struck by the lack of family or religious persons who came to visit.  Many of these brave young men died alone or with me by their side.  It was heart breaking for me.  I knew people were scared of the illness because no one really knew the cause, transmission, contagious factor or cure.  Even the medical staff was uncomfortable dealing with patients.

I began to realize somebody needed to get the attention of both nurses, doctors, chaplains and administrators to attend to the issues.  It was an eye opening experience to learn people were being ignored because of a disease or lifestyle.  How could so many people be left to die alone?

Those months at Roosevelt Hospital changed my life.  I made a commitment to working with HIV/AIDS patients until the disease was either cured or stabilized.  I became a nurse practitioner to be able to provide direct care and be a voice for treatment and understanding.  I devoted many hours to lecturing community groups nationally and internationally.  I continued this work until 2003 when I went into family practice which led me to start my patient advocacy business.

It was my roots in HIV/AIDS that is the foundation for passion for patient advocacy. The system was very broken for HIV/AIDS patients.  It was a grass roots movement of clients, medical professionals and community leaders who really were some of the first patient advocates.

On this day, I am grateful for the work that has been done, the availability of medication and resources for care.  May that progress continue.