Passing of The Baton — On the
Death of Patient Research
Advocates
PATIENT PERSPECTIVE : WE HONOR THOSE WE ’ VE LOST BY CONTINUING THEIR ADVOCACY WORK , PATIENT ADVOCATE ANGUS PRATT SAYS .
By : Angus Pratt , MBA on : December 20 , 2022In : MEETING NEWS , SUPPORTIVE & PALLIATIVE CARE
When I was diagnosed with lung cancer in 2018 , there was a small community of patient research advocates — or PRAs . We were a small community because most of us did not live long enough to get involved in advocacy . Fortunately , now we are surviving longer , which has allowed lung cancer patient advocacy to boom .
That boom has not only been beneficial on a community level . On an individual level , many of us , myself included , have developed strong bonds and wonderful friendships with fellow PRAs .
Angus Pratt , MBA
Unfortunately , longer survival doesn ’ t mean lung cancer patients are immune from death , and sadly our community has lost several prominent PRAs recently .
Those of us remaining , look around and wonder who is next and who will carry on their work .
Longer survival times have allowed PRAs to do more , and thus they have risen to more prominence in the lung cancer world . When there is a loss , we must acknowledge not only the grief , but also the questions it raises about honoring our peers and dealing with our own mortality .
How do we honor the work that PRAs we ’ ve lost have done ? How do we ensure their contributions are not forgotten outside the patient support community ? How do those of us who remain deal with our survivor ’ s guilt ?
When each death reminds us of our own mortality , it ’ s tempting to try to brush it off . To tell ourselves “ Well , we all die .”
Yet , for those of us living with a life‐limiting disease , this reality is closer than the risk of getting hit by the proverbial bus . So we wonder , “ why are we still alive ?”