Andrew and Esther Schorr from Patient Power in the USA have long been strong advocates for patient knowledge and empowerment. They recently visited Australia and New Zealand as part of their advocacy work.
As Andrew has an MPN (myelofibrosis), he very much understands the issues and challenges involved in living with an MPN. He and Esther met with many Australian and New Zealand MPN patients and some haematologists. Andrew and Esther have prepared a video about two of those patients’ experiences with advocacy, MPN AA’s Nathalie Cook and Ken Young. The video discusses in particular the interferon story and all the effort involved in listing Pegasys, a pegylated-interferon, which is a longer longer-acting formulation of Interferon alpha, onto the Australian Pharmaceutical Benefits Scheme.
The video of their interview is available HERE.