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Understanding the Patient Voice: Unique Perspectives on Healthcare

June 7, 2018
To end Day 2 of Education Tracks at the 2018 BIO International Convention, Julie Gerberding, Executive Vice President & Chief Patient Officer, Merck & Com Inc. led a discussion with three patient advocates as they discussed their journeys to diagnosis and their viewpoints on the healthcare system. Each of these three patient advocates shared their perspectives on what it means to be a patient and how they are advocating in their own unique ways to achieve a common goal: bringing new treatments to patients.

Bryce Olson, the first panelist, immediately stood out in his “SEQUENCE ME” shirt. Bryce advocates for a genomics guided precision path due to his experience with advanced prostate cancer. Beside him was Ashanthi DeSilva, writer and Rare Disease Editor at The Mighty, who made history as the first gene therapy patient in the world. Earlier in the day Ashanthi was awarded the first ever “BIO History Maker” Award. Rounding out the panel was Gabriel Maldonado, Executive Director and Chief Executive Officer of TRUEVOLUTION and patient advocate on behalf of the HIV/AIDS community. Each of these panelists acknowledged that their focus is on their own health but also the social and political status of patient access. Ashanthi noted that she was extremely lucky to be chosen as the first gene therapy patient, but her hope is that one day luck won’t determine whether someone lives or dies.

A major theme in this discussion was health literacy, and how to properly educate patients, doctors and caregivers about rare disease and the complexity of healthcare. Rare disease patients and caregivers are in most cases the best experts on their condition. After months or even years of looking for a diagnosis, most patients are given very little information from doctors who may know very little about their condition, which forces them to take matters into their own hands and conduct endless research on their condition. All three panelists agreed that self-advocacy is crucial in order for patients to not only educate themselves on their condition, but to spread the word about new treatments and paths to discovery that other patients may not know about. Bryce’s shirt, “SEQUENCE ME,” was his example of how to simplify his path to proper diagnosis and treatment, but it is also a way to educate others about the benefits of genome sequencing.

Finding a diagnosis is the first step but finding the proper treatment or clinical trial is the next, and more difficult step. Bryce Olson noted that only 4% of advanced cancer patients go into clinical trials. This number is proof of how difficult it is for patients to find a treatment for them once they are diagnosed. Not to mention, there are many other factors that can affect a patient if they find the right clinical trial. Ashanthi spoke about the financial and travel demands of a clinical trial, and how many patients are expected to travel all over the country and take time off work for these trials. There are countless sacrifices that come along with participating in a clinical trial, if you are lucky enough to find one that is a fit for you.

Gabriel Maldonado went on to highlight the importance of convenience. Patients are not only faced with financial and travel demands, but they are also faced with the inconvenience of bias or lack of diversity within clinical trials. The topic of diversity is a huge problem in healthcare, but for both Ashanthi and Gabriel, as people of color, the issue of diversity within healthcare data collection poses an issue. When agencies or companies conduct research it is important to have a wide variety of data across all patient types and races, but it is also critical to share this data with others.

Each panelist spoke about the importance of collaboration. Collaboration between patients, collaboration between doctors/researchers, collaboration between patients and doctors, etc. In healthcare there are so many types of diseases, and so many possible types of treatments for one disease. Finding the proper treatment plan for a patient can be extremely difficult, but when patients advocate about possible solutions in their community – such as genome sequencing in Bryce’s case – and when collaboration occurs between doctors and researchers, then current and future patients have a better chance at finding a diagnosis, finding a treatment, and maybe even finding a cure.