Recently, we got a chance to chat with Dyan Bryson, the Patient Advocacy Director at Retrophin, Inc. – the pharmaceutical company that is sponsoring the DUET study for FSGS patients. We took this opportunity to ask Dyan why clinical research – and the DUET study in particular – is important for Nephrotic Syndrome patients. Keep reading to see our Q&A session with Dyan!
NephCure Kidney International: Why do you enjoy/what inspires you about working in the pharmaceutical industry?
Dyan Bryson: I first came into this industry thinking I would stay 3 years, that was almost thirty years ago. I simply fell in love with the industry and its potential to help people. I came in rather naively, and at one point I became completely fed up with the lack of focus on patients. I am now back in love as the industry is finally moving towards fulfilling its potential to really help patients, not just support its brands.
I love being in an industry where companies that have awakened to putting the patient at the center of its business are also profitable – doing well by doing good. These companies can be examples to others that this can be done. We have realized that we need to support people after they have filled our prescriptions; we have to develop strategies to support their caregivers; we have to support people by realizing that the therapeutic area our drug may be managing is just one of a whole list of things a patient, a person, has to manage in their lives.
NKI: What makes participating in DUET a unique opportunity for the NS community?
DB: Participating in a clinical trial, especially DUET, is an opportunity to contribute to the knowledge and health of the community. Of course, I am biased, but as a patient advocate I know that if we truly have a drug that can help patients with this rare condition – a condition that has no existing therapy – it can help so many people in the long run. Participation allows us to collect data that may help other people avoid the current long term outcomes of end stage renal disease and transplant. Although we as the drug maker will profit, so will the community through better quality of life. If you participate you can contribute to bettering the health of others.
NKI: Why is it so important for rare disease patients and their families to care about research?
DB: Many times it is the family of, or person who has, a rare disease that brings that disease to the attention of researchers. Many times if that interaction did not happen there would be no awareness of the disease and, hence, no research. Rare diseases are not like diabetes – researchers, drug companies understand the impact of diabetes. Payers understand the impact diabetes makes on their bottom line as they pay the costs of diabetes management. All stakeholders have clear incentives to manage the disease better.
But for a disease where there is low awareness there is little understanding of the impact on a person’s health, hence little understanding of why to do the research.
Patients with a rare disease, and their care partners, are the experts on that disease as they manage it 24/7. They are the ones that can drive the understanding of the disease and interest in doing research on that disease like no one else.
I still remember the first time that, as a sales representative, my company brought a patient in to talk about the therapeutic area for which we were about to launch a drug. We all had studied and been tested for months to be certified, to confirm we knew the area well enough to talk about it with the physicians we called on. Now, finally, we were at the launch meeting to get our marching orders and celebrate the launch – fun and work at the same time. So, the patient gets on the stage, we had no idea what we are in for. The patient told their story. Soon we were ALL in tears. That one patient helped us understand why were really there. We understood their day-to-day and now we were on a mission to help. Twenty-five years later I can still see that patient on that stage; that experience informs me every single day. That is the impact of a patient telling their story, motivating and inspiring those who can do something about the disease take action.
NKI: What is your suggestion for patients that want to learn more and be more involved in clinical research?
DB: I know it can be daunting even to think about participating in a clinical trial. You think you are going to be a guinea pig, I understand and so do many others. There is a tidal wave of information out there that can help understand how trials work and help people to understand the process. The US government has even issued grants to researchers all over the country to figure out how to better inform the public about clinical trial participation (http://www.nih.gov/health/clinicaltrials/index.htm) Certainly on the NephCure site (https://nephcure.org/wp-content/uploads/2014/08/Clinical-Research-one-sheet-9162014.pdf)
Also, several healthcare advocacy groups have sites that contain materials in several languages to discuss clinical trial involvement:
- National Minority Quality Forum “Are you in” Campaign – http://www.nih.gov/health/clinicaltrials/index.htm
- National Medical Association – Project IMPACT – http://www.impact.nmanet.org/about
NKI: What do you want a participant to know before they decide to volunteer for a clinical trial?
DB: The managers of clinical trials are usually very good about providing access to information about their trial. Scour the site provided, read the materials you are given before you make a decision. Know that the managers of that trial have had to put the trial protocol, all trial materials through a review of a professional board that understands the therapeutic area for which the trial was designed. This board is called an Institutional Review Board (IRB). The purpose of the IRB is to ensure that all human subject research be conducted in accordance with all federal, institutional, and ethical guidelines. This IRB oversees the entire trial, meets at points throughout the trial and makes independent assessments to ensure the safety and well-being of the study participants.
In other words, the drug company or other researchers are running the trial with considerable oversight. The study participant is not on their own.