1. What influenced your transition from a career in the pharmaceutical industry to patient advocacy?
Professionally, I came to a fork in the road in my career. I took inventory of my strengths and assessed the marketplace. I concluded that my professional experience combined with my lived experience with kidney disease provided unique value outside of a corporate environment. At the age of 53, I started out on my own. Without any doubt, the last ten years have been the most fulfilling and happy of my career. I am very grateful for my wife, Kathy, and my close friends who supported and encouraged me to follow this path.
2. How did your personal health journey inform your current role as a patient advocate consultant?
I had such profound gratitude in receiving a pre-emptive kidney that I felt obligated in repaying my gift. It resulted in me pursuing a nontraditional career path. The path certainly has not been easy, but in the end, the challenges were all worth it. I believe that I am doing the work that I was called to do.
3. What does patient advocacy involve and why is it important?
First and foremost, it requires a credible patient voice. This is achieved by understanding kidney health policies and ensuring they are patient centered, not scented. This requires an investment of your time to educating yourself and actively advocating for patient-centered policies. Secondly, it means that you are advocating for future kidney patients to improve their lives. Finally, it means speaking up for patients whose voices have been ignored. The patient voice is critically important because we are in the process of global change in the treatment of kidney diseases. In the US, we are transitioning to a system of care that is beginning to prioritize policies that support kidney health over kidney failure.
4. As a Patient Editor for the Clinical Journal of the American Society of Nephrology (CJASN), how do you ensure that the patient perspective is effectively incorporated into scientific publications?
As a guiding principle, I strive to have diverse patient perspectives captured to ensure that research is relevant to the patient community. This means ensuring the patient voice is not only captured in the United States but from around the world, including Europe, Asia, Latin America, etc. This initiative by CJASN is one element of a larger strategy of the American Society of Nephrology (ASN) to elevate the patient voice as a stakeholder in the future of kidney care. The patient voice is also being represented this week at Kidney Week, ASN’s annual meeting in San Diego. Patient advocates will be moderating and speaking during sessions, and I am serving my second term on the Kidney Health Initiative Board of Directors. These are just a couple of examples of systematic effort by ASN to strengthen the patient voice as an equal stakeholder.
5. What role do you see patient advocates playing in clinical trial design and recruitment?
Incorporating patient insights into clinical trial design and ensuring that the patient voice is captured at least before the start of the Phase 2 trial is essential. Including patient-reported outcomes alongside traditional endpoints in all trials adds significant benefits. If this is done, greater value can be added into the clinical development program while preventing many future problems that can increase the cost of the clinical development program. Unfortunately, this is not the norm, and more needs to be done to ensure that the research meets scientific standards while addressing patient needs and lived experiences.
6. What do you think are the most pressing unmet needs for kidney disease patients today?
- For the global nephrology community to prioritize policies for kidney health. Included within kidney heath is screening patient populations that are at high risk for kidney diseases and intervening with therapeutic interventions.
- Ensuring global access to innovative therapeutic treatment options, addressing inequalities in underserved markets. Especially in patient populations that are most vulnerable to kidney diseases, such as people over the age of 60, and those with diabetes or hypertension.
- Therapeutic innovations for kidney transplantation and dialysis treatments that enable patients to participate in life more fully. At ten years post-transplant, 50% of kidney transplants fail and there is a 60% mortality rate for incenter hemodialysis patients at five years.
7. How can biotech companies better engage with and support the kidney transplant community?
I suggest following the FDA guidelines on Patient Focused Drug Development. In its essence, the guidelines recommend that the innovator or biotech company engage with the patient community as early as possible and maintain contact with the patient community on a consistent basis. In addition, the representative patient community must be the focus of the engagement.
