1. Please introduce yourself to our audience and share with us a bit about your journey with kidney disease.
Good day everyone, I’m Richard Knight, currently a Lecturer at Bowie State University’s College of Business where I’ve taught for over 20 years, and the immediate Past President of the American Association of Kidney Patients (AAKP).
My kidney disease journey began unexpectedly in 1996 when I was denied life insurance due to protein in my urine. At the time, I didn’t understand the significance of this finding. It wasn’t until July 2004 that I experienced kidney failure and was referred to the emergency room by a urologist. I initially struggled with denial, thinking I was healthy and mistakenly believing I had prostate issues.
After my diagnosis, I was placed on in-center hemodialysis with no other options presented to me. During my time on dialysis from 2004 to 2006, I began my education about kidney disease and analyzed the transplant system, noticing inefficiencies, particularly for African-Americans.
What drove me through this challenging period was my “WHY?” – my children. My daughter Kami and my son Kamal were my motivation to fight and seek better treatment options. I eventually received a kidney transplant in 2006 and have now been a transplant patient for over 18 years.
2. How did your health journey lead you to the American Association of Kidney Patients (AAKP), the oldest and largest independent kidney patient organization in the U.S. with an expanding global reach?
My journey to AAKP was born out of my experiences navigating the kidney disease treatment landscape. This motivated me to learn how to secure a kidney from a living donor and not rely on the waitlist system to provide me with a kidney.
I realized education was key – both for myself and others facing similar challenges. As I investigated the transplant process, I became determined to improve the system and help others. This advocacy mindset led me to AAKP, where I joined the Board of Directors in 2008.
Since then, I’ve held various leadership positions within AAKP, including serving on the Strategic Planning Committee, Finance Committee, and Executive Committee. I was Treasurer from 2011-2014, Vice President/Chair of Public Policy from 2014-2018, and ultimately President from 2018-2022. Currently, I serve as Immediate Past President, continuing to advocate for kidney patients nationally and internationally.
3. As a patient founded, patient led organization that serves individuals with kidney disease across the disease spectrum, what are some of AAKP’s policy priorities for 2025?
As the oldest and largest, independent kidney patient organization in the U.S. – AAKP is dedicated to improving the lives and long-term outcomes of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP fights for early disease detection and the appropriate diagnosis of rare/genetic conditions; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation including artificial implantable and wearable kidneys and xenotransplantation; and the elimination of barriers for patient access to available treatment options.
At AAKP, we define kidney disease as both a healthcare and workforce issue – and as a national organization that reaches more than one million kidney patients and their friends and family members annually, AAKP is uniquely positioned as one, if not the most, impactful patient organization in the kidney community due to its patient-centered, patient-focused structure.
As AAKP looks into 2025, we are focused on a number of key issues including eliminating Government Determinants of Health (GDoH) as it pertains to patient consumer care choice and access to new drugs, devices, and diagnostics; re-examining the current ‘bundle payment system’ as its current structure impedes patient care choice and access to new treatment options and stifles innovation; demonstrating the critical need for the next generation of transplant drugs – an unmet patient need vocalized by the kidney community to the FDA for over a decade; restoring patient and physician access to molecular blood testing for post-transplant surveillance; reducing the high rate of infections among kidney patients, especially those on dialysis by ensuring more consistent and long-term access to infection control technologies; and to enact the Sunscreen Innovation Act of 2014 to improve access sunscreens considering kidney transplant patients more than 100 times more vulnerable to serious forms of skin cancer than the general population.
4. This year’s World Kidney Day theme is ‘early detection policies,’ which follows AAKP’s longtime focus on early identification of kidney disease. As both a patient and policy expert can you describe the main challenges in the regulatory landscape for pre-empting kidney disease?
For over 10 years, the kidney community has sought a recommendation from the United States Preventive Services Task Force (USPSTF) for kidney disease screening without success. Members of the USPSTF are appointed by the Secretary of the Department of Health and Human Services and unfortunately, there are no kidney professionals included. Screening allows upstream and early disease detection which was strongly recommended in the 2019 Executive Order on Advancing American Kidney Health. New, non-invasive diagnostics and devices are available that can measure kidney function. There are new therapeutics on the market that can slow or stop chronic kidney disease (CKD) progression and kidney failure. Preventing kidney disease progression means America can reduce the demand for dialysis and the number of kidney transplants needed. If USPSTF fails to make a recommendation, kidney disease progression and failure will inevitably threaten more lives and jobs, and pose even higher costs to taxpayers through the Medicare End Stage Renal Disease Program.
5. Through Memo Therapeutics AG’s partnership with AAKP, the company had the pleasure of engaging in AAKP’s Center for Patient Engagement and Advocacy to identify participants for its Patient Advisory Board, given the distinct lack of approved treatment for BK virus infections in kidney transplant patients. What have you learned about BK virus and its impact on patients as a result of serving on the Memo Therapeutics AG’s Patient Advisory Board?
Based on my participation in the Memo Therapeutics AG’s Patient Advisory Board (PAB), I have gained significant insights about BK viremia and its impact on kidney transplant patients.
BK viremia presents a complex burden on transplant recipients. From the PAB meeting discussions, I learned that patients often receive their BK viremia diagnosis through abnormal lab results, sometimes without specific symptoms despite high virus levels. As a case study illustrated, some patients do experience physical symptoms like a burning sensation in their transplanted kidney that coincides with elevated lab values.
The treatment landscape for BK virus is challenging and inconsistent. Fellow patients on the PAB enlightened me by discussing their experiences with IVIG treatments, highlighting issues such as physical strain, travel burdens, varying costs, and inconsistent insurance coverage. One PAB member emphasized the troubling inconsistency in treatment approaches across different transplant centers.
Perhaps most concerning is the psychological impact of BK virus infection. My fellow patients who have been impacted, have all spoken about the emotional toll – it is not just a physical fight but also a mental one. The uncertainty of treatments, physical access issues, and lack of education take a significant toll on patients and their families. As noted from a caregiver’s perspective, there is constant worry about viral risks that affect their mental health as well.
I observed a consistent theme of patients feeling uninformed by their transplant teams having led them to conduct their own research and self-advocacy.
The PAB meetings also revealed significant gaps in BK virus research, as highlighted by a participating pharmacist and health economics researcher, there is a lack of diagnostic biomarkers, risk factors, and humanistic outcomes in current literature.
Through this advisory board, I have gained a deeper understanding of how the medical community needs to improve its approach to BK virus identification and management, through better patient education, more consistent treatment protocols, and greater recognition of the psychological burden on transplant recipients and their loved ones.
6. What advice would you give newly diagnosed kidney disease patients who want to learn more their condition?
Based on my personal experience as an 18-year kidney transplant recipient, here is my advice for newly diagnosed kidney disease patients…
First and foremost, become an active participant in your healthcare journey. As I emphasized in the Memo Therapeutic’s PAB meetings, patients need to take an active role in advocating for their own healthcare. Do not simply accept what you are told without understanding it fully.
Educate yourself through multiple channels. I would recommend:
- Asking your healthcare team for reliable reading materials
- Connecting with established kidney organizations like AAKP
- Reviewing AAKP’s educational webinars and seminars on kidney disease
By joining patient organizations and local support groups (as available), you will begin to better understand kidney diseases and many of its related health conditions. You will have the opportunity to build your personal patient network to connect and share experiences through communities that provide invaluable peer support and practical knowledge.
Don’t hesitate to ask questions and seek second opinions. A colleague of mine’s experience highlights how some kidney transplant recipients feel uninformed. Be persistent in seeking answers, and if something doesn’t feel right, it’s your right to get another medical perspective.
Learn about the latest treatment options and clinical trials. As noted in my resume, I analyze transplant systems and advocate for innovative patient consumer choices. The medical landscape is constantly evolving, and new treatments may be available where you may be eligible to participate in a clinical research study. The AAKP conducted a flash survey through is Center for Patient Research and Education and found that kidney patients are very altruistic in their interest in participating in clinical trials, with their number one stated benefit being that they “may help advance science and the treatment of their disease/condition.”
Because there is often a lack of patient-centered communication with nephrologists, come to every appointment prepared by writing down your questions in advance and if possible, bring a family member or friend with you.
Consider the psychological aspects of kidney disease. The PAB meeting highlighted the emotional toll of kidney disease and transplantation. Don’t neglect your mental health – seek counseling if needed, share your thoughts and feelings with those in your trusted circle.
Share your journey with others when you are ready. As I have done through my work with AAKP and numerous advisory boards, sharing your experience not only helps others and contributes to improving kidney care for everyone, but it can also be self-rewarding.
Remember your “WHY?” – as I mentioned, my children were my motivation through challenging times. Identify what motivates you to take care of your health and keep that front of mind.
Finally, recognize that you are an expert on your own experience. As a friend emphasized in PAB meetings, sometimes patients need to educate physicians about their condition. Your lived experience is invaluable and should never been discounted. Bringing that perspective to your healthcare team can improve your care.
7. And finally, how can biotech companies better ensure patients are substantively engaged in all aspects of a product’s lifecycle?
One of the most medically vulnerable populations in America, people living with kidney diseases, is rewriting the book on scientific research and medical innovation by expanding their impact on basic research, applied research, and the key regulatory and payment deliberations that determine when safe, new products reach the market. Kidney patients have support from a growing national and global alliance of research professionals, kidney medicine experts, elected and career government officials, and private industry executives and investors who respect patients and view their insights and advocacy as the catalysts driving long-overdue cures for kidney diseases and transformations in kidney health.
AAKP founded its Center for Patient Education and Research in 2016 to serve as a rapid fulfillment hub for government, academic, medical device manufacturers, and pharmaceutical industry requests to engage kidney patient experts. The Center also supports AAKP’s efforts to speed up the utilization of unique patient insight data across the product development lifecycle and within regulatory and payment decisions, including those made by commercial insurers. Since its launch, AAKP has dramatically expanded its membership databases, social media recruitment, and analytics tools. The organization now services dozens of requests every year for clinical trial awareness and recruitment campaigns, patient advisory boards, technical evaluation panels, focus groups, patient surveys, clinical research, and public policy research. AAKP leaders and staff provide expert advice to organizations and companies on how to work meaningfully with patients as co-investigators and partners and offer online training for patients on how to be equally effective collaborators.
Industry must move away from patient engagement as a ‘check off the box’ activity. Leveraging patient partnerships for enhancing R&D isn’t just the ethical choice; it’s also a sustainable, scalable, and imperative approach. The positive outcomes of these efforts support a noticeable enhancement in trust and collaboration with key stakeholders in the kidney space. Patient-centered approaches and collaborative partnerships between industry and patient advocacy groups play a pivotal role in advancing health equity.
Patients are the ultimate end-user of a drug, device, or diagnostic – engaging with your target community at the front end, leads to more relevant and impactful research, ensuring that studies truly address unmet patient needs, improve health outcomes, and enhance an individual’s quality of life.
