Kidney disease and clinical trials: A Q&A with the American Kidney Fund
Is there a connection between kidney disease, cardiovascular disease, and diabetes? What’s exciting about upcoming kidney disease clinical trials? Why is diversity in the kidney disease clinical research space so important? We spoke with Michael Spigler, Vice President of Patient Services and Kidney Disease Education at the American Kidney Fund (AKF) to learn more about AKF’s mission, what they’ve been doing to support the kidney disease community throughout the COVID-19 pandemic, and how they’re supporting research initiatives.
What is AKF’s mission and how did you get your start?
AKF's mission is to fight kidney disease and help people live healthier lives. AKF was founded in 1971 by a group of people whose friend was bankrupted by the cost of lifesaving dialysis treatments. In our first year, we were able to raise funds to help that one patient, along with several dozen others. Today, our financial assistance helps more than 80,000 Americans pay for their health insurance premiums and other health care-related costs not covered by insurance, and we offer an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation, and advocacy. No kidney organization directly impacts more lives than AKF.
Can you tell us about AKF’s partnership you have with the American Heart Association and the American Diabetes Association? What is the connection between kidney disease, cardiovascular disease, and diabetes?
In 2020, AKF joined the American Heart Association and the American Diabetes Association’s Know Diabetes by Heart™ campaign. This joint initiative aims to increase awareness of the connection between type 2 diabetes, heart disease and kidney disease to help people prevent or reduce health risks associated with all three. Know Diabetes by Heart offers a variety of resources for people living with diabetes and their loved ones, including educational materials, recipes and the latest news and research related to diabetes and heart disease. By partnering together, our organizations hope to raise awareness about the vital role that kidneys play in heart health and to encourage people with diabetes and/or heart disease to get tested annually for kidney disease.
Diabetes affects more than 34 million Americans and puts people at greater risk for both heart and kidney disease. People with diabetes are twice as likely to be diagnosed with heart disease or stroke compared to people without diabetes, and it is also the number one cause of kidney failure. But it is not just diabetes that connects kidney and heart disease. When your heart is not working properly, it can cause damage to your kidneys, and vice versa.
Antidote’s Match tool powers your clinical trial search engine. What other resources and support does the AKF offer for kidney disease patients?
For clinical trials specifically, AKF has a digital hub of resources on our website to answer questions, dispel myths and provide information about what participating in a clinical trial means. We are very pleased to offer Antidote’s Match tool on our website—it provides a user-friendly experience to help patients navigate the process of finding clinical trials. We also have webinars and videos for both health care professionals and people living with kidney disease about clinical trials.
Outside of clinical trial information, AKF has an abundance of resources for people living with kidney disease. You can find information on our website about prevention and screening for kidney disease; rare kidney diseases; possible health complications; understanding treatment options; and how to become a living kidney donor. We have educational webinars, as well as video series on our YouTube channel. People living with kidney disease can also explore our Kidney Kitchen® website for more than 700 kidney-friendly recipes, downloadable guides, and cooking demonstrations to help follow their nutritional and fluid intake guidelines. AKF also has an Advocacy Network of more than 17,000 AKF Ambassadors who advocate with us for public policies that will improve the lives of people living with kidney disease and living organ donors.
What is AKF doing to make the community aware that participating in clinical trials is important? How are you advocating for diversity in kidney disease clinical research?
AKF’s diversity in clinical trials awareness campaign addresses the reservations people living with kidney disease may have about participating in clinical trials. Through our clinical trials website page, webinars, videos and online quiz, AKF hopes to dispel harmful myths and misconceptions about clinical trials and help people with kidney disease understand the benefits—in terms of both individual health and the health of the overall kidney disease community—of clinical research.
Clinical trial enrollment must reflect the diversity of the people affected by the disease and who will be using the medicines or treatments that are being studied. However, people of color are often underrepresented in clinical trials. Our campaign focuses on the importance of diversity in clinical trials, and we have recently enhanced our campaign materials. Campaign enhancements include content for Spanish-speaking audiences and a video series featuring Black and Hispanic people with kidney disease discussing their participation in clinical trials.
What excites you most about upcoming kidney disease research and clinical trials?
The sheer amount of kidney disease research being conducted now is exciting. Twenty years ago, there were almost no clinical trials addressing kidney disease research, and new drugs or treatments came to market infrequently. Now there is a new treatment or clinical trial nearly every month. Rare kidney diseases for which there have been no cures now either have actual treatments on the market or clinical trials taking place to find those treatments. This is an extremely exciting time for kidney disease research.
How has AKF supported the kidney disease community throughout the COVID-19 pandemic?
In early March 2020—at the very start of the pandemic here in the U.S.—AKF established its Coronavirus Emergency Fund. This fund provided financial assistance to low-income people receiving dialysis treatments or living with a kidney transplant who faced unexpected expenses because of the pandemic. The emergency grants helped pay for food, transportation, and medications. In addition to the Coronavirus Emergency Fund, we launched an ongoing COVID-19 education campaign in March 2020 to bring vital health education information to people with kidney disease. Some of these resources include answers to frequently asked questions about COVID-19, advice for continuing dialysis treatments during the pandemic, vaccine information, and a webinar with a nephrologist to answer questions about COVID-19.
Kidney disease research can only move forward with clinical trial volunteers. Interested in helping study teams advance the development of kidney disease treatments? Click the link below to see if you’re eligible for a study.