On Wednesday, August 23, and Thursday, August 24, ASN engaged in educational outreach with key Congressional policymakers in Seattle, WA, and Clinton, MD. From opposite sides of the country, ASN members and staff informed congressional members and their staff on recent policy advances and further opportunities to improve kidney care. These events were planned through discussions with congressional staff during the ASN Kidney Health Advocacy Day in March.
Roundtable with Representative Suzan DelBene, Kidney Caucus co-chair
Innovation in kidney health and transplantation were twin foci of interest to Representative DelBene during the visit on Wednesday, August 23. Convened in partnership with Northwest Kidney Centers and the University of Washington (UW), Representative DelBene made a point to connect with patients, researchers, and health professionals in her home district to better understand the needs of the 37 million Americans with kidney diseases and ultimately guide her work as co-chair of the Congressional Kidney Caucus.
Representative DelBene first reaffirmed her commitment to accelerating innovation in kidney health, visibly through her longstanding championing of the Kidney Innovation Accelerator (KidneyX), while making it clear that what matters most is that patients have choices in their care. Jonathan Himmelfarb, MD, FASN, past president of ASN and co-director of the Center for Dialysis Innovation at UW, thanked the congresswoman for her leadership on behalf of KidneyX and shared several advances his laboratory has made. Encouragingly, he noted that the pace of innovation in kidney health has been steadily increasing, but more work is needed to foster innovation.
Suzanne Watnick, MD, FASN, chief medical officer at Northwest Kidney Centers and member of the ASN Quality Committee, provided an overview of the many exciting advancements in transplant care through the Health Resources and Services Administration Organ Procurement & Transplantation Network (OPTN) Modernization Initiative, made possible through the Securing the U.S. OPTN Act. Particularly, Dr. Watnick noted the emphasis placed by the initiative on transparency and accountability, key improvements needed to expand access to transplant care.
The importance of transparency and accountability, especially to empower patient decision-making, was remarked on by Glenda Roberts, director of External Relations and Patient Engagement for the Kidney Research Institute and of the Center for Dialysis Innovation at UW, and John Mosby, PhD, president of Highline College in Washington. Living with kidney diseases, Dr. Mosby and Ms. Roberts shared that increasing patient leadership in their care can only be possible with increased transparency—often patients are excluded from important decision-making, such as deciding whether to accept a donated kidney.
Ms. Roberts noted that further advancements are needed, including an improved system to allow people seeking a transplant to better understand the transplant programs that match their care. At the same time, existing commitments, such as OPTN's policy to recalculate transplant waiting times after adopting a race-neutral formula for diagnosing kidney function, should be followed through. Yue-Harn Ng, MD, a transplant nephrologist and professor at UW, affirmed that a matching system is key to improving outcomes and reducing disparities, noting that it is an active project that she and her colleagues are taking on. At the same time, metrics to which transplant programs are held accountable must also be aligned with expanding access to transplant care for patients, Dr. Ng noted.
Representative DelBene's roundtable concluded with a tour of the Northwest Kidney Centers clinic, which hosted the meeting. A strong champion of kidney health, she pledged to continue her work to support individuals living with kidney diseases. She highlighted her strong bipartisan relationship with Representative Larry Bucshon, MD, of Indiana, the Republican co-chair of the Congressional Kidney Caucus, and shared her hope that efforts to achieve kidney health would rise above partisan differences embroiling Congress. ASN is excited to continue collaboration with Representative DelBene on the numerous priorities raised during the roundtable and beyond.
Congressional visit to U.S. Renal Care
On Thursday, August 24, ASN, the National Kidney Foundation, and U.S. Renal Care hosted the Congressional Kidney Caucus at a U.S. Renal Care dialysis clinic in Maryland. The event gave congressional staff an opportunity to view different aspects of the facility and witness firsthand the day-to-day experience of people who are affected by kidney failure and undergo in-center dialysis.
Facility administrators guided participants through the dialysis clinic, including the treatment floor, water room, and home dialysis training room. Congressional staff were also given the opportunity to meet with a patient actively receiving dialysis, a living donor, and a kidney donor recipient.
Participants learned how in-center dialysis is the most common therapy used to clear waste and extra fluid from those who are experiencing kidney failure and how dialyzing is typically performed 3 days a week for 4 hours a day. While touring the treatment floor, participants also learned about how an in-center dialysis facility is staffed with two types of technicians: patient care technicians on the treatment floor and biomedical technicians in the water room. Both work under the supervision of a registered nurse or nephrologist. The patient care technician is responsible for starting and ending dialysis treatment, as well as providing patients with any additional support needed during treatment. There are ideally four patients assigned to each patient care technician—a ratio that is being put at risk due to recent health workforce shortages impacting dialysis centers across the country.
In addition to meeting the staff present on the treatment floor, participants were also given the opportunity to speak with a patient actively receiving dialysis. The patient on the treatment floor spoke to congressional staff about how they have been deliberating with the care team about reducing their time receiving dialysis. Thanks to the help of a renal dietitian, they were able to reduce their time on dialysis by 15 minutes per session.
The second stage of the tour was of the facility's water room, the most integral part of the dialysis unit. Participants learned that a water treatment room is a dedicated, secure, and access-controlled area where water filtration and purification occur. The filtration system itself is complex and includes various components, such as sediment filters, water softeners, carbon tanks, microfilters, disinfection units, storage tanks, and reverse osmosis units. In addition to an overview of the water room equipment, participants met with the biomedical technician responsible for the maintenance of the room, as well as ensuring that the water quality meets the standards set by the Association for the Advancement of Medical Instrumentation. The biomedical technician informed participants that, on average, a dialysis patient is exposed to approximately 40 gallons of water per treatment session. As the global water cycle is disrupted by climate change, ensuring an adequate supply of medically pure water for dialysis will be increasingly important.
The third part of the facility tour was an overview of the home dialysis training room, where staff members educate and assist eligible patients during the process of transitioning from in-center dialysis to home dialysis. Training usually takes 4–8 weeks and is conducted individually by a home training nurse. During the training program, patients learn everything they need to know about performing hemodialysis treatments safely and effectively in their homes. Participants met with the home dialysis training nurse to learn about various types of home dialysis machines and the necessary support equipment and supplies used by patients during home dialysis. The home dialysis training nurse emphasized that they make home visits before patients start the treatment to ensure that the patients are equipped with everything needed to dialyze.
The final part of the facility visit consisted of a roundtable discussion among ASN and congressional staff, dialysis facility staff, a home dialysis patient, a kidney donor, and a kidney transplant recipient. The conversation provided an opportunity to learn about each patient's unique experience with the facility and discuss with the congressional staff policy recommendations and ideas that they have. Particularly, passing the Living Donor Protection Act (H.R. 2923/S. 1384) was of major interest.
ASN is currently engaging members of Congress and their staff to schedule similar events in the future. If you would like to plan an event in your district, please reach out to Killian Gause, Policy and Government Affairs Associate, at kgause@asn-online.org, to discuss ways you can engage your members of Congress.
