September 2025 CKD Insider Newsletter
- one track health
- Sep 30
- 5 min read
Welcome to the Chronic Kidney Disease Insider Newsletter. If you are living with chronic kidney disease (CKD) on dialysis, have had a kidney transplant or are helping care for someone who is, this newsletter was created for you! The CKD Insider Newsletter provides actionable information for you and your family to help you manage your health in consultation with your doctor.
In this month’s CKD Insider:
Latest News from Kidney Organizations
Reminder: 50th Annual AAKP Patient Meeting – Starting October 3rd
Whether you’re living with kidney disease or supporting someone who is, the American Association of Kidney Patients (AAKP) invites you to a special event just for you.
You’ll hear directly from fellow kidney patients and AAKP advocates as they share their experiences and lead sessions on important topics, such as navigating healthcare networks, shared decision-making with your care team, and lifestyle factors that can improve kidney health outcomes.
Date: October 3rd-5th, 2025
Location: In person Fort Worth, Texas and Virtual
Register here.
Health and Human Services (HHS) Announced Changes to Transplant System
In September, the U.S. Department of Health and Human Services (HHS) announced updates to the organ transplant system aimed at improving safety, transparency, and support for patients and donors. These changes include stronger protections for both donors and recipients, better communication for patients on the waitlist, and expanded financial support for living donors by additional investment in the National Living Donor Assistance Center (NLDAC).
This means:
More transparency: You’ll be notified of any changes to your transplant waitlist status, and new dashboards will show how organs are allocated and how fees are used.
Improved safety: A dedicated committee will monitor and respond to safety concerns in the transplant system.
Support for living donors: Donors may be eligible for coverage of costs associated with travel, lodging, meals, childcare, and lost wages through the Living Organ Donation Reimbursement Program.
These updates are designed to make the transplant process safer, fairer, and easier to navigate. Read the National Kidney Foundation (NKF) statement of support here. Public comment on these changes is still open here.
Advocacy Opportunity: Organ Procurement Act protecting patients and organ donors
The Permanent Organ Procurement Transplant Network (OPTN) Fee Authority Act is a new bill introduced in Congress in September. If it becomes law, it would help protect patients and organ donors in several important ways:
It makes sure there is steady funding to keep organ allocation safe, fair, and on time for the 90,000+ people waiting for a kidney transplant.
It protects patients from extra costs by making it clear that transplant centers—not patients—must pay the fees.
It improves transparency by requiring public reports and dashboards, so people can see how the system is working.
It requires independent oversight to make sure money is used responsibly and organs are shared fairly.
You can read the National Kidney Foundation’s (NKF) statement in support of this bill here. You can also see more from the lawmakers who introduced it here.
Congress wants to hear your voice. You can share your opinion by contacting your representatives. Just click the “Contact Your Member” link on the top right of the bill’s page here.
Your Fun Tip of the Day
Enjoy nature webcams that soothe the soul
Get a front row seat to nature's best show and see how quickly the hours of dialysis can fly by. Go to Explore.org and watch live nature cams from around the world, from bears by rivers, to lions dens, to tropical reefs. Because the feeds are live, there’s always something new to see. You might be surprised how fast time can slip by when you’re watching animals, birds and and sea life in their natural habitat.Instead of staring at the clock, you’ll be leaning in, curious: “What’s next?”
Tip: Bookmark your favorites in Explore.org (bear cams, river cams, forest cams) so you can access them quickly when you need to be transported to your favorite nature scenes.
Become a volunteer. Explore invites people to volunteer as remote camera operators helping monitor cams, pan or zoom to interesting views, and alerting staff if something unusual happens. That means you could play a small role in bringing these peaceful scenes into other people’s lives, and even potentially help lost hikers find their way home as one volunteer did! Sign up here.
Human Trials for Pig Kidney Transplantation Approved to Proceed
What it is: The FDA has approved a clinical trial by eGenesis to test a genetically engineered pig kidney (called EGEN-2784) in people with end-stage kidney disease (ESKD). The first patient in this trial has now had 7 months of successful kidney function with the pig kidney. Another trial is also underway at NYU Langone Health, where researchers are currently recruiting participants to test pig kidney transplants in humans.
Why it’s important: There are over 90,000 people waiting for a kidney transplant, and not enough donor kidneys to meet the need. Scientists are exploring xenotransplantation, the process of transplanting organs from animals to humans, to address this shortage. These recent trials mark exciting progress, showing that pig kidneys may one day offer a safe and effective option.
You can learn more about the NYU trial and see eligibility requirements here.
Trial for New Type of Hemodialysis Connection is Recruiting Female Patients with ESRD
What it is: A Phase 3 clinical trial is testing a new type of hemodialysis connection, called an acellular tissue-engineered vessel (ATEV), to assess its effectiveness and safety compared to the standard option, an autogenous arteriovenous fistula (AVF). This study focuses on women with end-stage kidney disease who need hemodialysis. The ATEV is created by growing cells on a specially designed biodegradable scaffold. Once the cells produce a natural structure (called a matrix), both the scaffold and the cells are removed, leaving behind a cell-free structure that can be used in the body.
Why it’s important: For people on dialysis, the AVF is the most common choice. While AVFs work well and result in fewer infections than older methods, they can sometimes cause problems. One issue is steal syndrome, where blood flows in the wrong direction in an artery. AVFs can also affect the heart because they change how blood flows through the body. This study is important because the ATEV might offer a safer and more comfortable alternative for patients.
The trial is recruiting participants at 32 different locations in 16 states. If you are a female patient with ESRD requiring dialysis and are at least 18 years of age, you may be eligible. You can learn more about this trial and participating sites here.
Please share this with family and friends looking to stay informed on the latest actionable chronic kidney disease news, with a fun tip boost of positivity in every newsletter!
Download the OneTrackHealth app today!
Copyright © 2025 | Life4ward, LLC | All rights reserved.
Comments