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 and your family! The content is meant to keep you and/or a family member up to date on the latest information to help you manage your health now and in the near future in consultation with your physician.
In this month’s CKD Insider:
News from Kidney Organizations
NKF Michigan (SOCKS) Support Group Meetings
The National Kidney Foundation (NKF) Michigan Supporting Our Chronic Kidney Struggles (SOCKS) group hosts their support group meeting bi-monthly. Speakers are brought in to share knowledge and answer questions based on the groups interest and time is always allotted for you to share what is going on in your life! Even if you don't live in Michigan it is worth joining.
When: 1st and 3rd Monday of the Month, Time: 6:30 – 8:00pm EST
Where: Zoom Video Conference, Facilitators: Katja Hansen & Greg Mears
RSN Access to Innovation Webinar
The founder of the Renal Support Network (RSN), Lori Hartwell discusses the latest innovations for people on dialysis with Nephrologist Dr. Jeffrey Silberzweig and the advantages and disadvantages of the current payment system, and potential solutions.
Watch the webinar here.
AKF Eating When on Dialysis
The American Kidney Fund (AKF)s' eating when on dialysis webpage provides you with information to help you eat healthy while living on dialysis. They have also created a downloadable guide to dining out to help you choose and avoid foods when you are at a restaurant or fast food establishment using the common names found on menus.
Check out the Guide to Dining Out here.
Advocacy Opportunities
National Kidney Month ends today, but advocating to government officials regarding your needs as a member of the dialysis and/or transplant communities does not end this month. Help get the message out on the NKF advocacy initiatives that resonate with you.
Visit NKF Voices for Kidney Health and take action here.
Advocacy News: Kidney PATIENT Act Passes out of the House Ways and Means Committee
The bipartisan Kidney Patient Access to Technologically Innovative and Essential Nephrological Treatments (PATIENT) Act, co-sponsored by Terri Sewell (D-AL) and Carol Miller (R-WV), passed 41-1 in the House Ways and Means Committee. The Centers for Medicare and Medicaid Services indicated that it would move coverage of oral-only kidney disease drugs to the ESRD Prospective Payment System (PPS), also known as the "bundle,” starting next year, which could cause access and affordability issues for many patients. The Kidney PATIENT Act ensures that patients have access to oral-only kidney disease therapies through their Medicare Part D benefit until 2027. The bill will now move to the House floor for a vote.
Learn more about this bill from the American Kidney Fund here.
The first ever National AMKD Awareness Day April 30th!
Join the American Kidney Fund (AKF) to celebrate APOL1-Mediated Kidney Disease (AMKD) Awareness Day! Learn about AMKD here.
Your Fun Tip of the Day!
Game time!
It's time to introduce some fun into your in-center dialysis sessions. You can take the lead and get the dialysis support team and your chair mates in on the games, and maybe you can even convince your dialysis team to provide some prizes to keep everyone motivated. Check out some ideas below.
Fun days: pajama day, sports team day, hat day, wear your favorite color day, etc.
Bingo game day: everyone gets a board and staff call out numbers during treatment
Get to Know Your Neighbor: provide a list of fun questions for everyone to ask one another (examples: can you wiggle your ears? What is your favorite dessert? What is one thing you think will surprise everyone about you?) This sparks conversation and can make the time go faster.
Picture Day: Bring in your favorite picture without people in it, and explain why it's so special to you, share the memory in detail and let others live vicariously through your experiences.
For transplant recipients:
Check out the upcoming Transplant Games of America this July in Alabama. Regular registration ends May 3 for both adults and youth. July 5-10, 2024: Birmingham, Alabama
Innovation News
First Successful Transplant of a Genetically-Edited Pig Kidney
What it is: This month, surgeons at Massachusetts General Hospital in Boston successfully transplanted a genetically altered pig kidney into a 62-year-old man with end-stage renal disease. The pig kidney was modified to be more compatible with humans and to eliminate the risk of infection. This approach was developed during a five-year collaboration between Massachusetts General and eGenesis and their research was published in Nature last year. Both the University of Alabama (UAB) and New York University (NYU) have transplanted pig kidneys into humans who have no brain activity in the last year. This is the first transplantation into a living person.
The procedure was performed under a single FDA Expanded Access Protocol (EAP) – known as compassionate use – granted to a single patient or group of patients with serious, life-threatening illnesses or conditions to gain access to experimental treatments or trials when no comparable treatment options or therapies exist. The recipient also received infusion of novel immunosuppressant drugs, tegoprubart, provided by Eledon Pharmaceuticals, Inc., and ravulizumab, provided by Alexion Pharmaceuticals, Inc.
Why it’s important: If you are on a wait list for a kidney transplant and are wondering when that day will arrive, seeing the progress made in the last year alone can provide hope that a transplant option for you is closer than you think. As there are far fewer kidneys available than needed, Xenotransplantation, the transplant of organs from one species to another, has become an important and feasible option to increasing the number of available organs. This marks a huge milestone for access to kidneys for transplantation.
Read more here.
KDIGO New 2024 Guidelines for people with CKD
After 12 years, the Kidney Disease: Improving Global Outcomes (KDIGO) Guidelines have been updated. These guidelines cover advancements in the evaluation and management of CKD and are designed to assist healthcare providers in decision-making.
The guidelines are split into 5 chapters, with highlights that include:
Detection of CKD, including guidance on using updated equations for race-free estimated glomerular filtration rate (eGFR) and albumin-to-creatinine ratios
Guidance on assessing CKD risk and the use of CKD risk prediction equations
Recommendations for delaying kidney disease progression by managing blood pressure, diabetes, lipids, chronic kidney disease–mineral and bone disorder (CKD-MBD), and anemia; treatment recommendations for preventing and managing cardiovascular disease in patients with CKD
Recommendations for medication management
Best practices for kidney care and how to integrate with specialists to support the patient
You can find the full guidelines here or read a summary of the report here. Speak with your nephrologist to determine if these updated recommendations should be considered as part of your treatment plan. If you have a family member with CKD pass this on to them as well.
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