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
AKF Educational Series: Learn about the causes, symptoms, and treatments of C3G
The American Kidney Fund (AKF) has put together information and videos about C3 glomerulopathy (C3G) so you can learn the signs and symptoms as well as treatments for C3G. C3G causes inflammation and damages glomeruli in the kidneys that help filter toxins from the blood. C3G often is diagnosed in children and young adults.
Learn more about C3G or request a guide here.
AAKP Support Groups Listing by State
If you are looking for an in person support group, the American Association of Kidney Patients (AAKP) has a list of support groups by state. Click on the link for your state and get the support you need. California - Florida - Kentucky - Louisiana - Maryland - Massachusetts - Nevada - New Mexico - Ohio - Pennsylvania - South Carolina - Texas - Washington
Join Walks for the Kidney Community this Spring
The AKF 37 Mile Challenge Returns this Spring
It’s time to register for the American Kidney Fund 37 Mile Challenge, a fundraising event that helps AKF provide financial assistance for dialysis patients, kidney transplantations, disaster grants, children and family support programs, and more. You can learn more and register here.
NKF KidneyWalk Spring Events
The National Kidney Foundation has many upcoming Kidney Walks. The KidneyWalk is a fundraiser for NKF that funds research, advocacy, and transplantations. You can find one near you here.
Get Creative Online Meet Up from the Renal Support Network
On the 3rd Thursday of each month at 4:00pm – 5:00pm PT, the Renal Support Network (RSN) holds a live Meet Up to share creative endeavors with fellow kidney patients and get inspired. February 15th is the next meeting. You can learn more and register here.
Advocacy Updates from AKF: 2024 Legislative Priorities
Many bills that would impact kidney patients have been introduced to Congress and will be voted on in the coming year, including the ones listed below. If you would like to contact your representatives to share your thoughts on these important pieces of legislation, The American Kidney Fund (AKF) has summarized each bill and provided helpful information and scripts. See below for full list with explanation.
Your Fun Tip of the Day!
Try something you have never done before
It's a new year and a great time to try something new. Trying something you have never done before might seem scary but it has more benefits than you might think. Overcoming the challenge of learning something new can make you feel successful, and as you are learning you can laugh along the way which is always a good thing!
Try juggling. A new way to challenge your mind, and keep your brain sharp. You can start small and move up as you improve. If juggling isn’t top of your list, find something that is and get started!
Identify something new you haven't done before (ex: juggling)
Make an achievable plan, start small (ex: don't expect to be juggling 10 pins or balls at once)
Figure out the time needed and make a plan (ex: find a group juggling class and schedule it)
Follow up - take a picture to remind yourself of your accomplishments along the way.
If you want to try juggling which is great way to keep your mind and hand body coordination sharp, check out local places near you to give it a try in person or check out the YouTube video below.
FDA Grants Full Approval to Tarpeyo for IgA Neuropathy
What it is: After receiving accelerated approval in 2021, Tarpeyo has now been granted full FDA approval to treat IgA neuropathy or IgAN. IgA neuropathy is an autoimmune condition where antibodies accumulate in the kidneys, resulting in kidney damage. In clinical studies, Tarpeyo significantly improved eGFR following a 9-month course of treatment.
Why it’s important: IgAN is considered a rare disease, though it affects nearly 100,000 people in the United States. Tarpeyo, a B cell immunomodulator therapy, is the first approved treatment for IgAN.
First Infant Patient in Georgia Receives Continuous Renal Replacement Therapy Using the CARPEDIEM Machine
What it is: CARPEDIEM is a continuous renal replacement therapy device that was approved by the FDA. CARPEDIEM was developed 10 years ago at Cincinnati Children’s Hospital and received FDA clearance in 2020. In January, the first patient in Georgia received therapy using CARPEDIEM.
Why it’s important: Each year in the United States, approximately 10,000 children develop acute kidney injury. Most children require dialysis in the ICU to survive. However, prior to CARPEDIEM, the CRRT machines were only intended for use in patients weighing at least 44 pounds. CARPEDIEM can be used on patients weighing as little as 5.5 pounds.
Learn more here.
Advocacy Updates from AKF: 2024 Legislative Priorities
Many bills that would impact kidney patients have been introduced to Congress and will be voted on in the coming year, including the ones listed below. If you would like to contact your representatives to share your thoughts on these important pieces of legislation, The American Kidney Fund (AKF) has summarized each bill and provided helpful information and scripts.
1. The Living Donor Protection Act of 2023 (H.R.2923 /S.1384) would ensure that living organ donors have protections against discrimination by insurance carriers under the Family Medical Leave Act (FMLA).
2. New Era of Preventing End-Stage Kidney Disease Act of 2023 (H.R. 6790) would support research and programs to better understand and diagnose rare kidney diseases.
3. Restore Protections for Dialysis Patients Act (H.R. 6860) would ensure that insurance companies comply with the Medicare Secondary Payer law, clarifying that a health care plan cannot discriminate against dialysis patients by providing fewer dialysis services compared to services for other chronic illnesses.
4. Chronic Kidney Disease Improvement in Research and Treatment Act (H.R. 5027) would increase awareness of kidney disease and expand preventative services, including the addition of kidney screening to Medicare benefits, expanding Medicare kidney disease education, Expanding Medigap plan access, support research to identify ways to increase kidney transplantation, increase provider payments, and expanding Transitional Drug Add-On Payment Adjustment (TDAPA) to Medicare Advantage Plans.
5. The Kidney PATIENT Act (H.R. 5074) delays the addition of oral-only end-stage renal disease (ESRD) drugs into the ESRD bundle until 2033 or until new intravenous therapies are available, giving facilities and providers more flexibility while hurdles are addressed.
6. Access to Genetic Counselor Services Act of 2023 ( H.R. 3876/ S. 2323) would recognize genetic counselors as healthcare providers so they can be reimbursed by Medicare, expanding access to these providers for kidney patients.
7. PASTEUR Act of 2023 (H.R. 2940/S. 1355) would create a "Committee on Critical Need Antimicrobials" to work toward a way to address the lack of new antimicrobials. The last antibiotic came to market 40 years ago and resistant “superbugs” continue to be a problem, especially for kidney patients on dialysis and immunocompromised kidney transplant recipients.
8. CARING for Social Determinants Act of 2023 (H.R. 1066) would require the Centers for Medicare & Medicaid Services (CMS) to provide guidance every three years to each state to address Social Determinants of Health, environmental and demographic factors that put a person at risk. Communities of color are disproportionately affected by kidney disease.
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