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 Kidney Advocacy Committee (KAC) Informational Session
The National Kidney Foundation's (NKFs) Kidney Advocacy Committee (KAC) is dedicated to advancing kidney care policies across the entire care continuum from diagnosis to transplant. Volunteer advocates have the opportunity to participate in a wide range of activities including meeting with federal and state elected officials to build support for legislation in Congress and their state capitals. Topics include preventing insurance discrimination against living organ donors, supporting living organ donation, and increased funding for programs to research and treat CKD.
Join the NKF KAC informational session to learn more
August 9th, 12:30 PM ET
Register here.
AKF and HDU One-Day Virtual Dialysis at Home Event
The American Kidney Fund (AKF) and Home Dialyzors United (HDU) are co-hosting a free one-day virtual event. The event will bring together members of the kidney community, including patients, advocates, care partners, and health professionals. The discussion will focus on options for home dialysis and practical ways to improve your quality of life and meet your goals while on home dialysis.
September 14th, 11:00 AM - 5:00 PM ET
Learn more & Register here.
AAKP 48th National Patient Meeting Registration is Open
The American Association of Kidney Patients (AAKP) is hosting the virtual National Patient Meeting September 20 -22nd. This interactive virtual meeting has a diverse speaker line-up featuring kidney community members that include medical professionals, researchers, industry partners, non-profit organizations, and government representatives.
September 20th-22nd
Learn more & Register here.
ASN KidneyWeek Conference Registration is Open
The American Society of Nephrology (ASN) KidneyWeek is the world’s largest nephrology meeting of healthcare providers, researchers, and other kidney community members. Recordings of educational sessions will be available online afterward as part of KidneyWeek On Demand.
November 1st - 5th. Philadelphia, PA
Learn more & Register here.
Advocacy Opportunity: Honor the Gift & Make Your Voice Heard: Medicare Policy Changes that Impact Transplant Recipients
To spot early signs of transplant rejection, it’s essential that patients have access to post-transplant testing. Recent changes to Medicare coverage policies reduce access to critical non-invasive post-transplant testing.
It’s important that your representatives in government hear from the kidney community. There is a letter currently being circulated by Representatives Burgess and Eschoo, raising concerns about the recent changes to Medicare policy. If you’d like to have your voice heard on this topic, you can contact your representatives through Honor the Gift and urge them to sign the letter.
Learn more and contact your representative here.
Your Fun Tip of the Day!
Get back to basics with your childhood curiosity!
Let your child like curiosity come back to life again and start building something. If you have kids in the house borrow some of their building blocks, legos or anything you can find in the house and see what you can build. A fortress, a tractor or a house, whatever floats your boat - or build a boat! Get creative on what you can find in your house to make your building unique and take pictures along the way to mark your progress and final build. You can use your time in dialysis to think about your next building steps and implement your ideas when your back home. If you want to try a more high tech detailed building exercise check out a few below, there are many more to choose from online:
Top 5 Online Games - includes building games that let you choose the game by your experience level and interests.
Elvenar - Fantasy city builder game.
Gamepix - City building games you can play on your computer.
Pocketgamer -Building games you can play on your phone.
If you want your kids to learn the latest technologies with the same interactive game like feel they can join the free AI personal tutor school Synthesis Tutor for children ages 7-10 years old and for children ages 8-14 years old they can join the the Synthesis Teams group at the same website which includes team thinking games to challenge your child.
The FDA approved Veklury® (Remdesivir) for COVID-19 in CKD patients
What it is: The Gilead drug Veklury® (Remdesivir) is an antiviral COVID-19 treatment approved by the FDA for patients with advanced chronic kidney disease or end-stage kidney disease (ESKD) who are on dialysis.
This drug was previously approved by the FDA for use in hospitalized COVID-19 patients in 2020. However, because of the lack of data available in clinical trials for those with advanced renal impairment, the previous approval required eGFR testing prior to treatment and dose adjustments for those with kidney disease. Now with more information, the FDA approved Veklury in July for COVID-19 treatment in patients with advanced chronic kidney disease or end-stage kidney disease (ESKD).
Why it’s important: Velkury is the first antiviral COVID-19 treatment that can be used across all stages of renal disease.
Learn more here.
For Type 2 Diabetics with CKD: The FDA grants Renalytix marketing authorization for a new diagnostic methodology that provides a simple to understand CKD progression risk score for people with Type 2 diabetes and CKD.
What it is: TheFDA granted de novo marketing authorization of Renalytix™ AI, Inc.’s KidneyIntelX™ technology (KidneyIntelX.dkd), an in vitro diagnostic intended to aid in the assessment of risk of progressive kidney function decline in adult patients with Type 2 diabetes and existing chronic kidney disease (CKD).
KidneyIntelX is an artificial intelligence (AI) enabled methodology that predicts which adult patients with type 2 diabetes and CKD stages 1-3 are at risk for rapid progressive decline in kidney function, and at what level (low, intermediate or high risk).
KidneyIntelX.dkd provides a kidney disease risk score that is generated by combining specific test results and data provided by your physician from your medical record with a machine learning AI powered algorithm. More details are provided in the links below. Note: "KidneyIntelX.dkd is not intended for screening or as a stand-alone diagnostic test."
KidneyIntelX vs. KidneyIntelX.dkd:"KidneyIntelX is a laboratory-developed test (LDT) that has been reported on approximately 10,000 patients in the United States from when it was first introduced. KidneyIntelX.dkd is the name used to differentiate tests to be provided under the De Novo marketing authorization by the FDA from those provided under the KidneyIntelX name as a Laboratory Developed Test."
Why it’s important: This new methodology uses the latest technology advancements to help predict who will rapidly progress to later stages of chronic kidney disease giving physicians the opportunity to ensure they use the latest therapies to prevent CKD progression as soon as possible on the people highest at risk.
If you or a family member has type 2 diabetes and CKD, check with your physician to see if they are aware of the KidneyIntelX platform and if yes discuss using this to stay on top of your kidney health to help prevent you or your family member from needing dialysis or a kidney transplant.
Opportunity to get paid for your feedback on company products
What it is: Savvy Cooperative®, a company founded by patients to help amplify, protect, and value the patient voice. The Savvy Cooperative connects patients and care partners to companies looking for feedback on the products they are developing. In exchange for providing your input you get paid. Typical projects are done virtually and a variety of payment methods are offered.
Why it is important: Your voice gets heard during development of products and services that are meant for you, typically from the comfort of your home, and you get paid for your feedback in a variety of payment methods. If you are close to any insurance or financial limits getting paid with a gift card for example can keep you within your limits.
Learn directly from Savvy's mission statement below & visit them online:
In order for companies and researchers to make the best products and services, they need to understand the patient experience. Therefore, Savvy Cooperative was founded by patients to help amplify, protect, and value the patient voice. Savvy's insights platform connects patients and caregivers directly with healthcare innovators and ensures that participants are treated fairly and adequately compensated. The majority of Savvy's projects are held virtually (from home) to ensure that participants can easily participate (despite transportation, financial, work, childcare, and other responsibilities) and Savvy offers a variety of payment methods, including gift cards (to most major retailers, restaurants, online stores, etc.) so everyone can participate, regardless of any insurance or financial limitations.
To learn more and join the their community, visit their website here or email community@savvy.coop with questions.
For Kidney Transplant Recipients: OPTN passed House & Senate
What it is: The Organ Procurement and Transplantation Network (OPTN) Act (H.R. 2544) was passed by both the United States House of Representatives and the Senate; it remains to be signed by President Biden.
Why it’s important:The Securing the U.S. OPTN Act aims to improve the U.S. Transplant System by increasing transparency, accountability, and competition. It gives the Health Resources and Services Administration (HRSA) oversight authority. The American Nephrology Society (ASN) released 2 statements applauding the bills approval approval by both the House and Senate. Read the ASN statements to learn more: 1 & 2.
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