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:
AAKP Annual Patient Meeting Key Takeways:
Emergency Preparedness
Infection protection
News from Kidney Organizations
RSN 31st Annual Kidney Disease Education and Lifestyle Hope Week Meeting
The Renal Support Network (RSN) has hosted this free event for over 30 years, it brings together healthcare professionals and kidney community members including young and adult patients and caregivers. Each day of the event will center on a different aspect of CKD including diagnosis, dialysis, kidney transplant and daily lifestyle challenges. You will be able to engage directly with speakers and panelists by asking questions during the sessions.
October 9th -13th (Virtual Meeting)
Find the agenda here
Learn more and sign up here
Meeting starts at 2:30pm Pacific Time during the weekdays
Meeting starts at 10:45am Pacific Time on the weekend days
Virtual booths will be accessible featuring kidney-friendly products, services, and resources.
AAKP Annual Policy Summit (In person and virtual)
This policy focused conference includes speakers from AAKP leadership, fellow patients and guest experts who understand how policy decisions in the US congress are made, how patients can advocate for themselves and impact policy.
November 20, 2024
In person: Washington, D.C. Register here
Virtual registration here
American Kidney Fund Activates Disaster Relief Program to Support Dialysis and Post-Transplant Patients Affected by Hurricane Helene
Hurricane Helene has devastated many communities along the East Coast, displacing people under evacuation orders. Displacement has disrupted critical access to dialysis treatment and life-saving medications, as well as access to kidney-friendly foods. The American Kidney Fund (AKF) has activated its Disaster Relief Program to help dialysis and post-transplant patients living in areas affected by Hurricane Helene. Emergency Grants of $250 are available. Find out about the grant program here.
Resources for those affected by Hurricane Helene are available here.
You can donate here if you want to help those impacted by Helene and support the AKF Disaster Relief efforts. Right now, a donor is matching all donations with a 2X Match.
Warning: Scam Involving Kidney Donation
A scam is spreading on social media, impersonating the National Kidney Foundation’s “Big Ask Big Give” program. Primarily, these posts are in Facebook groups from fake accounts pretending to be group members, linking to a convincing website that mimics the NKF website. The scam involves asking for insurance information and collecting fees.
The Renal Support Network (RSN) has shared guidance on how to recognize and protect yourself from scams like this one, even if you’ve already been a victim of this scam learn more here.
RSN Announces Winners of Essay Contest
The Renal Support Network (RSN) announced the winners of their Annual Essay Contest. The theme for this year was, “Which film, television series, book, or song provides you with comfort?” You can read the winning essays here.
Your Fun Tip of the Day
Embrace the Magic of Fall
This is a great time of year to enjoy the change of seasons as the leaves start to change colors and the air gets cooler, there are also many fun activities that you can embrace.
Go to your local Greek or Octoberfest festivals, and enjoy the food, music and start dancing! This is also a great time to try some new recipes from pumpkin bread to apple pie, there are many types of seasonal foods and spices to enjoy. One of the best activities this time of year is just getting out in nature and walking in your neighborhood or a park to enjoy the crisp fresh air and the beautiful landscape. Embrace it all and enjoy!
The FDA has Granted Full Approval for Filspari, a Treatment for IgA nephropathy (IgAN)
What it is: Filspari® is a treatment for proteinuria in IgA nephropathy (IgAN). In February 2023, Filspari was granted accelerated approval based on early data from its Phase 3 Trial, the PROTECT trial. This accelerated approval was conditional, limiting its use to those with especially high urine protein levels, or proteinuria, a measure of kidney function. With new data analyses from the PROTECT Trial, the conditional approval has been updated to full FDA approval.
Why it’s important: Filspari was the first treatment for proteinuria in IgA nephropathy (IgAN). IgAN is an autoimmune disease that impacts kidney function, often leading to kidney failure. With Novartis’ recent approval of the complement inhibitor Fabhalta for the same condition, there are now two FDA-approved therapies to provide patients with two choices to treat this condition. The two drugs work in different ways, with Filspari targeting two different pathways involved in IgAN progression, endothelin-1 and angiotensin II.
Learn more about IgAN symptoms here.
AAKP 49th Annual Patient Meeting Key Takeaways
Preparing for the Inevitable Disaster (Welcome Session - Available on Replay here)
KEY TAKEAWAY: CREATE A PLAN NOW. DO NOT WAIT.
Know your area's risk for an emergency event
Create an emergency action plan today. Do not wait.
Think about what you may need to do.
Evacuations Do you know what the local plan is and who to contact to find out?)
Transportation (public buses, trains might not be working
Sheltering (where are public places to shelter and also what friends, family and/or fellow dialyzers have a space for you to shelter)
Develop an emergency bag, and prepare an emergency folder with important information.
Share your plan with others (ex: family, friends, neighbors and congregation members)
Discuss your plan with your dialysis facility
Provide your up to data address and contact information to your dialysis facility
Have a back-up plan to get care if your dialysis facility is closed
Know how to contact your dialysis facility
Find out if your dialysis center has a generator
Broaden Your Circles: Talk to other patients about their plans, create a support group – Build formal and informal NETWORKS to increase your RESOURCES.
Learn more tips at the AAKP Emergency Preparedness Website.
Tips for when an emergency event is coming fast (snow, hurricane etc.)
Ask to get dialyzed the day before if you know a storm is coming
Reach out to your healthcare coalition, each state has one
Contact your local ESRD Network to get help
Get the Kidney Community Emergency Response (KCER) CMS Emergency Preparedness Patient Guide available here
Reach out to AKF for funds when you need it
If you are in South Carolina download the ESRD emergency app here
Infection Control - September is Sepsis Awareness Month
Breaktout Session: Innovation and Research: We are Listening. The Role of Patient Consumers in Innovation. Watch recap here
KEY TAKEAWAY: YOUR JOB IS STAY INFECTION FREE
Your main job is to stay infection free, any slight infection can turn deadly, as soon as you realize you aren't feeling well make sure to talk with your doctor.
If you have a catheter - be particularly careful. Some tips from speakers:
Understand that sweating can speed up an infection
Keep dressing clean and dry
If you are in a health care center, let them know you have a catheter
Pay attention to how healthcare workers in your dialysis center are working. If you see a dialysis care team member go from one dialysis machine to yours without washing their hands and changing gloves, tell them to stop. This is critical for your health. They might be rushing if they are overwhelmed and forget, your doing this helps you most importantly and the dialysis team member stick to best practices.
Find out if your dialysis center offers defencath® by CorMedix, which helps prevent infection in your central line.
Stay tuned for additional key takeways from the AAKP Annual Patient Meeting!
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