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
SOCKS Virtual Group Meeting - Michigan The Supporting our Chronic Kidney Struggles (SOCKS) group meets twice a month for people with chronic kidney disease at all stages in Michigan. The next virtual meeting will feature Devon Hagerman from Patient Services at the National Kidney Foundation (NKF) Michigan chapter. You will learn about all the valuable resources that NKF has to offer people with CKD and their care partners at this meeting. The organizers also leave time to check in with group members, so you can share your experiences in a welcoming environment. Meetings are held the 1st and 3rd Tuesday of the Month. The next meeting is: September 5th, 6:30 P.M. - 8:00 PM ET Register here.
NKF Michigan Chapter: Kidney-PATH workshops are open for registration The National Kidney Foundation (NKF) Michigan chapters' Personal Action Towards Health (PATH) workshop is designed to help people better manage their long-term health conditions. There are multiple PATH programs for different conditions all for free. Each workshop is led by two trained leaders, at least one of whom has a long term health condition. You can find the full list of 2023 workshops which includes Diabetes PATH here. The Kidney-PATH course is an "8-week workshop for participants who are in various stages of chronic kidney disease. The first six weeks focus on overall healthy living, with two additional sessions that cover kidney specific content. This workshop is for you if you have kidney disease, kidney failure, or a kidney transplant, or are a caregiver." Upcoming Kidney-PATH workshops are listed below. Pre-registration is required. September sessions will be held on Tuesdays from 1:00 PM – 3:00 PM ET Information session: September 12 at 1:00 PM-2:00 PM ET October sessions will be held on Wednesdays from 6:00 PM – 8:00 PM ET Information session: October 4 at 6:00 PM -7:00 PM ET Learn more and sign up here to enroll. For additional information about the National Kidney Foundation of Michigan's (NKFM) PATH workshops, contact: PATH Programs (800) 482-1455, email: PATHPrograms@nkfm.org, or go to www.nkfm.org/path
AKP Hurricane Idalia Resources Learn about the latest American Kidney Fund (AKP) resources for kidney patients affected by Hurricane Idalia. AKF Hurricane Idalia Resources AKF Disaster Relief Grant Program
ASN - Direct Relief support for people in Maui, Hawaii The American Society of Nephrology (ASN) has partnered with Direct Relief (a nonprofit humanitarian aid organization that responds to natural disasters and other emergencies) via their Emergency Partnership Initiative (EPI) to establish a fund. The fund will support bringing medicine and supplies to people with kidney diseases, their families, and their caregivers (including nephrologists and other health professionals) affected by the devastating wildfires in Maui, Hawaii. All donations will support Direct Relief’s emergency response to the Maui crisis.
You can donate here. The Kidney Community Emergency Response is a good resource if you have been affected and need help. To learn more about EPI, please contact epc@asn-online.org.
Advocacy: Kidney PATIENT Act
The Kidney PATIENT Act was introduced to congress by four representatives from GA, NH, WV & AL. The Kidney Patient Access to Technologically Innovative and Essential Nephrological Treatments (PATIENT) Act is a bipartisan bill that supports access to critical care and life-saving oral medicines for kidney disease patients. The bill, supported by the National Kidney Foundation, postpones changes to Medicare coverage that would limit treatment options until 2033, buying time for advancements in and lowering costs for injectable medications. The National Kidney Foundation has created a form to make it easy to contact your representatives and tell them to support the Kidney PATIENT Act.
Advocacy on your behalf: Kidney doctors advocate for their patients, pushing for the inclusion of dialysis machines in emergency Strategic National Stockpile Congress is currently debating the Pandemic and All-Hazards Preparedness Reauthorization Act that would fund the emergency stockpile, some fear that the 550,000 people on dialysis in the U.S. will be overlooked. Doctors and advocates are pushing for dialysis equipment to be included in the U.S. Strategic National Stockpile (SNS). The SNS includes stockpiles of essential medical supplies located across the country that can be accessed during a public health emergency. From 2019 to 2022, dialysis machines were included in these stockpiles for the first time, but those contracts were not renewed, and the SNS does not currently include dialysis machines. Why it’s important: During national emergencies, such as hurricanes, pandemics, and wildfires, people often lose access to life-supporting dialysis centers and machines. During the COVID-19 pandemic, for example, the availability of dialysis units in the SNS was critical as COVID-19 patients in the ICU often experienced acute kidney injury requiring short-term dialysis. Reach out to your representatives to support the inclusion of the dialysis machines in the Strategic National Stockpile (SNS).
Your Fun Tip of the Day!
The Power of Music! Whether you are looking to lift your mood or unwind, music can be a powerful ally. The beauty of using music to change our mental state is in the variety of choices available to you. If you want to feel more optimistic you can pick music with an upbeat tempo and/or positive message. If you need to unwind and calm your mind down, music with a slower tempo can help you feel soothed. Many meditation apps include music to deepen the positive effects of meditation. You can create your own playlist of music and title it with the mood you want to feel, so you can go back to it again exactly when you need it and change your state of mind quickly. For example, you can create a "dance mix" or a "wind-down mix" of songs that you know get you moving or relax you. Music can be a great tool to help you pass the time during dialysis. There are many different platforms you can use. Check out this article which shows you how to make a playlist on Spotify, Apple Music, Pandora, SoundCloud and via YouTube.
FDA grants clearance for the expanded use of the Quanta Dialysis System hemodialysis device
What it is: The Quanta Dialysis System is a compact hemodialysis device that previously could perform two dialysis modalities of continuous renal replacement therapy (CRRT). With this new FDA 510(k) clearance for an expanded indication, the system can be used for intermittent hemodialysis (IHD), sustained low-efficiency dialysis (SLED), or bagless CRRT which creates dialysate on demand all in a single device.
Why it’s important: In addition to offering a compact solution for those with end-stage renal disease (ESRD) who need dialysis, the Quanta Dialysis System will now be available for patients with acute kidney injury (AKI) who require dialysis, making it the first device suitable for both chronic and acute care settings. Severe AKI in ICU patients is a leading cause of mortality, and the Quanta Dialysis System will be able to offer bagless CRRT that is most appropriate for these patients and then transition to the other modalities once stabilized.
Learn more here.
Clinical Trial: The KICK studies for CKD-related itching
What it is: The KICK studies are clinical trials testing an oral medication, difelikefalin, to treat itching associated with kidney disease. KORSUVA® (Difelikefalin) from Cara Therapeutics has previously been approved by the FDA as an intravenous treatment for CKD-related itch for people undergoing dialysis; these trials would test the efficacy of the same Difelikefalin drug as an oral medication.
Why it’s important: Many people with kidney disease experience severe itching, called Pruritus, that can negatively impact the quality of life. Difelikefalin is effective as an intravenous treatment, but a tablet form would be much easier for people to take. If you have kidney disease and are on dialysis and would like to enroll in a KICK study, you can check out participating locations and see if you qualify here. Participants are compensated for their time and travel.
Kidney-PATH workshop for people with CKD
What it is: "Kidney Personal Action Toward Health (Kidney-PATH) is an 8-week workshop for participants who are in various stages of Chronic Kidney Disease. The first six weeks focus on overall healthy living, with two additional sessions that cover kidney specific content. This workshop is for you if you have kidney disease, kidney failure, or a kidney transplant, or are a caregiver."
Why it's important: There is a lot to learn once you have been diagnosed with chronic kidney disease, and it can feel overwhelming at first. Having regular class sessions can help make all the information you are learning more manageable and hopefully more memorable. You will also have the opportunity to speak with others in similar situations. The following topics are covered:
Manage everyday activities
Control symptoms and decrease stress
Improve communication skills
Avoid complications
Improve your overall health and increase your energy
Become an advocate for yourself
Understand fluid restrictions and dialysis
Ask a panel of experts more about kidney disease
Kidney Path is currently funded by:
Administration for Community Living, U.S. Department of Health and Human Services
University of Michigan Transplant Center
Ascension SE Michigan
Outset Medical
Horizon Therapeutics
Enter to win the KEEP medication storage box
What it is: The Savvy Cooperative® connects patients and care partners to companies looking for feedback on the products they are developing. Over the next few months they will be giving away multiple KEEP boxes to store your medication.
What is important about the KEEP box:
The device is tamper-resistant, biometrically locked and connected to a smartphone app which alerts you if someone tries to open it.
Click here to enter!
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