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
March is National Kidney Month!
Many kidney organizations are hosting events, highlighting advocacy efforts, and launching new initiatives. We’ve rounded up some of these events and initiatives below.
World Kidney Day March 14th
The theme for the 2024 World Kidney Day is Kidney Health for All, with the goal of improving kidney care and care access for all.
World Kidney Day is a global event that is jointly supported by the International Society for Nephrology (ISN) and the International Federation of Kidney Foundation – World Kidney Alliance (IFKF-WKA). You can find educational content, news, and activities near you and see how others are spending the day here.
National Kidney Foundation
In keeping with the theme for the 2024 World Kidney Day, NKF is focused on addressing inequities in kidney-related healthcare. Kidney Equity for All is a “patient-focused, community-minded movement dedicated to ensuring ALL kidney patients have access to high-quality, patient-centered kidney care from the moment of diagnosis to transplantation.” Some of the activities in this movement, include:
1. Proposal to remove race from Kidney Donor Profile Index (KDPI). The KDPI, which uses donor characteristics to estimate the likelihood of successful kidney transplantation, currently uses race as a factor, ranking organs from Black donors as lower in function than those from White donors. There are not enough suitable kidneys for those who need one, and thus changing this biased distinction would allow for utilization of currently underutilized organs. Through NKF advocacy, the Organ Procurement and Transplantation Network (OPTN) is pushing for a change in this calculation to eliminate this discrepancy.
2. CKD Intercept is an initiative with many components aimed “to improve chronic kidney disease (CKD) testing, recognition, and management in primary care.” Through this program, NKF has increased screening for higher-risk populations, including distributing Healthy.io at-home test kits.
3. So far, more than 700,000 people have taken NKF’s Kidney Risk Quiz, including over 400,000 Black/African American and Hispanic individuals, to understand their risk of kidney disease. You can find the quiz here.
See the full list of ways NKF is recognizing this Kidney Month and, if interested, you can learn about Kidney Equity for All and/or sign a petition to call for the OPTN to develop policies that ensure equitable access to transplantation.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
This month, the NIDDK is encouraging everyone to get to know their kidneys and the signs of kidney disease. They’ve created educational resources to watch and share. Learn more here.
American Kidney Fund (AKF)
AKF Kidney Action Week is March 18th-22nd, 2024. The event includes virtual sessions about dialysis, kidney disease prevention, kidney-friendly eating, the transplant process, and new innovations in kidney disease treatment. The event is free and is open to people with kidney disease and their caregivers. You can learn more, see the full detailed schedule, and register here.
American Society of Nephrology (ASN)
ASN has a few initiatives going on for Kidney Month, including:
1. The #850Challenge will raise awareness for the 850 million people with kidney disease in the United States. Participants are asked to participate by completing a physical challenge such as 8,500 steps in a day, 8.5 miles of walking, 8.5 miles of cycling, or 8.5 minutes of high-intensity training. Participants can then share their activities on social media with the hashtag, #850Challenge.
2. We're United 4 Kidney Health is an initiative led by ASN to gain awareness and educate scientists, nephrologists, and other kidney health professionals about the dramatic changes and new opportunities taking place in kidney care, research, and education and enhance their professional development, and training. Learn more here: https://4kidneyhealth.org/
American Association of Kidney Patients (AAKP)
For Kidney Month, the AAKP calls on you to share your personal story and experience with friends, family, and your community to help spread the word about kidney disease. AAKP has also curated several educational resources so you can share your story and guide people to life-changing information.
In this month’s article, AAKP Ambassadors share their stories, underscoring that they are more than their kidney disease. You can read their stories and the full article here: https://aakp.org/nkm-ambassadors/
Your Fun Tip of the Day!
Time to smell the flowers!
March is the start of spring festival season, and a host of other holidays including National Craft Month, National Women's History Month, and of course National Kidney Month. One of the most famous outdoors festival is St. Patrick's Day.
One of the most beautiful types of activities this season are the flower shows. Botanical Gardens often have flower shows starting in March and running through April. Visiting a botanical garden or going to a flower show is an easy way to brighten your day and get you ready for the full spring season!
Suggestions for those on the east coast
FDA grants humanitarian device exemption for QUELIMMUNE, used to treat AKI in pediatric dialysis patients
What it is: In February, the FDA granted humanitarian device exemption (HDE) for QUELIMMUNE. QUELIMMUNE is a Selective Cytopheretic Device (SCD-PED) indicated to treat acute kidney injury (AKI) in pediatric patients due to sepsis or a septic condition on antibiotic therapy and requiring renal replacement therapy (RRT). AKI causes a severe systemic inflammatory response that can lead to multi-organ failure. QUELIMMUNE is a synthetic membrane that binds activated immune cells and can be used during dialysis to remove these cells.
Why it’s important: AKI in ICU patients has a mortality rate of approximately 50%. The device was evaluated in two clinical trials (SCD-PED-01 and SCD-PED-02) and demonstrated a 77% reduction in mortality in pediatric patients 60 days after use. Humanitarian device exemptions are granted for treatments and devices that treat rare diseases that lack other treatment options. It differs from other approval methods because it does not require applicants to demonstrate effectiveness given the dire and timely need for the treatment.
FDA adds warning on use of Denosumab (Prolia)
What it is: The FDA has added a warning on denosumab (Prolia) regarding the increased risk of severe hypocalcemia (low calcium in the blood) in patients who take the osteoporosis drug and are on dialysis. This warning was added in response to a new study published in JAMA in January and can be found here.
Why it’s important: Severe hypocalcemia is more common in patients with CKD who also have mineral and bone disorders (CKD-MBD). The study demonstrated that for patients with advanced CKD on dialysis who were taking Prolia, severe hypocalcemia resulted in serious negative outcomes, including hospitalization, life-threatening health events, and death. Severe hypocalcemia can be asymptomatic or may include symptoms such as confusion, seizures, irregular heart rhythm, fainting, muscle spasms, weakness, tingling, or numbness.
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