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: New kidney transplant protocol, AKF Pruritus campaign, ADA 2022 Managing Diabetes & CKD, NKF Voices for Kidney Health updates, US Supreme Court ruling regarding insurance coverage and your Fun Tip of the Day!
National Kidney Foundation’s Voices for Kidney Health Celebrates Record-Breaking One Year Anniversary This June the National Kidney Foundation (NKF) is celebrating its first year of Voices for Kidney Health. In its inaugural year, the program established congressional support and secured additional funding for kidney disease-related research and prevention programs. YOU are the voice of NKF’s Voices for Kidney Health, and the successes are thanks to the advocacy and efforts of those with kidney disease, their care partners, and loved ones. Here are some of the things that Voices of Kidney Health accomplished this year with the help of kidney community advocates:
8 new states passed the Living Donor Protection Acts (LDPA) and Chronic Kidney Disease Task Force legislation
18 congress members have signed onto the Improving Access to Home Dialysis Act (HR 5246)
82 congressional members signed on to a letter to support increased funding for kidney disease research at the CDC and National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Thousands of letters were sent to federal, state, and local policymakers by advocates with Voices for Kidney Health in support of policies
Thousands of names were gathered via a petition calling for prioritization of at-risk kidney community members for COVID-19 vaccinations
If you would like to learn more or become an advocate you can find out more information about NKF’s Voices for Kidney Health here.
American Kidney Fund’s New Campaign Focuses on Improving Quality of Life for People with Pruritus
The American Kidney Fund (AKF) launched a new campaign focused on education and awareness of pruritus – extremely itchy skin that is common for those on dialysis. The campaign includes resources for those with kidney disease and pruritis, including guidance on talking to your provider about itchy skin and guidelines for developing a pruritis treatment plan. You can read more here.
American Diabetes Association releases 2022 report on Managing Chronic Kidney Disease in People with Diabetes The American Diabetes Association released the 2022 Standards of Medical Care in Diabetes which included a new addendum specific to kidney disease. Some of the highlights include:
A recommendation for the use of sodium glucose cotransporter 2 inhibitors to slow CKD progression and reduce the risk of cardiovascular events
Incorporation of the new eGFR calculation that eliminates race as a factor
Clinical trial results, including FIDELIO-DKD, which found that Finerenone, a nonsteroidal, selective mineralocorticoid receptor antagonist, lowers the risks of CKD progression and cardiovascular events for those with CKD and type 2 diabetes.
Do you view the world and your place in it with a positive mindset? Or does it feel challenging to stay positive on a regular basis? Dealing with CKD can be draining whether you are living with it or your loved one is. Sometimes you might need help remembering all the positive things happening in the world around you and for you. This CKD Insider monthly newsletter is designed to provide you with the latest information and to help you see the positive actions that are being taken on your behalf and the positive actions you can take to make a difference in your CKD community. If you are looking for a weekly boost of positivity, check out Peter Diamandis' Mindset Mondays newsletter. He provides you with quick information to reflect on, an inspirational quote, facts about the world we live in and a simple action to improve your mindset all in a 5 min read.
Sign up for Mindset Mondays from Peter Diamandis here.
What it is: A new kidney transplant protocol from Stanford called the "dual immune/solid organ transplant," or "DISOT " allows for a kidney transplant without the need for immunosuppressive medication. To achieve this, the protocol includes the transplantation of the donor’s immune system by way of their bone marrow stem cells to the patient before the surgeons transplant the kidney.
This procedure was completed on three children with an extremely rare genetic disease called Schimke immuno-osseous dysplasia (SIOD). All three children have been living normal lives without immunosuppression medication for almost 3 years now, and Stanford’s team hopes to expand the eligible participants to adults in the future. The Stanford team recently published their results and received FDA approval for specific diseases that affect the kidneys including including SIOD, cystinosis, systemic lupus and loss of a prior kidney transplant due to focal segmental glomerulosclerosis. You can read about the details here. These results were published in the New England Journal of Medicine and covered in several news articles one of which is here, if you’d like to read more. Why it's important: If this kidney transplant protocol is able to work for all people that need a kidney transplant including adults, it will make a big difference in the life of you or someone you love. If there was no longer a need to suppress the immune system following an organ transplant, life following a transplant would be greatly improved on many levels. This is another positive example of the work that is being done to help people with CKD.
What it is: In June, the U.S. Supreme Court ruled against DaVita, which claimed that an Ohio hospital's employee health plan discriminates against patients with end-stage kidney disease (ESKD). Health plans are prohibited from discriminating against patients with ESKD under the Medicare Secondary Payer Act (MSPA). The court ruled that the plan did not violate federal law by limiting benefits for outpatient dialysis because it was providing the same benefits, including the same outpatient dialysis benefits, to all patients on dialysis whether they have kidney failure or not. There is concern that this will open the door to other health plans to do the same. Read more information here: American Kidney Fund’s Statement on the ruling National Kidney Foundation’s Statement on the ruling Reuters Bloomberg Law Roll Call Why it's important: Keeping informed on the latest news and court cases like this one will help you stay ahead of potential changes in your own insurance coverage. If you’d like more information on this ruling and what can be done moving forward, join the Bending the Cost Curve in End-Stage Kidney Disease webinar on July 12th.
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