CKD Insider Newsletter

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: HDU Caring for Care Partner webinar, Two FDA Drug Approvals, AAKP roundtable opportunity, NKF CKD & Black Community discussion, RSN Book Club, your Fun Tip of the Day and more!

HDU Dialysis at home: Caring for the Care Partner webinar

Home Dialyzers United hosted a webinar discussion this month to help you learn about being a care partner for a loved one on dialysis, from people who are/have been successfully supporting someone for years.

Visit the Resources center to access the Caring for the Care Partner video and learn about:

Care partner requirements
Training the care partner
Dealing with care partner burnout
Balancing tasks between patient and care partner
Going Solo

---------------------------------------------------------------------------------------------------AAKP Opportunity to Participate in a Virtual Patient Roundtable Discussion

The American Association of Kidney Patients (AAKP) and HD Clean, LLC is inviting you to participate in a 60-minute roundtable discussion to discuss “perceptions of the risks involved in dialysis with a central venous catheter, and in particular, the risks of bacterial contamination of the connections between the bloodlines and the catheter and the risk of the lines loosening and separating during treatment.” The goal of this roundtable discussion is to make sure the company understands the needs, preferences, and perceptions of patients and their care partners.

Participants are eligible for a $50 VISA gift card.

The next opportunity to join is: Friday, March 3rd at 12:00-1:00 pm EST
Learn more and sign up here

---------------------------------------------------------------------------------------------------
RSN Book Club Meeting
Renal Support Network Kidney Kin Book Club is currently reading The Midnight Library by Matt Haig.

Join the RSN Book Club meeting on March 12th at 7pm EST to discuss this book. Sign up here.
---------------------------------------------------------------------------------------------------
NKF conversation with the Black community about kidney disease
Dr. Kirk Campbell, a leading kidney specialist and incoming NKF Board Chair, along with New York-based kidney patients will discuss why Black communities are disproportionately impacted by kidney disease and lack of treatment access, how tests have changed and their impact on the Black community, and proactive approaches to stop or delay kidney failure.

Join the Conversation March 15th at 3pm EST video or phone
What Black New Yorkers Need To Know About Kidney Health
Learn more and register here.
---------------------------------------------------------------------------------------------------
NKF Advocating For You
The FDA has revoked Evusheld’s Emergency Use Authorization (EUA) because it is no longer effective against newer COVID-19 omicron variants that are now the dominant strains. Considering this, the National Kidney Foundation (NKF) released a statement emphasizing the need for vaccines and effective therapeutics for CKD and ESRD patients against new COVID-19 variants, calling for the FDA and biotech companies to “increase investments in innovative research and expedited access to therapeutics that protect kidney patients against COVID-19.”

In their statement, the NKF underscored the direct impact the COVID-19 pandemic has had on those with CKD and ESRD, highlighting the increased incidence of infection and worse outcomes for our community. They also made clear the specific therapeutic considerations for COVID-19 vaccines for those on immunosuppressive drugs.

Read the full statement here.

---------------------------------------------------------------------------------------------------
ASN Turkey-Syria Earthquake Relief efforts led by ERA
The American Society of Nephrology encourages their members and the kidney community to support efforts led by the European Renal Association (ERA) to help victims of the devastating earthquakes in Turkey and Syria.

ERA is working with Direct Relief, a nonprofit humanitarian aid organization that responds to natural disasters and other emergencies. ASN encourages members and the kidney community to support local rescue groups by making a donation to Direct Relief. These funds will help mobilize search and rescue efforts and immediate medical needs in Turkey and Syria. 100% of all donations for the Turkey-Syria Earthquake are used solely on expenses related to supporting that response.
Make a Donation

---------------------------------------------------------------------------------------------------
AAKP Patient Voice, Patient Choice™ Campaigns
AAKP Patient Voice, Patient Choice™ Campaigns are designed to make sure your VOTE and your VOICE are heard by your elected representatives to help shape the policies that affect our community. Below are five AAKP campaigns that you can get involved in today.

All the information, details, links, and forms for each action item can be found here. Three are highlighted below.

1. Access to Chronic Kidney Disease Associated Pruritus (CKD-aP) treatment

Many patients with CKD are affected by moderate to severe itching referred to as pruritis. Korsuva is the first and only therapy approved by the FDA for the treatment of CKD-associated pruritus (CKD-aP). Coverage by Medicare for this drug is currently at risk.

Action Items: Sign the AAKP petition, send an Access Letter to the Center for Medicare and Medicaid Services (CMS), or send a letter to your congressional representatives

2. Expanded Hemodialysis (HDx) Therapy – Bring Innovation to Dialysis Care!
A new class of dialyzer, Theranova, can remove an expanded range of toxins from the blood during hemodialysis. Currently, access to this new class of dialyzer is quite limited in the United States.

Action Item: Submit a Theranova Hemodialysis Access Letter

3. Chronic Kidney Disease Associated with Type 2 Diabetes
Diabetes affects the kidneys and often leads to CKD. Kerendia is an FDA-approved therapy that slows the progression of CKD in adults with Type 2 Diabetes. However, many insurance companies are denying coverage or putting in place artificial, unnecessary barriers to receiving this critical medication.

Action Items: Sign the AAKP petition, Submit an Access Letter to CMS
---------------------------------------------------------------------------------------------------
March is National Kidney Month
There are many opportunities this coming month to help people you know learn about chronic kidney disease and how to manage it.

The National Institute of Diabetes and Digestive and Kidney Diseases has a Follow Your Kidney Health program as part of National Kidney Month.

Learn More About Following Your Kidney Health below:

Inspiration for a Happy Life!

Get a helping hand and some inspiration from people around the world who live their lives with a positive mindset. Let them introduce you to some positive healthy habits that you can incorporate into your life!

Check out the article below and see if you can find a new habit or suggestion that you can easily adopt to bring more joy into your life!

Keep your eyes open – and leap into the future’: 100 centenarians’ 100 tips for a life well lived

A few great suggestions:

Never stay stuck in the past (bless the past with love)
Keep a diary (remember to revisit the best days!)
Dance while and when you can!
Laugh and smile as much as you can, even if for no reason at all!

What it is: The FDA approved Jesduvroq (also known as daprodustat), the first oral treatment for anemia in adults with CKD who have been on dialysis for at least 4 months. In the GlaxoSmithKline ASCEND-ND clinical trial, Jesduvroq was just as effective as current injectable options. Jesduvroq is only approved for CKD patients on dialysis and is not currently available for those not on dialysis.

Your kidneys are responsible for producing a hormone called erythropoietin that tells the body to make more red blood cells and helps maintain your hemoglobin (Hgb) levels. In a person with chronic kidney disease on dialysis, the kidneys cannot produce enough erythropoietin, leading to reduced numbers of red blood cells and Hgb. Jesduvroq was shown to raise and maintain hemoglobin (Hgb) levels similar to what has been seen with injectable recombinant human erythropoietin that is the current treatment.

Common side effects of Jesduvroq include high blood pressure, thrombotic vascular events, abdominal pain, dizziness and allergic reactions. Patients should not use Jesduvroq if they also take certain drugs that cause increased levels of Jesduvroq or if they have uncontrolled high blood pressure.

FDA approval information
Jesduvroq prescribing information including side effects can be found here.
FDA NDA Approval letter is located here.

Why it’s important: Having an alternative to the injectible recombinant human erythropoietin to help manage your anemia, and the potential opportunity to control when you take this medication based on your physician's directions and recommendations provides you and your nephrologist with more options. Remember it is important to keep track of Hgb levels as too low or too high Hgb levels can be dangerous for a person on dialysis and can lead to cardiovascular problems. Check with your nephrologist to see if this medication is right for you.

What it is: A free mobile phone application that allows you to easily view and track key blood test results and get the latest news and educational information delivered to you directly in the application.

Hemoglobin is one of the five default tests included in the OneTrackHealth mobile application that are regularly monitored for people with chronic kidney disease on dialysis, each default test includes the standard recommended blood test result ranges* to make it easier for you and your care partner to keep track of your health goals.

The app is designed specifically for people on dialysis and their care partners. Available on apple store here.

Why it's important: You can't improve what you don't measure. Keeping track of your blood test results or those of a family member helps you make more informed food and medicine choices on a daily basis, and reminds you to speak with your physician if you see a trend outside of your recommended test reference ranges, so that you can discuss your treatment options.

What it is: The FDA approved Filspari™ developed by Travere Therapeutics is designed to reduce proteinuria in adults with primary immunoglobulin A nephropathy (IgAN) at risk of rapid disease progression. It is currently the only non-immunosupressive therapy for IgAN. You can learn more from Travere Therapeutics regarding the FDA accelerated launch and approval here.

Common side effects of Filspari™ are peripheral edema, hypotension (including orthostatic hypotension), dizziness, hyperkalemia, and anemia.

FDA Approval Information
Filspari™ prescribing information including side effects can be found here.
Accelerated Approval letter is located here.

Why it’s important: IgAN is known to progress to kidney failure. If you or a loved one have been diagnosed with IgAN and are looking for treatment options to protect your kidneys, this newly approved therapeutic medication could be beneficial. Check with your physician to see if it is right for you.

Scientists First in the World to Regenerate Diseased Kidney Cells

Scientists at Duke-National University of Singapore Medical School along with colleagues in Germany reported in Nature Communications the ability to regenerate injured kidney tissues in preclinical disease models.

Interleukin 11, or IL-11, is a cytokine – an immune system signal – that has been shown to promote kidney fibrosis in models of kidney disease. In this current publication, the scientists showed that using a drug to block IL-11 could not only block kidney damage from developing but could reverse damage after it had already occurred. These results offer hope for future regenerative medicine for kidney disease.

Read more here or watch a YouTube video from Duke-NUS describing this research here.