toolkit

Top 5 Reasons To Refer Transplant Early

Posted: November 16, 2024

According to Mayo Clinic, physicians should refer kidney patients for transplant when their GFR reaches 25 to ensure they are evaluated and listed in a timely fashion. The goal is get patients evaluated before their condition worsens, and ultimately avoid complications from dialysis that could affect transplant eligibility. (Excerpts taken from: https://www.mayoclinic.org/medical-professionals/transplant-medicine/news/top-5-reasons-to-refer-a-patient-early-for-kidney-transplant/mac-20575082). Late Referrals: 1. … Read more…

Story Videos ( Share Your Story in Video)

Posted: July 22, 2024

If you hesitate to talk about your need for a living kidney donor there is an engaging social media concept you can consider. It involves the use of story videos. Story Videos are a great way to get your story out there with more than just words. They offer facts and attention-grabbing visual content. It … Read more…

New Children’s Book for Adult Kidney Patients Waiting for a Transplant

Posted: July 22, 2024

Check out our new children’s book on living kidney donation, called “Sydney’s Kidney Adventure: Her Big Wish for Mom Comes True.” It’s an uplifting tale of a child’s endearing “treasure hunt” for a living kidney donor to end her mother’s wait for a transplant— that will touch the hearts of kids and adults alike. Watch … Read more…

Increasing Organ Transplant Access (IOTS) Model. Medicare 2025-2030.

Posted: July 22, 2024

Increasing Organ Transplant Access (IOTS) Model. Medicare 2025-2030. Key Takeaways: New performance metrics will serve as the basis for the proposed incentive payments, with three categories assigned a score totaling 100 possible points. For example, each performance year, a participating kidney transplant hospital will fall into one of three categories based on their final score … Read more…

Living Donor Protection Act 2024 – H.R. 2923/S. 1384 (2023-2024),

Posted: July 7, 2024

After Five Attempts to Pass, Let’s Make This Year Our Last! When life gives you a 2nd chance, you want to make it count. I’ve been chipping away at this goal ever since I received my preemptive kidney transplant from an unrelated living kidney donor 13 years ago. Yet, as I advocate to increase preemptive … Read more…

Centers for Medicare & Medicaid Release An Alternative Payment Model:

Posted: June 6, 2024

The CMS Innovation Center released an alternative payment model, Increasing Organ Transplant Access (IOTA), that will hopefully improve access to kidney transplantation, increase the number of kidney transplants, enhance living donation, require transplant centers to transparently share their transplant selection criteria, and also tell patients the reasons why organs are declined on their behalf. The fact … Read more…

Transplant Costs vs Dialysis

Posted: December 22, 2023

The Living Kidney Donor Support Act would benefit tens of thousands of Americans and save billions of tax dollars. This organ shortage is costly to the people who end up waiting longer for transplant or who die awaiting one, and to taxpayers who pay most of the health care costs of people with end-stage kidney … Read more…

Kidney Transplant Recipients Get New Protections!

Posted: October 31, 2023

New Kidney Transplant Recipient Protections! The National Kidney Registry (NKR) is now offering recipient protections in addition to their very generous donor protections that remove barriers to donation. Most of us are familiar with NKR’s donor protections (Donor Shield) which offer living kidney donors reimbursement for: Lost wages up to $2,000/week—for up to 6 weeks … Read more…

Posted: October 5, 2022

Click on image to listen to Risa Simon’s interview during AAKP’s “Author’s Corner,” from AAKP’s “Decade of the Kidney” National Patient Meeting September 21-23, 2022. To learn more about this meeting and watch this session in its entirety, and other outstanding sessions visit: https://aakp.org/programs-and-events/national-patient-meeting/

Why COVID-19 Vaccine Boosters & Precautions Continue For Transplant Patients

Posted: September 4, 2021

While Covid-19 vaccine (3rd dose) boosters are now recommended for immunosuppressed patients—here’s the back story as to why this population finds itself more vulnerable Article From Science.org/news — 26 JUL 2021 Doctors recommend that organ transplant patients continue to take precautions such as wearing a mask and social distancing even after they are fully vaccinated. … Read more…

Transplant Before Dialysis: It’s Time to Do More Good

Posted: September 3, 2021

These days, securing a kidney transplant—before dialysis, requires more luck than medical qualifications. It seems that the biggest barrier to transplant is not so much disqualifying health factors, as much as it is about knowing how to proactively secure a transplant before dialysis is required. To remove this barrier, physicians and patients must agree to … Read more…

Should A Parent Accept A Kidney From An Adult Child or Loved One?

Posted: September 3, 2021

Most parents (or those in need of a kidney transplant) are often reluctant if not strongly opposed to accepting a child’s (or loved one’s) kidney donation. Ironically, adult children and family members already make independent decisions on their own, yet reluctant parents don’t seem to see it that way. Parents are wired to protect their … Read more…

Untethered Truths: The Moral Imperative To Boost Preemptive Kidney Transplants

Posted: September 3, 2021

If history is a global indicator of end stage renal disease (ESRD), a vast number of people will face an unimaginable reality. Currently, 37 million American adults are estimated to have kidney disease, and most are unaware until they advance to end-stage challenges—and due to that delay, they miss their opportunity to secure a preemptive … Read more…

Observational Research: COVID-19 Vaccine Antibody Study for Transplant Recipients

Posted: January 16, 2021

A new study for COVID-19 vaccine antibody testing is being led by the transplant team at Johns Hopkins. The purpose of this observational research study is to determine COVID-19 antibody levels in transplant recipients who get the COVID-19 vaccine. The study does not provide the vaccine or offer guidance as to whether or not one … Read more…

Your Bridge to a Better Tomorrow: Feeding Covid’s Silver Lining

Posted: April 8, 2020

COVID 19 is forcing transplant centers to cancel live kidney donor transplants and put “donor testing” on hold. Hopeful recipients are emotionally struggling with this disruptive and unpredictable standstill. Their thought bubbles sound like: “Will my donor change their mind? Will my GFR hold? Will I be forced on dialysis or be taken off the … Read more…

Extending Transplant Immunosuppression Coverage Saves Money

Posted: May 14, 2019

HHS reports a 73 Million Dollar Savings Over 10 Years, by extending immunosuppressive medication coverage for kidney transplant patients under Medicare Kidney transplant recipients and donors reached a significant milestone with the release of new findings. On May 10, 2019, the Department of Health and Human Services’ Office of the Assistant Secretary for Planning and … Read more…

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