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Story Videos ( Share Your Story in Video)

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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 has been said that people remember 95% of what they watch in a video and only 10% of what they read in text. This is what makes informative story videos so powerful. You can either make your own story video or have them professionally produced and customized.

Social Media Story Videos

Do you need to get your story out in social media so more people know that you are hoping to find a living kidney donor for your much-needed transplant?  Here’s your chance to get a professional video produced with your name and contact information for you and your transplant center.  

Our video producer has walked a mile in your shoes. All you have to do is answer a few questions and we’ll create the content to educate and inform your viewers from the moment they click “play.”  In less than less than 3 minutes they’ll understand your need and know how to help if they choose to do so.

Video Not Your Thing?

No worries. We’ve done the heavy lifting for you. You can get a semi-custom video for a fraction of the cost you’d have to pay to hire a professional videographer to create and edit. Check out our example below—to see how story videos can be your best outreach tool for sharing your story.

Here’s what you’ll get:

Your customized video will include:

  • ‘Ready-to-Post’ 2-minute inspirational video 
  • Your name and contact info will be included, along with your transplant center’s and applicable links
  • Facts on the value of living kidney donor transplants — and the hardships of dialysis 
  • Your urgent need for a transplant, and the risks involved in waiting for a deceased donor’s kidney 
  • An invitation to learn more, share your video in social media — and expand your search 

Watch Sample Here

Don’t waste another minute waiting to see what comes next.

Start networking your story with a professionally produced video about your story and need.

Become a Donor-Magnet® by posting your story video and start attracting potential donors!

Discover more about story videos at this link: https://transplantfirst.org/story-videos/

Your Ideal Donor is Out There!

Talking about your hope to find a kidney donor can be overwhelming. With your own story video you aren’t faced with having to build up the courage before sharing your story. Your video does that for you. Viewers can either respond or simply share your video in their network to expand your search. *Depending on your social network, you can get 100’s of eyeballs within just a few hours.

Discover more about story videos at this link:  https://transplantfirst.org/story-videos/

You can also discover more about our revolutionary “Donor Seeker” mobile app for English & Spanish “how to” videos and powerful resource links here: https://transplantfirst.org/donor-seeker-how-to-find-kidney-donors/

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

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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 our 1-minute cinematic book trailer here:

This captivating children’s book is not just a story, it’s a life lesson in the incredible power of family love and human kindness. The book has also been described as a “A children’s book that naturally inspires adult readers to explore living donation for themselves or someone in need.”

This book offers parents a way to ease into conversations about a loved one’s need for a kidney transplant and their search for a living kidney donor. It was also written to motivate waitlisted kidney patients (and their family and friends) to talk-up their loved one’s need for a living kidney donor.

If we inspired you to grab a copy, I’d be over the moon if you’d share your thoughts with me (or in an Amazon Review).

Available on Amazon:

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

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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 as follows:
  • Final score of 60 or greater: Hospitals will RECEIVE A LUMP SUM UPSIDE RISK PAYMENT from CMS equal to the final performance score minus 60, then divided by 60, then multiplied by $8,000, then multiplied by the number of kidney transplants to attributed patients with Medicare as their primary or secondary payer during the performance year.
    • For example, a hospital that performed 150 qualifying kidney transplants and received a final score of 85 would receive a $500,000 lump sum payment under the proposed incentive calculus.
  • Final score between 41 and 59: Hospitals in this performance range will be considered neutral and will not receive any lump sum payments or be required to make any payments to CMS.
  • Final score of 40 or lower: HOSPITALS WILL OWE CMS a lump sum downside risk payment equal to the participant’s final performance score minus 40, then divided by 40, then multiplied by -$2,000, then multiplied by the number of kidney transplants to attributed patients with Medicare as their primary or secondary payer during the performance year.
    • For example, a hospital that performed 150 qualifying kidney transplants and received a final score of 35 would owe CMS $37,500.
    • Downside risk payments will be required only after the second performance year
https://www.federalregister.gov/documents/2024/05/17/2024-09989/medicare-program-alternative-payment-model-updates-and-the-increasing-organ-transplant-access-iota
May be an image of 1 person, hospital and text that says 'Increasing Organ Transplant Access Model Proposed 6-year mandatory model: CMS Model people Increasing designed increase disease. selected proposed mandatory would support care coordination, improve address health-related patients with kidney disease Model Goals Maximize deceased donor kidneys. Create more equitable transplant process. Identify more living donors assist potential living donors through the Reduce barriers care and address health disparities. the kidney Improve quality care before, during and after transplantation. Did You Know? Around people were on the waitlist kidney transplanti the about kidney transplants were Kidney transplant Approximately 5,000 people die each year waiting transplant. 3-5 years longer recievea transplant'
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Living Donor Protection Act 2024 – H.R. 2923/S. 1384 (2023-2024),

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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 transplant opportunities and create patient engagement programs for transplant centers, allied partners, and various organizations—all my efforts seem to pale in comparison to the truth that remains.
More than 178,000 (and counting) living kidney donors are inadequately protected.
Living kidney donors are brave and selfless souls who offer great promise for a better and longer life. The life I now live. But what assurances do they get for being our life-saving heroes? Many of us believe living donors deserve far more guarantees. Allow me to point out the inequities below:
Inequity #1: Living kidney donors put their life at risk to save the life of another without personal or financial benefit, or future protections.
Inequity #2: Living donors risk insurance discrimination by potentially being denied coverage for life, disability, and long-term care insurance. They can also have their coverage limited (or charged at a higher rate) just because they’re a living donor.
According to a study published in the American Journal of Transplantation 25% of living donors had trouble getting life insurance. They were denied, charged more, or told they had a “pre-existing” condition. *If there is any “pre-existing” condition to be considered, it should be their rigorously tested (and proven) health record that qualified them for donation.
Inequity #3: Living donors lack job security. They need assurances that their job will still be there when they return from taking time off for donation or recovery.
The Solution: The Living Donor Protection Act (LDPA)—currently known as H.R. 2923/S. 1384 (2023-2024), was designed to course-correct these barriers to donation by educating donors about these protections against insurance discrimination and job loss.
To that end, the passing of this bill would honor and protect living donors from both current and future discrimination when applying for life, disability, and long-term care insurance. By doing so, they cannot be denied, cancelled, or refused issue—and their premiums cannot increase solely based on the fact that they’ve donated an organ.
Additionally, this bill calls upon the U.S. Department of Labor to codify organ donation and recovery as a covered classification under the Family and Medical Leave Act of 1993 (FMLA). It also calls on the Secretary of Health and Human Services to educate the public on the benefits and risks of living organ donation.
The Urgent Call: Countless lives are lost each year this bill doesn’t pass. Annually, this equates to more than 8,600* waitlisted kidney patients losing their chance for ever getting a kidney transplant, because they either became too ill or died while waiting for a deceased donor’s kidney. *
*Looking back to the first year we tried (and congress failed) to pass protections for living organ donors (2013-2014), the number of casualties has increased 10-fold. If we only count the years we have been advocating for change, our nation’s organ shortage has impacted nearly 90,000 kidney patient lives—and it’s on course to only get worse. That is, until we educate the public on living donation and remove critical barriers.
Increasing & Protecting Living Donors
Living kidney donation is the preferred alternative to the long wait for a deceased donor’s kidney. Getting a kidney from a living donor not only shortens the wait—kidneys from living donors do better and last longer.
Undoubtedly, more people would consider live donation if there was more public awareness and education about the procedure, recovery and risks—and specific protections were offered (and better known) before donation. The passing of LDPA 2023-2024 would make this so.
Granted, this bill may not include everything living donors deserve, like life insurance against the risk of death or long-term disability for health effects as a result of donating an organ, or medical expense reimbursement for long-term follow up care. Nonetheless, it’s an incredibly important step forward.
You would think with bipartisan support throughout the years (i.e., 2014, 2016, 2017, 2019 and 2021), and support from transplant professionals, nephrologists, kidney patients, transplant recipients, living organ donors, and even the insurance industry, it would have passed into law by now.
This Is Our Sixth Attempt. Let’s Make It Our Last.
We need your voice to encourage legislators of the 118th Congress to support H.R. 2923/S.1384 (2023-2024) and move it across the finish line by signing it into law—once and for all. It’s not just the right thing to do. It’s a moral duty way past its time.
We need your voice to encourage legislators of the 118th Congress to support H.R. 2923/S.1384 (2023-2024), to get it across the finish line and signed into law—once and for all.
It’s not just the right thing to do. It’s a moral duty way past its time.
Take Action Now!
Step 1: Use this link to send a letter to your U.S. Representatives
https://voices.kidney.org/ldpa/
Step 2: Sign AAKP’s Petition (look for the header “TAKE A STAND” at link below)
http://www.votervoice.net/Shares/BAAAAA7xAE18AAwQoHc7FBA
The Living Donor Protection Act (H.R. 2923 / S. 1384) – 2023-2024 is sponsored by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), and Representatives Jerrold Nadler (D-NY), Troy Balderson (R-OH), Jim Costa (D-CA), John Curtis (R-UT), Diana DeGette (D-CO), Mariannette Miller-Meeks (R-IA), Gregory F. Murphy, M.D. (R-NC) and Lisa Blunt Rochester (D-DE)
Article written by Risa Simon, Founder TransplantFirst.org, and TransplantStrong.com (A division of Simon Says Seminars, inc.). For more information contact: Risa@transplantfirst.org

Centers for Medicare & Medicaid Release An Alternative Payment Model:

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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 sheet for this MONUMENTAL win for kidney patients is attached. (Let’s discuss on our next call!)

HRSA is still focused on revamping the organ donation and transplant system with its Modernization Initiative to create a best-in-class Organ Procurement and Transplantation Network that works more efficiently on behalf of those who selflessly donate precious organs and individuals in need of life-saving transplants.
HHS has issued a directive to collect pre-waitlist data to examine inequities in the transplant referral and evaluation processes to close the disparity chasm— a long overdue action that is necessary to implement interventions to advance equity in kidney transplantation.

Healthcare is not a privilege it is a right. Every person deserves to have access to high-quality, affordable, patient-centered care.   
Access the full PDF document here: https://www.cms.gov/files/document/iota-model-fs.pdf

Transplant Costs vs Dialysis

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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 disease.
Transplants cost $133,000, and immunosuppressant medications cost $25,000, while dialysis costs $90,000 a year. That means that in Year 1 the government pays $133,000 per transplant and $25,000 for immunosuppressants —but stops paying dialysis costs. For the next nine years, it continues paying for immunosuppressants instead of dialysis, realizing $65,000 in savings each of those years the patient is not on dialysis. In essence, transplant costs would be paid off in two years and produce eight years of savings, or just over $500,000.

Kidney Transplant Recipients Get New Protections!

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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
  • Travel and dependent care—up to $5,000
  • Complications not covered by Insurance or transplant center

Donor Shield also offers “priority status” to donors in the unlikely event that they ever need a kidney transplant—and/or legal support if the donor finds themselves dealing with job loss or discrimination.

But wait, there’s more!

RECIPIENTS who receive a kidney from NKR’s voucher or paired exchange program are now protected should their transplanted kidney fail to function.

That’s right! Recipients now get protections (also known as Recipient Shield) if their transplanted kidney fails to function within 90 days. Recipient Shield provides kidney transplant recipients “priority status” to receive another kidney from NKR—providing the recipient’s “failure to function” was reported to NKR within 90 days.

Learn more here: https://www.kidneyregistry.org/

 

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

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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.

Transplant physicians have worried for months that their patients might not be getting the protection they need from COVID-19 vaccines. Studies have already shown that many organ recipients don’t produce coronavirus-fighting antibodies even after two doses of the highly effective messenger RNA (mRNA) vaccines—an indication their bodies are unable to mount a strong defense against SARS-CoV-2. A study out today indicates this lack of antibodies is indeed translating to a much higher risk of “breakthrough” cases of COVID-19 among vaccinated transplant recipients.

Immunosuppressant drugs, commonly used to keep the body from rejecting a new organ, leave transplant patients more vulnerable to infections. In a previous study involving 658 transplant recipients, just 54% of patients given two doses of an mRNA vaccine developed antibodies to protect them against the pandemic coronavirus. But antibodies are only one indication of a body’s response to a vaccine. Low antibody levels are “a warning,” says Dorry Segev, a transplant surgeon with Johns Hopkins University. “It’s a signal, but it doesn’t necessarily mean that they have suboptimal protection.”

To measure that protection, he and colleagues obtained SARS-CoV-2 infection and testing data on more than 18,000 fully vaccinated recipients of large organs like kidneys or lungs at 17 transplant centers across the United States. They found that 151 of these patients caught the virus. Of those that became infected, more than half were hospitalized with COVID-19 symptoms and nearly one in 10 died.

Although the rate of infection in the study was low, just 0.83%, it’s still 82 times higher than in the general vaccinated public—and the rate of serious illness was 485 times higher, the team reports today in Transplantation. This study provides the first clinical evidence across multiple hospitals that transplant recipients are less protected by the vaccine, Segev says.

Eva Schrezenmeier, a nephrologist at Charité University Hospital in Berlin, worries the study is actually underestimating breakthrough cases, because the patients might have gone to different hospitals to be treated for COVID-19, or might not have reported their breakthrough case at all.  “I think they might have missed some patients.”

Deepali Kumar, a transplant infectious disease physician at University Health Network in Toronto, says this is a “welcome study,” but she would like to know more about those who had breakthrough infections before drawing any conclusions. Because the study is based on summary data and not complete medical records, it can’t provide information about whether the serious breakthrough cases were in older organ recipients, or in patients who received a particular kind of transplant, she says. “There are a lot of questions remaining.”

One thing is certain, however: “We need to do a lot more to protect our transplant patients,” she says.

A potential solution: a third shot of vaccine. Kumar, Segev, and other researchers are studying whether a booster dose could give transplant recipients better COVID-19 protection.

Two recently published studies have shown promising results. In the first, published last month in The New England Journal of Medicine, 68% of organ recipients produced antibodies after a third dose of the mRNA vaccine made by Pfizer, up from 40% after two doses. In another study published last week in JAMA, doctors administered a third dose of Moderna’s mRNA vaccine to 159 kidney transplant patients who generated little to no antibodies after two doses. They found that 49% of these patients subsequently started to churn out antibodies.

Third doses are not yet an officially recommended course of action for immunocompromised people in most countries, but as more data come out, policies are shifting. The French government endorsed third doses for transplant patients in April. The United Kingdom’s National Health Service also plans to begin to offer a third vaccine dose to immunocompromised individuals beginning this fall. In the United States, an advisory panel for the Centers for Disease Control and Prevention last week evaluated recommending third doses, but likely won’t make an official recommendation until after the Food and Drug Administration offers full approval to the mRNA vaccines. [Update: FDA has approved and boosters are now recommended]

In the meantime, transplant patients should still get their COVID-19 vaccine, Segev says, because limited protection is better than none. But they should also continue to wear masks and practice social distancing, he stresses. Getting the rest of the population vaccinated is another crucial step in helping protect these patients, he adds. “This is a stark clinical reminder that transplant patients are inadequately protected by the standard vaccine series.”

Article Taken From July 26, 2021 Science.org — News

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

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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 children. That said, they often feel accepting a kidney from a child is incongruent to their parental oaths and responsibility to keep their loved ones out of harm’s way.

Oddly enough, most parents don’t put themselves in their children’s (or loved one’s) shoes and therefore don’t view their objections as hurtful or harmful.

Parents need to be guided so they can see their opposition to accepting the gift of life from a child is actually hurtful. The hurtful part comes into play when the parent robs the child of joy and psychological gain, which they’d receive from helping a beloved parent live a better and longer life.

To balance perceptions, create a reverse scenario for the parent to ponder. Ask the parent if they’d ever consider donating a kidney to their mother or father if they were in need. Chances are, you’ll hear a resounding “Of course, I would!”

When this is the case, present 2 follow-up questions:

  1. How would you feel if your mother or father disallowed you from trying to save their life?
  2. Could you live with the memory of being prohibited from saving, enhancing or extending your parent’s life?

Putting the shoe on the other foot often allows parents to reframe their need to dishonor their child’s wishes. And, while protecting a child’s medical safety by prohibiting donation, it actually hurts their emotional and physiological health for years to come.

Let’s face it. The child wasn’t asking for approval. They were simply stepping up to serve. Their desire to help is merely a reflection of the loving values their parents taught them –family first, always.

We often forget that the gift in giving is not in the receiving, but rather the joy one receives from the giving. No one should have the power to take that away from the giver.

Donors have said, “If my recipient refused my offer, I’d be robbed of a blessing.” It’s not the receiver’s call to accept or decline. That’s the transplant centers’ job.

So, the next time you hear a parent in need of a kidney transplant refuse to accept one of their children as a potential donor—or anyone refuse to accept a kidney from a loved one—read this article to them, or better yet, print it off and hand it over with endearing smile.

Author: Risa Simon, 2010 (live-donor) preemptive kidney transplant recipient, motivational speaker, inspirational author, patient mentor/advocate and founder/CEO of Simon Says Seminars, inc., TransplantFirst Academy, TransplantStrong, and the Donor-Seeker® Program. For more information contact: risa@transplantstrong.com  or visit: www.TransplantStrong.com

 

 

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