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/

Check out this animated video with a heartfelt twist from an adorable “fur-friend.” 

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/

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The post New Children’s Book for Adult Kidney Patients Waiting for a Transplant appeared first on TransplantFirst!.

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

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After Five Attempts to Pass, Let’s Make This Year Our Last!

The post Living Donor Protection Act 2024 – H.R. 2923/S. 1384 (2023-2024), appeared first on TransplantFirst!.

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/

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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

The post Why COVID-19 Vaccine Boosters & Precautions Continue For Transplant Patients appeared first on TransplantFirst!.

To remove this barrier, physicians and patients must agree to think in a completely different way. Education providers must focus on more proactive measures to achieve better outcomes—and patients must be willing to engage long before they experience the full effects of their disease.

Neither party can remain “stuck in neutral” without forfeiting success.

Distractions can deter even the best of intentions. Apart from fear and denial, getting (or staying) on dialysis can appear to be so much easier than securing a transplant. With dialysis, there are zero health prerequisites and no wait times other than their fistula maturing. Initial vein mapping ultrasounds and access procedures seems fairly innocuous compared to a transplant surgery that requires an extra kidney.

On the other hand, dialysis ends up being much more difficult. Just ask anyone already on it. From time-consuming hook-ups and grueling blood cycling procedures—to its after affects that zaps the users energy and prohibits them from their favorite foods. Unlike a kidney transplant, dialysis cannot replace hormones and vitamins needed for good health and well-being. At best, dialysis can only provide about 10% renal function – a far cry from a round-the-clock transplanted kidney.

To secure a transplant, patients must be encouraged to advocate for a transplant upstream, when they have adequate time and more energy to fight for a better life. The status quo for patient education has been to delay renal replacement options until the patient nears the need for dialysis. Because of this, the possibility of securing a transplant before dialysis, (known as a preemptive kidney transplant or PKT) is severely underutilized.

Providers must agree that these standard norms are not in the patient’s best interest. For those who believe delayed patient education does no harm, it’s time to come to grips with the fact that delayed timelines do no good.

Our profession’s duty and call to action must be to preemptively detour patients from unwittingly sleepwalking their way to dialysis—particularly when the chance of achieving a better outcome is possible.

The truth is that the most qualified transplant candidates lose their ability to bypass dialysis because they were not encouraged to engage in the process earlier. Providing early transplant information is a proactive right.

Preemptive transplant information cannot be doled out just to those who appear eligible after they lose significant renal function. It’s morally wrong to withhold this information, even if practitioners think the majority of their patients may never be transplant-eligible. Who is to say, those who may appear to be ineligible today couldn’t become eligible in the future, given the chance.

It’s time to flip the “content- information switch” into its “ON” position earlier in a patient’s disease continuum. Patients deserve to know all their options—long before they are forced into the only survival option remaining. We have a duty to help our patients  thrive, not just survive.

Our professions Hippocratic oath is no longer good-enough.

“First, Do No Harm” allows for subjective interpretation and old mindsets to prevail.  A more universally supportive pledge begins with “First, Do More Good.”

It’s time to open the gate towards better outcomes for all.

By Risa Simon

The post Transplant Before Dialysis: It’s Time to Do More Good appeared first on TransplantFirst!.

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

The post Should A Parent Accept A Kidney From An Adult Child or Loved One? appeared first on TransplantFirst!.

Moreover, the 726,000 individuals already suffering ESRD challenges are not alone. Each year they are joined by 126,000 unsuspecting newcomers.1

While the rate of this growing population is highly disturbing, the destructive consequences of the disease are far more alarming. Over the last three decades, more than 980,000 ESRD patients lost an early battle to this disease—and it’s not getting any better. The premature death toll is estimated to rise to 1.4 million by 2027.1

Today, half a million ESRD patients are struggling to stay alive on dialysis. Of those, more than 95,000 pray they’ll survive years of waiting for a kidney transplant from our nation’s insufficient organ supply.  Sadly, the lion’s share of ESRD patients will never actualize a transplant (before they need dialysis), because they were overlooked as potential transplant candidates.

Dialysis conversations are often presented as the first line treatment—with little, if any mention to it being less desirable than transplant.   Most patients don’t realize dialysis is incapable of removing all the body’s toxins, replenishing essential hormones or replacing active vitamins. They are rarely told those sacred functions are an “inside job,” managed exclusively by healthy human kidneys.

Without this understanding, patients can be easily swayed to disregard transplant opportunities until they’ve started dialysis. Very few patients realize the consequences of postponing transplant could lead to less favorable outcomes. It can also jeopardize candidacy, and even shorten their lifespan.

ESRD patients deserve to know the untethered truths about their options and be encouraged to secure their best quality of life. Alarming statistics about dialysis associated infections and life-threatening comorbidities must also be better known to help patients make more informed decisions.

Statistics matter too. Informing patients that 20% of the 100,000 ESRD patients who begin dialysis each year are expected to die within their first year—and 50% are likely to die within 5 years, are prime examples of what patients need to know before saying yes to dialysis.2

While critical facts are not easy to share, professionals must disclose these facts to help patients gain full transparency in informed consent. This practice can encourage eligible patients to proactively set goals to secure a transplant before they require dialysis. When best practices are timed appropriately, patients can engage in a more proactive manner.

Kidneys from Living Donors

Kidney transplants performed with a kidney from a living kidney donor (LKD) can offer a multitude of benefits. Some of those benefits include the transplanted kidney responding quicker, functioning better and lasting longer than those transplanted with kidneys from deceased organ donors.

LKDs also offer their recipients a fast track to transplant, by allowing them to schedule their transplant closer to their time of need. This is key, as recipients can often bypass the need for dialysis, which opens the path to preemptive kidney transplantation, or PKT.

From quality of life to better survival rates, less medical complications and reduced depression, PKT can offer recipients a better and longer life. The PKT advantages allow recipients at a more productive role in society, return to their jobs quicker, and stay employed longer. Preemptive recipients can also enjoy more time with family and friends.

From a financial perspective, getting a transplant is less costly than time on dialysis. We know this to be true because transplants save taxpayers an estimated $146,000/ per transplant performed.3 Yet, despite these extraordinary benefits preemptive transplant is severely underutilized.2 It is time to expose the detrimental ramifications in lost PKT opportunities as an urgent call to course correct. This article embodies that call by exposing (and dismantling) unconscionable PKT conundrums.

Common Barriers

One of the most common barriers in PKT stems from an outdated mindset that “stable” renal function—requires no action.4 This belief ignores life-threatening consequences due to sudden declines from underlying disease and/or co-morbidities.4,5,6 Patients rely on their physicians for guidance. The silence coming from their trusted advisors is beyond deafening. It’s become potentially life-threatening.

Trigger #1. Historically, there has been a general reluctance to initiate early renal replacement conversations for fear of frightening patients prematurely or depressing ineligible populations. While holding-back conversations might mitigate distress for some, it clearly robs quality of life from many others.

Trigger #2. Fear and social-cultural differences can keep patients from more favorable pathways.4 This is particularly true for those unable to accept their imminent loss of renal function. Nonetheless, a patient’s readiness, willingness and desire for a better life is often physician driven.

Hence, it is far wiser to use patient fear as a powerful catalyst, rather than a deterrent. Simply stated, a clear understanding of what a patient could face if they don’t proactively seek a preemptive transplant, is often more impactful than what they could potentially gain by achieving this goal.

Timing is Everything

The timing of patient engagement also plays an important role in outcome success. While the Centers for Medicare & Medicaid Services (CMS) offers a six-hour covered benefit for patient education, the program disincentivizes PKT options by restricting access to individuals above eGFR 29.7  Supported by the Improvements for Patients and Providers Act [MIPPA] of 2008, one would think the program’s name alone would ensure congruent standards to support its core purpose.

If we agree that PKT success relies heavily on early chronic kidney disease (CKD) education, we must agree that patients deserve enough “processing time” to apply new knowledge, contemplate their options and proactively seek their best outcome.

Likewise, we must also agree that the Organ Procurement and Transplant Network’s (OPTN) suggestion to refer patients to transplant within Stage 4 and 5 is too broad in range and vague in scope to optimize PKT opportunities.4 We know this to be true from the low rate of preemptive transplants performed to date. The few patients who discover transplant benefits and request a preemptive referral, typically find themselves in a nephrologist or transplant center “push-back” war. They’re often told it’s “too early” because their eGFR is stable or hasn’t fallen consistently below 20.

To the patient, push-back translates to “Wait to get sicker”—with no regard for protecting future eligibility or losing active donor interest.  When patients are referred to transplant as they approach dialysis’s ledge, they experience an automatic disadvantage of insufficient time—a precondition for finding, testing and awaiting evaluation committee conclusions.

Waiting for a kidney from a deceased donor has become a guaranteed PKT “deal-breaker.” We know this to be true, because virtually all preemptive transplants are achieved when candidates present a qualifying LKD before they require dialysis.

To that end, CKD patients must be exposed to PKT options in earlier stages of disease, ideally starting as early as eGFR 59.8 This timeline will ensure patients have enough time to process their options, contemplate their future, and fight for their best life possible.

Patient Education

Despite CMS’s covered benefits for chronic kidney disease (CKD) education, very few transplant-eligible patients benefit. Much of this is due to disseminating a downpour of dialysis content prior to introducing transplant options.  Content prioritization must be improved to avoid confusion, overwhelm and blurring “optimal choice” benefits.

Using a sales analogy, a customer is more prone to remember and connect with the first product they are exposed to, particularly if the salesperson is more enthusiastic or knowledgeable about that product. By the time a second option is introduced, the customer can fall into “information-overload,” making it difficult to discern the key differences between the two products presented.

This analogy underscores risks associated in having large dialysis organizations LDOs (who admittedly report low levels of transplant knowledge) develop and present ESRD education. Using this scenario, curriculum developers might unconsciously create bias and potential conflicts of interests.

To correct this problem, ESRD content must be developed, challenged and approved by a diverse team of transplant and dialysis professionals to reveal the full scope of balanced risks and benefits. Post-transplant recipients and dialysis patients also deserve a seat at the curriculum development table to ensure their voices are heard.

Disseminate Best Options-First!

It is well known and documented that PKT is the best option for better outcomes. This claim underscores the renal profession’s responsibility to help patients try to bypass the need for dialysis, regardless of presumed transplant interest or eligibility. While a patient may not appear to be transplant-eligible at the time of training, dialysis comparisons can encourage ineligible populations to proactively strive for future candidacy.

Of equal importance, patient education must be free of misinformation and bias. Education must also be provided upstream, in earlier stages of disease, to ensure ample time for decision-making—before they are inundated with overwhelming health burdens. Unless deeper conversations about treatment options are proactively presented, patients will be unable to make proactive decisions.

This reality is underscored by studies that show 80% of ESRD patients are inadequately educated about transplantation and living donor options.9

Motivation is Key

ESRD patients often surrender to dialysis as an inevitable destiny. The belief for most patients is that dialysis is a prerequisite to transplant—and it appears easier. Even if these patients had the energy to consider a better life option, the emotional toll from managing ESRD make that reality difficult to imagine.

No one would argue transplant is a more difficult bridge to cross when compared to dialysis. For starters, dialysis does not require extensive medical testing or an extra kidney. Yet, patients will never work towards achieving this goal without giving them good reason.

Information is power. Hence, the patient’s full understanding of risks and benefits will always drive their level of interest. Herein lies the nephrologist’s opportunity to make a difference. By committing to delivering small, repeatable and expandable segments of patient education— (when their patients are healthier and more eager to fight for a better life), they’ll be able to contemplate their best option in advance of need.

“Luck is what happens when preparation meets opportunity.”-Elmer Letterman

Challenges

The first hurdle for hopeful PKT recipients involves timely evaluations. Despite the high 5-year mortality rate of dialysis, transplant referrals are intentionally delayed. Yet, if transplant referrals were viewed with the same level of urgency as a life-threatening condition, this hurdle could be overcome.10

The next, and seemingly never-ending challenge for hopeful PKT recipients, comes with the task of finding potential donors. It has been reported that the majority of ESRD patients are inadequately educated about transplantation and living donor options.9 Another study revealed 80% of transplant candidates polled admitted that they are intimidated by the thought of identifying potential donors, and another 60% claimed they were too embarrassed to bring up the subject.

Finding potential donors through family or friends is hard enough. The smarter “ask” is a request to expand need awareness through word-of-mouth and social networking.9 To that end, patient engagement programs must include guidance on how to educate the general public on the opportunity and need to increase living kidney donation.8

Improvements in patient education, including scripts and role-play examples to build confidence and strengthen interactions are also needed.4,9 Of equal importance, curriculums must encourage dialogues with family and friends, including how to script invitations to join campaign forces through social media.

Additional challenges surface when potential donors change their mind. This is not uncommon. Everyone has the right to change their mind— particularly on a decision of this gravity. Transplant centers actually encourage potential donors to reconsider their decision to ensure they don’t have any doubts or concerns moving forward.

The bright side for those who either can’t (or choose not to) move forward, is seen in their willingness to expand the search for more potential donors. Another challenge surfaces when an acceptable donor finds themselves incompatible to their intended recipient. Nearly 35% of all living kidney donors are found to be incompatible to their intended recipients. Fortunately, Kidney Paired Donation (KPD) programs offer incompatible donors a wonderful way to stay in the game and create a win for all.

One of the toughest hurdles for potential living kidney donors involves gaining family support. When potential donors tell their loved one’s that they want to donate a kidney to a friend—or a stranger, it can go over like a lead balloon. Understandably, parents, spouses and adult children are wired to protect their loved ones. This is where education becomes key. Support is best gained when supporters know more about the process. This includes the degree of risk, timing of recovery and their potential role in caregiving.

The amount of time a donor must take off work for testing, surgery and recovery can also squelch a donor’s intentions. Having to take a minimum of 3 weeks off (for recovery) can put job security at risk, not to mention a heavy financial burden into play when it’s taken without pay. It only gets worse when the donor is up against out of pocket travel expenses—and costs for dependent, elderly and pet care while they’re recovering.

While there is the possibility to request assistance for those donating to lower income recipients, hopeful advocates await the government passing of the Living Donor Protection Act of 2021.11,12 (Currently, a handful of states have passed limited variations of their own statewide bills).

Transplant centers can also cause hurdles. One of those hurdles is seen in a tactic referred to as a “cooling off” period. This intentional “delay response” protocol is used to ensure prospective donors are fully committed.

Not surprisingly, however, potential donors are disheartened by the center’s lack of response. To them, the silence is incongruent to their “urgent call” to save a life.   Transplant centers that use delay tactics like these are encouraged to become more sensitive to the detrimental consequences for their hopeful recipients.

The challenge to find potential donors who are willing to step forward is hard enough. Add the complexity of donor evaluations, surgical risks and time off work—alongside delayed communications and the hope to secure a living donor transplant appears nearly impossible.

Providers need incentives too. Nephrologists are not fairly compensated for pre-transplant or post-transplant patient visits. Hence, a separate payment needs to be considered for time involved in transplant preparation and care—including referrals to transplant centers.4 This strategy alone holds a powerful means for increasing preemptive transplant rates.

Our current kidney allocation system is a challenge because it causes confusion. This occurs when waitlist credit is awarded on the date that dialysis was initiated. Because of this, patients often think they must start dialysis in order to earn waitlist credit.

To prevent incorrect assumptions and encourage proactive self-advocacy, educational curriculums must incorporate current waitlist timelines and a clear understanding of how the kidney allocation system works.4

Medicare ESRD restrictions also causes financial challenges. This occurs when ESRD Medicare coverage is limited to three years for medications post-transplant. Yet, if a transplant recipient loses their coverage, and subsequently can’t afford their medications, their transplanted kidney will reject. When a kidney rejects and cannot be saved, the patient requires dialysis to survive.  Here, everyone loses. However, patients, donors and transplant centers are not the only ones who lose. The government also loses.

For years we have known that a kidney transplant costs less than dialysis, beginning post-transplant year two. A recent Health and Human Services study reconfirmed this belief by showing a government savings of $73 million over a decade.3  [These numbers were computed by showing the first-year costs of getting a transplant to be roughly $131,000, with ongoing medication costs estimated under $3,400 annually]. These calculations present a huge savings after year two.

When you consider Medicare covers $90,000 per year for each dialysis patient (for as long as they need dialysis), you can quickly equate the financial gain from securing the longevity of each transplant performed.

Conclusion  

While preemptive transplantation is the preferred end-stage choice for renal replacement therapy, it continues to be vastly underutilized. Communicating preemptive transplant benefits in earlier stages of disease (by eliciting discussions as early as eGFR 59—and initiating referrals at eGFR 25), could effectively remove the bulk of barriers for those who deserve a better and longer life.

Helping patients understand the benefits gained in PKT is essential for increasing patient interest and desire. Teaching patients to communicate their need and search for potential donors in earlier stages of disease will also ensure they get a fair chance to achieve this goal. Removing financial disincentives to donation by adding protections will further assist the profession’s quest to help patients thrive—not just survive.

Now is the time to encourage preemptive transplant opportunities and position PKT education as a moral imperative and critical link for advancing optimal outcomes. Now is the time to revive the profession’s Hippocratic oath to do no harm.

It’s time to do more good.  

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About the Author

Risa Simon is the founder and CEO of Simon Says Seminars, inc., TransplantFirst Academy and TransplantStrong. As an immensely grateful preemptive (live-donor) kidney transplant recipient, she’s giving back to empower others through her Donor-Seeker® Program, webinars,  coaching and mentoring—and self-help books: In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors; and Shift Your Fate: Life-Changing Wisdom for Proactive Kidney Patients. For more information contact:  mailto:risa@TransplantStrong.com

The post Untethered Truths: The Moral Imperative To Boost Preemptive Kidney Transplants appeared first on TransplantFirst!.

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 should receive a SARS-CoV-2 vaccine.

The post Observational Research: COVID-19 Vaccine Antibody Study for Transplant Recipients appeared first on TransplantFirst!.