preemptive kidney transplant
Living Kidney Donors Day 2018
The State of Arizona recognizes Living Kidney Donors as life-saving humanitarians who inspire our community to “give back” in bigger and bolder ways in Arizona’s HCR 2042 proclamation resolution for Living Kidney Donors Days in 2018.
Over 100,000 end-stage kidney disease patients nationwide pray their name will make it to the top of the list, so they can get a life-saving kidney transplant. The average wait for a deceased donor’s kidney is four and a half years; in some regions, the wait can be as long as nine years. Yet, there is a way to end this wait and improve outcomes, if communities were better informed.
Arizona State Representative Heather Carter teamed with TransplantFirst Academy founder, Risa Simon on March 8, 2018, to re-introduce resolution proclamation, HCR 2042, to make March 8, 2018 Living Kidney Donors Day in the state of Arizona. This renewal initiative is intended to extend statewide awareness and recognition in living kidney donation.
By design, the proclamation falls on World Kidney Day and Donor Network of Arizona’s Donate Life Day, to further expand collaborative efforts to expand awareness. Simon said, “Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s often hard to recognize them. They deserve a lifetime achievement award for the role they play in saving lives and inspiring community citizens to give back in bigger and bolder ways.”
The significance behind HCR 2042 is that it represents hope for nearly 2,000 people in Arizona who are in desperate need of a kidney transplant. The names of these individuals reside on a list with a 3 to 5 year waiting period. Sadly, 90 names are removed from that list each year when patients die while waiting for their much-needed transplant. Another 50 Arizonans are removed from the list due to advanced illness, which often disqualifies them from ever receiving a transplant.
The good news is that each year approximately 575 people in Arizona are removed from the list because they received a kidney transplant. The bad news is that the list and its wait never gets any shorter. This quagmire exists because an additional 865 new names are added every year (290 more than those removed). This impossible balancing act and its life-threatening challenge continue to disrupt organ donation supply and demand.
Living kidney donation, however, holds the potential to course-correct the destiny of this deadly foregone conundrum. Simon asserts, “Our organ shortage stems from a lack of education and awareness.” She describes the statewide proclamation as a befitting salute that increases awareness and right-doing. She went on to say, “the noble acts of living kidney donors don’t end after donation. Their gift represents more than one-life saved. Their actions live on to inspire ordinary people to seek extraordinary ways in which they can engage in life-saving opportunities for others in need.”
As a recipient of a live-donor kidney transplant, Simon said, “While those of us who were blessed with a transplant from a living donor will be forever grateful, we must not forget those left behind. Living kidney donors embody the promise of a better life and a better tomorrow. Now we need to make it a better life and a better tomorrow for all.”
One of those humanitarians is Kati Walker, a living kidney donor who donated one of her kidneys to her children’s elementary school principal in Cave Creek, Arizona. Kati has since become a strong advocate for living kidney donation and an inspirational spokesperson for the TransplantFirst Academy. Post-donation, Kati’s active life remains full of love and joy. Even after her donation, she continues to give back at every turn. There’s no prompting needed when you hear Kati affirm her kidney donation was “one of the best decisions I ever made!”
To date, more than 145,000 living kidney donors have selflessly saved an equal number of lives, over 2,800 of whom were saved in Arizona. We salute them all and are hopeful more good-hearted Samaritans will follow Kati’s lead. Last year, living kidney donor transplants dropped down 39% from 2009 in Arizona alone. Through increased awareness, the TransplantFirst Academy and other organizations, like the National Kidney Foundation of Arizona and the Erma Bombeck Project, believe Living Kidney Donor’s Day holds great promise by shining light on increased awareness and recognition that can lead to a better and longer life for all.
About TransplantFirst
TransplantFirst Academy is a 501c3 non-profit organization based in Phoenix, dedicated to empowering kidney patient outcomes and increasing living kidney donor awareness. For more information, visit: TransplantFirst.org. To request an interview, contact TransplantFirst’s founder/CEO, Risa Simon, at (480) 575-9353 or via email at risa@transplantfirst.org
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Stem Cells Replacing Immunosuppressants?
Imagine the day when a transplant recipient could consider stem cell treatment instead of taking a lifetime of immunosuppressants to prevent rejection. Of course, the threat of organ rejection is a serious concern for those who receive a kidney transplant, and immunosuppression is needed to prevent the transplant recipient’s immune system from recognizing the donated kidney as a foreign object, with different DNA. Yet, immunosuppressants are not without risk.
While immunosuppressants are designed to prevent the patient’s immune system from attacking the donor kidney, they can also present problems. Those problems include an increased risk for nephrotoxicity, an inability to fight off pathogens, and the increased risk for diabetes, heart disease, and even cancer.
Another issue surrounding immunosuppressants is tied to the cost of the medication. Immunosuppressant medications can cost up to $14,000 every year for the rest of a kidney recipient’s life, depending on insurance coverage. Despite these negative aspects, immunosuppressants have the most common and most effective way to prevent rejection in organ transplant recipients.
Earlier this year, California’s Stem Cell Agency (CIRM) approved funding for further research and clinical trials by involving the use of stem cells to prevent organ rejection from a donor. The hope for this new research is to discover alternatives to immunosuppressants medications.
One of those alternatives is known as stem cell treatments. Stem cell treatments involve collecting stem cells from the donor’s bone marrow with the goal of introducing them into the directed kidney transplant recipient before the transplant is performed. Stem cell treatments allow the patient’s immune system to recognize the donor’s cells and begin to adapt prior to receiving the donor kidney.
Advancements in stem cell research are shinning a hopeful beam of light on the reduced risk of rejection, fewer side effects, adverse events and costs for immunosuppressants.
Risa Simon, Founder/TransplantFirst Academy / www.TransplantFirst.org
Proactive Engagement Improves Outcomes for Chronic Kidney Disease Patients
Approximately 30 million American adults have Chronic Kidney Disease (CKD), yet only 10% are aware they have it; the other 90% have no clue. Patients find themselves completely baffled when they are told they’ve lost significant kidney function without prior warning. For those who crash into renal failure, their confusion turns to outrage once they realize that an opportunity to change their fate no longer exists.
How can this life-threatening disease be missed by our healthcare system’s radar and cause such a negative impact to so many lives? The answer to that question continues to challenge most patients and providers. Aside from the fact that CKD has no recognizable signs or symptoms in its earlier stages and can go undetected for years, preventive screenings to prevent illness and identify problems stand out as the missing link.
While most healthcare organizations purport to offer comprehensive public health and preventive medicine, only a percentage actually do. Because of this, innocent bystanders forego comprehensive health screenings, nutritional counseling, medication reviews, and educational activities that empower preventive self-advocacy.
Sadly, without this focus, chronic kidney disease patients inadvertently find themselves “sleep-walking” their way to dialysis without ever realizing they could have secured a better and longer life, given the chance.
Are practitioners to blame for this diagnosis dearth? Knowing patient education and screenings require additional time and resources (a commodity most healthcare providers lack), perhaps the insurance industry and healthcare system bureaucracy are target antagonists?
One might have thought that the passage of Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), an incentive for physicians to offer more by participating in alternative payment models, would have solved this problem. Yet, chronic kidney disease specialists (nephrologists) can only participate in these models when caring for dialysis patients—something kidney patients hope to forestall or completely avoid.
Fortunately, newly proposed legislation now includes upfront payment models to improve early detection and diagnosis of kidney disease. The objective behind this admirable initiative is to provide physicians financial incentives to preventively screen, diagnose and educate their patients on how to slow the progression of their disease and secure their best treatment option.
The proposed model, known as H.R.3867, suggests a pilot program within the Department of Health and Human Services (HHS). The model proposes a per-member-per-month payment structure, which would offer nephrologists a financial well that can be utilized to provide proactive patient engagement. This is particularly helpful for “change agent” practitioners who feel stuck because they don’t have the time or staff resources to provide this type of engagement.
In this new model, practitioners are encouraged to proactively engage their patients in shared decision-making for better outcomes. Moreover, early engagement offers an extended timeline to transplant candidates who are seeking a preemptive transplant (a transplant before the need for dialysis)—including additional time to help hopeful candidates find a living kidney donor.
Since this proposed payment structure already exists for dialysis patients, it should be a seamless act to expand on it. After all, shouldn’t the patient-centered goal be to reduce the incidence of people crashing into renal failure and requiring dialysis, rather than just managing dialysis? It could be the patient’s only chance to secure a better life.
Undeniably, early diagnosis, education, and engagement contribute to a chronic kidney disease patient’s quality of life. Early engagement can also reduce costs for insurance companies, lower hospitalizations and re-admissions, and decrease mortality rates; all of which are vital measuring sticks for dialysis and transplant centers.
It’s time to spread the word about this life-enhancing triple-win. Talk to your elected officials and make your voice heard.
Looking for patient engagement resources (books, seminars, webinars, mentoring and coaching) to empower patients to become their own best advocate, visit: www.TheProactivePath.com and www.ShiftYourFate.com. For programs on how to help transplant candidates end their wait by finding potential living kidney donors, visit: www.TransplantFirst.org
Article Snapshot: Proposed legislation to improve early diagnosis for chronic kidney disease and offer proactive patient engagement leads to better outcomes, by offering financial incentives to nephrologists.
Increasing Living Kidney Donor Transplants
HOW TO INCREASE LIVING KIDNEY DONOR TRANSPLANTS
THE CHALLENGE
Nearly 100,000 people are waiting on a list for their much needed kidney transplant and only 20% of the half million patients on dialysis make it to the transplant wait list. Of those, nearly 5000 die while waiting each year. It is a well known fact that transplant patients live longer and better lives at a fraction of the cost of dialysis care, yet the wait for a deceased donor’s kidney takes years.
PROPOSED SOLUTIONS
1. Encourage transplant eligible pateints to end their wait by finding potential lioving kidney donors. Provide template letter examples, outreach material samples and communication strategies in pre-transplant and nephrology practice settings. [Looking for templates, examples and samples? Visit this link: https://transplantfirst.org/finding-kidney-donors/
2. Inform patients that a transplant provides the best outcome. When providers unleash a proactive path to preemptive transplantation, eligible patients can work to AVOID dialysis.
3. Provide a more efficient and compassionate processes for donor screening and work-up needs to be implemented to avoid disinterest, frustration and change of heart.
4. Encourage reimbursement of living donor’s loss of wages and out-of-pocket expenses to eliminate financial barriers to donation.
5. Boost referrals and increase live-donor education at dialysis units and nephrology clinics. [Fact: Only 20% of the dialysis population is listed for transplant.]
6. Increase kidney paired donation (KPD) awareness. [Only 10% of all living kidney donations are engaged in swaps, a procedure that allows best-matched donors and recipients to be paired]. Peer mentoring can support such an increase, particularly when incompatible donors are told they are not a match.
7. Work together to help patients overcome barriers to live-donor transplant opportunities. Hemodialysis units, nephrologists and transplant center personnel must work together to build bridges to better quality of life outcomes.
Simply put: There is no excuse for not meeting these challenges.
You can help reduce the enormous wait list and needless loss of life (and suffering) experienced for those waiting on the list, by proactively engaging with your patients. Learn how to help your patients increase their odds of finding a living kidney donor here: https://transplantfirst.org/finding-kidney-donors/
Note: Considerable content in this article was excerpted from: ASN KidneyNewsOnline: Kidney Transplantation 2017 Breaking Down Barriers and Building Bridges.
Living Kidney Donors Day
The state of Arizona’s proclamation HCR 2019 recognizes Living Kidney Donors Day, as the first state in the nation to recognize Living Kidney Donors for their selfless humanitarianism. Of course, we owe a great deal of gratitude to Arizona Representative Heather Carter, R-Cave Creek, who teamed up with Kati Walker, media spokesperson for the TransplantFirst Academy (TFA) and proclamation’s brainchild and TFA’s founder, Risa Simon, for creating this well-deserved day of tribute.
On March 20th, we ask you to reach out and honor all living kidney donors (LKDs) who donated a kidney to save and extend the life of someone in need. LKD’s not only save lives, they give hope to who are waiting for a kidney from a deceased organ donor, which often takes 3-5 years. They also inspire ordinary people to seek extraordinary opportunities, by contributing to one of the most amazing, once-in-a-lifetime achievements available on this planet!
Living Kidney Donors Day helps us remember these humble heroes, which is important since LKD’s don’t wear a Medal of Honor or a superhero’s cape. They don’t hold a sign or carry a badge. In fact, they don’t even claim to be heroes. Yet, we know otherwise by observing the remarkable outcomes as a result of the lives they saved.
Living Kidney Donors Deserve More Recognition
We believe living kidney donors deserve more recognition. The intention of this campaign is to do just that, by publicly honoring these remarkable humanitarians, as extraordinary human beings who selflessly donated one of their kidneys to end the life-threatening wait for someone in need.
Living kidney donors are individuals who chose to donate a kidney (sometime during their lifetime) after obtaining approval from a transplant center’s medical evaluation committee. Most living donors choose to donate because they either knew someone in need or simply wanted to help a stranger.
Witness the Miracle
Because living kidney donors choose to donate one of their kidneys while they are living,* they get to witness the miracle of their gift (and experience immense pride of accomplishment) for years to come. *Living kidney donors also retain their right to donate their remaining organs later in life.
Just Imagine
Ever imagined what it would be like to save someone’s life or improve the quality of someone’s life by extending their remaining years- while you are still alive? Living kidney donors have transformed this dream into reality.
In this campaign, we’re inviting real-life living kidney donors to show their proud faces, take a bow and elevate their story to help us increase awareness and inspire others to lean in this direction. Have they inspired you?
Hidden Organ Donor Facts:
The Need: Over 109,000 end-stage kidney disease patients are in desperate need of a replacement kidney.
The Wait: It can take 3 to 9 years to receive the gift of a kidney from a deceased organ donor on the national transplant list. Living Kidney Donation can end the wait.
The Benefit: Kidney transplants offer a far better alternative to dialysis. The benefits include, a better quality-of-life, fewer medical complications and longer survival rates.
Match-Making: Living kidney donors don’t have to be blood-related to the recipient. They only need to be blood-type compatible. But even then, there are Paired Exchange Programs that can offer alternatives.
Know Your (ABO) Blood-Type
Your blood-type is necessary to determine if you’ll be blood-type compatible to the person in need. You can either ask your doctor for a blood-type (ABO) test or seek a “direct-consumer” lab alternative. Direct-consumer labs allow patients to order lab tests with or without a doctor’s order. Thanks to House Bill 2645 (sponsored by Arizona Representative Heather Carter, R-Cave Creek and approved by Gov Doug Ducey) this bill now allows consumers in Arizona the ability to request basic lab tests and access results through a secure online portal.
The Opportunity: Healthy individuals can donate a kidney while they are still living and continue to live a full life. In other words, kidney donors don’t have to wait until after they’ve passed to donate. They do, however, need to pass the transplant center’s donor qualification process in order to proceed.
Learn As Much As You Can
There’s a lot to discover when it comes to living kidney donation. That’s why we created the Top Twelve “Need to Know” Answers to the most frequently asked questions on living kidney donation. We encourage you to take the time to explore this handout. Learn more here: See Top Twelve Questions on LKD.
Nationwide effort to expand post-donation benefits to living organ donors
LIVING ORGAN DONORS RECEIVE FREE TELEMEDICINE BENEFITS TO GIVE LIVING DONORS ADDITIONAL MEDICAL PROTECTION
Healthtera, a supplemental health benefits company, that offers 24/7 telemedicine solutions powered by HealthiestYou (HY), announced the roll-out of its Living Donor Family Sharing Program to support the courageous individuals who have gave a piece of themselves to save someone’s life. This first-ever program is a nationwide effort to expand post-donation benefits to living organ donors, which allows live-donor transplant recipients (enrolled in Healthtera’s family telemedicine plan) to cover their living organ donor under Healthera’s “Family-Sharing Plan” at no additional charge.
Here’s how it works:
• Healthtera’s telemedicine subscribers can include their living kidney donor in their telemedicine benefits under their “Shared Family Plan” – at no extra charge.
• Benefits include unlimited 24/7 “on-demand” access to U.S. Board-certified physicians (via telephone, online or mobile app) for medical consultation and medically necessary pharmacy prescriptions.
• The monthly subscription fee for a transplant recipient is $18/month, which covers up to 10 family members total.
• This plan includes unlimited sessions with physicians and there are no deductibles or copay’s.
Of course you don’t have to be a transplant recipient to subscribe to telemedicine. Most people enroll for access to physicians after-hours or when traveling, during holidays and over weekends. This program can eliminate the need to wait days for an appointment for a basic need. It can eliminate the need to go to urgent care for most basic needs.
The TransplantFirst Academy (TFA) with Healthera’s principals, shared our founder’s story and vision to expand coverage to transplant recipient subscribers who would like to include their living organ donor in their family plan. This ground-breaking concept was approved and now recognizes living organ donors as life-saving health-heroes who deservedly qualify for coverage under their transplant recipient’s “Shared Family Plan.”
TFA feels it was a privilege to have played a small role in influencing this unprecedented expansion of benefits for non-related living donors.
They invite you to spread the word about this unique “extra layer of protection” that now allows organ transplant recipients to consider having for themselves, their families and their selfless health-heroes, their living kidney donors.
View Billboard Campaign to Honor Living Kidney Donors Here: 1kidney.org
Learn more here: http://finance.yahoo.com/news/living-organ-donors-receive-free-162700941.html
Living Kidney Donor Tribute Inspires Followers
TransplantFirst Academy is raising community awareness in living kidney donation.
TransplantFirst Academy urged Phoenix Mayor Greg Stanton to approve a proclamation in honor of living kidney donors for their brave gift. The proclamation was approved to be recognized throughout the month of January.
“Most healthy individuals don’t realize that they can donate one of their kidneys and make an immediate impact on someone’s life,” said Risa Simon, founder and CEO of TransplantFirst Academy. “The mayor’s proclamation combined with our billboard campaign, a tribute showcasing real-life living kidney donors, aims to expand awareness.”
“Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s often hard to recognize them. Their decoration of a few tiny scars is a unique distinction of lifetime achievement for the role they played in saving lives.”
Living kidney donation is not for everyone. It takes a very special and healthy person to qualify. Simon added, “Kidneys are hard to come by and our nation’s deceased organ supply simply cannot meet the demand. We hope that our billboard campaign makes people aware that they can make an impact now, not just after they are deceased.”
TransplantFirst Academy’s billboard campaign goal is simple:
1. Honor living kidney donors for saving more than 132,160 lives (2,834 lives in Arizona) as of December 25, 2015.
2. Capture community attention that ignites interest in living kidney donation.
3. Save lives by ending the life-threatening wait for those in need.
As a passionate patient advocate and preemptive transplant recipient, Simon said, “When my living donor stepped forward on my behalf, I received more than a highly functioning kidney. I received a sense of duty to advocate for all those facing this reality.”
About TransplantFirst Academy:
TransplantFirst Academy is a 501c3 non-profit organization based in Phoenix, Ariz., dedicated to empowering and improving kidney patient outcomes. For more information, visit transplantfirst.org. To become a sponsor or request an interview, contact Risa Simon at 480-575-9353 or risa@transplantfirst.org.
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Missing Link in CKD Patient Education
Many chronic kidney disease (CKD) patients are floating in a sea of uncertainty due to inadequate patient education and various knowledge barriers. Consequently, the patient’s understanding of various treatment options—and how the timing of engagement can impact each outcome, is often lost in the shuffle.
With the clock ticking behind the scenes, CKD patients often look to their physicians for advice. While the tendency to delay end stage option discussions early on because it can cause unnecessary fear, it also closes life-changing doors for those who could medically benefit from a timely transplant.
Hence, early education is key, especially for patients who are told “You’ve got lots of time.” Telling a patient they aren’t “sick enough” to learn robs them from learning more and proactively fighting for their best life possible. Regardless of perceived timelines, patients need to recognize how oblivious and passive behaviors can negatively impact future outcomes.
The missing link in CKD education is the delayed timing of introductions, which are encouraged to begin at Stage 4 kidney disease. Yet, kidney patients deserve the right to discover transplant opportunities—before their declining health completely forbids them from becoming a potential candidate. They deserve the right to fight for a better quality of life when they are healthy enough to give it all they’ve got.
Physicians have the power to course-correct this conundrum by simply engaging their patients in earlier stages of in their disease continuum, (ideally starting no later than eGFR 59, as patients enter Stage 3 kidney disease). Time is king and information is power. Physicians can empower their patients by sharing information early and repeating it often. Encouraging patients to proactively slow the progression of their disease and fight for a better life becomes key to achieving better outcomes.
Patients deserve to know what their future might look like and how they can drive their best path forward. They also deserve plenty of time to learn more, explore more and contemplate their options before time of need. It’s the only way to ensure sound decisions are make.
Asking Key Questions
It’s extremely important to encourage patients to become more engaged by advocating for their best life possible. Encouraging patients to ask important questions and contemplating opportunities before their clock runs out is essential.
The questions listed below encourage an open dialogue, while positioning healthcare providers as leaders who guide their patients on a more proactive path to their best life possible.
- “Is Transplant A Better Option To Consider Over Dialysis?”
- “How Do Outcomes Differ Between Dialysis Patients & Transplant Patients?”
- “Do You Think I Might Be Transplant Eligible?”
- “If I’m Not Transplant Eligible, Can I Improve My Future Chances?”
- “What Should I Do To Secure Long-Term Transplant Eligibility?”
- “What Transplant Centers In the Area Should I Consider?”
- “How Do I Get A Referral to A Transplant Center?”
- “What’s The Best Timing For Referral?”
- ”How Long Is The Wait On The National List For A Deceased Donor’s Kidney?”
- “Are There Long Term Benefits In Getting A Transplant From A Living Kidney Donor?
- “How Would I Ask Someone To Consider Being My Living Donor?”
- “How Early Should I Start This Dialogue?”
Conclusion
Addressing important questions long before the patient is in need of renal replacement therapy is key. Educating patients as they enter Stage 3 (eGFR 59) will empower their timeline to contemplate, plan and prepare for their best outcome. Early transplant referrals will inspirit potential recipients from attracting potential donors. Finding and testing living kidney donor takes time—often years. The evaluation process for potential recipients also takes time. When education is delayed and decisions are postponed, outcomes are put at risk.
At the TransplantFirst Academy’s founder, Risa Simon, instilled the wisdom she discovered as a preemptive transplant recipient to inspire all eligible CKD patients to seek a more proactive path for circumventing dialysis. Her pioneering efforts toward patient self-advocacy and empowerment have become the core fibers in the TransplantFirst Academy’s vision.
The TransplantFirst Academy is dedicated to bridging the missing link in CKD patient education and CKD patient empowerment, by providing healthcare providers an advanced education system beginning at early stages (starting at eGFR 59), before illness advances or depression sets in.
“When CKD Patients Are Exposed To Advanced Information Regarding Renal Replacement Therapy (Shortly After Their Initial Diagnosis), They
Are Better Equipped To Fully Participate In & Proactively
Advocate For Their BEST LIFE Possible.”
– Risa Simon, Founder TransplantFirst Academy
CKD patients need to secure a better life for themselves by becoming more engaged in the process long before illness advances. Let’s give them their best shot at living the quality-of-life they deserve. Inspire your patients to seek a better future by offering this exceptional learning system in your office. Visit: www.transplantfirst.org