A Non-Profit 501c3 Kidney Patient Empowerment Organization

kidney donation

Increasing Living Kidney Donor Transplants

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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.

finding kidney donors
Kidney transplant hopefuls role play ways in which to communicate their need for a living donor

 

Living Kidney Donors Day

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Living Kidney Donor

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. 

 

Donating A Kidney In Advance of Need = Lives Squared

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Donating A Kidney In Advance Holds Potential To Save Multiple Lives.

Here’s an unprecedented concept that encourages more people to become living kidney donors. It’s called the Advanced Donation Program. It was developed to allow healthy individuals to consider donating a kidney in advance of when a friend or family member might need one. In other words, a potential living kidney donor could donate a kidney at a time that is more optimal for their schedule or candidacy, while still protecting the future needs of their intended recipient.

The New York Times described this concept akin to a gift certificate, layaway plan or voucher program. Call it what you want. The most exciting thing about this innovative program, initiated by Dr. Jeffery Veale, a transplant surgeon at Ronald Reagan’s UCLA’s Medical Center, is that it has the potential to help more than one person, in between a pause in time.

This revolutionary concept was suggested by Howard Broadman, a 64-year-old attorney and retired judge who lives in Laguna Niguel, California. Broadman approached UCLA with the desire of donating a kidney to a stranger now so he could provide his grandson some assurances for when he would need one in the future.  And that’s exactly what he did.

Broadman’s donation essentially gives his grandson “earned protection credit” and priority towards his future donor needs. This, notwithstanding the potential to help two or more people in other time-lapsed paired exchanges.    

Donating a kidney in advance can also come into play when a major anticipated life event — such as vacations, employment restrictions or family matters could potentially restrict donors from moving forward. I personally experienced this when a friend was ready to donate before I my renal function reached transplant eligibility. By the time I was ready, my friend had an employment change and was no longer able to donate. In this program he could have helped a stranger altruistically when he was most eager to do so, while still protecting my future needs.

Program Overview:

The National Kidney Registry’s Advanced Donation Program (ADP) is a paired exchange separated in time. This program allows medically and psychosocially acceptable donors to donate their kidney before their intended recipient needs a kidney. The timing of this program helps someone in need today while also protecting their intended recipient, by advancing them to transplant at their time of need. Some ADP donors have donated only a few weeks before their intended recipient was transplanted. Other ADP donors may be donating 10 plus years before their intended recipient needs a transplant; and some donate in the hope that their intended recipient will never need a transplant (or another transplant). It should be noted that there are no written guarantees. This stands to reason, as guarantees cannot apply in situations that would be beyond the control of such a guarantee—(i.e.; recipient health, challenging antibody levels and transplant candidacy).

Ultimately, when the intended recipient redeems his or her gift certificate, the last donor in a current chain would donate their kidney to them. 

Nine other transplant centers across the U.S. have agreed to offer the gift certificate program, under the umbrella of the National Kidney Registry’s advanced donation program.  These centers currently include: UCLA, Emory, New York Presbyterian, UCSF, University of Maryland, University of Wisconsin, Cleveland Clinic, University of Chicago, Allegheny General, Sharp Memorial and Virginia Transplant Center.

  • 30 million people with chronic kidney disease in the U.S., – strong candidates for the innovative new program.
  • 500,000 people in the U.S. with a functioning kidney transplant, but the transplants typically last for just 10 to 20 years. They are also strong candidates for this program should a second transplant is needed.

The TransplantFirst Academy hopes the program will eventually go a step further by addressing the needs of people who fear if they help someone today, they might not be able to help a spouse or a child in the future. The design of this program provides some assurances and “peace of mind” surrounding those unknowns. Ultimately, the hope is that Advanced Donation will encourage more altruistic donors to step forward, which will trigger more chains and save more lives.

If Just 0.5 Percent of The Nation’s Adults Became Living Kidney Donors, Our Kidney Transplant Waiting List Would Be Eliminated 15 Times Over.

Nationwide effort to expand post-donation benefits to living organ donors

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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 Organ Donors Can Now Receive An Extra Layer of Protection, Through Their Recipients Tele-medicine Family Sharing Plan
Living Organ Donors Can Now Receive An Extra Layer of Protection, Through Their Recipients Tele-medicine Family Sharing Plan

Living Kidney Donor Tribute Inspires Followers

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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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