Alexandra Harrison-Flaxman—How a Transplant Recipient Became a Legislation Advocate
“The passage of the Immuno Bill is not just a win for the patient community …” says Alexandra Harrison-Flaxman “… it’s a win because of the patient community.”
On December 22, 2020, the U.S. Senate passed S. 3353 – Comprehensive Immunosuppressive Drug Coverage for Kidney Transplants Patients Act of 2020 (The Immuno Bill).
Earlier, on December 8, 2020, the House of Representatives passed H.R. 5534, which set up the Senate vote.
The bi-partisan passage of the Immuno Bill now awaits the President’s signature.
Getting the bill passed has been Alexandra’s (“Alex’s”) passion for several years now and she says she cried when watching both the House and Senate pass the legislation.
“I was thinking, ‘This is crazy,’ I’ve just been a part of enacting actual change for kidney-transplant recipients,” says Alex, 34.
Indefinite Medicare Coverage for Anti-rejection Medications
In 1972, Congress ruled that Medicare would cover the cost of a kidney transplant for people with end-stage renal disease. Congress also ruled that the transplant recipient’s anti-rejection medication — one of the key factors that ensures long-term organ health — would be covered for 36 months.
Prior to passage of the Immuno Bill, if a patient could not afford their medications after those 36 months, the transplanted kidney would be rejected and the patient would have to return to dialysis — a costly and burdensome treatment that reduces the patient’s overall health outcomes and quality of life.1
Passage of the Immuno Bill has been near to Alex’s heart since March 2015, when she attended her first National Kidney Foundation Summit in Washington, D.C. Alex says that Senate passage of the bill takes a huge burden off patients and their families.
“You now never have to worry about paying for your meds versus putting food on your table,” says Alex.
Unlike most kidney-transplant recipients, Alex’s odyssey began in utero.
During Alex’s mom’s second trimester of pregnancy, the doctors saw irregularities. They said that if Alex were born, she would not live long and would have a short and painful life.
A few months later Alex was prematurely born.
“My right kidney was covered in cysts and was septic,” says Alex, “So they had to remove it ASAP. My left kidney had about 30% function.”
Dialysis at 8; First Kidney Transplant at 11
Alex’s left kidney lasted through 1994 when—at the age of 8—she went on dialysis for the first time.
She would be on dialysis for three years until she got her first kidney transplant in April 1997 at the age of 11.
Alex’s transplanted kidney lasted until January 2005.
“It failed in 2005 because I was noncompliant,” recalls Alex. “I was away at college for my first semester, and I thought I was invincible. I was not taking my anti-rejection meds. I made lousy decisions.”
A Journey of Self Discovery
After her kidney was rejected, Alex went back on dialysis. It was while doing dialysis for the second time in her life that Alex began a journey of self-discovery.
Alex started interviewing nephrologists and ended up going with one who chose nephrology because he called the profession “long-term care,” which would allow him to set up a relationship with his patients to see them get better.
“He wanted to be both a kidney patient’s doctor and their partner in care,” says Alex. “So, I told him, ‘You’re hired!’”
A Series of Disappointments
In 2011, Alex got her first call that a kidney was available, but it ended up not being a fit.
Then she got another call a few months later. Again, it did not work out.
After the third time of being teased with the prospect of a new kidney—only to be told it was not meant to be—Alex started to get frustrated.
To make matters worse, in late 2011, Alex discovered she had thyroid cancer.
The radiation treatments for her cancer meant she would have to wait at least three years to be considered for new kidney.
Alex’s local nephrologist produced a plan to do only one year of radiation and then get Alex relisted for a new kidney.
On May 16, 2013, Alex was working at a Women’s Wellness Day fundraiser hosted by the Susan Samueli Center when she received word from Cedars Sinai Medical Center in Los Angeles that they had a kidney for her.
At 4 a.m. on the morning of May 18, 2013, Alex called her mom and Alex’s best friend Torrey rushed to the hospital and waited with Alex in pre-op.
At 8:11 a.m., the phone rang.
“The anesthesiologist who answered the phone says, ‘It’s a go’” recalls Alex. “I just lost it. “
Alex then remembers seeing her best friend Torrey unzip her hoodie to reveal a shirt she had been wearing which read “Hello Kidney.”
Not So Fast
Alex’s newly transplanted kidney did not start working right away, and she ended up having two biopsies on it in the first two weeks.
She also had to remain on dialysis.
By her third week post-transplant, the doctors at Cedars Sinai told Alex to not come in for dialysis three times per week. They told her to instead come in once per week, to see if that would force the kidney to work.
Alex had a dialysis treatment on Saturday and left the clinic—terrified—knowing she would not have another one until the next Saturday.
The following Friday, Alex did something she had not done in eight years.
“I started peeing.”
She never again went back to dialysis.
Alex named her new kidney Nemo because she considers the kidney to be her “lucky fin.”
(Anybody who has ever seen “Finding Nemo” will get the reference.)
Since her second transplant, Alex says she has truly been able to cultivate a life.
“I’m no longer trying to survive day to day. I get to enjoy my life and live it to its fullest.”
Her favorite hobby is travel and says living with a new kidney has allowed her to travel all over the world.
“Something I wouldn’t have been able to do without my Nemo.”
Four years later, on May 18, 2017—the four-year anniversary of her kidney transplant—Alex married her husband, Andrew, whom she had dated when she was younger, and with whom she had reconnected after her transplant.
Taking Steps to Avoid Rejection
In her post-transplant care, Alex stays vigilant against kidney rejection.
Alex uses AlloSure®, which was helpful earlier this year when she was going through some rejection issues. A more recent AlloSure informed Alex and her doctor that everything is going well with Nemo.
Her passion and dedication to maintaining her gift moved her to get involved as an early user and advisor on AlloCare®, the recently launched app for transplant recipients from CareDx.
As a Beta user, Alex and other transplant recipients and leaders from groups like TRIO (Transplant Recipients International Organization), helped guide the development of the app.
Well beyond the testing phase, Alex admits to religiously tracking her medication and other biometrics in the AlloCare app daily.
“I also like that AlloCare detects trends in my blood-pressure readings and is a one-stop shop for managing my care.”
Honor the Gift
In January 2019, Alex attended a CareDx-sponsored symposium.
At a party after the symposium, she shared her passion for transplant-patient advocacy with Sasha King, chief marketing officer at CareDx. Sasha then introduced Alex to Scott Leezer, vice president of Government Relations for CURA Strategies, which provides public affairs and government-relations services for clients.
“I shared my story with Scott, and he told me, ‘We’re interviewing you tomorrow for this campaign we are starting.’”
That campaign ended up being Honor the Gift, a national patient-centered campaign promoted by a coalition of kidney and transplant organizations focused on getting the Immuno Bill passed in Congress.
Fruits of a Kidney-transplant Recipient’s Labor
After all she has been through in her life, Alex calls the passage of the Immuno Bill a great and satisfying victory.
She also calls it a “group effort” and is honored to have been a part of it becoming a law.
She is humbled by the more than 200 co-sponsors of the Immuno Bill, not to mention the amount of coalition partners that signed onto the bill; the medical professionals; and the nonprofit orgs that came forward advocating that the Immuno Bill was a good idea.
Alex’s odyssey is far from over, but she is encouraged to know that there is whole generation of transplant patients who are either new transplant patients or soon-to-be transplant recipients who never have to know what it feels like to choose between keeping a kidney or eating.
“I’m so excited for the group of people who don’t have to deal with this,” says Alex. “They don’t have to fight this fight. There’s plenty of others fights that have to be fought, but this will not have to be one of them.”
Alexandra Harrison-Flaxman is Community Engagement Manager at CareDx.
1 Source: Honorthegift.org