Personal News: I am writing as a mother and living organ donor.
Twenty years ago this month, our youngest son Peter received a life-saving liver transplant at UPMC Children’s Hospital of Pittsburgh @ChildrensPgh
With Peter’s permission, I’m sharing a photo taken with his older brother a few weeks before his 2006 transplant, when he was in liver failure.
Four years later, he won gold at the U.S. Transplant Games in Madison, Wisconsin. And here he is today—healthy, strong, and thriving.
What I didn’t fully appreciate in 2006 was that Peter and I were part of pioneering research aimed at reducing the risk of organ rejection in pediatric patients.
Even though I donated a segment of my liver to Peter—and as mother and son we are genetically similar—the new testing protocol still helped lower his chances of rejection.
Peter and I participated in a research project that developed a simple blood test called Pleximmune @plexision
It predicts the likelihood of rejection in pediatric patients by analyzing the unique immune chemistry of both the child and the donor.
The test also helps doctors determine exactly how much immunosuppression a child needs to keep rejection at bay.
Our family knows firsthand how valuable this early warning system truly is.
When Peter hit his growth spurt in his early teens, like so many pediatric transplant recipients, he needed increased immunosuppression.
The Pleximmune test predicted this need months in advance, giving his doctors time to adjust his care before problems arose.
The threat of rejection is a cloud that hangs over every transplant patient and family.
This test is making a real difference. It helps prevent rejection and can save tens of thousands of dollars for families and insurance companies.
This is where common sense matters.
In early July, the research team is preparing an appeal to Medicare @MedicareGov to price the Pleximmune test "fairly and consistently" with similar diagnostic tests.
Right now, only a small percentage of the cost of the test for pediatric patients is being reimbursed.
As the team told me, “Fair pricing is the lifeblood of a company’s ability to provide patients with more informed care and continued innovation.”
Today, Pleximmune has been used to test roughly 10% of children under age 21 who have received liver or intestine transplants in the U.S.
If you want to support this important work and help more pediatric patients and their families benefit...
Send a note to your senator, let them know to escalate the matter with Medicare so the appeal gets a fair hearing.
Catherine
Chris Nikic, the first person with Down syndrome to complete an Ironman, completes Ironman 70.3 Massachusetts.
Shortly before the race, Nikic announced that he needed a guide to run alongside him for the race.
That's when Dr. Tommy Martin decided to step up.
"I learned more in this race than almost any other I have competed in, and none of it was about race tactics or how to PR. It was about life, perspective, determination, and grit. I owe all of that to Chris," Martin said.
"I hope every finish line Chris crosses serves as a reminder to the world: your diagnosis, your situation, your circumstances do not define your potential!"
Congrats, Chris!
Video: dr.tommymartin / ig.
I’m actually kind of enjoying this era where we just find out everyone who lectured us about how terrible we all were for years turn out to be completely full of shit