ERGOT Faculty, Macey Henderson, JD PhD, was elected to a 3-year term on the Organ Procurement and Transplantation Network (OPTN) Board of Directors. Henderson will serve as a Patient and Donors Affairs Representative. The Board of Directors is the governing body that oversees and participates in developing policies for operating the OPTN that provide equitable organ allocation to patients registered on the national waiting list, ensure quality standards for membership, and establish data submission requirements. Currently, the same board that serves the OPTN also serves the United Network for Organ Sharing (UNOS), the organization that holds the contract to operate the OPTN.
We’re honored that these donors and families have made the decision to save lives through organ donation under the HOPE in Action study. With hard work and collaboration between Johns Hopkins, our transplant center partners, and organ procurement organizations across the country, in 2016 we were able to help 20 patients with HIV live fuller, longer, healthier lives after receiving HOPE transplants.
Our research indicates that thousands of lives could be saved by HOPE transplants in the next decade – both those with and without HIV infection who are waiting on the same transplant lists in need of a life-saving transplant. That is a powerful and lasting legacy, and we hope it provides these special donor families some small measure of comfort as they mourn the loss of loved ones.
Every day, when we walk into Johns Hopkins to serve patients and advance the field of transplantation, we are inspired to do our best by the generous patients, donors and families who make our research possible.
With continued hard work by our whole team at Hopkins and beyond, we hope to honor these amazing donors, donor families, and HOPE transplant recipients. We look forward to saving many more lives in 2017 and beyond through safe, legal HIV-HIV organ donation and transplantation under the HOPE Act.
ERGOT’s Douglas Mogul, MD MPH led a team to create the new Facebook application: Liver Space. Mogul wanted to create a community that connected pediatric liver disease patients and their families and provided them with useful information.
“It’s designed to strengthen online communities, serving as a bridge to health care providers and a portal for conducting research,” Mogul told Sarah Richards at Johns Hopkins.
Mogul is currently in talks about creating a similar site for patients with kidney disease.
Drs. Niraj Desai and Christine Durand talk with CBS Baltimore about transplanting patients with hepatitis C-infected kidneys. The Johns Hopkins trial includes 10 patients from Baltimore, 5 of which have already been transplanted.
This is now a viable option now the hepatitis C is curable. This has the potential to shrink the transplant waitlist which is currently over 200,000 people in the US, 82-percent of whom need kidneys.
“If we had enough organs, we wouldn’t do this,” says Dr. Desai.