Q&A: Oversight of U.S. Organ Donation

Q&A: Oversight of U.S. Organ Donation

With U.S. Sen. Chuck Grassley

Q: How's your bipartisan law working to improve the nation's organ donation system?

A: Nearly three years ago, Congress enacted a landmark law I wrote with Sen. Ron Wyden of Oregon that overhauled the nation's organ transplant system to better serve patients and donors. My bipartisan legislation was designed to boost competition, improve patient outcomes, maximize access to lifesaving organs, safeguard donors, protect taxpayer dollars and end an inefficient 40-year monopoly of the Organ Procurement and Transplantation Network. Leading up to the law's enactment, I conducted nearly two decades of congressional oversight and scrutinized the system with a fine-toothed comb, conducting hearings, examining data and leading the charge for reform with grassroots-led patient advocacy groups. My oversight found shortcomings that led to organs going to waste, patient lives cut short, organs allocated out of sequence and dollars being wasted. What's more, the broken system was even worse for minorities and rural Americans. Our legislation required a review by the Government Accountability Office (GAO) to assess implementation of the law. The GAO report released in January found the Department of Health and Human Services hasn't yet developed detailed plans to fix weaknesses in the system, such as inequitable organ allocation and insufficient oversight of contractors. I'm glad President Trump signed into law another bill I led called the OPTN Fee Collection Authority Act to ensure resources for the Health Resources and Services Administration (HRSA), the federal agency that oversees the U.S. organ transplant system, to effectively implement reforms called for in my 2023 law.

I'll keep pushing to fix weaknesses in the nation's organ transplant system. This is an issue that hits close to home for tens of thousands of families across the country, including more than 600 Iowans who are on the transplant waiting list. Iowa has transplant surgical centers in Des Moines and Iowa City. Teams of professionals who work in this sector of our health care delivery system understand the tremendous anguish of donor families and the profound relief of recipient families whose loved one's life is saved when the transplant system works as intended. That system includes the safe, timely delivery of an organ. In July, I toured a family-owned business in Sheldon that operates 24/7 organ transport flight services. I was glad to hear my 2023 law is helping break down silos that created barriers to care and is helping to improve more efficient delivery of organ donations to patients on the transplant waiting list.

Q: What prompted your recent oversight on organ transplants for pediatric patients?

A: Of the 100,000 individuals who are on the national wait list for organ transplants, approximately 2,000 of them are infants through age 17 according to the Health Resources and Services Administration. Medical experts say pediatric patients ages 1 to 5 years old have a higher likelihood of waitlist mortality due to challenges related to organ allocation and transplantation for children on the waiting list. Building on my years of oversight and legislative efforts to improve the Organ Procurement and Transplantation Network, I'm seeking information to gauge how the system is working on behalf of the nation's youngest patients. Their childhoods are uprooted while they're on the waitlist, often hospitalized, while their parents wait on pins and needles praying their beloved child will be matched in time with a lifesaving organ. Medical conditions, such as congenital heart disease, liver disease, kidney failure and cystic fibrosis may be life-threatening without a transplant. Kids awaiting transplants often need an organ to match their size, which increases the unique challenges for these patients. These families ride an emotional roller coaster every day while they navigate the complex medical care their child needs to survive. In July, I requested the Government Accountability Office to investigate the nation's system managing organ transplants for kids. Specifically, I want federal auditors to look at how long pediatric patients are on the organ transplant waitlist and how it varies by organ; the mortality rate of pediatric patients; what actions are being taken to improve and increase the supply of organs for children; and oversight of pediatric transplant outcomes. My oversight will continue to strengthen public trust in our nation's transplant system. It's a matter of life and death. This work complements my Accelerating Kids' Access to Care Act, which recently became law, that will improve health care access for children with complex medical conditions by removing red tape.

• Print
• Email
• Like
• Tweet