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This opinion piece was written by Chip Hunter. Hunter is a young Kentuckian who received a life-saving donor kidney back in 2022.
For five years, I spent five hours a day, five days a week on dialysis before I received the life-changing phone call that a kidney was available. On the morning of February 26, 2022, my wife and I rushed to the hospital for a kidney transplant— a surgery that I’m grateful to have received and one that significantly improved my quality of life.
Unfortunately, hundreds of thousands of patients across the country are holding out hope that, they too, will receive the phone call that an organ is available to offer them a second chance at life. I’m incredibly blessed that my donor joined the Kentucky Organ Donor Registry, and we need many more people to answer that call to truly benefit the more than 100,000 individuals in need of an organ transplant.
Thankfully, Congress is working on meaningful legislation that would improve access to organ transplants and increase accountability. Last year, Congress passed legislation giving the Health Resources and Services Administration (HRSA) the flexibility to overhaul the nation’s organ donation and transplant system, providing new ways to help the long waitlist of patients who are patiently awaiting an organ.
As an organ donor recipient, I’ve experienced firsthand how the organ donation and transplant system needs modernization and reform. While this legislation is a step in the right direction, it would also inadvertently create more barriers to care.
Under this legislation, HRSA can select multiple contractors to run the national organ donation and transplant system and remove the cap on appropriated monies that can be awarded to contractors running the network. This means that the executive branch would face three major challenges in implementing Congress’ changes.
The first is restoring public trust in the system and eliminating any perceived conflicts of interest by ensuring that no contractor is required to have its corporate board also function as the board of the Organ Procurement and Transplantation Network (OPTN). The OPTN manages an incredibly complex network that has seen more and more transplants every year and its board should be singularly focused on this important work, keeping what’s best for patients, living donors and donor families front and center.
Second, the government can’t empower patients through this contract, which is critical for both donors and recipients. Because the system lacks transparency, it is difficult to receive status on the waitlist and when organs are a match for you. Patients need personalized digital tools to improve their understanding of the transplant journey, making them part of the informed decision-making process about whether an organ is appropriate for them.
The bottom line is that transparency, even in the event of bad news, is key when it comes to reforming the organ donation and transplant system. Any changes to the system should empower patients to know more about the system, relieving anxiety and addressing questions relating to insurance, waitlist status, organ acceptable standards and post-surgery care.
Finally, in the face of massive federal deficits, Congress must consider the budget and ensure funding is available to implement system changes. Government and contracts can’t fully modernize the system without more funding. Congress has not yet increased funding for the new OPTN, and time is running out to ensure HRSA has the resources to succeed.
My dialysis journey began when I diagnosed with polycystic kidney disease, a condition which cysts grow all over the kidneys and kill the filters, and soon after I developed kidney failure. My kidneys were functioning at only 10 percent— a diagnosis that you never expect to receive in your 30s.
For five years, I waited for that phone call and for a kidney that would start my second chance at life, allowing me and my wife to enjoy the mundane everyday activities to traveling and going out to dinner.
There are many patients who have a similar story – and there are those who may never receive the lifesaving news that an organ is available. The government has much more work to do to ensure that this is not the case for the nearly 1,200 Kentuckians who need a transplant— and as advocates, we need to do our part to encourage more Americans to become organ donors.
We’re watching what happens in Washington and we hope the government can deliver on its many promises to improve the system, so it puts organ donors, recipients, and their families first.
