Dismantling the organ sharing network will bring catastrophic ramifications for patients 

In 2011, I was diagnosed with amyloidosis (HATTR Va122le), a hereditary blood condition that literally destroyed my heart. My entire family and loved ones were stunned. I was expected to die. 

Twelve years later, I can attest that I would not be alive today if it hadn’t been for my generous donor family, dedicated teams of medical professionals and the Organ Procurement and Transplantation Network (OPTN), the nonprofit-led core of the U.S. organ transplant system.

Under the federal government’s supervision, the OPTN manages everything from matching donated organs to patients like me, to creating national policies that decide how patients are prioritized on the organ waitlist.

As a grateful heart and liver transplant recipient and active UNOS ambassador, I’ve witnessed firsthand just how invaluable and irreplaceable that work is for the many patients it saved and the many still waiting. Aside from uniting our country’s transplant hospitals, organ matching laboratories, and other key groups to guide the transplant system’s future, the OPTN performs research and leverages data to provide critical educational resources for patients, donors, volunteers and medical professionals.

When Congress created the OPTN by passing the National Organ Transplant Act of 1984, they included a requirement that only nonprofit groups may lead it under contract with the Health Resources and Services Administration (HRSA). This was based off of government-sponsored research performed by a team of experienced surgeons, scientists, lawyers and ethicists. Their reasoning, which is even more valid today than it was in the 1980s, was that we cannot have a truly equitable transplant system if profits are allowed to be a motivating factor in the OPTN’s work. Sure enough, today the OPTN’s organ matching, policymaking and other responsibilities are guided by whether they would help the sickest, most medically urgent patients.

Recently, however, well-funded special interest groups have been leading a movement to vilify the non-profits running the OPTN, having spent hundreds of thousands of dollars lobbying for them to be dismantled. They have been very successful, with Congress passing a bill on July 28 to split apart the OPTN and let for-profit companies do what they couldn’t 40 years ago: take over the U.S. organ donation and transplant system.

It’s no secret that major parts of our country’s health care system are already driven by what creates the most profit. This has led to overpriced drugs, preferential treatment for wealthy and influential patients, and other inequities in which regular people suffer or even die because they just weren’t rich enough.

Getting a transplant is difficult and expensive as-is, requiring plenty of tests, reliable insurance, and a complex drug schedule for the rest of a patient’s life after the surgery. Allowing for-profit companies to also control organ matching and policymaking can make it even harder by lowering the affordability and accessibility of organ transplants for patients in need — especially those from minority and low-income communities.

The special interest groups and lobbyists targeting the OPTN claim that these legislative changes are necessary because the current transplant system has terrible performance. However, data suggests the polar opposite: The U.S. has been constantly setting new records for the number of transplants performed every year. 

Critics assert that this is nothing to celebrate, arguing that the rise in organ transplants is being driven by drug overdose deaths. This is not true, but even if it was, I fail to see how it would make a difference. Whether organ donors pass away from overdoses, trauma or simply old age, their generous gifts do not magically lead to transplants. Medical teams, laboratories, logistics experts and many others work around the clock to make that possible by testing, recovering, matching and transplanting those organs. The only types of deaths that affect this never-ending work are those that would make someone medically unsafe to become an organ donor. Suggesting otherwise insults the public’s intelligence and dishonors organ donors.

While there is always room for improvement and advancement throughout our current organ transplant system, completely upending it will only lead to further complication and even dangers for patients in need. Allowing shareholders and profit margins to guide the OPTN instead of medical experts and non-profit ideals will greatly affect the system’s ability to keep saving lives and setting annual transplant records. I’m not alone in these beliefs: Over 12,000 transplant recipients, donor families and others have signed a petition urging the government to protect patients by keeping for-profit companies out of the transplant system.

Corporate fearmongering has influenced Congress to divert away from medical expertise and now we must hold them accountable. With this legislation having passed, we must closely watch Congress and HRSA to see who they choose to run the OPTN and whether those groups are committed to the welfare of patients and the goodwill of donors, or just to whatever makes a buck.

Thank you.

Milton Mitchell is a living liver donor as well as a heart and liver transplant recipient. He is an advocate for public health and organ donation, serving as a UNOS Ambassador and an advocate for the Amyloidosis Support Group (ASG Foundation) and for the American Heart Association’s (AHA) grassroots network, You’re the Cure, helping to empower patients and educate legislators on AHA policy and medical research.