These Women are Working to Save Thousands of Lives through Organ Donation Reform
Ninety percent of Americans support organ donation. It’s something we agree on across the country. But… thousands of organs go unrecovered from potential donors every year, while more than 100,000 Americans wait for life saving transplants.
Smart Girls caught up with four amazing women working to save lives and change what’s possible.
1. Mandy Teefey, executive producer and the mother of kidney transplant patient Selena Gomez
Twenty-three Americans die every day waiting for a kidney transplant. Another ten die waiting for a heart, liver, lung, or pancreas. Patients in organ failure are some of our most vulnerable neighbors, and disproportionately they are people of color.
My daughter Selena was among them. Diagnosed with Lupus in 2014, Selena needed a kidney transplant. Because she is Latina, the odds were stacked against her. Despite carrying an outsized disease burden, Latinx Americans are much less likely to receive kidney transplants.
Most infuriating: this issue is fixable.
The status quo is broken, and for patients living with organ failure it’s a coin toss whether they’ll ever get a call for a lifesaving transplant. The problem, however, is not that people are unwilling to donate precious organs at the end of their life. As I’ve learned, it’s that the government contractors charged with managing the donation process — called organ procurement organization (OPOs) — are failing.
While most people have never heard of OPOs, they are a $3 billion industry of government monopoly contractors whose performance determines whether people live or die. Until recently, they have operated without any meaningful oversight or accountability. As one CEO told Congress recently: “OPOs are given blank checks and participation trophies while patients are given death sentences.”
Finally, that is all changing. The House Committee on Oversight and Reform held a bipartisan hearing, the Senate Finance Committee is in the midst of investigating improprieties by the organ donation middlemen, and the Biden-Harris Administration finalized major reforms projected to save more than 7,000 additional lives through organ donation every year, disproportionately for patients of color. Congresswomen Cori Bush (MO), Katie Porter (CA), and Ayanna Pressley (MA) have been helping lead the charge in calling for reforms.
Here’s my ask of government leaders: go faster.
Organ donation reform is an urgent equity issue, and COVID-19 is compounding the problem. The virus ravages kidneys, hearts and lungs, creating more patients in need of organ transplants and further exacerbating pre-existing racial disparities. The system needs to work now.
When it’s your daughter’s life on the line, learning that OPOs “engage in racial profiling” hits much closer to home. At the recent Congressional hearing, Chairman Raja Krishnamoorthi (IL) highlighted that OPOs are much less likely to even show up to a case if the potential donor is a person of color, which means patients of color are much less likely to have lifesaving organs available for them; with Ranking Member Michael Cloud — from my home state of Texas — underscoring the need for OPOs to better serve minority communities.
But rather than change their behaviors to address these unacceptable disparities, some OPOs — — including the OPO in Los Angeles, where I live now — have taken the offensive tact of blaming minorities for the abysmal service OPOs provide them.
This hasn’t just been empty posturing; these OPOs have hired expensive lobbyists to petition the government to lower expectations for OPOs for the service they provide to communities of color, which would allow them to continue to ignore Black and brown communities while pouring their resources into their favored, white enclaves.
Selena was lucky enough to have a friend willing to donate a kidney to her, but that’s not how the story goes for most people who look like her. If our family hadn’t climbed out of poverty, she likely would have died — just like 27,345 other patients of color did in 2020; just like her aunts, who also had Lupus; and just like 33 more Americans will tomorrow.
As a matter of public health, racial equity, and COVID-19 response, the federal government needs to hold its contractors accountable now. Patients cannot hold on much longer.
2. Congresswoman Cori Bush from Missouri
Smart Girls: As a former transplant nurse, what have you learned about how the system can fail patients — and patients of color in particular?
Congresswoman Cori Bush: I have personally cared for and counseled patients suffering from chronic and severe illnesses. Black and brown patients are more likely to suffer from illnesses like kidney failure and less likely to get an organ transplant — or even a visit from an Organ Procurement Organization (OPO). Many of my patients waited years on organ donation lists. They turned their lives upside down to make dialysis appointments, to be there three days a week, altering their diets, and doing everything they could to survive. Many developed anxiety, depression, and were traumatized because the system ultimately failed them. It doesn’t have to be this way. We can, and we must, hold OPOs to the highest standards of performance and accountability.
SG: What can Congress do to make sure every part of the country is served by a high-performing OPO like your constituents are in St. Louis?
My time treating patients as a transplant nurse has stayed with me, and I cannot overstate the urgency of this issue. Congress must do everything in its power to fix this broken system by implementing and enforcing performance standards set forth by CMS. We need metrics for OPO performance based on donation and transplantation rates. We need more frequent recertification reviews to really understand how effective OPOs are at saving lives. By drastically increasing the number of potential organ donors assessed by OPOs, we stand to save tens of thousands of lives per year.
In St. Louis, nearly 1,100 people are currently waiting for a lifesaving organ transplant that may never come. Each OPO, which coordinates getting organs for transplant, is solely responsible in the region it covers. If it fails at securing organs, no one else in the entire country can provide this service. We have to ensure OPOs across the country deliver the highest levels of service for transplant patients and their loved ones — no matter their race, income level, or zip code.
SG: What advice do you each have for young activists who feel daunted by tackling problems that can feel so large?
CB: Once you start the work, my advice is to keep going. This work is not easy. As activists, we don’t do this work because we want to — we do this work because we have to. We do this work because our lives depend on it. And there will be times when we’ll be tired or scared or overwhelmed, but we have to keep going. I consider myself a politivist — an activist and a politician. So know that I’m standing with you.
This Congresswoman LOVES you and has your back — so keep going.
3. Congresswoman Katie Porter from California
Smart Girls: Tonya Ingram, a 29 year old poet in Los Angeles who is waiting for a kidney transplant, shared her story before Congress. How has hearing from people like Tonya helped you realize what needs to be fixed?
Congresswoman Katie Porter: I’ve been fortunate to work directly with Tonya, who has been a strong advocate for much-needed reforms to the organ procurement industry. She’s personally gone to battle here in southern California to help herself and others get the organ donations they need — so she knows firsthand what’s going on and what needs to be done to center patients.
The Department of Health and Human Services estimates that organ procurement organizations fail to recover thousands of organs each year. Each of these lost organs represent a real patient who needs a transplant to stay alive. Tonya and her activism help give voice to these patients who are too often falling through the cracks. They make it clear that this isn’t just numbers we’re talking about, but people’s lives. This is so important because ultimately, Congress needs to hear from people with backgrounds and perspectives that are different than our own to craft policies that serve every American, not just a select few.
SG: You brought out your famous whiteboard and showed how OPOs too often misuse resources — even taking jets on vacation that should be used for recovering organs. How can we be sure that all the money that is supposed to go towards honoring organ donation wishes is used to help patients?
KP: For years, organ procurement organizations had virtually no accountability. We basically let a bunch of regional monopolies police themselves — which led to rampant fraud and abuse. Back in 2019, I wrote to the Department of Health and Human Services and urged them to establish clear accountability metrics. After two years of pressuring government officials for these new measures, I’m excited to say that they were finalized. But that doesn’t mean I’m now going to take a backseat on this issue. There’s often a discrepancy between policies as written and what’s happening on the ground. Implementation of policies is often delayed for far too long because they get caught up in red tape. We need to continue having robust oversight of OPOs to verify they’re putting patients first — and not jetting off on vacation.
SG: What advice do you each have for young activists who feel daunted by tackling problems that can feel so large?
KP: As a former professor, I know how incredibly hardworking and passionate our young people are. Their energy and activism make our communities stronger. That’s why it’s critical that young people are engaged in the political process — not just on issues like student loans and the climate crisis, but across the board, on everything from housing to health care to tax policy. These are the issues that are going to shape the future of the country that our young people will be leading.
I turned away from politics for a long time because I didn’t see myself or my experiences reflected in it. But over the years, I learned that we can’t just throw our hands up and give up — we have to demand change and work hard to see it realized. That starts with making your voice heard. You can also get involved by voting, having conversations in your community, working on campaigns you’re passionate about, and picking up the phone to call your representatives.
4. Congresswoman Ayanna Pressley from Massachusetts
Smart Girls: You’ve said, “what gets measured gets done.” How can we make sure that the nation’s organ donation contractors are serving everyone, from every background?
Congresswoman Ayanna Pressley: It is critical that OPOs are regularly engaged in robust data collection and reporting to ensure they are meeting the needs of the communities they serve. The data on donations and transplantations must be transparent and easily accessible, so that we can finally have the necessary and long overdue accountability for low-performing contractors.
In order to address the racial disparities in our country’s organ donation system, we must be intentional in embedding racial equity into the work of OPOs.
SG:You have done incredible work advocating for policies to address racial discrimination in healthcare broadly, and in organ donation specifically. What possibilities do you see for the impact of top data scientists at MIT’s Healthy ML Lab and Wilson Lab working with reform-minded OPOs to understand how racial bias might affect donor families?
AP: This work is so important. The majority of my constituents are people of color. We must confront the racial injustices in our organ transplantation system as a matter of life and death, because it quite literally is. The American Journal of Public Health published a study finding “the odds that a family of a white patient was approached for donation were nearly twice those for a family of an African American.” We have to understand why Black people are routinely ignored when it comes to donation.
SG: What advice do you each have for young activists who feel daunted by tackling problems that can feel so large?
AP: Young people have been at the forefront of every fight for racial, economic and health care justice for generations — from the Civil Rights Movement, to the movement for Black Lives and racial justice that we are seeing play out today. Their leadership, lived-experiences, critical eye and unique expertise are needed today more than ever.
So I would just remind them that the fight for a more just and equitable world is a long one, and encourage them to continue organizing, mobilizing and building a sustainable movement for change. I am so proud to be their partner in this work.
