How A Little Nonprofit Creates Healthcare Equity

When I met Ava Kaufman 14 years ago I knew she needed to make a big difference. She had made a deal with God. If she could come back and be her young daughter’s mother, she would work the rest of her life giving back for her heart transplant.?

I founded the OneLegacy Ambassador program and understood hell-bent recipients.?

My goal was to help people personally touched by donation feel purposeful. I created opportunities for them to be a source of contribution to the cause, but my favorite thing to do was empower and assist Ambassadors as they found the right outlet for their need to give back.?

I knew right away that Ava would not be content to simply “raise awareness” for the cause. She was a tenacious woman on a mission from God. She was a force of nature.?

So together we looked closely at what was missing from the donation and transplant system so we could figure out where she could be of greatest service. What emerged is Ava's Heart an award-winning nonprofit that has been successfully filling two horrific equity gaps in the healthcare system for the past 13 years.

Healthcare equity is a hot-button issue these days.?

Everyone knows we need it, but no one knows where to start. How do you unravel centuries of social inequity and systemic racism that are deeply embedded in every aspect of our healthcare system? Every day, in a million little ways, we fail to meet the needs of our poor, who, because of racism built into every other system, are too often our communities of color.?

Policy makers and politicians don’t know the right answers, because there are too many questions. Too many variables. And if an organization should take a stab at really improving equity in healthcare, where would it start?

Together, we found a place for Ava to start, actually two places.?

Ava’s Heart now plays an institutional role bringing equity to both the organ donation and transplant systems in the Los Angeles area in two tangible ways with an immediate positive impact on patients.?

1. Ava Heart makes transplantation accessible to poor people.?

People from all over the country come to Los Angeles for our cutting edge transplant centers.?

Cedars-Sinai, UCLA and Keck perform the most difficult transplants in America. Many states have no transplant centers so people in organ failure have to travel far from home. Nevada only performs kidneys so every patient in need of a heart, lung, liver or multiple organ transplant must go to their closest center, usually Los Angeles.?

This means that very sick people who have only one chance at life must first prove they have enough money to live near Cedars-Sinai, UCLA and Keck before and after the transplant, for weeks or months. Transplant centers require proof of housing to get on the list, but they don’t?help secure that housing.?

Ava spotted this inequity soon after her own transplant?

She would visit patients waiting for a heart at Cedars-Sinai, to give them hope, answer questions and hold their hands. She met patients from out of town whose caregivers were sleeping in cars or at a Motel 6 in Downey, unable to afford anything else. She saw the impact of this financial strain on their mental health and wellbeing. Then she thought about all the other people who were sent home to die because they couldn’t afford Los Angeles.?

So Ava got in the trenches and built a safety net.

Thirteen years later Ava has deep and collaborative relationships with transplant teams at Cedars-Sinai, UCLA and Keck. Transplant coordinators know Ava well, and send her patients regularly. “Ava’s Heart is a lifeline for patients who need to come to our center for a transplant,” says one coordinator. “Without Ava’s Heart, patients wouldn’t get on the list.” Ava has been awarded and recognized again and again for her work. Recently she received a top honor from the American Society of Transplant Surgeons.?

And yet the three world-renowned Los Angeles transplant centers that regularly send Ava their patients, and were proud to honor her at a national conference, have flatly refused to adequately fund Ava’s Heart. The CEO of one prestigious center said to Ava, “We aren’t in the hotel business.”?

1. Ava pays for funeral expenses of poor families who have said yes to organ donation.

Everyday people call Ava in crisis.?

The person they love most in the world just died. They got hit by a car, or fell, or had an aneurysm, some sort of head trauma. The hospital tried everything they could until there was nothing more that could be done. That’s when OneLegacy, the nonprofit Organ Procurement Organization in Los Angeles, helped the family through the donation process. And in their darkest moment a family saw beyond their own grief to leave a legacy of giving to someone desperately waiting for a second chance.?

The American organ donation system is highly regulated, as it should be. There is absolutely no payment for organs in any way.?

This means it is illegal for OneLegacy to help pay for funeral or cremation expenses. They are not allowed to offer this service, even though they have an extensive Family Care department staffed by social workers to help families through their grief journey for two years, for free. So like the transplant coordinators at Cedars-Sinai, UCLA and Keck, the Family Care team at OneLegacy directs their generous donor families, who are too often extremely poor, to Ava.?

Ava takes their calls every day. At 8am on a Saturday or 11pm on a Tuesday. She is there when their world has turned upside down and she listens to their pain. She thanks them for their gift, from the bottom of her heart. And she gives them the money they need for a proper burial or cremation.

Over the last three years OneLegacy has cut Ava’s funding again, and then again.?

This is just one of the unintended consequences I keep yelling about. Ava has to turn families away because the Organize Propaganda Machine has twisted funding partners like Ava’s Heart into a waste of OPO money.?

When I helped Ava think about how to be of greatest service I made an assumption. It seemed so obvious that the transplant centers and OPO, behemoth institutions with gads of money, would surely provide an annual contribution to Ava’s Heart to serve THEIR patients, and as an investment in healthcare equity.

I assumed wrong.?

So for 13 long years Ava has had to scrape and scramble. She has hosted Galas and social media giving campaigns. She has connected with Los Angeles’s wealthiest philanthropists and family foundations. She has been on television and made a TedTalk. She is a CNN Hero. She has asked and asked for help. She is exhausted, and I got her into this.?

Ava feels powerfully purposeful when she is able to pay for cremation or confirm there is a room available. I know she feels her profound contribution to others. I tell her regularly that she has made good on her deal with God. The evidence is clear in the dozens and dozens of thank you notes calling her an “Angel.”

But Ava’s Heart isn’t about helping a few people, it’s about equity. So it is time for elected officials to get involved and fund Ava’s Heart through policy change.

No more galas. No more waiting around for rich people to think transplant housing is sexy. No more trying to convince Foundations that housing is equity. No more begging LA’s lucrative transplant centers to take care of their own patients.?

It's time to build “The Los Angeles Donation and Transplant Equity Fund” (LA-DTEF) pooling resources from the city, country, and state, to invest in life-saving, hope-giving, hands-on healthcare equity in the heart of Los Angeles.?

So that’s one thing I am up to. Wanna help? Let’s chat.?