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Saving lives at their own expense: Loudoun native starts charity for living organ donors

Sigrid Fry-Revere of Lovettsville at a TEDMED Talk on organ transplant policy. Courtesy photo/TED Talks
Sigrid Fry-Revere of Lovettsville wanted to donate her organs.

It's not a decision a person makes every day, especially when they decide to donate while still living.

But there are plenty out there who've made that choice. In 2013, almost 6,000 people were living donors out of 28,954 people who chose to give their organs, whether alive or not.

What the vast number of U.S. citizens might not know is the invisible issues living donors face, namely financially.

Fry and co-founder Michael Mittelman of Philadelphia decided to do something about it with a charity they set up in December: The Living Organ Donor Fund.

“Clearly [living] donors are a kind of patient as well who have been ignored. They're treated like resources and that's not right. They're heroes,”

When Fry's son was born 25 years ago, she and her husband were told he had kidney cancer.

Fry spent years “on pins and needles” with the constant expectation that she would be called to donate her own kidney for her child.

When the danger passed, Fry wanted to help someone with her organs while she still could.

After trying with one friend, whose illness was too far advanced to undergo a procedure, Fry found another friend who needed a kidney.

Fry owns a farm in Lovettsville. Her organ donor coordinator said she couldn't do heavy lifting in the two months after having abdominal surgery.

Her recipient offered to pay for a part-time hand to help while she recovered. When her coordinator asked her the plan, she told him the truth, not seeing an issue.

But the answer was a denial of the entire coordination. They told her it was illegal.

“Instead of giving me more time to find an alternative [to my recipient helping financially], they just denied it, which surprised a lot of people … I realized 'my gosh how many people are suffering like this?'”

Through research, she realized that a lot of people bend the rules and pay under the table to help their donors with the burden.

The law that makes it illegal to pay someone for their organs is the National Organ Transplant Act from 1984 which created a network for organ sharing.

Fry said already one-third of donations come from living donors.

She also said that's the same fraction for how many want to donate and can't.

Considerable obstacles keep potential living donors from making the choice:

-Out of pocket expenses, including cost of transportation and living.

-Time off work for recovery, which cuts down on pay.

-Physical discomfort.

Federal laws furthering the cause of organ donations and charitable organizations focus by-and-large on transplant recipients.

Fry began lobbying for language changes in the laws on organ donation to make it possible for people and organizations to help with the practical financial burdens for donors. But she was disappointed in the response from decision-makers in D.C.

Fry saw that without much incentive for lawmakers to change the laws, it was hard to get them to back an idea that sits so deeply in the legal gray area.

So she wrote a book, which led her to give a TED Talk, an event sponsored by TED, a nonprofit with the goal of spreading people's ideas to a wider audience.

Little did she know, Mittelman was in the audience.

A three-time organ transplant recipient, Mittelman received two kidneys from deceased donors and finally a third from a living donor. He'd developed a passion for the subject through his experience.

“There's got to be something we can do about this,” he thought at the time of the shortage of living donors due to hurdles they face. “There's got to be a way we can help right now, not just through policy [change] ... We've helped a number of donors out there with very limited funds.”

It's not paying people for their organs or trafficking organs, she said. It's allowing people who've made an independent decision to carry out their own mission.

Organs from living donors last longer than those from deceased donors, and it's more cost effective from a federal standpoint, according to both Fry and Mittelman.

It's been rough for the young charity. While receiving pro bono work from attorneys working to help them navigate the law and continue lobbying, fundraising has been a large hurdle. You can't help people with their expenses if you don't have enough money yourself.

So they run campaigns. In the beginning, they managed to raise $17,000, which allowed them to aid in 81 transplants since the group began its work.

They're also working to create a network of living organ donors who can help each other with simple tasks, like transport to and from the hospital.

They also want to develop more partnerships. Airlines and car shares are prime. The hope is to have groups offer their services for living donors in return for the positive public exposure.

But they're also searching for grants and forming partnerships with academic medical centers and notable transplant doctors and pathologists who can inform the work they do with papers and research.

Despite the charity's own struggles, it carries on. It already has 10 new donors its looking to help through its new financial campaign.

“There's no reason that anyone should not be able to be a living organ donor [because] they have to go into debt,” Mittelman said. “What an amazing thing they're going to do.”

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