Organ donors are hard to come by. In the U.S., 18 people die waiting for organ donations every day. Part of the reason is that only 40% of Americans are registered as organ donors, but it’s also because of the byzantine organ donation system. Greg Segal has had a lot of time to think about the failings of this system. For five years, his father waited to receive an organ transplant, which he ultimately received. His father survived the waiting period, but he believed the process shouldn’t have taken so long.
“I was obviously passionate while he was sick, but passionate with blinders on. I was focused on taking care of him,” says Segal.
Last year, Segal, a former venture capitalist, teamed up with Jenna Arnold to create ORGANIZE, an organization aiming to dramatically increase the number of organ donors in the U.S. and create the first central organ donation registry.
“There was a moment of real epiphany when we looked at the variables and said ‘We can make a real change and solve this problem in our lifetime,” says Arnold, who previously founded the firm Press Play Productions. Segal and Arnold believe that a streamlined organ donation system combined with effective marketing could eliminate the organ shortage entirely. “We want to put ourselves out of business in five years,” explains Arnold.
Segal adds: “Organ donation to me is a business problem with a public health outcome. I know how to cure someone who needs a heart transplant: get them a heart.”
ORGANIZE’s goal of fixing the organ donation crisis requires a methodical state by state approach. There are 52 organ donation registries throughout the country, and they don’t work with each other. When the registry system was set up in the 1960s, people didn’t move from state to state as much as they do now. It was logical at the time to house registration at the DMV, since it’s the only government building that most Americans pass through at one time or another.
But now? If you have a New Jersey driver’s license and you die in California, someone has to figure out that you’re from New Jersey, coordinate with the local registry, and ensure that they have your real name at the ready (Jenna’s real name is Jennifer, for example). That’s why ORGANIZE’s cloud-based central organ donation registry–currently in the works–is such a big deal.
Every state has an online organ donation registry system, but there are more than a dozen steps to actually register, making it likely that many people just give up before completing the process. So in addition to its online registry, ORGANIZE has built a mobile app that makes it simple to sign up as a donor. This week, the state of Utah announced that it will accept registrations from ORGANIZE’s mobile app into its organ donor registry. Organize is also working with Michigan on registrations. “The rest of the big states are teed up to go,” says Arnold.
Perhaps ORGANIZE’s biggest challenge will be marketing, which will require different tactics in all 50 states. “150 million Americans aren’t registered. If we can make a huge dent in the next couple years, and then focus on the four million people who turn 18 every year, we should be able to cover that substantial gap,” says Arnold.
Already, ORGANIZE has a campaign worked out for Utah’s Ogden Valley (Organize is making its Utah mobile app announcement at Summit’s Powder Mountain headquarters, which is in the valley). Arnold noticed that many locals referred to their home as “hell”–which turned out to be an acronym for Huntsville, Eden, Liberty (HEL), all towns in the valley. “The marketing campaign will be like, “Why the hell not?” explains Arnold.
ORGANIZE wants to gather as many registrations as possible. But here’s the thing: intent is just as important as consent. If your next of kin thinks you’d want to be an organ donor, you can be an organ donor, even without having formally registered. Arnold is hoping that ORGANIZE’s social media campaigns can leave traces of evidence that people are interested in organ donation. “If you use hashtags, if you come to our events…if there’s a way we can scrape your social media and public presence, most next of kin are just looking for a sign from their loved ones,” she says.
No matter how successful ORGANIZE is, organ donation may one day be a lesser problem than it is today. “20 years from now, when you can 3-D print an organ, that’s a reason for us not to exist,” says Arnold. But, she adds: “On the short-term horizon, we can save a ton of lives quickly.”