Organ Transformation

Written by Alison Beier

If you could have anything you want in the world, what would it be? For me, the answer is transformed organ donation in the United States.

112,437 people are currently waiting for life-saving transplants in the US; one person is added to that list every 9 minutes. With existing organ donation policies in place, 20 people on the transplant waiting list die every day.

I stand for life – for all individuals in need of life-saving organs – and I’m not alone. 95% of American adults support organ donation. Ninety-five – yet only 58% are registered organ donors. 37% of people in favor of organ donation are not registered donors. Why? What is preventing supporters from acting? What’s missing for them?

In the US, we presently have an opt-in organ donation policy run by each state, individually, usually through the Department of Motor Vehicles (DMV). You may or may not have noticed the option to opt-in; it was on your driver’s license application. With this “expressed consent” model of organ donation, we check the box, consenting to being an organ donor, or we don’t; we are a donor or we aren’t. There are other things at play but for the most part, it’s fairly straightforward.

Some countries, like Spain, have a “presumed consent” model. Each country has their own variations, with the general idea being that all citizens are considered potential donors unless they specifically choose to opt-out. The country of Israel, encourages organ donation by giving priority, on the list of people needing life-saving transplants, to those who have chosen to be organ donors themselves. In Iran, it is legal to buy a kidney. Donors receive monetary compensation from the government in addition to money from the recipient.

According to US News and World Report, “At least seven states [in the US] have looked at presumed consent bills between 2011 and 2015. All attempts have failed.” [5] In the US, the answer isn’t as simple as presumed or expressed consent – at least not in their existing forms. This isn’t solely about gaining numbers of donors, it’s about access – for those who support organ donation to be able do so, freely. So how do we do that?

We can start where people access organ donation. For most of us, it’s at the DMV. When applying for a driver’s license, we see the option to opt-in to organ donation but what goes into the process before that? Some non-profits are working with high schools to educate future drivers on organ donation. What about driving schools? Have we looked there? Can we partner with them, adding organ donation education to the curriculum, or informational handouts at their sites? What about the DMV manual and testing? If organ donation is an option on their application, having education around it is reasonable; and, including 2-3 questions on the written driving exam ensures the material is being digested.

What if, instead of one opt-in choice on a driver’s license application we have four? In that model, there would be three check-the-box choices and one clearly defined notation representing a fourth option – no objection. Options one and two are straightforward, opt-in or opt-out. Check box number three would be labeled unsure: with an added option to learn more about the organ donation process. The unsure selection, if chosen, defaults to opt-out and the person will not be an organ donor. The fourth option will be a bold, distinguished notation just below the first three choices, stating: “if no option is selected, applicant will be deemed no objection.” The note’s purpose is to define “non-action” as the fourth option. The no objection choice defaults to opt-in, making the individual an organ donor.

There are many reasons people might choose no objection; and, some of those will be listed below the notation. Explanations like these:

  • I would like to donate my organs but am not sure my organs will be usable
  • I haven’t talked to my family about organ donation
  • I don’t want to think about my mortality right now
  • I don’t particularly trust the system but am not opposed to being a donor
  • I fear doctors might not save my life if I choose to be an organ donor
  • I would like to be cremated at death and won’t need the organs anyway
  • I am not interested in doing anything to be a donor but I’m not against being one
  • I would like my family to ultimately make the decision

With all no objection organ donors, at time of death, the family – if available and able to make the decision – would be consulted. Family consent would be important, as it is today. It would be a culture shift for organ donation to be a conversation: much like preparations for retirement, life insurance, prepaid funeral expenses. Perhaps, this new model opens the door to those discussions.

There are many potential solutions and areas we can look to support people to make the best decisions for their selves and their families. What I have mentioned is just a start; these may work or may not. We might see legislation changes and manuals rewritten or find public backlash. What I ultimately strive for is collaboration around the idea, “if we can help people who are dying live then we should do it.”

If you have a say in the matter and want to contribute your opinion, experience, time, talents, funds, or expertise to the conversation, contact me at advocacy@alisonbeier.com.

Photo: Alison Beier and son, Evan, March 21, 2012. UCLA Mattel Children’s Hospital Pediatric Intensive Care Unit (PICU).  Hours after Alison successfully donated her left kidney to Evan.

References:

[1] US Department of Health and Human Services. (2020). Organ Donation Statistics. https://www.organdonor.gov/statistics-stories/statistics.html

[2] US Department of Health and Human Services. (2019). Organ Donation Statistics. https://www.organdonor.gov/statistics-stories/statistics.html

[3] Zink, S., Zeehandelaar, R., & Wertlieb, S. (2005). Presumed vs Expressed Consent in the US and Internationally. https://journalofethics.ama-assn.org/article/presumed-vs-expressed-consent-us-and-internationally/2005-09

[4] Singh, S. (2017). Organ Donation Programmes Across The World. https://sites.ndtv.com/moretogive/organ-donation-what-other-countries-are-doing-1297/

[5] Leins, C. (2016). Should the Government Decide if You’re an Organ Donor. https://www.usnews.com/news/articles/2016-02-12/presumed-consent-and-americas-organ-donor-shortage

©ALISON BEIER 2006-2020