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Advocacy in a Time of Anger

In donation and transplantation, we’re out in the community with a very specific goal: to save and heal more lives by helping folks say YES.

Right now, there are many people who are out in the community for other purposes. For some, they are driven by hate.

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Silhouettes of people at political protest

This is what I’m thinking about right now: how can advocates for donation and transplantation, and #DonateLife, walk out into the world and be a part of the anti-narrative to a time filled with mistrust and hatred? How can we, as community-based volunteers and organizations, be unifiers, not dividers?

Can we embody the values of our mission—to save and heal lives, to comfort folks who are suffering, to honor altruism—at a time when so much seems lost or muddled or angry or indifferent?

What I can tell you is this: if you can walk out into an event this weekend, and show folks who may not expect kindness, kindness, show folks who may not expect compassion, compassion, and if you can listen just a little more than you talk, you’ll make a difference.

Try: “You’re right, this is a crazy time. What I can tell you is, a simple act of humanity—deciding to save lives as a donor—is one more way we can show others that we care, even in tough times.”

Try: “Good folks can disagree on politics. Many folks find they can agree about values. For me, I know that registering to be a donor represents my values, like compassion, and helping people in need. We get to vote for a candidate, and we might all disagree—but we can save lives, right here and how, with one YES.”

Try: “I don’t agree with everyone about everything, and that’s okay. More than 120 million Americans do agree about this: that saving lives through donation and transplantation is a good thing, a caring thing, and they all registered that decision.”

Try: “If you listen to the media, you would think Americans aren’t at all on the same page. But what I know from volunteering with these great folks is that more than 120 million Americans believe that donation is important and transplantation saves lives. They all registered. That tells me that our country still holds important values. That Americans are, fundamentally, caring and good. It gives me hope.”

Do you have more ideas for how to engage people in conversations, at a time when conversations in America seem a little more fraught? Do you have an experience you can share to help your fellow advocate? Comment below—we would all love to learn from you. As always, thank you for being a part of this small-and-yet-mighty little corner of the internet. 🙂

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Zion’s Transplant and Advocacy: What’s the Power of Two Small Hands?

By Macey L. Henderson and Brianna L. Doby

Zion Harvey, the first pediatric double hand transplant recipient, left the hospital this week after his landmark 11-hour operation in July 2015. With his departure from the hospital, many more patients may take his place; more than 200 inquiries about children with similar extremity problems have been received by the Children’s Hospital of Philadelphia (CHOP). This is not surprising, considering the worldwide media attention to the story of Zion’s new hands. In fact, NBC Nightly News anchorman Lester Holt reported that Zion’s story was one of the network’s most popular and widely shared stories – ever – on social media outlets.

While not all children who could benefit from a vascularized composite allograft (VCA) transplant will be medically eligible, at least one other pediatric bilateral hand transplant candidate has been screened by the CHOP hand transplant program. Zion’s pioneering transplant makes him a powerful new ambassador for the program spearheaded by Dr. Scott Levin, now the world leader in this innovative regenerative transplant surgery.

We know that Zion’s maturity was in part the reason he was selected to be the first pediatric patient to undergo this groundbreaking medical procedure, but it ultimately became his courageous attitude in the face of adversity that captivated the hearts and minds of Americans. To add a layer of importance to Zion’s ambassadorship, we know that the participation of African Americans in clinical trials has been low historically, in part due to high levels of medical mistrust. Zion’s family’s story (as well as his donor family’s story, should they choose to share) shows collaboration and consent with medical professionals for a breakthrough procedure, and how that collaboration and consent created a positive outcome.

As Zion left the hospital on Wednesday, NBC News reported his desire to write a letter to his donor family in gratitude. The donation and transplant community have policies and best practices in place for this type of communication in order to ensure confidentiality. The donor family will be in control of when and how they choose to receive communication from Zion and his family. This protects the donor family’s grief process, and allows them to regulate if and when they are ready to seek connection with recipient(s).

In most, if not all, cases, the 58 federally designated organ procurement organizations in the U.S. require that the transplant recipient’s letter be screened before forwarding it on to the donor family. , In the final step of this process, trained professionals provide education to the recipient, informing them that they may or may not hear back from the family. Again, it’s a matter of choice and consent for the families involved, two important principles that mediate donation and transplantation.

That said, moving forward in the new era of healthcare communications involving social media outlets, will these practices and policies change? Will social media and other forms of digital communication make it harder to protect the confidentiality of donor families? These are worthwhile questions in an era where donation and transplantation can be live-tweeted (see the moving tweets of Stefan Wilson about his brother Justin, and the feat of live-tweeted transplant at Baylor). Providing safe communication between families who “opt-in” to disclosing their identities and experiences could pose new challenges for organ procurement organizations now and in the future. 

Not only does Zion want to write a letter, he also wants to mentor other children who may need a transplant in the future. This is not the first time we have been witness to mature pediatric transplant recipients starting their new lives as advocates for donation and transplantation. In February, to spread awareness about National Donor Day with the #GotHeart Campaign, we were honored to work with a pediatric liver transplant recipient and his mother who are advocates with Indiana Donor Network. Children who experience life-saving and life-changing events via donation and transplantation often provide extraordinarily powerful narratives to our community, and find that they can both inspire and educate the public with their words.

Zion’s smile, sincerity, and courage has moved a nation to click, tweet, and share. Can he inspire Americans to make a life-saving decision, and register as donors as well? Time will tell us more about the power of those special hands.

Published on LinkedIn 28 August 2015

 

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Say What?! Tissue Donation in the News

It’s been an interesting few days for people who follow media stories about tissue donation!

My inbox has been busy, too. I got this email from a donor mother late Saturday night, joining about a dozen others:

Brianna, I don’t know what to say when people tell me I murdered my baby he was already gone. I think my family doesn’t understand what I did becaues (sic) of the news story that was on the tv. Do you know wwhat (sic) to say to them.

Heartbreaking! I hate to see a special family like this hurting. And yes, I am here to help.
 
Since the Planned Parenthood/fetal tissue for research story hasn’t gone away yet, here’s a little help for the donor families and donation supporters out there.

PLEASE NOTE: the best advice I can give you is that we don’t want to seek out these tough conversations. We would rather respond kindly to misinformation than go out and find an argument. 

That said, sometimes hurtful and misinformed statements come your way. Let’s talk about how we talk about donation!

First and foremost, it’s important to #SeparateTheDebate. The debate over women’s health issues, like termination, is not the same debate as one over the legality or ethics of tissue donation. So, when I saw some inflammatory stories in my own friends’ Facebook feeds, I messaged each friend who posted with this respectful note:

Hi (friend)!

I wanted to reach out because I saw the Planned Parenthood story on your feed. You know, good people can disagree about a lot of issues. I just wanted to let you know that if you ever have questions about how tissue donation for research saves lives, and paying for the safe storage, transport, and containment of tissue donation is legal and sensible, I’m here.

We definitely don’t have to talk about Planned Parenthood, but I did want you to know that as a donor family, we know firsthand that donation for transplant AND research saves lives, and I’m happy to tell you more about how it works.

Love, Brianna

See what I did there? I separated donation from the fiery debate about Planned Parenthood. That’s an important first step!
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Next, if people continue to post articles that talk about the *selling* of tissue, take careful, calm, and thoughtful action. I posted this to my own Facebook and Twitter feed.
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Finally, if you would like to point people to a technical, academic source for talking about the bioethical issues around fetal tissue donation, here’s a blog post I wrote with a bioethicist colleague at the American Journal of Bioethics. We talk about some of the finer points of separating the debate.

Reading through some of the resources I have linked to, you might surmise that I have personal political beliefs that may or may not align with yours. It’s okay to disagree about these tough issues! We can all engage in respectful discourse without demeaning the compassionate gifts of millions of American families–gifts of donation, transplantation, and research.

For me, I want to protect the gift, protect the intention, and protect the outcome–for life saving transplants and medical research. I hope this installment of “Say What?!” can support you if a difficult conversation comes your way! Remember, separate the debate!

This has been an installment of the “Say What?!” series. Do you have a question about donation or transplantation that is hard to answer? Email me, and I’ll happily share my ideas! You can read the first two installments of the series here.

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Day Three: Staying Passionate, Positive, and On-point for National Donate Life Month!

Today’s tip is a part of my new “Say What?!” series, where I help you answer tough questions from the public about donation and transplantation.

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Many of you have probably seen the tragic story about the young man in Georgia, a heart recipient, who died in a high-speed chase with police.

Sometimes, with stories like this, people might ask you: “Why did this kid get a transplant? And not someone else?”

Or: “Do you think that he should have received a transplant?”

If you have attended any Positive Rhetoric trainings, you might have an idea of what I’m going to say next.

First, acknowledge the tragedy. Whatever your personal opinion might be, we can all agree that this is a very sad story.

“Bad things happen in this world. That story is very tragic, on many levels.”

OR

“I was very sad when I read that story.”

Next, inquire.

“Do you have any questions for me about how the transplant wait list works? It’s held by an organization called UNOS, which is separate from Donate Life, but they do the important work of matching gifts of life to those who need them.”

Then, give a statement of confidence in the medical professionals who make donation and transplantation possible.

“It’s a complex task, and I believe they are good people doing good work to save as many lives as they can through donation and transplantation.”

Finally, empathize.

“Gosh, I don’t know all the facts of this young man’s journey. You know, I wish we didn’t have to have a “LIST“–that EVERYONE who needed a life-saving transplant could receive one. My heart breaks for his family, and all those families on this difficult path of organ transplant.”

If someone continues to question you about the situation, keep pivoting back to one of my favorite tools: empathy.

“You know, if this was my child, I sure wouldn’t want people to speculate about the situation…what I can tell you is, I’m grateful that hundreds of thousands of people around the world are helped through donation and transplantation every single year.”

Do you have a question about donation or transplantation that is hard to answer? Email me, and I’ll happily share my ideas!