7 Things Donation Advocates Can Do at the Start of Donate Life Month
By now you have probably seen, if not read the letter from the House of Representatives Committee on Energy and Commerce to UNOS. If you were like me, you were overwhelmed by the insanity.
I don’t even know where to start.
I was going to nit-pick the letter, take each sentence to task, but that is a lot of work and it doesn’t move us forward. And right now I want to focus on how to move forward.
A lot of people have said to me something along the lines of, “thank you for saying everything you are saying. I am with you.” Or I support you. And even…let me know what I can do to help. This is very kind and supportive, but I am just a woman with no title, funding or authority who has taken to ranting on LinkedIn.
But I am also an organizer by trade and at heart, an environmental organizer to be exact.
I believe in the power of the grassroots to transform society. When I worked for environmental non-profits we always had that picture of all little fish working together to eat up the big fish on our wall. A reminder of our collective power as we faced well-funded polluters who had purchased our elected officials.
We are still facing climate change and environmental annihilation so maybe our organizing wasn’t completely effective, but we made progress and the next generation continues to organize and fight.
However, my experience in organizing the donation community is that ya’ll are like herding cats. Difficult. For Donate Life Hollywood I created an App to make it easy for people touched by donation to let Hollywood know when we were not happy with a bad organ donation storyline. The goal was to speak with one voice to get the entertainment industry to pay attention to our cause, and no one used it. Ya’ll yelled at your TV’s but you didn’t work collectively.
And trying to get donation leaders to work nationally is nearly impossible. The reason I am no longer running the highly effective Donate Life Hollywood project is because I couldn’t convince enough OPO CEO’s that giving $2500 a year to work with the entertainment industry was a good investment. One OPO CEO actually said to me that the reason she wouldn’t become a DLH supporter is because, “Hollywood isn’t in our service area.”
The sentiment about Hollywood annoyed me, but the letter from the House Committee pissed me off, and I bet it pissed you off too. Another thing I learned in the environmental movement is that when you are really pissed off, you get off your ass and do something.
So here are five things we could do to stop this madness, but it will take working together.
Join over 41,000 people who are rallying Congress and the Health Resources and Services Administration (HRSA) to defend the life-saving U.S. organ donation and transplant system, ensuring it remains free from profit-driven control.
On July 27, Congress passed H.R.2544 / S.1668, a bill that allows for-profit companies to take over the organ donation and transplant system without having any experience in this work and without any limit to the amount of funding they could be paid by the government. See more about how this petition is working to stop the for-profit takeover.
The DAU is a non-partisan group of individuals, primarily organ donation professionals and donor family members, who advocate nationally to protect the American organ procurement system from special interest groups and advocate for effective policy. Join today at www.theDAU.net.
The DAU isn’t a real thing…yet. It’s something I just made up, and doesn’t have a real website…yet. But why not start making shit up, especially if it helps us work together. Let me know if you like the idea and if you would join and I will figure out how to set it up. Look at #5 on this list to see where your membership dollars would be going.
Pick up the phone and call the representatives listed on the letter. Calling works. It is a basic grassroots strategy because it is so effective. Say whatever you feel. Express your frustration. Be upset. If you can’t call all of them, focus on the top two. Use this prompt to get you started.
Hello, my name is _______. I have worked in the organ donation system for XX years. I am deeply concerned about the letter by the House of Representatives Committee on Energy and Commerce signed by (representative name) and directed to the CEO of UNOS. Congress is creating policies that will have severe unintended consequences and undermine the progress of the organ donation system. I am calling to express concerns about the direction the committee is taking when it comes to UNOS. From the letter it is clear you have been listening to members of a group called Organize and they do not understand or represent the organ procurement professionals and our lived experience with the donation system. They are not whistleblowers. They are a special interest group. I encourage you to listen to the concerns of us who work within the system. I welcome a further conversation. My number is XXX.
Cathy McMorris Rodgers
Chair, Committee on Energy and Commerce
(202) 225-2006
Frank Pallone, Jr.
Ranking Member, Committee on Energy and Commerce
(202) 225-4671
H. Morgan Griffith
Chair Subcommittee on Oversight and Investigations
(202) 225-3861
Kathy Castor
Ranking Member Subcommittee on Oversight and Investigations
(202) 225-3376
Brett Guthrie
Chair Subcommittee on Health
Recommended by LinkedIn
(202) 225-3501
Anna G. Eshoo
Ranking Member Subcommittee on Health
(202) 225-8104
The Honorable Carole Johnson
Administrator, Health Resources and Services Administration
(301) 443-2216
An awards event, actually. An awards event to honor the 40th anniversary of NOTA. Similar to the Donate Life Hollywood Inspire Awards, NOTA 40 will give the donation community an opportunity to proactively engage congressional leaders, bring them in a room, inspire the hell out of them about the donation system and transform them into OUR advocates. It worked every time at the Inspire Awards and it will work for legislators too.
This was the “big idea” that ODAG shot down saying a $270,000 budget (split between the wealthiest OPOs) was a “heavy lift” and questioning whether it would make a difference. So instead they are doing…nothing? Because that will for sure make a difference. I don’t know how to fund the event at this point, but it’s still a good idea…and not even my idea. Science in Donation gifted the concept to me to run with, and I ran into a wall.
Here’s the summary I put together for ODAG to reject.
NOTA 40 is an event hosted by Donation Advocates United in December 2024 to honor Al Gore and Orrin Hatch (posthumously), the policy creators of the National Organ Transplant Act (NOTA).
NOTA 40 gives participating organ procurement organizations access to policy makers and policy influencers. It puts on display the non-profit public utility model of organ procurement that NOTA codified into law.
By bringing policy makers, elected officials, health staffers, and leaders in key health agencies to celebrate the benefits of the American procurement system we will transform the narrative about the organ procurement process. We will produce a compelling video that highlights the chaos of the organ procurement system before the implementation of NOTA, which can be used by organizations to educate legislators and media beyond the event. It could also be worthwhile to honor the founders of the Uniform Anatomical Gift Act (UAGA) to expand the honorees.
The focus of the event is on the OPO system and the donor families they serve. By making a clear delineation between the donor procurement process and transplantation we will help legislators understand the issues around policy that could destroy the procurement system that NOTA wisely created. OPO’s make transplants possible by supporting families and understanding grief. This is what makes the non-profit structure so effective.
This is not just an event, it is a campaign. The lead up to NOTA 40 will provide OPOs with an opportunity to proactively connect with and engage legislators and policymakers.
If you are an OPO CEO, make a decree that starting TODAY all internal and external communication including earned media, social media, newsletters and leadership statements focus only on the role of the OPO in relationship to the donor and donor family. Declare that you are not going to talk about transplant recipients or the waiting list. That is not who you serve.
If you are the comms team, evaluate your social media, website and CEO communication to see if your existing messaging has a focus on the role of the OPO in relationship to the donor and donor family. Talk to your CEO about making a decree to staff.
If you are anywhere else in the hierarchy of an OPO, talk to your CEO. Tell them that you think it’s essential for OPOs to focus on the donor and the donor family. Tell them you think that needs to be the case in the HOSPITAL and in all communication. Send them this article.
If you want help, hire me. I will create a strategy for your OPO communication that focuses on who you serve.
When you become a paid member of The DAU the funds will be used to commission opposition research on Organize. We need to have a clear understanding of who these people are and WHY they are doing what they are doing. If they want to paint themselves as “whistleblowers,” then we need some oppo research to blow the whistle on this complete distortion.
I have always been unclear whether Organize is after power or money, or both. I have been unsure how they have been able to get the Washington Post to write propaganda on their behalf. Is there money going to the writers, as I have heard suggested? What is the connection between Enron and Arnold Ventures and Organize?
We need expert researchers to turn over some rocks so we can use this information to transform the Organize narrative and shine a big bright light on these well-funded “whistleblowers.” I know a group that does this kind of work for major campaigns and I can’t wait to unleash them on Organize.
This story is insanity. It is a Pulitzer winning kind of story. The best organ donation system in the world is under attack by a shadow group funded by Enron who have painted themselves as “whistleblowers” but are literally telling the head of HRSA what to do in private meetings. This group spent $1.7 million on lobbying and an untold amount in earned media targeting elected officials. By using faulty data and misrepresenting the number of potential organ donors, this group sold Congress a tall tale about the reasons why 17 people die everyday waiting for a transplant. Their silver bullet solution, based on a pack of lies, is about to implode the delicate and effective exchange of organs for transplant.
It writes itself…
So let’s find an outlet, one that is read by policy makers. Something online, not the traditional media like the Washington Post, because they have failed at their job. It's time to get beyond ranting on LinkedIn. This is crisis communication 101 people, let’s take back the narrative.
Here is who I am going to reach out to, do you have any contacts here?
Take it from an environmentalist, you need to get angry and turn that anger into action. That is how you make change.
Founder/President Ava's Heart
9moBrilliant
Chief Public Affairs Officer at New England Donor Services
9moAs always, thank you for your thoughtful piece. I would only add that the regulations the federal government adopted regarding organ donation say nothing at all about donor families. Many of us in the OPO community worked diligently to change the draft regulations so that they were both more accurate and more valuing of the work OPO staff performs with donor families each day. Those efforts for better regs were rebuffed by the regulators and the for-profit mob. Sadly, as it currently stands in the U.S., donor families are entirely invisible to the regulatory framework. Of course, this does not dissuade OPOs from supporting our donor families, but the regulatory environment considers that work as generally unimportant.
VP of Business Development & Logistics Operations - Show up early. Work hard. Stay humble. Be positive. Be a team player. Never let a task be too little, but have faith, knowing no task is ever too big either.
9moSincere and legitimate question: you stated the petition was to prevent a for profit company from running the OPTN because they didn’t have experience and there was no limit to federal funding or something to that effect. What if the for profit company actually DID have experience in the space? There are a lot of entities within the organ procurement staffing space, third party on-call services, biomedical devices, ground/aviation/logistics fields and more who are for profit and have a lot of experience. Is the idea of a profit driven (both monetary and mission) organization that is governed by a separate and unrelated board that untenable or unrealistic? I suppose a greedy organization that had its own destruction in mind could see this as a cash grab, come in, take money, and fail as a very remote possibility, but otherwise fail to deliver see the impossibility of a profit driven organization being capable of having altruistic goals and motives at the same time. I see many sticking points in the ongoing “modernization effort,” but an appropriately experienced, sized, and driven for profit organization isn’t one of them. Just wanted to hear your thoughts on that.
I choose positivity and kindness.
9moSigned!