General
Pre-and Post-Transplant Patient Advocacy
January 21, 2026
in General
As we're more than midway through January, I'm already receiving emails for many kidney-centric advocacy opportunities in March (National Kidney Month). It got me thinking about some prior trips I made to Capitol Hill and/or my local legislator's office over the years. Has anyone's personal health journey, regardless of organ or transplant status, inspired them to advocate virtually or in person? Would love to hear some of your experiences!
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I have had the wonderful opportunity of going to advocate in DC with my Womenheart support group. This all started post transplant. I thought if I can advocate for improving women's heart health BEFORE they need a life saving heart transplant it would be worth it. Plus, having a transplant patient advocate for anything has an impact on the Legislative aides. It is rare we get our actual elected officials. But, I have heard, that they generally have the "ear" and can help pass on our concerns and information. The group provides the policies we are focused on, and sets up the meetings. We provide our stories and visit the elected official offices. If in DC on February 3, look for us all sporting red heart themed outfits as we visit Capitol Hill. The experience reminds me that we have a voice and still can participate in the democratic process.
For Donate Life month, I would love to do more than obtain a proclamation for my OPO from my city. My goal is to light up our Water tower in blue and green this year. I was inspired by seeing Jamie's picture last year at a stadium in her city.
The advocacy in that post is the soft, reactive kind that pops up after someone gets hit by their own medical crisis. It is sympathetic but limited. It frames advocacy as a personal coping mechanism rather than a strategic effort to change how the system actually works. That is not the level of pressure needed to fix organ procurement, transplant access, or the structural failures that keep patients trapped in old models.
Real advocacy begins long before anyone ends up on a gurney. It is not a memoir hobby or a March-only activity. It is the work of understanding how procurement policy, regulatory capture, and industry incentives shape who gets listed, who gets ignored, and who dies waiting. The post treats advocacy like a storytelling circle, not a lever to force federal policy reform. Speaking up only after becoming sick is better than silence, but it is a narrow lens. Effective advocacy exposes the upstream failures, the procurement inefficiencies, and the bureaucratic decisions that determine outcomes long before a patient ever meets a surgeon.
If the goal is to protect future patients, the conversation must shift from personal inspiration to structural accountability
Transplant Patient
Welcome to our forum @JeffParke72 and thank you for raising your voice! I do think it is common to advocate after you have experienced something yourself or seen something happen personally. However, doing the research and trying to understand all points of perspective are key to success and unbiased opinion (as much as possible). I have always been interested in innovation and medicine - ever since I was a young girl. But it was not until I was struck with t1d and later organ failure that I truly could understand the patient perspective fully. I have advocated on behalf of the jdrf, professional ans patient organizations and on behalf of chronic illness patients my entire career - myself only an n-1, but together we are mighty if we are aligned.
Before my transplant, I only shared my story with family and friends who asked about my journey. After my transplant, everything shifted in a powerful way. I’ve found myself stepping into advocacy both online and in person through different organizations, and I’ve also been invited by my university to speak and share my experience. The work I do in advocacy has helped me understand my own transplant journey on a deeper level, and it’s taught me things about healing and resilience that I may not have realized otherwise. I’m currently taking a policy and advocacy class, and I’m excited to learn more about how policy works within our government so I can continue using my voice to create change and support others.
Transplant Patient
LaVise you are such a great example of how one can become an advocate through your experience!
When I was on dialysis, I lived in NJ and once i was the age when I was about to lose my health insurance from my parents I applied for Medicare and was able to get a medigap plan for people under 50 but I soon realized that getting prescription coverage was an entirely different problem. I was working and so i no longer qualified for Medicaid. I wrote a letter to the Assemblyman in my district and the Insurance Commissioner of the State of NJ and others about the need for prescription coverage and asked why it was not included in the Under 50 Plan when the bill was passed in the State Assembly and State Senate. I wrote letters for over a year but unfortunately at that time the revised bill was not passed.
I have found that my advocacy started while with my transplant. In 2007 when i was first transplanted i knew i wanted to find a way to give back. i did some research about what kinds of advocacy was out there. with all the pt orgs that are available its helpful that there a lot of different opportunities for us. i appreciate this conversation. As i look for/wait for my 2nd transplant i think ive been able to continue to advocate for patients by just sharing my journey,im one person who deals with kidney issues but its my journey nonetheless and if one person can resonate with it then im glad i was able to help that person understand something about the disease. i will continue to talk with my local politicians and do it virtually and in person.
@Karin Thank you! I truly appreciate your thoughtfulness. Advocating brings me so much joy and I truly appreciate you for supporting my growth and giving me the opportunity to keep learning through this platform.
Transplant Patient
I think there are lots of different ways to get involved, or advocate. We absolutely need people to advocate for new legislations world wide, and one thing I know about me is I will never be that person! I’d rather stab myself with a fork than learn about science and innovation and policy. But what I do know is story. I love chatting with people, hearing their stories, sharing my personal story. It might not be campaigning at the legislature but I like to think it makes a difference.
there is a lot of work that needs to be done on a policy level, and I’m so grateful for the people who do that well. I’m reminded daily that it takes all kinds of kinds to make a difference. I do what I can, and I know what my strengths are and where I can use that to influence.
Living in New Mexico, unfortunately, has limited my attempts to start my real need to advocate. I do think I will grab any opportunity to get my story out there. It is amazing once you inform those around you of your status, or for me atleast, all these people come out with amazing stories of success and loss in transplant. The people in need are out there. That's why we are needed. Even just letting yourself be open and honest with your journey can help others see they are truly not alone.