One of the things I learned from my local support group is one thing that UNOS (The United Network for Organ Sharing) really does well is to ask the public to weigh in on proposed policy changes in both the transplant & donor sectors.
I didn’t know this before I joined them, but I’m glad I do.
I have written them a few comments on issues of importance.
I’m sure I’ll continue to do so. I’m glad they give people the opportunity to weigh in because I feel it adds very important perspective.
Thinking about this process is also what really what irks me about some of these myths & justifications that people use to argue against donating their organs or use in support of blanket generalizations that only “rich” people get transplants or can list for transplant.
They don’t take the time to learn about the actual process from either end (either donating or receiving an organ) or solely base it on one center’s or patient’s experience rather than as a collective whole.
I do often point out the complexities of the transplant process in my blog with certain posts, but this is one soapbox I’ll still climb up on from time-to-time.
Perpetuating such myths or making active efforts to sway people away from donation really annoys me. Or worse yet, vocal social media attempts to scare someone of having a transplant evaluation or discussion with their doctor by making it seem like it can never be an attainable reality is often done without blinking an eye. Often too, with ad hominem & personal attacks against people who are actively in the process of donating or listing when they dare disagree or use factual sources & information to debunk untruths.
I get it! It’s par for the course in a public forum, but still…it’s insulting to us going through this sometimes very painful & personal process to have our experiences picked apart, judged, & generalized under outdated & false assumptions.
You’d think I’d have thicker skin by now since I’ve fought it for years with both LAM & TSC, but I think I just lose energy to tolerate it at points.
I just can’t keep my mouth shut on it though, in the hopes of reaching someone who might really need to hear some positive (yet factual information) regarding navigating the process. Even though it’s not easy, it’s attainable & there are ways to successfully deal with issues as they arise.
While I read things on social media & most sources with a grain of salt, there are those who do the opposite & do feed into the myths & conspiracies because that’s predominately what they hear & also see reported. This slant is really upsetting.
While there are cases that people haven’t been able to afford it, there are most likely other factors outside of that that came into play as to why someone wasn’t a suitable candidate for transplant. Each center weighs criteria differently.
It’s not solely based on affordability alone like people try to oversimplify & make it seem to be.
I really wish these “proponents” would take a look at the UNOS Transplant Living section of their site & the wonderful information they have available for the public on both the donation & the transplant processes. There’s a lot of educational & useful information written in a very easy-to-follow way.
I learned early on in my volunteerism that even in spite of frustrations in policy & differing political views & climates, the average person can still affect change in certain realms simply by speaking up on issues that matter to them.
This is a simple truth that is often forgotten in times of political upheavals & election cycles (regardless of party lines). I’ve done it before & although it’s physically more of a challenge for me to do so in person, I still send emails & make phone calls on issues of importance in both rare disease & organ donation.
I do to raise awareness & hopefully further research & these important causes.
I’ve received respectful & detailed replies back from both state & national delegates when I’ve taken the time to voice my opinion on certain issues (even when they may not necessarily agree).
UNOS has a link to current donor & transplant policies here.
This is their public comment link of changes that are open for public comment & feedback.