Well, I did it again.

[Clark]

When they asked if I'd consider being a nominee for the new OPTN Board of Directors, I said yes. And they went and elected me again. For a four year term! I just attended the first orientation session of four for the new board members. That's already a big change! Lots of changes in the past 14 years.


I'm your representative on the board, the official Living Donor, choose 1. What matters to you? Let me know! My issues have always been:
1) Informed consent for all living donor candidates from the moment they present as such,
2) Duty of care for all living donor candidates as whole persons throughout their path to donation,
3) Excellence in policy, practice, and practitioners for the surgery and all complications for both donor and recipient,
4) Immediate and long term (lifetime!) follow up and duty of care for all who have presented and set foot on the path to donation, including those who undergo surgery, but also those deferred by potentially devastating revelations about their own physical or mental health or their genetic relationships to intended recipients.


  We do not yet consider all these goals in current debate of public policy. The fact we considered none of them when I first was elected to the board nearly 20 years ago and now many are established policy is heartening. That Congress has legislated to acheive further improvement is amazing. What are your thoughts on the changing environment?


  Thank you all who are still reading after all these years!

[Michael]

Congratulations, John. It's great to know living donors have an advocate like you on the Board for the next four years!

As I think about what living donors would like to see from the transplant system through OPTN policies, there are three topics that come to mind right now:

1. Adoption of OPTN's proposal, "Concepts for a Collaborative Approach to Living Donor Data Collection": https://optn.transplant.hrsa.gov/policies-bylaws/public-comment/concepts-for-a-collaborative-approach-to-living-donor-data-collection/ This policy would facilitate creation of a national living donor registry managed by SRTR. The draft proposal had its initial public comment period in September 2023. My understanding is the Living Donor Committee recently adopted an updated version, which will have a public comment period starting in August. This is the closest we've come to having a national registry so we really need help getting this proposal across the goal line. Expect lots of push back from the transplant centers.

2. As you noted, clarifying responsibility for living donors after surgery, especially those with complications. This is a tough one because there is so much subjectivity in medical diagnoses so it can be challenging to assign responsibility. But we know complications can arise even years after donation and transplant centers are notorious for denying responsibility. What if they were mandated to have responsibility so there was no question? The costs could be built into the cost of transplantation, or perhaps Medicare could be modified to be a source of funding for post-surgery care. (I'm sure I don't need to say the current political environment makes this idea extremely challenging.)

3. Asking transplant centers to provide living donors with two documents at the time of discharge. One document is detailed long-term instructions for the donor, including what to expect during recovery, possible short-term and long-term complications and what to do about them, participation in the two-year follow-up exams, suggestions for ongoing long-term monitoring of kidney/liver health, general physical and mental health tips, and additional resources and support. The second document (maybe a letter) would be for the donor to give to his/her primary care physician (PCP) alerting the PCP to donor status, offering suggestions for long-term monitoring (e.g., specific annual biometrics), cautions about using GFR for diagnosing CKD for kidney donors, watching for long-term hernias and gastrointestinal issues for liver donors, etc. I'm working on draft outlines for these two documents now, using frequency of questions posted by living donors in social media to guide the content. I don't expect providing these documents to be mandatory since transplant centers dislike such things so much. Instead, it could be a suggested practice with sample documentation a center could customize for its own purposes, similar to the suggested content for "informed consent."

So, that's what I have for you now. I reserve the right to "ping" you again over the next four years as more living donor issues arise. 

Thanks for all you do!

[Clark]

Dear Michael,


  Thank you! And thanks for your responses here and the link to the 2003 proposal and all its public comments, including yours! I recall seeing this when it came out two years ago, and feeling exhausted that we still seemed to be on square one about this nearly 20 years since the Istanbul Declaration! I take responsibility again to see if we can make some real progress soon.


  Beats me why we can't solve this with MyChart/HIPPA compliant electronic record sharing. Nothing extra needs to be entered by anyone at any time, what records are entered become part of the candidates' records for all authorized caregivers. Deidentified data can be pulled as contracted by SRTR/LDC without any extra time or cost to others, especially not the donor or deferred candidate. It's secure, or at least as secure as anything is, and behind a legally defined privacy shield. No extra staff are required by transplant centers, no mailings, no questionnaires for donors or paper to be interpreted (with errors!) for data entry. It doesn't even matter if the donor/candidate doesn't use MyChart or a competitor, all the medical practioners they come in contact with do.


  Additional, out of the ordinary adverse developments in health or well being that incur out of pocket expense for donors (and candidates?! Someday!) are a separate topic to be addressed: "You broke it, you bought it." CMS as the representative of the federal government and health care? (For covered individuals). What defines "out of the ordinary"? What level of cause and effect relationship, in whose judgement, means it's reimburseable? PCP seems the most appropriate, or referral and consultation with an independent nephrologist and/or urologist and/or psychiatrist (others to consider?).


  The MyChart method even takes care of your two documents, and more, by providing a lifelong archive for the notes related to every visit and procedure, including short term and long term follow up suggestions for better outcomes, though users who don't pay attention or log in to see them will be relying on the PCP to lecture them if they're non-compliant. Transplant centers can even outsource 6, 12, & 24 month follow ups to PCPs if returning to them is onerous for the donors, or just not happening. That actually might address "lost" donors, they can't be lost unless they stop seeing any practitioner anywhere. In the US, anyway. International donors remain a serious potential problem for transplant centers.


  Great to be discussing these topics with you again!