ACOT Advocacy CMS - Medicare OPTN

How to Report Your Living Donor Issues

Contrary to popular media perception, not all living kidney or liver donors skip merrily off into the sunset. Some end up dead, maimed or emotionally damaged. The question then becomes: what does a living donor who believes s/he has been mistreated, coerced, manipulated, lied to, betrayed or abandoned do?

Obviously, one can consult a lawyer, but odds are, most will have no experience or knowledge of the unique laws, policies and otherwise governing the living donor experience, and will regard it like any other instance of possible medical malpractice. But as we know, living donation differs from any other surgical intervention:

1. Living donation is an elective procedure.
2. The living organ donor receives NO benefit from the surgery.
3. The living donor is utilized as treatment for someone else.
4. The living donor is evaluated by a team of specialists, as opposed to a single practitioner.
5. Living donors are at higher risk of certain health problems after surgery than they were prior to. In other words, the act of donating makes one’s health worse rather than better.

Despite what some may think, finding and retaining an attorney is not as easy as opening the yellow pages (or its internet equivalent). So, the following are some steps one can take in lieu of or prior to a stressful lawyer search:


1. Request a copy of your medical record from the transplant center. If possible, have someone familiar with living donation and medicine to review the records with/for you. Familiarize yourself with the various laws and policies governing living donation so you can create a list of the ways your treatment fell short.


– I was never told about the risk of hernia, chylous ascites, nerve damage, etc.

– CMS Final Rule 2007 states that I must have access to an Independent Donor Advocate yet one was never offered to me.


It is important to have knowledge of HIPAA, informed consent, OPTN and CMS policies so that one can refute erroneous statements provided by representatives of the various agencies given the responsibility of overseeing the medical and transplant communities.

Once you have a detailed rundown of your case, consider the following:


– UNOS has a 1-800 number that every living donor is supposed to receive during their living donor evaluation for the sole purpose of reporting any difficulties or problems. What is done with the information gleaned from this hotline is a mystery. There are no official policies requiring the issues presented on the hotline to be resolved or addressed in any way.

Also, it’s important to remember that UNOS is the contractor that manages OPTN, and OPTN’s membership is composed primarily of organizations that benefit from organ transplants. This is the same group that has had ample time to develop living donor protections and policies and has chosen not to do so.

If you do decide to talk to someone at UNOS, here are a few suggestions:

1. Record the call. Yes, it’s legal but if it makes you feel better, tell the person on the other end of the phone that you’re taping so you don’t misunderstand or forget anything they’ve said.

2. Keep the aforementioned documentation (medical records, notes on it) handy for reference.

3. Don’t be afraid to confront any statements which contradict your research. Be polite but firm.

4. Ask the individual on the other of the phone what s/he intends to do about your situation. Again, be polite but firm.


– Contact the hospital ombudsmen. Get everything in writing if possible, or again, record every phone conversation. Be specific regarding your desired resolution.


– File a report with your state medical licensing board. Keep in mind that in most states, these investigations are ‘private’, which means that you have no way of knowing who or what is involved (if anything/one) and you have very little recourse when they send the form letter indicating the case is closed.


– Take your concerns to ACOT. Attend one of their twice yearly public meetings and tell your story during the public comments segment. Make written copies of your statement for each ACOT member as well as those in the audience.

If that idea scares the bejeebus out of you, you could choose to compose a concise but detailed missive about your case and send it to the members of ACOT (their contact info is available on the website). Be specific regarding what you’d like to see done. Example: I strongly urge ACOT to mandate the inclusion of national mortality and morbidity data during the living donor evaluation process.

If you request your statement to be included in the public comment, it will be appear on the ACOT website under ‘meeting notes‘. This makes your concerns and experience accessible to the public, which can only  encourage others to step forward with their own stories. But hey, if you’re not ready for that, keep the conversation with ACOT in-house.


– Lodge a complaint with CMS aka the Center for Medicaid and Medicare Services. Refer to your already created checklist and limit your correspondence to those instances of care which violate CMS stated polcies (see here). The Cleveland Clinic Foundation was cited in 2009 for incomplete patient files, and Lahey was recently dinged as part of the Paul Hawkes investigation.


– File a complaint with the Joint Commission, the accreditation agency for hospitals and health care facilities. They focus solely on issues of safety and quality of care, as opposed to billing or record-keeping.


No one or combination of these steps can guarantee a satisfactory resolution to any given situation. It’s a complicated system, and one that seems to be heavily in favor of protecting physicians and hospitals, but it’s the system we have. While trying to navigate the labyrinth, consider reaching out to like-minded websites, people and organizations. I urge caution here though; not all things that claim to be living donor centered are interested in dealing with anyone who isn’t a living donor cheerleader.


Remember: take care of yourself first.


PS If anyone has any other suggestions, leave them in the comments, or drop me an email.

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