Barriers Related to the Evaluation and Follow-Up of International Living Donors
At a glance
Background
Current OPTN policy requires transplant programs to conduct a psychosocial and medical evaluation for all living donors before transplant donation. The complicated and time consuming evaluation process for living donors is particularly challenging for international living donors. This guidance document shares practices for evaluation and follow up of international living donors based on the OPTN AD Hoc International Relations Committee’s assessment.
Supporting Media
Presentation
Proposed guidance
The guidance document identified four barriers in the evaluation and care of international living donors, and provides guidance on addressing these barriers.
- Communication barriers: Use HIPPA-compliant communication for initial contact with international living donor candidates. Use trained medical interpreters to ensure accurate communication.
- Logistic barriers: Transplant programs should conduct as much of the preliminary evaluation as possible. Transplant programs should be fully transparent regarding costs, including financial assistance not being available to international donors.
- Risk of exploitation, coercion, and inducement: Transplant programs should assess the risk of inducement of international living donors who may seek either asylum or financial gain. Transplant programs should attempt to verify the relationship between the international living donor and the transplant candidate.
- Post-donation follow-up: A follow-up plan for care should be established in the donor’s home country prior to donation
Anticipated impact
- What it's expected to do
- Provide practices for programs to consider when evaluating and following up with international living donors
- What it won't do
- This public comment item will not create new OPTN policy
- As a guidance document this provides recommendations for transplant programs to follow if they wish to do so
- This public comment item will not create new OPTN policy
Terms to know
- Living Donor: A living person who donates an organ for transplantation, such as a kidney or a segment of the lung, liver, pancreas, or intestine. Living donors may be blood relatives, emotionally related individuals, or altruistic strangers.
- Non-citizens residents (NCR): A person living in the United States who is not a citizen.
- Non-citizens/non-residents (NCNR): A person living outside the United States who is not a citizen of the United States.
- Psychosocial evaluation: An assessment of a candidate’s mental health, emotional health, and social well-being.
- Medical evaluation: An assessment of a candidate’s physical health.
- Health Insurance Portability and Accountability Act (HIPPA): Passed in 1996, HIPAA requires employers to provide health insurance coverage to employees who lose or change jobs, and includes an administrative simplification section which deals with the standardization of healthcare-related information systems including data security, protection of patient confidentiality and privacy. The Act mandates standardized formats for all patient health, administrative, and financial data; unique identifiers (ID numbers) for each healthcare entity, including individuals, employers, health plans and health care providers; and security mechanisms to ensure confidentiality and data integrity for any information that identifies an individual.
- Exploitation, inducement, coercion: Ethical terms used to ensure living donors are not being forced or seeking financial gain for their donation.
- Post donation follow up: Medical care that occurs after donation to ensure the long-term health of the living donor.
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Read the full proposal (PDF)
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Comments
Anonymous | 01/21/2025
In my previous positions, as well as my current position, I have almost 18 years' experience in living donor follow up. I have completed hundreds of UNOS TIEDI forms and collected thousands of data points.
In my experience, international donors, specifically from middle eastern countries are not vetted properly, and often due to the recipient's connection to an Embassy, Military, and/or wealth in their home country, potentially unethical practices including coercion, monetary payment and offers of Asylum are swept under the rug, i.e. don't ask, don't tell. Most often, these donors are "Long time friends of the family". It's like a script. They do not speak English, and are unable to speak confidentially, as they are attended by their own sponsored "interpreter", not an impartial, hospital interpreting service.
Once the organ has been donated, the only contact for the donor is thru the Embassy, or the recipient, who responds invariably, if at all, with " He's fine, doing well, I see him all the time". I have not been able to contact a donor directly for follow up, and if labs are received, they are also thru the recipient and their Medical Center Who knows if the results are actually from the donor. On one specific occasion, when searching the Medical Record for contact information, I found our young, 20-somethin "Kuwaiti" donor, as identified in his records, had a Syrian Passport. This threw up red flags everywhere, especially with regard to our inability to ever speak to these donors for follow up, even when calling with an interpreter. The Embassy also played "Gatekeeper". We did have an "International Liaison" officer; however, I considered him a facilitator who tried to be helpful to a point--seemingly aware yet unwilling to question current practices.
This situation has the appearance of impropriety, bordering on illegal in my opinion, but no one has ever been open to discussing this issue. I'm hopeful that some new policies and investigation can make these diplomatic agreements more uniform and transparent. Thanks for asking!