Organ Donation Process

The United Network for Organ Sharing (UNOS) operates the Organ Procurement and Transplantation Network (OPTN), working collaboratively to ensure equity in the transplant process through multiple strategic efforts. Although UNOS and OPTN follow guidelines and policies that emphasize the prioritization of transparency and fairness in organ allocation, UNOS is also primarily responsible for developing policies and adopting policy changes to achieve more equitable outcomes. The OPTN can form committees or workgroups to research further measures to improve or enhance current outcomes, which can provide UNOS with the necessary data to make informed decisions for policy development. 

UNOS and OPTN use the Equity in Access dashboard to track and maintain outcome data respective to demographics, allowing greater visibility and transparency regarding access to transplants. This data helps optimize organ allocation nationwide since one of the primary barriers to transplant access is the potential candidates’ location. The OPTN publishes this dashboard data in monitoring reports on organ allocation policies; likewise, the dashboard is instrumental in advancing public research. The UNOS acts as a facilitator in this regard, obtaining the necessary authorizations for the OPTN to collect the data included in the dashboard and other data vital to improving policy. UNOS uses the OPTN data to analyze trends and identify inequities in transplant patient populations.

UNOS and OPTN proactively engage with members and leaders in the transplant community to gather valuable insights and make collective decisions regarding organ allocation and transplant policies. This approach enables the UNOS and OPTN to consider various perspectives and concerns within the community, making it easier for stakeholders to develop equitable practices and guidelines. Through these collaborative efforts, UNOS and OPTN can prioritize essential factors such as compatibility, fairness and medical need to ensure that organs are allocated appropriately and have a high likelihood of transplant success. 

Sources 

“Access: Improve access to the transplant healthcare system”. United Network for Organ Sharing. https://unos.org/transplant/improve-organ-donation-and-transplant-system/transplant-access/ 

Typically, in the case of both living and deceased organ donation, the transplant recipient’s health insurance pays for transplant surgery and other medical services related to organ or tissue donation. However, many insurance plans have a maximum amount they will pay within a lifetime or for a specific procedure, known as a cap. Sometimes, secondary or supplementary insurance may cover the expenses that the recipient’s primary insurance does not cover. However, since the costs associated with transplant surgery can be substantial, lack of coverage may prevent potential recipients from receiving a transplant due to the inability to pay. In these cases, Medicaid may help cover the cost depending on where the recipient lives.

Following approval to receive transplant surgery, individuals with insurance coverage are encouraged to plan for the anticipated expenses by reviewing their health insurance policy to understand the costs covered. Contacting the insurance company is also highly encouraged to gain further insight into caps, co-pay, deductibles and reimbursement for additional services after the surgery. It can be helpful to ask the following questions about insurance coverage for transplants:

• Does my insurance plan have a maximum limit or cap for transplant service coverage? 
• Is the transplant center or hospital in-network with this insurance plan?
• What deductibles apply to these transplant services?
• Is a prior authorization needed for coverage?
• Are there any requirements or restrictions regarding pre-existing conditions? 

It is important to remember that any expenses not covered by the transplant recipient’s insurance must be paid for by the recipient using an alternative method. The donor and the donor’s family do not pay for any services associated with organ and tissue donation or transplant surgery. Financial coordinators and social workers at the hospital or transplant center can help provide potential recipients with access to resources and further information regarding options for payment. 

Sources

“Living donor transplant”. Mayo Clinic. https://www.mayoclinic.org/tests-procedures/living-donor-transplant/living-donor-frequently-asked-costs-and-insurance-questions/gnc-20204089 

“How to Get on the Waiting List for an Organ Transplant”. Verywell Health. https://www.verywellhealth.com/organ-transplant-waiting-list-requirements-3156951 

“Transplant Services”. Florida Agency for Health Care Administration. https://ahca.myflorida.com/medicaid/medicaid-policy-quality-and-operations/medicaid-policy-and-quality/medicaid-policy/medical-and-behavioral-health-coverage-policy/primary-and-preventive-care-policy/transplant-services 

“Resources for patients, caregivers, and the public”. UNOS. https://unos.org/resources/patient/ 

The United Network for Organ Sharing (UNOS) is a private non-profit organization that manages the U.S. transplant system, otherwise known as the Organ Procurement and Transplantation Network (OPTN). UNOS was established in 1977 and is responsible for overseeing the coordination and distribution of donated organs through the OPTN. As a forum for donation and transplant professionals, UNOS fulfills three crucial roles: 

• Improving the efficiency of the transplant system and processes
• Ensuring equitable access to suitable organs 
• Increasing utilization of donated organs 

Although UNOS manages the national transplant system and ensures effective matching of recipients to donors, it is not responsible for registering or removing patients on the waitlist for a transplant. UNOS operates a centralized computer network called UNet, which connects histocompatibility labs, transplant centers, and organ procurement organizations. This network provides a platform for patients to be listed and matched for transplants and housing the data required by the OPTN for compliance monitoring. 

The UNOS coordinates the OPTN committees and the board of directors’ actions. It enables OPTN members to develop policies that inform the equitable distribution of organs and opens policy proposals for public comment. The UNOS also plays a significant role in educating transplant professionals and the general public. While the UNOS promotes awareness of the general public regarding the importance of organ donor registration and its life-saving capabilities, it also educates transplant professionals about their involvement in the overall donation and transplant process. 

Since its formal incorporation in 1984, UNOS has taken substantial actions to ensure the transplant system is more robust and efficient. This has increased the number of suitable organs recovered from donors and the corresponding number of transplants performed. Its continuous partnership with leaders in science and technology has ensured that OPTN members and volunteers have access to the necessary resources and tools to achieve a timely donation and transplantation process. Through its work, UNOS maintains a pivotal role in saving and improving the lives of patients needing transplants nationwide.

Sources

“United Network for Organ Sharing FAQs”. United Network for Organ Sharing. https://unos.org/about/faqs/#WhatIsTheOPTN 

“Organ Procurement and Transplantation Network Policies and Reports”. Health Resources & Services Administration. https://www.organdonor.gov/about-us/legislation-policy/optn

The Organ Procurement and Transplantation Network (OPTN) is a nationwide transplant system. While it is not a government agency or entity, it operates under the oversight and contract of the federal government through the United States Department of Health and Human Services. The purpose of the OPTN is to carry out the functions outlined in the National Organ Transplant Act of 1984 and to improve the system further so that more individuals can access suitable organs for transplantation. 

The OPTN is composed of professionals in the transplantation and donation system, as well as member organizations and individual members. Membership in the OPTN requires that organizations and institutions meet specific requirements set by the OPTN and that they actively contribute to the formation of policies that guide the transplant systems. These members contribute to decision-making in collaboration with committees and the OPTN board of directors. Members of the OPTN include, but are not limited to: 

• Organ procurement organizations (OPO)
• Transplant hospital programs
• Transplant histocompatibility laboratories
• Voluntary health organizations
• Medical professional organizations
• Scientific organizations 
• General public members (donor families, ethicists, etc.) 
• Business members 

Additionally, the OPTN manages organ allocation to patients based on factors such as urgency, proximity, compatibility and other relevant factors. As the infrastructure that connects members to facilitate fair access to organs, the OPTN also monitors the performance of OPOs and transplant centers to ensure that they remain compliant with federal regulations. Overall, the OPTN is vital in the support and advancement of organ transplantation throughout the United States.

Sources

“About OPTN”. Organ Procurement & Transplantation Network. https://optn.transplant.hrsa.gov/about/ 

“About OPTN membership”. Organ Procurement & Transplantation Network. https://optn.transplant.hrsa.gov/about/about-optn-membership/ 

The time necessary to process an organ or tissue donation varies, ranging from 24 to 36 hours to up to a few days. The tasks involved, such as evaluating donor suitability, gathering authorization, identifying potential matching recipients, and organ recovery and transplantation, can sometimes take several hours per task since there are so many logistical and medical factors to consider. It is crucial to place donations with the most compatible match possible to reduce the risk of rejection, which makes evaluation and identification tasks all the more time-consuming to achieve the ideal outcome. 

Although the donation process can take a fair amount of time, organ transplants can only occur within a specific window of time to maintain the viability of the organ. Some organs are only viable for up to six hours after removal from the donor’s body. It can also take several hours to complete an organ transplant surgery.

In general, organ viability with preservation typically lasts: 

• 2 to 4 hours for lungs 
• 4 to 6 hours for hearts 
• 12 to 18 hours for livers 
• 12 to 18 hours for the pancreas 
• 8 hours for intestines, and 
• 48 hours for kidneys 

With medical advancements, tissue donations tend to have much broader windows of viability, and many tissues can remain viable for years with proper preservation. 

Ultimately, the donation process is driven by multiple factors and requires timely coordination among teams, patients and their families to be successful. After the donation process is complete, an ongoing follow-up process begins and typically continues for weeks or months, depending on the needs of the donor’s family. 

Sources

“Deceased Donor Transplant Process.” New York-Presbyterian. https://www.nyp.org/transplant/organ-donation/organ-transplant-process 

“Donation Process.” Donate Life Texas. https://www.donatelifetexas.org/donation-process/

“Organ Donation and Transplantation.” Cleveland Clinic. https://my.clevelandclinic.org/health/treatments/11750-organ-donation-and-transplantation 

Organs are not matched according to race or ethnicity, and individuals from different races can match one another for organ donations. However, individuals who are waitlisted to receive a transplant are more likely to become recipients if there are more donors from the same racial or ethnic background. Tissue markers and blood type matches are more likely among individuals of the same ethnicity. 

Organ transplants are more successful when made within the same ethnic group due to human leukocyte antigens. HLAs help regulate the immune system and are proteins in most body cells. When the HLA-type doesn’t match well, it can impact transplant outcomes and influence matching. For example, kidney transplants are most needed among African American patients. However, since HLA doesn’t match well between Caucasian and African American candidates and there are fewer African American donors,  African American transplant candidates often need to wait longer to receive a suitable transplant match or receive a transplant that may not be an optimal match.

Diversity in the donor population helps to increase transplant access for everyone. It can also increase the likelihood of long-term survival when donors and recipients are closely matched. Ultimately, fostering diversity among the donor population, addressing cultural concerns, increasing awareness about the importance of donation, and promoting donation across all communities are essential components of a more equitable organ transplant system.

Sources

“Does race matter in organ transplants?” Donor Alliance: Organ & Tissue Donation. https://www.donoralliance.org/newsroom/donation-essentials/multicultural-groups-donation-does-race-matter-in-organ-transplants/ 

“Race, ethnicity, & donation.” Donate Life America. https://donatelife.net/donation/organ-donation-race-ethnicity/ 

“Your questions answered.” LifeSource: The Heart of Organ Donation. https://www.life-source.org/latest/does-my-race-ethnicity-matter-in-organ-donation/

The process of matching donors with transplant recipients is complex and contains many factors and “moving parts.” Considerations include:

• Which organs are available for transplantation
• Physical compatibility (blood type, height, weight and age)
• The location of the donor and recipient
• Medical urgency

According to the Department of Health and Human Services, the matching process begins when the regional organ procurement network is notified that a potential donor has died. While the medical team at the hospital continues efforts to preserve the organs through artificial means such as ventilator support, intravenous fluids and medicine to maintain blood pressure, the OPO enters the patient’s information into The Organ Procurement and Transplantation Network (OPTN) database, which operates on a set of nationally established rules. The computer system determines where and to whom each organ goes. Although the decision-making process is far from simple, the basic steps include the following:

• Eliminate all unsuitable candidates: The computer first eliminates any candidate who is an unsuitable recipient for any or all available organs due to blood type, age, height or weight. 
• Prioritize by region: For the purposes of organ allocation, the U.S. is divided into 57 local Donation Service Areas and 11 regions. For all organs except hearts and lungs, organs are allocated first to the sickest patients in the region where the donor is located. If there is more than one potential recipient in equal medical need of a transplant in the region, the patient located in the same local Donation Service Area as the donor usually gets first dibs. If there is no potential recipient in the region, the search expands to the entire country.
  • Hearts and lungs: Because hearts and lungs must be transplanted quickly after retrieval, they are allocated according to distance from the donor hospital versus by region. 
• Consider size and age:  Pediatric patients are generally prioritized over adults when an available organ is from a child. If there is no child on the waiting list, a pediatric organ may go to an adult. 
• Other medical factors: In addition to blood type and medical urgency, the matching system uses a number of factors in determining the appropriate donor-recipient match. Many of these are specific to the organ involved.
  • Kidney
    • Time on waiting list
    • Tissue compatibility (based on immune system markers)
    • Pediatric status
    • Prior living donation (patient had a kidney transplant from a living donor that failed)
    • Distance from donor hospital
    • Survival benefit
  • Heart
    • Medical urgency
    • Distance from donor hospital
  • Lung
    • Survival benefit
    • Medical urgency
    • Time of the waiting list
    • Distance from donor hospital
  • Liver
    • Medical need
    • Distance from donor hospital 

Organs are preserved to ensure their viability. However, the time between organ retrieval and transplantation is limited. In general, the maximum survival time for preserved organs is:

• Heart, lung — 4-6 hours
• Liver — 8-12 hours
• Pancreas — 12-18 hours
• Kidney — 24-36 hours

Sadly, an inordinate number of retrieved organs do not reach their destination in time due to what experts call an antiquated system that sends life-saving organs cross-country as cargo on commercial airlines. According to an NBC News report based on an investigation by Kaiser Health News and Reveal from the Center for Investigative Reporting, between 2014 and 2019, 170 organs were discarded because of flight delays.

Sources

“Lost luggage: How lifesaving organs for transplant go missing in transit”. NBS News. https://www.nbcnews.com/health/health-news/lost-luggage-how-lifesaving-organs-transplant-go-missing-transit-n1130891 

“Organ Procurement and Transplantation Network Policies and Reports”. HRSA. https://www.organdonor.gov/about-us/legislation-policy/optn 

“How organ allocation works”. OPTN. https://optn.transplant.hrsa.gov/patients/about-transplantation/how-organ-allocation-works/ 

The national transplant waiting list is a database of all the people in the United States who are registered to receive an organ when one becomes available from a deceased donor. The United Network for Organ Sharing (UNOS) manages this list. Another name is added to the national transplant waiting list every 9 minutes. Currently, more than 100,000 people need a lifesaving organ transplant.

Once on this list, you may receive an organ quickly or wait many years to get one. Most transplant candidates wait for quite some time as there are not enough donor organs for everyone in need. Wait time is also affected by which life-saving organ is needed. Those waiting for a kidney generally wait an average of 3 to 5 years, while those waiting for a heart or lung might be matched in less than a year.

Organ allocation is not ranked by number, but rather computer-generated. Complex criteria are based upon location, medical urgency, survival benefit, and genetic compatibility of the recipient. Local patients receive preference, when possible, as the less time that elapses for organ transport, the greater chance of success. But those most in need are placed on an active waitlist and often given priority over others. Pediatric patients or prior living donors may be granted special consideration.

How do I get on the waiting list?

Once your healthcare specialist determines that you are, or may soon be, in organ failure, you will be referred to a transplant center in your area. Once there, a transplant physician will evaluate whether you qualify for organ transplantation.

There are several requirements you must meet to be placed on the national transplant waiting list. These may slightly differ depending on the organ you need, but generally, all cover some key elements. A medical team will first help to determine whether a living donor is an available option to you. You may still be placed on the waiting list even if there is a potential for one. A comprehensive physical examination, diagnostic testing, and lab studies will determine how well your organs are functioning and whether your decline warrants the need for transplantation. If not, you will be monitored and returned to the center for future testing when warranted. 

If you are still considered a potential candidate, further testing will evaluate your ability to tolerate surgery. Any signs of other life-threatening conditions like heart disease, diabetes, infections, or cancer could disqualify you. Genetic testing will also be performed, so you can be matched with a donor organ. You will meet with financial counselors to ensure that you can afford the surgery, as well as the mandatory anti-rejection medications following transplant.

A full psychological evaluation will also be conducted to rule out any mental health issues that might interfere with your ability to adjust to life post-transplantation. Lastly, the medical team will monitor whether you are following a current medical regimen to maintain the best health possible while you wait for a donor organ. Any non-compliance, like drinking alcohol while treating liver disease or substance abuse disqualifies any potential candidate.

What happens after I get on the list?

Your transplant center will not notify you when you have been added to the national transplant waiting list. If you have any questions, you should reach out to your medical team at that center. You may have the ability to register with more than one center in your area to increase your chance of receiving an organ as a multiple listing. Be aware that you must be able to respond quickly and get to any center within hours if one becomes available to you. It is up to the patient to reach out to additional transplant centers in their area. They may or may not allow you to list with them as well. 

Until it is your time to receive an organ, you are expected to follow physician’s orders and take good care of yourself. And even though it may not benefit you directly, perhaps encouraging everyone you know to become an organ donor could help someone else on the list. 

Sources 

“Frequently Asked Questions”. UNOS. https://unos.org/transplant/frequently-asked-questions/#Waiting 

“Our Global Network of Partners”. National Marrow Donor Program. https://www.nmdp.org/what-we-do/partnerships/global-transplant-network 

“Sign Up To Be An Organ Donor”. Health Resources & Services Administration. https://www.organdonor.gov/sign-up