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Uncovering Inequities in the US Organ Transplant System

While organ transplants are a major medical innovation that has played a hand in improving patient outcomes, numerous inequities in the system fail recipients and donors.

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- The organ donor and transplant system in the United States is a convoluted and complex series of steps, guidelines, and decisions. There are many different inequities in the organ transplant system. Understanding the many steps to match patients with organs is essential to equip patients and providers with the proper knowledge to care for their team.  

According to the United Network for Organ Sharing (UNOS), 105,922 people in the US need an organ transplant. As of June 2022, 10,286 donors allowed for 20,663 transplants to be performed.  

According to UNOS, the first transplant was successfully performed in 1954 with a kidney. Since then, many more organs have been transplanted, and the procedures and matchings systems have been advanced.  

There are two sides to the organ transplant process: the donor side and the recipient side.  

Donor Analysis  

According to New York Presbyterian, donor referral is one of the first steps in the organ transplant process. Around the time of the donor’s passing and with the consent of the next of kin, the donor is evaluated to determine their potential.  

After death, there must be a formal declaration of death. The two instances include cardiac death and neurological death. Based on the condition of each organ and the families’ wishes, providers will determine which organs can be donated. 

Using UNOS, each donor is matched with a list of potential matches. As stated in the article from New York Presbyterian, “this registry changes constantly as new patients are added to the list, and as other patients either receive a transplant, die waiting, or due to a change in medical condition, are removed from the list.” 

The organs are then preserved and flushed free of blood using a cold preservation solution. Organs then go on ice in sterile containers and are sent to the recipient as fast as possible.  

UNOS and Recipients  

As previously mentioned, the UNOS list is the registry that matches donors and recipients. The UNOS website includes multiple aspects of the organ transplant process that they are involved in, including the following: 

  • monitoring transplant waiting list and matching patients  
  • storing data on transplants  
  • facilitating fair and safe allocation of organs 
  • assisting patients, providers, and families 
  • providing educational material on the process

According to UNOS, narrowing down matches involves looking at factors such as blood type, height, weight, and other clinical assessments that determine whether a patient is likely to accept the organ.  

For example, organ size is a major contributing factor to matching donors and recipients.  

“Proper organ size is critical to a successful transplant, which means that children often respond better to child-sized organs. Although pediatric candidates have their own unique scoring system, children essentially are first in line for other children’s organs,” states the UNOS site.  

Additionally, distance factors into where an organ can be donated. Closer recipients are higher up on the match list as organs are only viable for a certain length of time following procurement. 

In addition to those criteria, matching and list positions are determined by survival benefit, medical urgency, and more. 

Transplant Equity 

UNOS claims that “personal or social characteristics such as celebrity status, income, or insurance coverage play no role in transplant priority.” Although that claim may be valid regarding getting on the actual list, social factors have undoubtedly played a role in access to transplant care.  

Many people attribute the lack of access to transplants to the lack of organs available. While, in part, the lack of organs contributes to the never-ending list of people waiting for organs, other aspects are at play.  

Researchers in the AMA Journal of Ethics state, “Even if there were a sufficient supply of suitable organs for transplantation, the reality is that the uninsured, underinsured, and the poor do not currently have an equal opportunity to fully realize the benefits of organ transplantation because they do not have equal access to very expensive and necessary post-transplant immunosuppressant medications.” 

Organ Transplant Costs  

According to the National Foundation for Transplants, patients must provide proof that they can cover approximately 20% of the cost of their transplant surgery before being placed on the UNOS list. Based on the data on their website, that 20% can range from $69,400 to $276,480, with a heart transplant being the most expensive.  

These numbers assume the patient has insurance that only requires them to pay 20% out of pocket. The estimated overall charges for a heart transplant are $1,382,400.  

On top of those billed charges, there are also expenses, including travel, anti-rejection medications, and follow-up appointments. This procedure often places an enormous financial burden on recipients and their families.  

Based on information from the AMA Journal of Ethics, financial barriers are one of the most notable hindrances to access to transplant care. In addition to the actual in-hospital procedures, post-transplant medications are necessary to prevent organ rejection and maintain organ health; however, they are very costly.  

“In some cases, these costs prevent patients who are otherwise medically good candidates for transplantation from making it onto the national deceased organ donor waiting list, either by their own choice or based on the recommendations of their healthcare team,” stated researchers in the AMA publication. 

Racial Inequities 

A publication in Transplantation found that Black patients were 25% less likely to be considered for the UNOS list than white patients.  

The study in Translation focuses on kidney transplantation and the racial inequities associated with it. The investigators found that race was a significant social determinant of health regarding kidney transplants.  

“The fact that racial disparities persisted even after adjusting for comorbidities that might exclude a patient from transplant eligibility suggests that unconscious provider bias may play a role in whether an individual achieves waitlisting and ultimately transplantation,” concluded the researchers.  

However, racial bias is not just unconscious. There are several systemic biases in the healthcare system that impact organ transplantation.  

The estimated glomerular filtration rate (eGFR) is one of the main tools used to assess kidney function. In turn, eGFR is often a determining factor in whether a patient is recommended for transplant. However, some hospitals implement a racial adjustment in the eGFR calculation.  

According to the National Kidney Foundation (NKF), “race was originally included in eGFR calculations because clinical trials demonstrated that people who self-identify as Black/African American can have, on average, higher levels of creatinine in their blood.”  

Despite current data showing that race should not be a part of eGFR calculations, many hospitals, and other institutes still incorporate it into their analysis. Organizations such as NKF and the American Society of Nephrology have been working to implement eGFR calculations without race nationally.  

Other Barriers to Care 

An investigation in BMC analyzed 227 studies looking for disparities and inequities in transplantation. The study found that patients with private insurance were more likely to be referred for a transplant than Medicaid recipients.  

The study also found that there was a gender inequity in transplant care. In the publication, the writers say, “children were perceived as liabilities for women, and family dynamics and finances were perceived to be of greater importance when spouses were deemed to be inadequate supports for the women.” 

Researchers anticipate that increased knowledge, trust, and communication between patients and providers may help overcome the current barriers to care.  

“Ultimately, an equitable system would allow all patients who have an end organ condition that can be helped by transplant the same access to transplant. In addition to this, the change would ideally be ‘effortless’ to patients so that people, who are already burdened with disease, do not have to make any additional effort to recognize the benefit of this change,” concluded the researchers.  

Overall, organ transplants are a major medical breakthrough that has helped save the lives of many. Despite its benefits, the system for organ transplants has many disparities that must be addressed by all aspects of the healthcare system.