It is hard enough for a potential transplant recipient to get on the waitlist, let alone maintain and manage their waitlist status. The process of getting tests updated can be challenging for some patient populations, particularly those with language barriers and lack of access to transportation.
When patients are notified that their testing is out-of-date– often via mail– they may call the transplant center looking for further guidance. However, many centers are understaffed and may not be able to provide adequate support in a timely manner.
The responsibility on patients to maintain up-to-date testing is seen as a way to help increase patient autonomy and choice but this system underserves already disadvantaged patients who may require further support and education.
While most transplant centers try not to de-list or suspend patients from the waitlist if tests or other system data is out of date, many patients may take a longer time to get listed, miss out on organ offers, or even be de-listed due to a lack of updated information, also referred to as “lack of compliance.” If de-listed, recipients must begin the long process of redoing all evaluations required to get listed to begin with (e.g., medical, psycho-social, financial, specialist referrals and testing, etc.). While some programs do connect recipients with social workers to help them navigate testing, transportation, and more, the process is not standardized across centers.
Patients with access to transportation, financial resources, and scheduling flexibility may be listed with multiple transplant centers across numerous geographical areas and have no issue keeping tests up to date for each transplant center. This approach of being listed with multiple transplant centers is seen as a major advantage to getting an organ sooner in the United States, but also may contribute to inequities.
Solutions to increase transplant system equity should not only make it easier for transplant centers to identify and automatically follow-up on out-of-date testing, but also support patients in managing their data, identifying the testing center closest to them, and accessing necessary support.