Patients who experience organ failure need a transplant to improve their odds of survival and to achieve a better quality of life.
However, getting an organ transplant is often accompanied by several challenges, many of which can be attributed to factors like the state of an individual’s living circumstances, their economic status and where they were born.
As a result, many racial and ethnic minorities, such as African Americans, Latinx individuals and Native Americans, must unjustly wait longer for a much-needed new organ – or never receive one at all because of these barriers to care.
Research shows that these disparities are avoidable, especially with changes at the institutional level.
Which groups are less likely to get a transplant?
Transplant trends from the United Network of Organ Sharing indicate that approximately 113,600 people are in need of a lifesaving solid organ as of June 2019. The majority have been diagnosed with kidney disease and liver disease.
The most recent data shows that, in 2016, the rate of kidney failure was highest among minority groups. For example, compared to whites, kidney failure was 9.5 times higher among Native Hawaiians and Pacific Islanders. Latinx individuals were over 50% more likely to be diagnosed with kidney failure than those who did not identify as Latinx.
Although minorities are more likely to be diagnosed with kidney failure, they are less likely to be transplanted. The majority of transplants in the U.S. go to whites.
What’s causing these disparities?
A patient has to undergo several steps before they can receive a transplant.
These steps include a physician deciding that a transplant is medically suitable, the patient demonstrating interest in a transplant, a referral to a transplant center, completion of a pre-transplant evaluation and identification of a suitable living donor.
At each point of the transplant preparation process, there are opportunities for barriers to occur as a result of patient, provider, community and institutional factors. Together, these potentially create disparities in access.
Income level may play a role. Patients with organ failure who experience poverty, for instance, may face challenges covering the cost of their insurance co-payments, especially when they do not have comprehensive insurance or private insurance.
Literacy issues, such as gaps in formal education or English as a second language, may also impact a patient’s ability to understand the medical terminology involved in their treatment. This would affect their ability to communicate effectively with their providers.
Limited knowledge of the benefits of transplantation can also affect patients’ ability to access transplants. Patients who are unaware that transplantation is the preferred treatment may not complete the steps to transplant and instead remain on dialysis.
Providers can also play a role in limiting access. For example, doctors may not provide patients with the referral they need or wait longer to provide it.