Editor’s note: Opinions expressed by authors do not necessarily reflect those of AAMC or its members.
In the United States, Black people are 4 times more likely to Although they are just as likely to develop kidney failure as white people, they are far less likely to receive a life-saving kidney transplant. Black people also have the highest incidence of heart failure, but undergo a heart transplant at lower interest rates than whites. These are tragic inequalities.
When I think about these realities, I think of Mr. Richardson (not his real name). His story shines a light on the system to which he entrusted essential medical care to reduce the risk of developing kidney failure. It also provides insight into how systems that support organ transplants can best serve Mr. Richardson and people like him.
More than a decade ago, I met Mr. Richardson as an outpatient at an urban regional medical center in the Northeast. He had come in to have his blood pressure checked and his medicine refilled. When I reviewed his records, Mr. Richardson was compliant with his medication regimen, kept up with appointments, and volunteered that his blood pressure was normally high. A 54-year-old non-smoking black man with no other known comorbidities, he disclosed that his mother and two siblings have high blood pressure and kidney failure and are on dialysis. He tried everything possible to get healthy, but eventually predicted he would also need dialysis.
Although Mr. Richardson has been a patient of ours for many years, this was the first time I had met him. Our clinic was understaffed, served primarily low-income patients, and struggled to provide continuity of care. Mr. Richardson’s blood pressure that day was 150/102, far short of his recommended target of 130/80. As far as I know, he has not had any recent blood or urine tests ordered to monitor for signs of kidney damage related to high blood pressure. He had been on the same treatment for almost two years.
In addition to adjusting Mr. Richardson’s medication dosage, I ordered laboratory tests and scheduled a follow-up appointment with his primary care physician in four weeks. But after finishing the appointment, many questions were swirling in my head. Did anyone adequately explain to Mr. Richardson the importance of controlling high blood pressure to protect his organs? Had the clinician given up on getting his blood pressure up to target? Have you considered referring him to a nephrologist? Have you considered checking for early signs of kidney damage to prevent it from getting worse? What kind of care did his family receive?
I was concerned that Mr. Richardson was heading toward potentially avoidable consequences, such as kidney failure. One disturbing fact about the disparities in the U.S. transplant system is that black patients who develop kidney failure are more likely to remain on dialysis than receive a transplant, while those who have a successful transplant continue on dialysis. This means that they will live much longer than the patient.
As an internist, I believe that the primary care system is the starting point on the continuum of care through which some patients progress from health to problems such as kidney failure or the need for a transplant. Our clinic’s role was to do everything we could to help people prevent the development of chronic diseases such as high blood pressure and minimize negative outcomes such as kidney damage. However, as has happened elsewhere, several features of our practice impeded high-quality care.
As an example, some physicians expressed frustration when a patient’s poor performance in controlling hypertension was brought up at a quarterly quality improvement meeting. “The problem is not us, but our patients, who have difficulties with us,” they argue, not taking their medications regularly, not eating enough, and not being physically active. hypothesized that this, and similar behaviors, were the real reason why many patients’ blood pressure did not improve. Some referred to our clinic as a “typical clinic” that provided at least better treatment than nothing. These attitudes, which often persist, reinforce stigma, prevent important individualized care, and reinforce the idea that more can’t be done for low-income and minority patients. .
Several in our clinic acknowledged that improving care required making changes that other health centers had already adopted. We needed to improve continuity of care, organize care teams, communicate in people’s preferred language, and offer more convenient appointment times. We also needed to improve our ability to collect and analyze data about care processes and outcomes. Data also needed to be analyzed by race and other sociodemographic characteristics to address disparities.
Over the past decade, we’ve seen the adoption of policies and practices that are exactly what we wanted. Improving primary care performance at many health centers across the United States. I didn’t know what happened to Mr. Richardson, but I believe these improvements helped many people like him. Of course, more needs to be done to ensure that people like Mr. Richardson ultimately don’t need a transplant, but the lessons learned from these improvements could lead to a more equitable organ transplant system. may be useful for the development of
“Black people are four times more likely to develop kidney failure than white people, but they are much less likely to receive a life-saving kidney transplant.”
In the United States, the route to organ transplants is complicated, full of potholes that block access and crevasses that people can fall into and never emerge from. The early stages of that course include primary care, specialty care, and hospital care, all of which can play a role in a patient’s clinical assessment, disease management, education, and referral for transplant evaluation.
Addressing inequalities in transplantation requires improving access to care for all people along the transplant pathway, starting with access to high-quality primary care and throughout the process, including post-transplant. A person’s race or other characteristics should not determine the quality of care that the system provides at any point along the pathway.
I recently had the opportunity to serve on a committee for the National Academies of Sciences, Engineering, and Medicine that produced a report released earlier this year. Delivering on the promise of equity in the organ transplant system, It details the many barriers to fair and effective organ transplantation and documents substantial research demonstrating these barriers for Black patients and others.
Among the report’s findings, primary care physicians and specialty clinicians identify white patients Black patients are often selected as better candidates for kidney transplants than black patients; The probability is half They will be placed on the kidney transplant waiting list like white patients. they again, Transplant waiting time That is One more year They are more likely to die while on the list than white patients face.Additionally, some black families may not be approached They say they may not view interactions with white families favorably in the same way or as often as white families when it comes to organ donation requests.
Transplant disparities are most well documented among Black kidney disease patients, but are more prevalent among other races and ethnicities, people with physical and cognitive disabilities, undocumented immigrants, low-income patients, women, and rural patients. is also having an impact, and disparities also exist in other people’s transplants. Organs too.
“In the United States, the path to organ transplants is complicated, full of potholes that block access and crevasses that people can fall into and never emerge from.”
All agencies involved in organ transplant waiting lists and distribution are connected through the Organ Procurement and Transplant Network (OPTN), managed by the nonprofit United Network for Organ Sharing. OPTN’s federal contract is up for renewal in 2023, so this is an important opportunity to strengthen accountability requirements, including ensuring fairness.
Promoting equity requires that health systems and the people who work within them recognize and minimize bias, racism, sexism, ableism, and other ‘isms’ that devalue certain groups. is needed. Stereotyping and blaming patients leads healthcare providers to neglect patients and communicate poorly with patients. Thorough and effective communication is critical because it builds trust and helps patients become partners in making informed decisions about their care. Equitable transplant care must also incorporate recognition of disabling social determinants of health and addressing patients’ health-related social needs.
It is also important for clinicians to offer transplantation as a treatment option to potentially eligible patients without triaging them from transplant evaluation, waiting list, or organ donation based on social characteristics. More health care providers need to be sensitive to the tendency of clinicians to preferentially offer transplants to people who are white, non-disabled, or belong to a higher socio-economic class.
Performance improvement approaches that have been successful in primary care may be the beginning of a roadmap for transplant-related change. First, OPTN must use certain standardized data to measure participating institutions’ performance and improvement. Additionally, that data must be disaggregated by race, ethnicity, language, and other sociodemographic factors. Assessing areas such as patient access (including numbers of referrals, evaluations, and people on waiting lists), number of patients receiving transplants and their survival rates, and number of donated and unused organs transplanted There is a need to.
As new metrics are developed, accountability must be given to patient and family input in their development, followed by data transparency and public reporting. When OPTN organizations review and report on their performance, they must invite members of groups experiencing inequalities to participate in determining how to redress them. Participation also needs to be meaningful, not performative.
“As health care providers, we can take responsibility for quality and disrupt the organizational culture and individual behaviors that lead to biased and discriminatory care. [and] Use data to be honest about inequalities in our practices. ”
These recommended interventions are more likely to be successful if everyone has equal access to health care. Access is supported if everyone has comprehensive health insurance. When social needs that affect health, such as proper nutrition and shelter, are met. Where there are no geographic barriers to primary transplant, specialty transplant, or specialty transplant treatment. And when drugs become affordable.
Of course, as many people, including health care providers like myself, continue to work towards these broader goals, we will continue to work to improve the parts of the transplant pathway that can be changed now. Must be.
As health care providers, we hold ourselves accountable for quality, disrupting organizational cultures and individual behaviors that lead to biased and discriminatory care, and leveraging data to be honest about inequities in our practices and address inequities. You can work hard to remove equity. Importantly, we need to engage with patients as partners in their care, not as reasons why we can’t do better for them.
Many disparities in the transplant system are unfair, avoidable, and unjust. None of us should succumb to the idea that something is better than nothing. Better than nothing is not enough. Our patients deserve equity.
