August 1st was National Minority Donor Awareness Day, a day to bring recognition to the need, especially among minorities, for more organ, eye, and tissue donors. Another focus of the day includes honoring minorities who have donated. While providing education, the day also encourages others to register as donors. At the same time, part of being informed includes practicing good health habits. The healthier the population, the fewer transplants needed.
Within the African-American, Asian, Hispanic, Native
American, and Pacific Islanders-American communities, there is a serious shortage of transplants. Minorities make up 57% of those on the organ waiting list. Due to chronic conditions, minority patients see an increased need for transplants affecting the heart, kidney, pancreas, and liver.
Hispanic Americans are 1.5 times more likely to have kidney failure.
Black Americans are 3 times more likely to have kidney failure.
Native Americans are 4 times more likely to have kidney failure
Asian Americans are 4 times more likely to have hepatocellular carcinoma, one of the most common indications for liver transplant.
An understanding of how race, ethnicity, geography, education, and income impact one’s access to health services can provide valuable insight to health policy experts and advocates.
Due to racial and economic health disparities, Black people have higher rates of diabetes and high blood pressure – conditions known to put patients at risk for organ failure – than the white population. Organ transplantation positively impacts patient survival, but greater access is limited by a severe donor shortage. African Americans make up the largest group of minorities in need of an organ transplant.
During the first signs of kidney failure, Black people are consistently less likely than white people to get on the wait list. In order to get wait listed for an organ, patients must first get referred by a physician and then evaluated by a medical team to assess whether or not they are a suitable candidate. Since there is a far greater demand for transplantable organs than there is a supply of them, transplant centers must make difficult choices about which of their patients to refer (or not) to the organ waiting list. As illustrated below, this evaluation system is tainted with bias regarding race and socioeconomic status.
A Black organ recipient doesn't have to have a Black donor. But they would be more likely to have a successful match - based on certain genetic markers and antibodies - if more Black donors were available. The percentage of Black Americans who donate organs has risen since 1988, but there is still an outsized need.
Why are the disparities so great?
Barriers to deceased donation among minorities include:
lack of awareness of transplantation
religious or cultural distrust of the medical community
fear of medical abandonment
fear of racism
Mistrust of the medical community among African Americans is not uncommon, and not without historical justification.In the Tuskegee syphilis experiment, Black men in Alabama were promised free medical care, and then unknowingly signed up for a long-term research study into the effects of syphilis. When a cure became available, the men were denied treatment so that the study could continue.
Henrietta Lacks went to John Hopkins for cervical cancer treatment, where a doctor took samples from her cervix and used them to develop one of the most-used cell research lines - all without her permission or knowledge.
Diseases that would often make people ineligible to become a live donor—such as high blood pressure, diabetes and kidney disease—present a higher burden now than 20 years ago and disproportionately affect Black and Hispanic populations.
Dr Dubay conducted focus groups to find out why there was such disparity between black and white donors. They found that many African Americans cited fear that their organs would not be usable due to high blood pressure, heart disease and other prevalent aliments in the black community.
Waitlist Zero, an advocacy group dedicated to promoting living kidney transplantation provides educational information to the general public to increase the donor candidate lack of education and to spread its benefits and debunk common misconceptions about living organ donation.
Blood donation is a vital part of the donation process and is something that is just as important as organ donating. Due to the increasing surge of blood shortages are contributing to delays in critical blood transfusions for people in need.
Sepsis which is poisoning of one's blood can cause a person organs to shut down. Sepsis moved with a terrifying speed in the case of my mother who was diagnosed with septic shock in 1996. Despite the aggressive treatment my mother received from the hospital which included antibiotics, intravenous fluids, and an escalating flow of oxygen for her alarming low blood pressure and oxygen readings, my mother was already entering the final and most life threatening stage of sepsis called septic shock.
I recall how unresponsive and sick my mother looked in the intensive care unit. Her eyes were yellow and her skin had turned gray. When the doctors called my father to tell him there was nothing more they could do, it was then that I began to realize just how life-threatening this was. After my mother received a series of blood and platelet transfusions it really helped her turn a corner and restore some of those vital functions of breathing and circulation and healing. The blood transfusion was an important part of her turning point in her illness.
Blood is something that can not be manufactured. It has to come from volunteer blood donors, like the ones who helped my mother. When the demand outweighs the supply it can have devastating impacts. What seems like a very small task to show up at a blood center for 30 or 45 minutes and give some blood has decades of impact on someone else's life and every life that the person touches.
Increasing diversity, equity and inclusion in governance and leadership will support hospitals and health systems to reflect communities they serve and most importantly to reduce health care disparities.
The Self Care Network LLC works with hospitals and health systems to promote DEI Strategies in healthcare organizations. By increasing DEI efforts healthcare organizations have a unique opportunity to improve the lives of those providing and receiving care.
Given that this is such an important responsibility, it can be difficult to know where to begin. The following strategies are key factors to consider as healthcare organizations approach DEI efforts.
1. Internal Assessment
Thoroughly assessing your organization’s culture in relationship to DEI will help determine how well you’re currently performing and provide an indication of how far you need to go.
Example: Using patient and employee surveys or focus groups can help organizations learn more about the current perception of DEI.
2. Identify Measurable Goals
By selecting 2-4 goals that can be focused on over a fixed time period, your organization can implement targeted interventions and best practices to drive the success of DEI.
Example: You can do this by creating a goal to increase the number of staff members that are bilingual by 15% in one year to provide better care for non-English speaking patients.
3.Include Everyone Not Just Leadership Staff
Understanding the organization-wide reach of DEI efforts is an important element. While senior leadership plays an obvious role in recruitment and hiring practices, don’t forget about the less obvious roles and departments that indirectly affect DEI.
Example: You can do this by administering employee feedback surveys which provide a safe space for all employees to contribute
6. Educate effectively
Providing education as a requirement for employees, a diversity equity and inclusion 101 training is a great place to start.
Example: You can make required education as part of new hire onboarding and orientation. Additional courses can also be included and scheduled for follow-up training as needed.