'Lead with love'

Fifteen-month-old Ellie had been diagnosed with aplastic anemia – a rare condition that causes the body to stop making enough red blood cells. The little girl staying in the Dana-Farber Cancer Institute transplant unit was sure the friendly man she saw, who played hide-and-seek with her, was one of her doctors. But the man was a custodian.

He was also Black and Hispanic. Ellie was far too young to know how disturbingly rare it would be for someone who looked like him to wear a white coat. According to the Association of American Medical Colleges, only 5% of doctors in the United States identify as Black, and 5.8% are Hispanic.

The story was told at a town hall Thursday by Dr. Katherine Dallow of Blue Cross Blue Shield to illustrate the dire need for more diverse representation in the medical community. And the pandemic has only made this need more painfully obvious.

“COVID-19 has spotlighted the ugly truth that racism pervades our health care system even in more ways than we ever knew,” said Dallow, vice president of clinical programs and strategy. “The causes of health disparities and equity are deep, and include determinants of health such as poverty, housing, education, nutrition, and racial bias.”

The Gift of Life Marrow Registry – dedicated to addressing the lack of diversity in marrow registries – held the event with leaders of color and physicians to address potential ways to address ongoing inequity and discrimination in health care.

“Disparities in healthcare outcomes extend far beyond our mission to find a cure for those suffering from nearly 100 diseases, including blood cancer, immune disorders and sickle cell, yet intertwine with our goals at the same time,” said transplant survivor Jay Feinberg, CEO and Founder of Gift of Life. “As an organization founded to solve one health inequity, lack of diversity in the worldwide registry, Gift of Life is taking action to address the larger issue that the pandemic has further exposed."

Watch the Gift of Life Town Hall

The Centers for Disease Control and Prevention reports that COVID-19 infection rates are 2.8 times higher in the Hispanic or Latino and American Indian or Alaska Native populations, and 2.6 times higher for Black populations.

“Blacks and Latinos and indigenous people across this country and in every age group, including young people, have been disproportionately affected by the coronavirus,” said Angela Clark, diversity and inclusion leader of Fidelity Investments, who moderated the town hall. “These enduring health disparities have been fueled by decades of discrimination.”

Health care leaders must think more boldly about how to tackle the problem of health inequity, which Blue Cross has already begun to do, Dallow said. The company made a $1 million grant to the New Commonwealth Racial Equity and Social Justice Fund, and plans to gather new data from members while working with health care providers to understand patterns of inequities, and introduce targeted incentives and enhanced support to reduce disparities.

Clinicians must also be sensitive to cultural differences while treating patients, said Dr. Ken Duckworth, chief medical officer of the National Alliance on Mental Illness and medical director for behavior health at BCBSMA.

The stigma surrounding mental health in communities of color remains a massive barrier to treatment, he said. Instead of approaching the patient about a potential mental health issue, focus on individual symptoms, like lack of sleep.

“You don’t have to lead with ‘I think you have this mental health condition,’ which carries stigma,” Duckworth said. “Lead with love and stick with things that you can both see.”

Dallow and Duckworth both stressed the importance of telehealth for disadvantaged communities, to make both physical and mental health care more accessible. Blue Cross has covered more than 1 million telephone and video medical and mental health visits at no cost to members during the state of emergency.

Racial disparities go beyond access issues and lack of representation in the medical field. As Feinberg noted, there is also a dearth of diversity among bone marrow donors – for a range of reasons, including an earned lack of trust in the health care system among communities of color. Marrow transplants, also known as blood stem cell transplants, are vital treatment for a range of illnesses, including certain types of cancer, and are the only known cure for sickle cell anemia, an inherited illness that most commonly affects people of African descent.

“If you think about those who join a registry, it’s people who are safe, people who have money, and people who can take time off work,” said town hall panelist Dr. Joseph H. Antin, Jock and Bunny Adams Chair in Hematology at Dana-Farber Cancer Institute. “The problem is that registries are disproportionately Caucasian.”

Kamiya M.N. Parkin, president of the University of Massachusetts Boston NAACP Chapter, encouraged other young people of color to study medicine to help bridge the health disparity gap. In 20 or 30 years, she said, it’ll be people in her age bracket who are at the forefront of government and medicine. She also hopes more people will consider donating blood stem cells, a relatively easy process that is often overdramatized on television and in movies.

Those who want to get involved in other ways can join the NAACP – which anyone can do, regardless of race or ethnicity, she said.

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