NORTHVILLE, MI – Kimberley Davis, who grew up on a small farm near Adrian, MI, has done a lot of things in life. Now 67, she’s been a political science and journalism professor; coordinated medical programs for the University of Michigan and elsewhere; worked in Mozambique.
Most recently, she’s been a planning executive for an international IT firm. But she’s taken a leave from that job to devote herself to a cause that now matters to her more than anything:
Fighting Sickle Cell Disease, an inherited group of blood disorders that affects more than 100,000 Americans, most of African-American ancestry, and millions more across the world.
That cause matters to her so much because of two impressive young people: Mariama Walters, a 21-year-old civil rights activist who was studying to become a nurse, and her brother John Amara Walters, who at 29 was a legislative aide in the Washington office of U.S. Sen. Chris Van Hollen (D-MD.)
They both died of sickle cell disease, Mariama at 21, in 2007, and John at 29, in 2021. They were also her children — her only children. Their father and her former husband, John Walters, himself a professor, is dead too.
Now, she’s pouring her energies into fighting the disease that took their lives. “The main thing I want to achieve is greater federal investment for research, treatment and training, and to make sure everyone has access to programs, and knowledge about them.”
Raising awareness hasn’t been easy, perhaps because too many people think of sickle cell as just a “Black disease.” It’s not.
While the mutation is most common among people with ancestors from sub-Saharan Africa, anyone may turn out to have it, and it is also found in white people from Southern Europe, Hispanics and those from South Asia, according to the American Society of Hematology, the professional group for doctors who study the blood.
While the number of Americans who actually have Sickle Cell Disease is relatively small, the number of those who carry the gene for it, a condition known as sickle cell trait, is in the millions.
Kim Davis is one of those. “People with sickle cell trait sometimes suffer some of the symptoms, but not often,” and they don’t get the full-blown disease.
“It is a recessive gene. But if they have a child with someone who also has the trait, their children may get the disease.”
In her case, she knew she had the trait, but her husband, who was from West Africa, did not. Those who have Sickle Cell Disease sometimes live into their 40s and 50s if they have proper treatment. But many, like Davis’ children, do not live that long.
Those afflicted suffer from a constant shortage of red blood cells and almost constant pain, and are prone to problems including organ damage, heightened risk of infection, and major strokes, according to the Centers for Disease Control. There is much that is still mysterious about the disease. Some historians believe that it may be especially prevalent on the United States because in the days of slavery, those who carried the sickle cell trait were less likely to perish from malaria.
While there are treatments, there is still much that remains to be discovered. But there hasn’t been much done in decades. “There was a lot of interest in and work on sickle cell in the 1970s,” Davis said. “There are even tapes with (President Richard) Nixon talking to (H.R.) Haldeman about it, and maybe winning the Black vote” by doing something to address the issue.
Since then, however, there hasn’t been much, though a small cadre of researchers at the CDC have tried to collect data, and published a study in 2020 analyzing sickle cell mortality rates.
However, the issue finally has a legislative champion. U.S. Sen. Chris Van Hollen (D-MD) was deeply affected by the death of his young aide, Kim Davis’ son John, and he created a permanent paid internship in his name. Additionally, two years ago he introduced a bill, the Sickle Cell Care Expansion Act of 2020, which would have established programs to greatly expand treatment.
Unfortunately, it never made it out of committee. But Kim Davis said it is being reintroduced this month with co-sponsors, and she is determined to revive interest in it. She is using her savings and flying to Washington at least every few weeks as a one-woman lobbying operation. “My life now is being an advocate for this.”
Meanwhile, she does what she can to raise awareness about what programs do exist. “So many people don’t realize they qualify for in-home nursing care, for example, or are eligible for FMLA,” the federal Family Medical Leave Act, she said.
“This is not just a Black story. It is an American story. We have to see that not treating these folks properly is a tremendous loss for the country, for all of us,” she said, with the sad smile of someone who doesn’t want another parent to suffer the loss she has.
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