Dear CIRM,
World Sickle Cell Day is this Saturday June 19th. The goal of this day is to raise awareness of the disease and the challenges people face.
I greet this day with mixed feelings. I am grateful to CIRM for its work toward a cure. I applaud the doctors, researchers, and families in the sickle cell community. I also thank those who fought for CIRM’s original funding. Yet waiting for a cure is hard.
While I wait, I worry. I worry about friends who do not receive good care. They struggle to find knowledgeable doctors or access approved medications. They walk into emergency rooms hoping for help, knowing they may be mislabeled as drug seekers and sent away in severe pain. Some die after years of poor treatment.
Understanding sickle cell care today is like our understanding of police brutality before George Floyd. We hardly remember Rodney King or Eric Garner. We knew something was wrong, but we fell into denial after each headline.
That is where we are with sickle cell disease. We may watch heartbreaking stories, yet it is easier to believe care “can’t be that bad.” We forget that people are dismissed and denied treatment. We use the term “structural racism” without grasping its true meaning.
While I wait, I must acknowledge that change is coming. We have a Sickle Cell Data Collection Project in California that helps us track healthcare for sickle cell disease. We can use this data to point to structural weaknesses and address health disparities. NASEM, the National Academies of Sciences, Engineering, and Medicine, published a major report with significant recommendations for improving sickle cell care. Many scientists, researchers, and advocates contributed to this landmark study, detailing what has gone wrong in health care and how to improve it. And of course we have CIRM. I am very thankful for the leadership and pioneering work of doctors Donald Kohn, Matthew Porteus, Mark Walters, and Joseph Rosenthal, who are using their knowledge and experience in this fight.
When we have successful research on stem cell transplants for sickle cell disease, many of us with sickle cell family members will want to relax, but we can’t forget those who may not be able to get a curative transplant. I hope Dr. Niihara at Emmaus and Dr. Love of Global Blood Therapeutics will continue their important work finding effective treatments. We must continue this fight on all fronts.
World Sickle Cell Day will come again next year. Let’s see what it brings.
A sickle cell grandmother,
Nancy M. René
