Exposure Can Lead to Support for Better Treatment

by Nancy Rene, Board Member – LA South Hope Foundation

On May 23rd, 2021 The New York Times published an important article on sickle cell disease (SCD). It tells the story of two sisters, Kyra and Kami, who have SCD. The article describes their courage and unfortunately the many instances of poor care they have received. This is a prime example of what we in the sickle cell community experience every day. These stories must be told—and then amplified by sharing—if we are to make any progress in improving medical care and establishing consequences of doctors and hospitals who fail to follow evidenced based guidelines.

Kyra and Kami’s story is available from The New York Times, but in order to read the entire article, a subscription is required (click here to read). Here are a few highlights:

The reporter notes that a study was begun in 1994 to discover whether or not transfusions would reduce the risk of stroke, but the health care system has failed to consistently use this knowledge. In this case, the girls’ mother was not told of the Transcranial Doppler ultrasound (TCD) screening that could have identified the risk of stroke.

The Times also notes that in diseases where patients are predominantly white, like type I diabetes and cystic fibrosis, a nurse case manager is assigned who helps manage all of the medical appointments needed to prevent complications.

In my own family, my grandson had a stroke when he was 9 months old. He had an excellent medical team that helped us through regular blood transfusions. Quality of medical care seems to depend a lot on where you live.

The article goes on to discuss a study by Dr. Julie Kanter, a hematologist at the University of Alabama at Birmingham. In reviewing medical records at 28 medical centers, she found that only 30 to 75 percent of the children got the recommended TCD screening.

Guidelines are published but ignored, whether it’s for TCD or prescriptions for hydroxyurea. Dr. Francis Collins, director of the National Institutes of Health is quoted as saying the lack of attention paid to sickle cell historically “is one more reflection of the fact that we do not have equity in our country.”

Let’s hope that this kind of in-depth reporting continues so that there is a ground-swell of support for better treatment for those with SCD. Please share Kyra and Kami’s story with the people in your community.

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Nancy M. René
Co-Founder, JVT Advocates
Los Angeles, California, United States