Adrienne Shapiro, patient advocate, co-founder of the Axis Advocacy SCD
Her story: Like the three previous generations of mothers in her family, Adrienne Shapiro gave birth to a child born with sickle cell disease. Yet the news came as a complete surprise—not because she was unaware of her family history, but because she had received a false negative result from her sickle cell disease/trait test. It wasn’t until her daughter Marissa was six months old, and her family got word of her diagnosis in a letter from the California New Born Screening Program, that she knew. “It was shocking to receive the diagnosis in the mail. We did not believe it at first.” The confirmation marked a turning point in Shapiro’s life. She now had a single goal – keeping her daughter Marissa alive until science found a cure. She became a patient advocate and co-founded the Axis Advocacy SCD patient education and support website. A vocal activist for stem cell research, she speaks on behalf of the California Institute for Regenerative Medicine’s (CIRM) investments in early stage research and clinical trials. In January, Shapiro was awarded a Stem Cell and Regenerative Medicine Action Award at the 2018 World Stem Cell Summit.
Unimaginable hurdle: In 1986,Marissa, Shapiro’s daughter, was around four, when she suffered a serious health crisis, and her dad rushed her to the nearest hospital. Shapiro arrived on the pediatric floor to find the attending doctor at his desk looking up sickle cell disease in his medical book. She gave him the number of Marissa’s hematologist, but he refused to call him—or take his call, even though Marissa was rapidly deteriorating. Why? “Because they did not work at the same hospital,” Shapiro said. After several hours, Shapiro picked up her daughter, IV bag hanging over her shoulder, and after much commotion, managed to get her out and to her hospital and her own doctor. The experience taught Shapiro about the chasm between doctors and hospitals, even those in the same area. She also learned “you cannot be passive when it comes to your child’s care. I could not be nice, I could not be ‘young’, I could not be weak, and neither could she.”
Her motivator: “My mother. Watching how she took care of my brother [who has sickle cell disease], and her belief that science would one day cure sickle cell disease, gave me the motivation I have today.”
Her biggest dream: That everyone with the disease has access to evidence-based care—and receives treatment without judgement. “A smaller dream is that there will be housing for older adults living with SCD. I fear what will happen to children like mine once the parents pass away.”
Why she is optimistic: Because she believes stem cell research will one day lead to a cure. She hopes families’ participation in stem cell clinical trials will improve the odds for many more patients when such a cure becomes available. For now, she said, “I am thrilled each day when I look at how the medical, research and policy communities have embraced us, as family members and patients.”