After Seeing Years of Progress in Treatments, Patient With Sickle Cell Disease Worries About Future

As a baby, Erica's tears and cries of pain alerted her parents that something was very wrong. Their search for answers resulted in multiple visits to different doctors. The answer came when Erica was 2. “They tested me for everything and that’s when they discovered I have sickle cell anemia, and it’s the very severe kind.” Erica was diagnosed with hemoglobin SS, which means most, if not all, of her hemoglobin is abnormal, resulting in significant pain, chronic anemia, and strokes. “It’s been a challenge,” said Erica.

The severity of her condition meant Erica often missed school while growing up, and she has faced frequent hospitalizations throughout her childhood and into adulthood. While she graduated college with a Bachelor of Science degree in biology, Erica has not been able to pursue a full-time career because of her health challenges. For Erica and other SCD patients in similar situations, anticipated Medicaid work requirements are a concern.

Erica, the mother of a teenage daughter, relies on Medicaid for her access to care, which includes a regimen of 12 pills in the morning and four at night. She also undergoes apheresis, an automated red blood cell exchange, every three to four weeks. “If it wasn’t for Medicaid, I wouldn’t be able to afford the treatment. Medicaid is very important to me, as well as others like me. We have to have it to live.”

Erica is also unnerved by the cuts at the National Institutes of Health, which has funded research into a host of blood diseases and disorders, including SCD.

“Honestly, I'm afraid. I'm scared,” she said. “It has taken years to get even this far with treatments for sickle cell disease. And now it's like we don't know what we'll face tomorrow.”