New pain medications are still widely inaccessible to individuals living with sickle cell disease - Video

Sickle cell disease (SCD), a rare chronic, progressive, life-threatening, inherited blood disorder, often affects individuals with chronic pain that can be debilitating to their quality of life. Yet less than 4% of people living with SCD who experience chronic pain episodes have prescriptions for newer FDA-approved pain-relieving drugs, according to a new study published in Blood Advances. Further, researchers found that less than a third of patients with pain episodes have prescriptions for hydroxyurea, a drug commonly taken to reduce pain caused by sickle cell disease.

Sickle cell disease affects more than 100,000 Americans and an estimated 100 million persons worldwide. According to the Centers for Disease Control and Prevention (CDC), Sickle cell disease affects one out of every 365 Black or African American births and one out of every 16,300 Hispanic American births.

The condition can cause severe pain, joint and organ damage, and stroke. Advances in Sickle cell disease research have prompted the development of groundbreaking therapies, allowing 93% of young people with Sickle cell disease to live into adulthood, a statistic marking tremendous progress in disease interventions over the last few decades.

Researchers found that hydroxyurea was the most prominently prescribed medication (31.5%), followed by l-glutamine (3.2%), then crizanlizumab (2.3%) for vaso-occlusive pain. Voxelotor is only approved for people with lower hemoglobin levels and was prescribed to 2.9% of the population. Authors also found that patients living in rural areas had significantly lower use of medications approved for pain episodes, compared to those in non-rural communities. Finally, less than 3% of the population used any type of combination therapy to treat pain, while 0.3% used combinations of these newer FDA approved treatment options.

A lot of patients, especially those living in rural areas, do not always have access to a hematologist. And then from the patient standpoint, providing patient-friendly material that allows them to be knowledgeable about their disease and advocate for themselves can help improve care for this population.”

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New pain medications are still widely inaccessible to individuals living with sickle cell disease, JOURNAL: Blood Advance