About 100,000 Americans have sickle cell disease (formerly known as sickle cell anemia). Most of them are black. And many of them have faced challenges from the health care industry in getting their condition addressed.

Sickle cell disease can cause chronic pain, multi-organ failure and even lead to strokes. Kaiser Health News reports that patients and their families say the search for treatments is “slow, underfunded, ineffective or too limited in scope.”

In summer of 2017, the FDA approved a new sickle cell drug — the first in two decades — making it just the second option on the market for patients. It recently hit pharmacy shelves, but insurers have backed away from covering it, leaving the average monthly cost of $3300 up to patients to pay.

Why is the road for sufferers of this chronic condition so fraught with obstacles? And how does it compare to the way the government, researchers and the medical community handle more mainstream blood disorders?

Guests

  • Jenny Gold Senior correspondent, Kaiser Health News
  • Dr. Sophie Lanzkron Associate professor of medicine and director of the Sickle Cell Center for Adults, Johns Hopkins School of Medicine
  • Efa Ahmed-Williams Founder of Destiny Despite Diagnosis; a sickle cell patient and advocate
  • Marqus Valentine Diagnosed with sickle cell disease when he was a small child, he is an advocate and co-founder of Sick Cells

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