Sutton's family watched their daughter's health improve after using a new treatment until its coverage was denied. 

Sutton Hohensee, a 16-year-old healthy and active high school student, developed a myriad of debilitating conditions, including autoimmune autonomic neuropathy, mast cell activation syndrome (MCAS), and several other new debilitating conditions. What should have been teen years full of classes, friends, and dreams for the future became years defined by debilitating symptoms, medical appointments, and uncertainty.

Then came a glimmer of hope. Between July and December 2023, Sutton received intravenous immune globulin (IVIG), a therapy both she and her physicians assert was improving her condition.

Then the approvals stopped. The reason was not that Sutton had failed treatment. Instead, the treatment was ultimately deemed "experimental," "investigational," or "unproven" for her conditions. This therapy, often used to regulate aberrant immune responses, has a short list of conditions the FDA has approved for treatment. Coverage disappeared, leaving her family facing overwhelming costs and a painful reality; a treatment that appeared to be helping was suddenly out of reach.

Her health declined. The fight to regain coverage continues. Unfortunately, Sutton's story is not unique.

Across America, families battling rare and complex diseases are encountering the same obstacle. Physicians identify therapies that may help. Patient communities demonstrate meaningful improvement. Yet access is denied because the evidence supporting........

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