Patient Profile: Bill


Impact stories


After being diagnosed with Myelofibrosis, Bill was shocked and saddened by the number of people living with the disease and who were unable to afford the condition’s necessary medications, while at the same time, being too sick to work.

Bill, a resident of Kankakee County for nearly 30 years, had a routine physical in May of 2012 that resulted in his diagnosis of an extremely rare and serious bone marrow disorder, Myelofibrosis. This condition only occurs in about 1.5 out of every 100,000 people in the U.S. For Bill, symptoms included night sweats, loss of appetite and bloating—all of which were inconsistent and therefore made his diagnosis, and 27-month life expectancy prediction, extremely terrifying and surprising. After his diagnosis, Bill joined a Facebook group for those living with Myelofibrosis. He was shocked and saddened by the number of people unable to afford the condition’s necessary medications, while at the same time, being too sick to work. After a stem cell transplant and many stints in and out of the hospital, Bill’s bone marrow count is up and his rate of production is normal, but he is still unable to go back to work. While his medications are covered under his insurance—for which he considers himself particularly blessed—he is using the window of time while he is feeling better to raise awareness of the exorbitant out-of-pocket medication costs that many in his shoes face. This past spring he joined the Leukemia and Lymphoma Society in Springfield to meet with legislators about the aforementioned bills. Bill recognizes that his efforts are not just on behalf of those with Myelofibrosis, but those suffering from all chronic conditions—cancers, arthritis, epilepsy, AIDS and more. Please join Bill in his effort to #CaptheCopay for all of those struggling to pay for their vital medications. Read more about Bill’s story in the Daily Journal.

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