But his mother, Victoria Kuhn, says she is terrified that the insurance company may start requiring patients to pay as much as a third of the cost of the drug. “I don’t know where we’d find $30,000,” said Ms. Kuhn, who lives in Falmouth, Me.
Spurred by patients and patient advocates like Ms. Kuhn, lawmakers in at least 20 states, from Maine to Hawaii, have introduced bills that would limit out-of-pocket payments by consumers for expensive drugs used to treat diseases like cancer, rheumatoid arthritis, multiple sclerosis and inherited disorders.
Pharmaceutical companies would also benefit from such legislation because high co-payments discourage patients from taking their medicines. The pharmaceutical giant Pfizer has been helping the legislative drive behind the scenes, even drafting some of the bills, according to legislators and patient advocates.