Jumping through hoops for lifesaving treatment
Originally published at the Boston Globe
YOUR RECENT story “Hope for devastating child disease comes at a cost: $750,000 a year” (Page A1, March 28), about parents of children with spinal muscular atrophy battling to get the coverage their children need, is an example of our health care system gone wrong.
It’s outrageous that the insurer refused to cover the medical treatment these families needed for their children, especially since the Food and Drug Administration had approved it for the medical condition.
As the executive director of the New England Hemophilia Association, and as a patient with a rare bleeding disorder myself, I know firsthand the challenges facing those with diseases who have expensive treatments. In my experience, and in my role, I have seen patients with hemophilia forced to jump through unnecessary insurer hoops, such as prior-authorization process, due to the cost of their intravenous treatment. This leads directly to delay or disruption in the delivery of care to the patient. For someone with hemophilia, this is unacceptable and can lead to death.