Hometown: Streamwood, Illinois
Involvement with BDFF: Four years
Natalie Rubin has first-hand knowledge of step therapy, the controversial treatment plan designed to save insurance companies money. Also known as “fail first” protocols, the patient is required to “fail” on an insurer-preferred drug therapy based on a similar diagnosis before it will cover doctor-subscribed therapy. Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.
Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.
“The goal is to get rid of step therapy all together,” says the University of South Florida freshman. “Step therapy is not effective and not helping anybody.”
Advocating on behalf of the Bleeding Disorders Coalition of Florida (BDCF), Natalie says when she was in junior high school her insurance company wanted her to take an anti-depressant for her Ehlers Danlos instead of her prescribed Lyrica.
“There were side effects, and I missed a lot of time in school because it,” she explains. “I was sick, and I had an abnormal gait that made me wobbly. Not good for someone with a bleeding disorder.”
Bleeding Disorders Foundation of Florida (BDFF) Executive Director Fran Haynes says these protocols can create life threatening problems by preventing patients from gaining access to the most appropriate medication for their condition. Further, for a member of the bleeding disorders community, step therapy is always inappropriate because the consequences of a “failure” are too serious. BDFF is a partner in BDCF, along with the Florida Hemophilia Association.
“The risk of a major bleed or cumulative damage from repeated bleeding episodes are too high,” Fran says.
BDCF is currently supporting two bills in the Florida legislature that deal with step therapy. If step therapy is allowed to continue, the BDCF asks that it must be subject to reasonable constraints, including patient exceptions and covering the provider-prescribed medication. At least 26 states have enacted some form of step therapy protections.
“Doctors should have the final say on whether a non-preferred drug may be dispensed,” notes Fran.
“The doctor wants you to take one drug, but the insurers won’t cover it unless you take others first,” adds Natalie. “They claim it works. It does not. It’s not the truth.”
Natalie is pictured here at the 2020 Bleeding Disorders Coalition Legislative Days.