NEBDAC Ambassadors advocate for important step therapy protections in Maine
NEBDAC Ambassador Victoria Kuhn recently traveled with her kids to speak to Maine Legislators about LD 1407, a Step Therapy Protections Bill currently pending in Maine. Great Work Victoria and Family!
Grace, William and I stopped at the Augusta Statehouse on World Hemophilia Day before we headed to the Bangor festivities. We met with one of the bill (LD 1195) cosponsors. We thanked her for her leadership and lending her name to the bill.
William shared that he is well managed and stable on his factor and also how important his factor is (and his prophy schedule) to avoid bleeds, pain, and having to go the doctor more often. He brought his factor with him and described how he mixes and infuses himself. Victoria spoke about William being compliant taking his IV medications three days a week via IV (and that it’s a big deal for a 13 year old). She also mentioned that there are no generic medication for people with bleeding disorders and up to 30% of people with Hemophilia A, like William, can develop a significant health complication called an inhibitor within the first 50-100 doses of a new factor medication (and how expensive inhibitor medication is, not mention missing more school, needing more accommodations at school and at home too, impact to emotional and social health, etc.). She emphasized that having to “fail-first” every start of the insured’s health plan would be extremely stressful and could be very harmful to William and patients like him.
We asked that prescription drugs for people with hemophilia and bleeding disorders be exempt from step therapy or fail-first insurance determinations.
-NEBDAC Ambassador Victoria Kuhn