Now Virtual – 2020 Bleeding Disorder Awareness Day

March 20, 2020 all-day
Minnesota State Capitol Rotunda
Minnesota State Capitol
75 Rev Dr Martin Luther King Jr Boulevard., St Paul, MN 55155
(651) 406-8655

Dear HFMD Members & Supporters,

Due to this unprecedented outbreak of the Corona virus (COVID-19), the Hemophilia Foundation of Minnesota Dakotas and Rare Disease Action Network (RAN) have decided to convert this scheduled rally at the Minnesota state capitol into a virtual Rare Disease Awareness Day, where we ask our members to contact their elected officials via emails, phone calls, letters, & social media, instead of attending physically at the state capitol rotunda.

We ask members of Minnesota’s bleeding disorders community to reach out on March 20th to contact your state house Representatives & Senators via email, phone, & social media and ask them to support the legislative priorities listed below. We also ask you to share your personal story in a compelling and concise way to tell them how important maintaining full access to health care is to you and your families.

James Paist
Executive Director
Hemophilia Foundation of Minnesota/Dakotas (HFMD)
(651) 406-8655
We urge you to support policies to protect the bleeding disorders community.

HFMD asks all members of the Minnesota Legislature to support policies that ensure access to comprehensive insurance and access to health care services people with rare diseases need to maintain healthy lives.

2020 HFMD Legislative Priorities:

  • March 20th 2020 -NOW VIRTUAL Rare Disease Awareness Day  – ELECTRONIC COMMUNICATION ONLY
  • Pursue Out of Pocket Cap Legislation ($250 cap annually) We need bill authors
  • Outlaw & End Accumulator Adjustor Programs (intercepting co-pay assistance to patients)
  • Maintain access to:
    • Protect Current pre-existing condition policies
    • Step Therapy to Follow Clinical Practice
    • Uphold federal standards for Essential Health Benefits (EHBs)

 About Bleeding Disorders

  •  In the United States, approximately 20,000 individuals have hemophilia and of that number, approximately 600 individuals with hemophilia live in Minnesota & South Dakota..
  • The Hemophilia Foundation of Minnesota/Dakotas (HFMD) is the only resource of its kind supporting the bleeding disorders community in Minnesota & South Dakota.
  • The National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA) are advocacy organizations on a national scale with affiliated state chapters across the country including the HFMD.

Understanding Bleeding Disorders

  • Hemophilia, von Willebrand disease and other rare bleeding disorders are genetic conditions that impair the body’s ability to clot properly. People living with hemophilia and von Willebrand disease, often the most severe of these conditions, administer prescription medication (clotting factor or other new therapies) to avoid painful or potentially life-threatening bleeding episodes that can lead to advanced medical issues such as joint and muscle damage and even death.
  • The impact of a major bleed or of cumulative damage from repeated bleeding episodes, is too severe and it is imperative that individuals with hemophilia continue to take their life-saving medicine, even though it is costly, to prevent future injuries or future joint damage.
  • Clotting factors vary in a number of important respects, including half-life and immunogenicity, and as such are not therapeutically equivalent or interchangeable. No generic clotting factor exists. Patient bleeding patterns and responses to different clotting factors vary widely.
  • Recognizing this diversity of clotting factor products, the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation has stated that product selection for bleeding disorder patients “require[s] a complex decision making process” between a patient and his or her physician: “it is critical that the bleeding disorders community has access to a diverse range of therapies and that prescriptions for specific clotting factor concentrates are respected and reimbursed.”
  • Because the selection of the medically-optimal product for each patient is so individualized and so important, MASAC urges payers to cover whichever factor product is prescribed by the patient’s treat physician rather than resorting to a PDL, formulary approach or step therapy.