Another "March" on the Nation's Capital has been completed. Four UHF advocacy members (Roberta Smith, Erik Melde, Brandalynn Gardner, and Carson Gardner) charged through the dust of snow convering a sheet of ice to meet with legislators to discuss a variety of issues. The issues tackled this year were Increased access to Medigap policies, the Genetic Information Nondiscrimination Act, and increased funding to treatment centers with an emphasis on women with bleeding disorders. We seemed to have a largely favorable response this year with great momentum on most issues. We actually had a letter written by Representative Tammy Baldwin from Wisconsin asking her colleagues to support increased funding.
Washington Days is an amazing experience. Anyone capable of making the trip should. If seeing the heart of American legislation, viewing incredible sights, fighting for important issues, meeting great people, and learning valuable skills is not enough to persuade you, then go for the food. The food at the convention is awesome. We had a great time. One highlight of the trip was visiting Senator Sam Brownback's office with National Hemophilia Foundation CEO, Alan Kinniburgh, Ph.D.

Please Help Stop SB42

There has recently been a bill passed through the Utah Senate that will set up a Preferred Drug List for Medicare and Medicaid which could be used as a model for private insurance. The bill does not exclude anti-hemophilic factor. This means that factor medication can become very limited. The danger is that different factors can react differently in an individual. One type of factor may not have an effect on a member of the bleeding disorder community. There is a provision that allows a doctor to override the list, but, in the case of a bleeding emergency, going through the process is impractical. The Utah House of Representatives is going to be looking at the bill very soon. It is important for everyone in the community to contact their Representatives and ask that any preferred drug list exclude anti-hemophilic factors. If anyone has any questions, they can contact me at cwgardner01@hotmail.com. Thank you.

New Executive Director: Scott Muir

In July Scott Muir assumed the directorship of the Utah Hemophilia Foundation. Mr. Muir’s selection by the Foundation’s Board of Directors followed a two-month search for a new executive director. Mr. Muir brings to his position with the UHF a varied professional background of more than twenty years of experience encompassing public, nonprofit, and private sector management, corporate communications, marketing, public relations, media relations, and community and governmental relations. Before coming to the UHF, he was the director of a large natural history and paleontology museum and nature park, a consultant to the Gale Center of History and Culture in South Jordan, the director of Marketing and Communication for an aerospace company, and the director of Economic Development for a northern Utah county. Additionally, Scott is no stranger to the non-profit world, having held administrative positions with a variety of non-profit agencies in the social services field during an eight-year period.

A Utah native and graduate of the University of Utah, Scott is also an accomplished filmmaker, having produced documentaries and a feature film still in national and international distribution. As the Director of the UHF, Mr. Muir will focus on taking the Foundation to the next level of professionalism, programming, and prominence in advancing the Foundation’s mission of empowering those with bleeding disorders to lead healthier and more self-sufficient lives. Scott also feels strongly that the primary function of the Foundation should be advocacy that promotes unity of purpose and unity of effort in delineating and meeting the needs peculiar to Utah’s bleeding disorders community. Mr. Muir both welcomes and invites constructive feedback concerning the Foundation’s widely ranging programs of education and support.