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Annual Meeting

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Washington Day
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  Position Papers
   Hepatitis C
   Prevention &


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Washington Days 2004

NHF's Annual Legislative Advocacy Conference

March 10 to 12, 2004

Over 150 members of the bleeding disorders community met March 10-12, 2004 for this year’s NHF Annual Legislative Advocacy Conference in Washington DC. 126 Congressional office visits were scheduled and 37 Congressional Members met with members of the community themselves. This year’s program included many successful components including:

Wednesday, March 10:
Evening Reception and Issue Briefing

Position Papers

Thursday, March 11:
Breakfast and Briefing on Capitol Hill followed by Congressional Visits

Friday, March 12:
State Advocacy Workshop Only


  • The Role of Medicaid
    Joan Alker
    Georgetown Health Policy Institute

  • Health Insurance Reform and Access
    Karen Pollitz
    Georgetown Health Policy Institute

  • Individual insurance market trends

  • High Risk Pools Beneficiary Cost Burden

  • High Risk Pools Benefit Maximums

  • Kaiser Family Foundation

  • Commonwealth Foundation

  • Stateside Associates, Inc

    Fundamentals of Advocacy
    Michael Behm and Sam Witt
    Stateside Associates

    Medicaid and the States
    Kate Paleczny
    Stateside Associates

  • Breakout Points

    Participants: Linda Belling, Gareth Griffiths, Shaun Shokrollahi, Claudia Smith, Roberta Smith, Scott Sorenson

    Discussion Points:
    • Work with Insurer to gain access to HTC
    • Work with Insurer to get cost per unit and shop around Homecare
    • Work with Chapter to offset annual visits
    • Access NHF for information on:
         o Recombinant care
         o CDC statistics on HTC care to add to
            information packet
    • While visiting legislators/lawmakers – leave material and leave a keep sake to remember your issue. Have the kids make your keepsake.

    Participants: Jeff Cornett, Barbara Gordon, Louise Hardaway, Bobbie Kincaid, Tony Maynard, Catherine Wilson, Colleen Wilson, Amanda Tuberdyck

    Discussion Points:
    • Prior authorization is a restriction on access to factor – without access patients have to go to the emergency room for therapy.
    • Need to:
        o Implement legislation to exempt factor from prior        authorization. Cite the uniqueness of products –        they are not simply drugs
        o Include all products on preferred drug lists by        brand name
             - South Carolina Medicaid only includes one            plasma-derived product and one recombinant            product

    Participants: Warren Cranford , Kevin O’Connor, Diana Smith

    Discussion Points:
    • Must recognize that concern for coverage of factor cannot be separated from concern over cost of factor
    • Constant worry about reaching maximum lifetime caps
    • There is often a need to change jobs for health coverage security – adequate clotting factor coverage is a factor when looking/choosing employment
    • Always looking over your sholder – don’t want to “rock the boat” and draw attention to amount of health insurance you use

    Participants: Patrick Collins, Pam Doell, Elizabeth Fung, Jim Knappe-Langworthy, Kathleen Montgomery, Teresa Ramirez, Michelle Rice, Bobbi Walker, Carl Weixler, Edwin Wilson

    Discussion Points:
    • Chapters have a need for:
         o Access to each other – share stories and          information within different states
         o Chapter resources should be shared among         chapters and made available
         o Chat room/forum to discuss general goals and         specific plans
         o Menu of possible solutions/options

    Participants: Debby O’Connor, Dorothy O’Connor, Brandy Stewart, Shirley Wilson-Oslund

    Discussion Points:
    • It is necessary to emphasize the need to have access to all products – cannot mirror South Carolina one recombinant and one monoclonal product for Medicaid
    • Emphasize that all brands are not the same, they are not interchangeable
    • Emphasize the patient/physician relationship. It is up to the physician to decide the best course of treatment/products for the patient - this relationship must be respected.

    Participants: Dianna Smith, Ray Stanhope, Doug Thompson, Meredith Zerbe

    Discussion Points:
    • Educate yourself about high risk pools:
         o Go to meetings, get community members
             on the board
         o Get to know state high risk pool benefits
             – lifetime max? single product restriction?
         o Find out if a third party payor is permitted to
            pay for premiums
    • Educate others – let them know $1 million cap is
       not enough
         o Connection with high risk pools can help
             make a case with private insurers

View the event schedule >>

Contact Yalda Kasaean at (800) 424-2634, ext. 3742 or e-mail if you have any questions about registration or the Washington Days program.

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