What’s Important


ADVOCACY PRIORITIES FOR 2012

While our elected officials debate, legally challenge, and attempt to redefine sections of the law, our advocacy efforts will continue to closely monitor those areas of the Affordable Care Act (ACA) that will effect us most and prove most beneficial to our patient population including their family, caregivers, and medical support teams.

If the foundation finds that federal or state legislation being considered may result in hurtful consequences, we intend to take immediate action. No policy should ever hinder early diagnosis and treatment, access to care, change treatment location, restrict or deny coverage or impose unreasonable reimbursement coverage limits. Any such action will be cause for our Foundation to mount an aggressive, focused response. In many cases you will be called upon to help as you have done so in the past.

The specific areas that demand our greatest attention include both the public and private medical providers:

  • Medicare/Medicaid cuts to include physician reimbursement
  • Medicare drug coverage policies
  • Formulary restrictions that limit product choice
  • Health plans that attempt to implement “fail first” therapeutic protocols
  • Standards of care/site of service
  • Limited access to preferred providers and preferred treatments
  • Burdensome cost sharing requirements/unreasonable co-pays or co-insurance
  • Unreasonable/predjudicial drug tier pricing
  • Unreasonable/unfair rehabilitation coverages
  • Increased research and development by government and the private sector
  • Affordable state insurance health exchanges
  • Foundation’s Patient Bill of Rights
  • Increased awareness of rare diseases and their severe coverage issues

 

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  • Connect With Us

  • Topics of Interest

    research-grants

    Upcoming Special Events

    The GBS/CIDP Foundation of Canada is hosting the Canadian Eastern Conference in Halifax, Nova Scotia. This is your chance to learn about all aspects of GBS, CIDP and its variants from initial diagnosis to treatment and rehabilitation. Be sure to check our Community Events page for upcoming chapter meetings in a city near you.


    research-grants

    CSL Behring Announces Trial for CIDP Patients

    CSL Behring has announced that the first patient has been enrolled in the PATH study, an international clinical trial designed to evaluate the efficacy, safety, and tolerability of two different doses of subcutaneous immunoglobulin (SCIg), compared with placebo, in maintenance treatment of chronic inflammatory demyelinating polyneuropathy (CIDP).


    research-grants

    May is GBS/CIDP Awareness Month

    During the month of May, in an effort to increase awareness in each of our communities, we encourage everyone to organize activities that highlight GBS, CIDP and their variants. Throughout the world, individuals and groups have organized fundraising events such as walks, runs, bake sales, fashion shows, cocktail receptions, and art shows.
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