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Access to Care

Access to Care

Access to Care and Treatment

  • NHF advocates for federal policies to ensure that public and private health insurance plans provide access to comprehensive care and all FDA approved clotting factor therapies.

Current activities:

  • Affordable Care Act – NHF advocated for the inclusion of specific policies benefiting the bleeding disorders community to be included as part of the Affordable Care Act (ACA) and as it has been implemented. NHF is closely monitoring implementation of the ACA at the federal and state levels and will continue to advocate for protections for our community.
  • Patients Access to Treatment Act – NHF advocates for passage of the Patients’ Access to Treatment Act. This legislation would prevent private insurance plans from requiring higher cost-sharing for drugs on the specialty drug tier (Tier IV) than for drugs on the non-preferred drug tier (Tier III).
  • Medicare and Medicaid – NHF advocates for reimbursement policies that enable access to clotting factor therapies and comprehensive care services at federally funded HTCs.
  • Genetic Non-Discrimination Act (GINA)
    Signed into law in 2008 by President Bush, GINA protects individuals with genetic conditions, including bleeding disorders, from discrimination when it comes to employment and health insurance. Specifically, the law prevents insurers from denying coverage or charging higher premiums and cost sharing based on having a genetic predisposition for a particular condition, including being a carrier.  Moreover, insurers are not allowed to request, require or purchase genetic information for the purposes of underwriting or enrollment.

    Employers, including employment agencies, are prohibited from not hiring and/or firing a person based on their genetic information. The law also protects against any practices that will otherwise discriminate against an individual with respect to compensation and/or terms of employment. In the event that someone had testing, employers are prohibited from disclosing any genetic information.

    For a downloadable copy of GINA click here. For the complete history of GINA, including summaries, visit the National Human Genome Research Institute at the NIH.