NORD Guide for Making Your Health Insurance Work for You!

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Are you satisfied with your health insurance benefits? Or are you pulling your hair out over complicated policy language, undecipherable diagnostic codes, and denials of coverage for your IH treatments?

It is difficult enough to have a rare disease such as IH and try to manage it. Every day often presents new challenges. On top of this, having to deal with health insurance companies to get treatment approved or reimbursed often feels daunting, exhausting and discouraging. – Person with IH

Help is on its way! The National Organization of Rare Disorders (NORD) recently sponsored the webinar “How to Make Your Health Insurance Work for You.” This one-hour, live broadcast provided clear and practical guidance for dealing with insurance companies. Half of the broadcast consisted of information and resources with easy-to-read PowerPoint slides, while the other half contained a Q&A session. This engaging, empowering broadcast is now available for use by the IH community, as well as persons with other rare disorders.

  • Watch it HERE.
  • Download the webinar slides HERE.
  • Download notes from the webinar HERE (courtesy of Caroline Lumpkin, NORD’S Education Programs Coordinator).

The webinar began with a general overview of how insurance works. While insurance plans can vary from state-to-state and company-to-company, the speakers provided information and skills that were relevant, no matter what insurance plan you might have. The webinar included information on:

  • How insurance is structured;
  • The different parts of insurance and how that affects coverage of treatments and tests;
  • The actual approval process for the sophisticated tests and treatments that persons with rare diseases require; and
  • What happens when coverage is denied and how you can appeal that denial.

The speakers emphasized the importance of dealing with the insurance companies in organized and strategic ways, and provided useful tips to make that happen. The covered topics included the importance of:

  • Understanding your policy;
  • Having access to diagnostic codes for relevant procedures, and keeping sequential notes and relevant paperwork such as EOBs (Explanation of Benefits); and
  • Being aware of the internal and external appeal processes.

The webinar speakers also provided contact information for resources, including for Medicare,, the National Association of Insurance Commissioners, and NORD’s email addresses for any questions viewers might have (; ).

The second half of the webinar featured a Q&A session. This portion focused on a number of issues relevant to the IH community, including:

  • The role of case managers at insurance companies;
  • The difference in prices (and coverage) of Medicare Advantage Plans;
  • Out-of-network treatment;
  • Access to obtain the diagnostic codes; and
  • Unexpected bills from providers working in a plan-affiliated facility but who are not providers in your insurance plan’s network.

Watch the webinar HERE.
Download the webinar slides HERE.
Download notes from the webinar HERE (courtesy of Caroline Lumpkin, NORD’S Education Programs Coordinator).

And check out HF’s video library HERE!

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