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Posted on 25. March 2021

Maintaining Your Medical Records Can Go a Long Way Toward Self-Advocacy

By Abbie Cornett

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Most people assume their medical records are safe in the hands of their doctors, hospitals and pharmacies. But, frequently this isn't the case, particularly for patients with chronic illness. Often, these patients have complicated medical histories with medical records that date back years and span many different medical facilities, specialty pharmacies and, frequently, numerous physicians. This means their medical records are in many different locations or, worse, have been lost along the way when their doctors retire or they switch healthcare systems. This lack of documentation can make getting approval for medications difficult when they switch specialty pharmacies or their insurance plan changes.

If patients obtain and keep copies of their labs and physician visit notes, they will find their journey with lifelong therapies like immune globulin (IG) is easier. By keeping their own records, they can be assured of having the information needed to avoid denials of coverage and redundant medical testing.

As an example, patients who suffer from a primary immune deficiency should keep copies of the following records:

  • Documented history of infection
  • Baseline IgG, IgA and IgM levels
  • IgG subclasses if they were drawn
  • Vaccine challenge testing
    • Copies of pre-vaccine titers
    • Date the vaccine was administered
    • Which vaccine was administered
    • Copies of post-vaccine titers
  • Copies of all notes from the treating prescriber
  • Follow-up labs (IgG, IgA, IgM and IgG subclasses)

Patients who have been diagnosed with chronic inflammatory demyelinating polyneuropathy or Guillain Barré syndrome should keep the following:

  • Physician visit notes, including neurological exam testing for motor strength and sensory symptoms
  • EMG/NCS
  • Antibody testing lab results
  • History of how the condition presented including when it started, how long it progressed before starting treatment
  • Ongoing physician notes that document treatment response (improvement) to therapy

Remember, it is your health. By maintaining copies of your medical records, you can serve as your own advocate when you are consulting specialists, seeking second opinions or switching coverage!

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