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Shire Launches Report that Quantifies the Health, Psycho-social and Economic Impact of Rare Diseases
Date:4/9/2013

d indicated there is less information/data available to help determine the standards of care for rare diseases (95% in the US, 90% in the UK agreed)
  • Although 90% of patients surveyed reported they had health coverage in the US:
    • 55% of US respondents incurred direct medical expenses not covered by insurance compared to 18% of respondents in the UK not covered by the National Health Service
    • 37% of respondents borrowed money from family and/or friends to pay for expenses in the US compared to only 21% of respondents in the UK
  • Due to the uncertainty, the lack of available information, resources, and economic strains, rare diseases take a major emotional toll on patients

    • Patient respondents reported several emotional difficulties managing their disease including depression (75% in the US, 69% in the UK agreed), anxiety and stress (86% in the US, 82% in the UK agreed), isolation from friends/family (65% in the US, 57% in the UK agreed), and worry based on future outlook of disease (90% in the US, 91% in the UK agreed)
      • For those rare disease patients where treatment options are limited, overall they worry more, feel more depressed, interact less and feel more isolated from family and friends, compared to patients with rare diseases for which there are available treatments

    Data Collection

    In January 2013, Shire HGT conducted online surveys over a four-week period among US and UK rare disease patients and their caregivers; physicians treating patients with rare diseases; payors who handle reimbursements for healthcare plans and government/institutions; and thought leaders in the rare disease space. Surveys were fielded through the market research agency, ORC International and also distributed by advocacy group partners Global Genes and
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