title: Insurance, employment, and psychosocial consequences of a diagnosis of hereditary hemochromatosis in subjects without end organ damage.
abstract: OBJECTIVE
  Asymptomatic individuals with hereditary hemochromatosis (HH) may experience difficulties in obtaining employment or insurance, despite their good health. The extent to which these difficulties occur is unclear. The aim of this study was to assess the insurance, employment, and psychosocial consequences of a diagnosis of HH in subjects with no end organ damage.
  
  
  METHODS
  In three outpatient clinics specializing in the treatment of HH, we performed a survey of individuals diagnosed with HH who were without end organ damage secondary to iron overload, along with their unaffected siblings. A review of the medical records of subjects with HH was performed. Main outcomes were attaining and keeping employment; health, disability and life insurance; and scores on the SF-36, a quality of life measure, and the SCL-90-R, a measure of psychological well-being.
  
  
  RESULTS
  Of 130 eligible subjects with HH, 126 (97%) responded. Of the 55 eligible controls, 46 (84%) responded. Of the 126 subjects with HH, 25 (20%) described 28 incidents of insurance denial or increased premium rates, which they attributed to their diagnosis HH. Of the 28 incidents, 16 (57%) involved life insurance, eight (29%) involved health insurance, and four (14%) involved disability insurance. One subject reported an employment refusal. Five of the 25 subjects (20%) reporting insurance denial or increased premiums had significant comorbid conditions. One of 46 sibling controls (2%) reported an increased rate for life insurance (p = 0.003). No differences were noted in either the SF-36 or the SCL-90-R scores between subjects with HH and unaffected siblings. Overall rates of active health, disability, and life insurance were similar between the groups.
  
  
  CONCLUSIONS
  Insurance denial and increased premium rates are reported commonly among individuals with HH without end organ damage. However, the overall proportion of those with active insurance, the quality of life, and the psychological well-being of these subjects were similar to those of unaffected siblings.
authors.affiliation: Center for Gastrointestinal Biology and Disease, and the Division of Digestive Diseases and Nutrition, University of North Carolina, Chapel Hill, North Carolina 27599, USA.
authors.forename: Nicholas J
authors.initials: NJ
authors.lastname: Shaheen
authors.forename: Laura B
authors.initials: LB
authors.lastname: Lawrence
authors.forename: Bruce R
authors.initials: BR
authors.lastname: Bacon
authors.forename: James C
authors.initials: JC
authors.lastname: Barton
authors.forename: Nancy H
authors.initials: NH
authors.lastname: Barton
authors.forename: Joseph
authors.initials: J
authors.lastname: Galanko
authors.forename: Christopher F
authors.initials: CF
authors.lastname: Martin
authors.forename: Charles K
authors.initials: CK
authors.lastname: Burnett
authors.forename: Robert S
authors.initials: RS
authors.lastname: Sandler
mesh_terms: D000328:Adult; D000368:Aged; D004651:Employment; D005260:Female; D006306:Health Surveys; D006432:Hemochromatosis / Q000175:diagnosis* / Q000191:economics / Q000523:psychology; D006801:Humans; D019458:Insurance Coverage; D018868:Insurance, Disability / Q000706:statistics & numerical data; D007348:Insurance, Health / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D012720:Severity of Illness Index; D035781:Siblings; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires