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News

Diagnosis of hereditary hemochromatosis in subjects without end organ damage

Insurance denial and increased premium rates are common among individuals with hereditary hemochromatosis who do not have end organ damage, find researchers in the May issue of the American Journal of Gastroenterology.

News image

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Asymptomatic individuals with hereditary hemochromatosis can experience difficulties in obtaining employment or insurance, despite being in good health.

However, it is unclear to what these difficulties occur.

20% of subjects with hereditary hemochromatosis had experienced insurance denial or premium increases.
American Journal of Gastroenterology

In this study, researchers from the United States assessed insurance, employment, and psychosocial consequences of hereditary hemochromatosis diagnosis in healthy subjects.

The team surveyed patients from 3 clinics specializing in the treatment of hereditary hemochromatosis. They included patients who were diagnosed with hereditary hemochromatosis, but who were without end organ damage secondary to iron overload. The team also evaluated the patients' unaffected siblings.

The researchers performed a review of the medical records of subjects with hereditary hemochromatosis.

Main outcomes were attaining and keeping employment, and health, disability and life insurance. The team also measured quality of life (SF-36) and psychological well-being (SCL-90-R).

Of 130 eligible subjects, 126 responded, and of the 55 eligible controls, 46 responded.

The researchers found that 20% of the subjects with hereditary hemochromatosis had experienced 28 incidents were insurance was denied or premiums were increased. The subjects attributed these incidents to their diagnosis of hereditary hemochromatosis.

Of the 28 incidents, 57% involved life insurance, 29% health insurance, and 14% disability insurance.

In addition, the team found that 1 of the sibling controls reported an increased rate for life insurance.

However, the team found that 20% of the subjects who reported insurance denial or increased premiums had significant comorbid conditions.

One subject reported an employment refusal.

The researchers were unable to identify any differences the SF-36 or the SCL-90-R scores between subjects with hereditary hemochromatosis and unaffected siblings.

Overall rates of active health, disability, and life insurance were similar between the groups.

Dr Nicholas Shaheen's team concluded, "Insurance denial and increased premium rates are reported commonly among individuals with hereditary hemochromatosis 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".

Am J Gastroenterol 2003; 98(5): 1175-80
24 June 2003

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