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Study finds stunning disparity in death rates for blacks with muscular dystrophy [Updated]

September 13, 2010

Life expectancy is lower for blacks compared with whites in the United states by about five years, mostly because of more heart disease among blacks. But researchers reported Monday on a shocking disparity in death rates among blacks with muscular dystrophy that is likely due to inequality in healthcare.

Muscular dystrophy is an incurable muscle disease that often leads to death in early adulthood due to respiratory or cardiac failure. The study reported Monday in the journal Neurology examined 18,315 deaths associated with muscular dystrophy in the United States over a 20-year period and found that African Americans with the disease die 10 to 12 years before their white counterparts -- a healthcare disparity gap "that is among the largest ever demonstrated," said the authors of an editorial accompanying the study.

Research on muscular dystrophy has surged in the last decade while treatment strategies have improved steadily. However, the study showed that, while the survival rates for whites with MD have increased over 20 years, the average age of death among blacks with the disease has changed very little.

Ventilation and prescription corticosteroids are among several strategies that can significantly extend life and improve the quality of life of people with the disorder. Moreover, several promising treatment strategies in genetic and molecular medicine are on the horizon and are becoming available in clinical trials. However, as mentioned in an article earlier this year in the Los Angeles Times, specialty care centers for muscular dystrophy, which affects about 50,000 Americans, are few and far between.  

UCLA opened a muscular dystrophy clinic this year to improve access to care for hundreds of patients in Southern California. That is one admirable step toward a much larger problem of closing the disgraceful racial and ethnic gaps in healthcare.

-- Shari Roan / Los Angeles Times
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[For the record, 7:37 p.m. Sept. 13: An earlier version of this post incorrectly said death rates among blacks with muscular dystrophy were 10 to 20 times higher than whites. The correct range is 10 to 12 times higher.]

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