MDA Surveying Families about ‘Cost of Illness’

Most people affected by neuromuscular disease know all too well that their condition is costly. MDA wants to find out just how costly — and then translate those figures into terms that will speak to policy makers.

In a first-of-its kind survey of U.S. families affected by neuromuscular diseases, MDA is canvassing families affected by pediatric-onset muscular dystrophies, myotonic muscular dystrophy (MMD), amyotrophic lateral sclerosis (ALS) and spinal muscular atrophy (SMA), in order to discover how much of a financial burden these diseases impose.

“The information gathered from this survey will have a tremendous and lasting impact on health policy and therapy development efforts,” said MDA Vice President for Advocacy Annie Kennedy. “MDA is delighted to be sponsoring this important effort and we are grateful to the thousands of families who are making it possible by contributing their expertise to our survey.”

Purpose of the survey

MDA is gathering these figures in order to learn what services might best help families affected by neuromuscular disease.The figures also will be helpful when MDA advocates for additional government services and research dollars for people with neuromuscular diseases.

Biotech firms and other companies also need to know the financial impact of these diseases in order to help them perform more accurate cost-benefit analyses of drugs and treatments under development.

About the survey

Surveys are expected to be sent during the week of April 11, 2011, to 3,000 families registered with MDA.

Designed to determine the total cost of the disease for the family, survey questions cover household makeup and income, health status of all family members, insurance coverage, daily activities, caregiving arrangements, work situations, household modifications, transportation and other matters.

The survey can be filled out online or on paper and takes about an hour to complete. It should be answered by the person most familiar with the family’s finances, who may need to consult tax returns, itemized medical expenses and records of work lost due to the disease. The survey is confidential and no private information will be published or shared.

If you're interested in participating in the survey and were not a part of the random sampling (i.e., if you did not receive a paper survey from MDA through the mail), MDA welcomes your participation. To learn more, see MDA's Cost of Illness Survey FAQ.

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