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 |  | With Health Insurance: 10%-50% Coinsurance plus Copays |  | Without Health Insurance: Can Reach $20,000/year, to over $300,000/year |
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Muscular dystrophy is a group of inherited conditions that cause muscle weakness and loss. Muscular dystrophy can lead to problems doing daily tasks, walking and breathing. Some types of muscular dystrophy occur in childhood, while others do not appear until adulthood.
Typical costs: | - For patients covered by health insurance, out-of-pocket costs for muscular dystrophy treatment typically consist of doctor visit, lab and prescription drug copays of 10%-50%. Muscular dystrophy treatment typically is covered by health insurance, although individual drugs or treatments might not be covered by some plans. Costs can easily reach the out-of-pocket maximum.
- For patients not covered by health insurance, direct medical costs of muscular dystrophy treatment can reach $20,000 or more per year. As the disease progresses, costs can reach more than $300,000 a year if ventilation is required.
- For example, DrugsDepot.com charges less than $20 for a one-month supply of the generic corticosteroid prednisone.
- Physical therapy, which often is prescribed for muscular dystrophy patients to improve strength and flexibility, can cost $50 to $350 per session. Speech therapy can cost $200 to $250 for an initial assessment, then $100 to $250 an hour.
- At SpinLife.com, power wheelchairs[1] cost $1,500 to $5,000 or more. At SpinLife.com, and electric patient lifts[2] cost about $1,000 to more than $6,000.
- A study[3] found that the average annual direct medical costs for a patient with muscular dystrophy are more than $22,000 a year. But costs can go much higher. A tracheostomy can cost as much as $150,000. Many patients eventually require a tracheostomy and ventilator. Invasive ventilation[4] can cost $150,000-$330,000-plus per year, mostly for home health care, according to the ALS Hope Foundation.
Related articles: Physical Therapy, Speech Therapy, Tracheostomy, Genetic Consultation
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What should be included: | - Treatment is tailored to the individual, based partly on the type of muscular dystrophy. There are nine types of muscular dystrophy[5] , each of which has different features and can strike at different ages, from infancy to middle age and beyond
- A doctor might prescribe a corticosteroid such as prednisone to try to slow the progress of the disease.
- Respiratory function should be monitored proactively, so problems can be addressed early. Patients with muscular dystrophy typically develop muscle weakness in the chest that leads to problems coughing and breathing. Most patients eventually need non-invasive ventilation, which is ventilation delivered through the nose or mouth -- or invasive ventilation, which is delivered through a hole created surgically in the throat.
- Many patients develop problems swallowing and eating and can choke on food. It is important to take a proactive approach to nutrition. In some cases, a patient might need a gastronomy tube.
- Some types of muscular dystrophy can lead to heart problems. It is important that patients be monitored by a cardiologist.
- Physical therapy and speech therapy typically are needed for patients with muscular dystrophy. The Muscular Dystrophy Association offers a guide to muscular dystrophy care[6] .
Additional costs: | - It is recommended that anyone with a family history of muscular dystrophy consider a genetic consultation before having children. A genetic consultation can cost $150 or more per hour.
Discounts: | - Shriners Hospitals for Children provide free muscular dystrophy care[7] for qualifying children, based on medical need.
- The Muscular Dystrophy Association provides lightly used medical equipment such as wheelchairs and lifts to qualifying patients with neuromuscular disease. The equipment is provided by local chapters, and the MDA website offers a local chapter locator[8] .
Shopping for muscular dystrophy treatment: | - Patients with muscular dystrophy typically receive care from a team of doctors and other health professionals that would include a neurologist, a cardiologist, an orthopedic surgeon, a physical therapist, occupational therapist and speech therapist. The Muscular Dystrophy Association offers a clinic locator[9] to find facilities that specialize in the treatment of muscular dystrophy.
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Material on this page is for informational purposes only and should not be construed as medical advice. Always consult your physician or pharmacist regarding medications or medical procedures.
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External Resources: | - www.spinlife.com/critpath/match.cfm?categoryID=629
- www.spinlife.com/critpath/match.cfm?categoryID=110
- apha.confex.com/apha/139am/webprogram/Paper248740.html
- www.alshopefoundation.org/understanding-als/respiratory-management.php
- www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/types_of...
- mda.org/publications/congenital-muscular-dystrophy-care-guidelines
- www.shrinershospitalsforchildren.org/en/CareAndTreatment/Orthopaedics/MuscularDyst...
- mda.org/locate
- mda.org/locate
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