Amyotrophic Lateral Sclerosis Treatment Cost

Typical costs:

• For patients covered by health insurance, out-of-pocket costs for ALS treatment typically consist of doctor visit, lab and prescription drug copays as well as coinsurance of 10%-50% for procedures, which can easily reach the yearly out-of-pocket maximum. ALS treatment typically is covered by health insurance, although individual drugs or treatments might not be covered by some plans.
• For patients not covered by health insurance, the cost of ALS treatment can reach several hundred thousand dollars per year.
• Rilutek, the only drug approved by the U.S. Food and Drug Administration to treat ALS, typically costs up to $12,000 a year. Patients on an ALS forum[1] report Rilutek costs of about $900 to $1,000 a month.
• Physical therapy, which is sometimes prescribed to improve strength and flexibility, can cost $50 to $350 per session.
• Costs of basic medical equipment, including a wheelchair, patient lift and suction machine for excess saliva can total $50,000, according to a fact sheet on ALS[2] from the American Brain Foundation. Costs depend on the type of equipment. For example, at SpinLife.com, power wheelchairs[3] cost $1,500 to $5,000 or more. At SpinLife.com, electric patient lifts[4] cost about $1,000 to more than $6,000.
• A tracheostomy, a hole created surgically in the throat to allow for ventilation, can cost as much as $150,000. Most ALS patients eventually require a tracheostomy and ventilator. Invasive ventilation[5] can cost $150,000-$330,000-plus per year, mostly for home health care, according to the ALS Hope Foundation.

• The brand-name drug, Rilutek[6] , might be prescribed. Studies have shown that this drug can slow progression, prolong higher quality of life and extend life by several months. This is the only drug approved by the U.S. Food and Drug Administration to treat ALS.
• Other drugs can treat symptoms of ALS, which can include fatigue, muscle cramping, muscle twitching, excess saliva, constipation, urinary urgency, depression and anxiety. The ALS Hope Foundation offers a list of medications most commonly used to treat ALS symptoms[7] .
• Respiratory management is an important component of ALS care. This can include non-invasive ventilation, through the nose or mouth. As the disease progresses, a patient likely will need a tracheostomy to insert a tube in the throat for invasive ventilation.
• ALS can lead to difficulty swallowing and eating, so nutritional management is important. This might include placement of a gastronomy tube.
• Care also might include physical therapy and occupational therapy. The National Institutes of Health offers an overview of ALS treatment and care[8] .

• Extensive home modifications might be required. These can include ramps, wheelchair-accessible doorways and safety equipment such as bathroom railings and stair lifts. The Muscular Dystrophy Association offers a guide to home modifications for ALS patients[9] . Modifications can cost tens of thousands of dollars. One patient on an ALS forum[10] reports spending $20,000 to modify a bathroom and $1,000 to install a wheelchair ramp.

• 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[11] .
• The Muscular Dystrophy Association offers a list of ways[12] ALS patients can find money to pay for care, including using a reverse mortgage, life insurance funds and retirement funds.

• Patients with ALS typically require treatment from a team of doctors and other health professionals, often led by a neurologist experienced in treating ALS. The team might include physical therapists, occupational therapists, speech therapists and nurses.
• The ALS Association offers a list of ALS centers and clinics[13] that focus on treating ALS patients. Or, the American Academy of Neurology offers a doctor locator[14] to search for neurologists who subspecialize in ALS.
• The ALS Association offers a guide to finding ALS care[15] .

1.  www.alsforums.com/forum/general-discussion-about-als-mnd/529-rilutek-questions.html
2.  www.curebraindisease.org/globals/axon/assets/10258.pdf
3.  www.spinlife.com/critpath/match.cfm?categoryID=629
4.  www.spinlife.com/critpath/match.cfm?categoryID=110
5.  www.alshopefoundation.org/understanding-als/respiratory-management.php
6.  www.drugs.com/cdi/rilutek.html
7.  www.alshopefoundation.org/understanding-als/symptom-directed-therapy.php
8.  www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
9.  mda.org/publications/everyday-life-als/chapter-3
10.  www.alsforums.com/forum/general-discussion-about-als-mnd/12007-about-how-much-does...
11.  mda.org/locate
12.  mda.org/publications/mda-als-caregivers-guide/chapter-7/finding-funds-private
13.  www.alsa.org/community/services.html?service_type=centers&state=--Select%20State%E...
14.  patients.aan.com/findaneurologist/
15.  www.alsa.org/faq/#2

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