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Amyotrophic Lateral Sclerosis Treatment Cost


How Much Does Amyotrophic Lateral Sclerosis Treatment Cost?

 
average costWith Health Insurance: 10%-50% Coinsurance, to Out-of-Pocket Maximumhigh costWithout Health Insurance: Can Cost Hundreds of Thousands of Dollars a Year
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Also called Lou Gehrig Disease, Amyotrophic Lateral Sclerosis (ALS) is a progressive disease that destroys the motor neurons that carry signals from the brain to the muscles. Muscles become weaker, leading to difficulty performing daily tasks, walking, swallowing and breathing. It affects men slightly more than women, and typical age of onset is 40-60.

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.
Related articles: Spinal Tap, Physical Therapy, Tracheostomy

What should be included:
  • 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] .
Additional costs:
  • 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.
Discounts:
  • 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.
Shopping for amyotrophic lateral sclerosis treatment:
  • 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] .
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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What People Are Paying - Recent Comments
So expensive
Amount: $200,000.00
Posted by: ElizabethTG in Seattle, WA.Posted: September 14th, 2019 04:09PM
Insurance: Yes, HSA high deductible.
Conversion of bathroom to ADA
Shower chair /commode
Hoyer electric lift
ceiling lift in bathroom
wheelchair van,
adjustable bed and mattress
Five hours of caregiver time, five days a week
Dragon Professional Voice software
Wheelchair ramp
Two wheelchairs
Chairlift for stairs (no longer able to use)
Was this post helpful to you?   yes     no Report prohibited or spam
Early stages ALS
Amount: $1,000.00
Posted by: GsWifey in Riverside, CA.Posted: March 21st, 2016 12:03PM
Insurance: Yes
Out of pocket expenses have been shower seat, foot braces, wrist braces, medicine co-pay,loss of pay.i was diagnosed January of 2016- stopped working mid February 2016 due to multiple falls. I really don't want to leave my family in debt. I have some big decisions to make as to how I want to treat this illness.
Was this post helpful to you?   yes     no Report prohibited or spam
Early ALS
Amount: $300.00
Posted by: Piper in Rochester, NY.Posted: December 9th, 2014 05:12PM
Insurance: yes
so far, just co-pays including internal med m.d., neurologist, PT. Also, shower chair, regular cane, then a quad cane.
Moved bed to first floor. Unable to walk up or down any stairs or inclines.
Wondering how expensive this will be...and how soon I may need to decide whether or not to be vented.
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External Resources:
  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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