Search thousands of topics on CostHelper.com

BROWSE ALL TOPICS >> appliances babies & children  cars  consumer electronics health & personal care home & garden personal finance  pets  schools small business weddings
CostHelper > Health & Personal Care  > Medical Specialties & Departments > Amyotrophic Lateral Sclerosis Treatment

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
post E-mail post Post   Comments (1)

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.
 
post E-mail post Post   Comments (1)
CostHelper News


No Discount Card? Don't Forget Jenny's Number
Standing in line to pay for groceries in an unfamiliar grocery store, you realize they have discount card savings programs. You don't have a card. || Posted September 19 2013


Forgotten Expenses In a Home Addition Budget
Items like construction costs, permit fees or debris removal aren't the only expenses to consider when calculating the total costs of a home remodeling project. || Posted August 5 2013

‣ All CostHelper Blog Posts


What People Are Paying - Recent Comments
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.
Was this post helpful to you?   yes     no Report prohibited or spam


 

Comment On Your Experience With Amyotrophic Lateral Sclerosis Treatment
 
Subject:  *
Amount Spent:  *
Insurance:   
Comments: 
Purchased:  Year: 
City:  * State:  *
 
Information about you:
Email:  * Email addresses are not displayed.
Name:  This is the name we'll display with your post.
me on this computer
*=required field.
 



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-cost...
  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%EF%83%A0
  14.  patients.aan.com/findaneurologist/
  15.  www.alsa.org/faq/#2
More Health & Personal Care Topics
Check Out All Costs for Health & Personal Care How Much Do Eyeglasses Cost? How Much Do Botox Treatments Cost? How Much Does a Flu Shot Cost?

Search Thousands of Topics on CostHelper.com

 


Today's Featured Cost Articles

About CostHelper
CostHelper is based in Silicon Valley and provides consumers with unbiased price information about thousands of goods and services. Our writers are experienced journalists who adhere to our strict editorial ethics policy.

CostHelper Community
Angiogram of heart
Paid: 55150.00
Had this procedure done to check heart due to abnormal stress test. Did not need any stents or any other procedure as everything was negative... [more]
-Pamela Garrett
Angiogram Cost
HELP: asbestos in furance - many questions
Paid: 0.00
I am renting out my home in Grand Rapids, MI and have received a notice from the city that the home must be inspected... [more]
-Busa
Asbestos Removal Cost
Belly
Paid: 45.00
The clamp was annoying so it took away concentration of the tiny sting of the needle. I had just turned 15 at the the time and I've had it for almost a year and it has healed fast and never given me any trouble... [more]
-Madi
Body Piercings Cost
2 half shafts replaced
Paid: 140.00
Bought the axles myself on ebay for 40 each, then had a mobile mechanic come to my house to do the work. It is not a hard job, but has a couple tricky parts for a subaru. Easier for a honda or toyota... [more]
-Subbie Giy
Replacing a CV Boot Cost
Even with insurance looking at going broke
Paid: 55000.00
Recently on a camping vacation my 11 year old became very sick. Took him to the closest hospital. Found out he is type 1 diabetic. Was very sick and had to be flown from Rock Springs WY, to Salt Lake City, UT. 185 mile on the ground... [more]
-Broke and confused.
Air Ambulance Cost
United Locksmith
Paid: 200.00
DO NOT CALL THESE PEOPLE!!!I lock my keys in my truck and called these guys. They told me 19 bucks for calling and 35 for a lockout... [more]
-Man in Distress
Locksmith Cost