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New Member Join Date: 2010 City: XXXXXXXX State: Dixieland Country: US Interest: I am a friend of someone with ALS/MND. |
First, I'm sorry if this question offends anyone. I'm wondering about what it costs you to have ALS? I'm sure it's different for everyone and dependent on how much it's affected you and to what extent. But in general terms, can you give me an approximate? Thanks so much. | ||
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Very Helpful Member Join Date: 2008 City: Alexandria State: Ontario Country: CA Diagnosed: 10/2008 Interest: I have been diagnosed with ALS. |
it depends what kind of accommodations you live in and what needs to be done to accommodate the PALS Im cruising around 75K right now, but have my portion of a new pwc to account for its easier to say, it costs more than you have. Glen | |||
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Senior Member Join Date: 2006 City: saratoga springs State: ny Country: US Interest: My sweet hubby has ALS! |
So far....30,000 van.....20,000 modifications to bathroom....1,000 on ramps. 1,000 a month for rilutek. Spent over 10,000 on supplements and snake oil. EYE gaze..donated...wheelchair bought on old insurance. Plus a newer wheelchair donated. Cough assist machine rented...not sure what co pay will be yet. Because we lost my husbands insurance.. 200.00 for him...500.00 for my boys and 900.oo a month for me! Going broke quickly! ALS SUCKS!
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Senior Member Join Date: 2008 City: Snellville State: Ga Country: US Diagnosed: 5/2008 Interest: I have been diagnosed with ALS. |
I read somewhere that ALS is a $250000 disease.
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Extremely Helpful Member Join Date: 2008 City: Hinton State: Alberta Country: CA Diagnosed: 02/2008 Interest: Can't eat, drink or talk but still smiling! |
If you have to ask, you can't afford it! When you include giving up your job then it costs quite a lot. Add in the cost of home renos, equipment like power wheelchairs, vans, and then home care, you do the math. | |||
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Very Helpful Member Join Date: 2009 City: valeilles State: tarn et garonne Country: FR Diagnosed: 05/2010 Interest: I have been diagnosed with ALS. |
But WHO can afford that? IT is so so so disgusting one has to be put in debt or die there!
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Extremely Helpful Member Join Date: 2006 Country: HM Interest: Other |
Too damn much! Takes away from everything! Need shoes or clothing for growing child... think about it. Credit cards are a must! Don't know why you are asking, as if you or a loved one have it, you don't have a choice! | ||
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Moderator Forum Moderator Join Date: 2004 City: NW of Toronto State: On Country: CAN Diagnosed: 10/2003 Interest: I have been diagnosed with ALS. |
Als Canada says around $140,000 if you don't live long like me. I haven't added it all up yet. AL. | |||
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Member Join Date: 2010 City: xxxx State: xx Country: US Interest: Other |
Kelly! Rilutek"s manufacturer, Sanofi-aventis offers a discount card (up to $100 off) and Patient Assistance Program (free of charge if you qualify).This is from their website: Our live telephone support lines 1-800-RILUTEK (1-800-745-8835) are staffed with trained representatives who can discuss topics such as: * What you can expect with RILUTEK treatment * Important Safety Information * When to refill your prescription * Help making, tracking, and reaching your personal goals * Resources for additional support, information, and services, including o Reimbursement hotline o Patient Assistance Program * Help locating a specialized Treatment Center in your area * Activating your cost-reduction card The Reimbursement Hotline will provide answers to questions related to your health insurance benefits and help you: * Identify your prescription coverage options for RILUTEK * Verify your coverage and prior authorizations * Understand your coverage requirements * Obtain and complete insurance forms * Investigate and track any underpaid or denied claims RILUTEK (riluzole) Cost-Reduction Card You can use the RILUTEK Cost-Reduction Card to receive 50% off your out-of-pocket costs for your prescription (up to $100 per prescription)†. That’s a savings of up to $1200 per year. The RILUTEK Patient Assistance Program: * Provides an opportunity for eligible patients to receive treatment with RILUTEK free-of-charge. * Eligibility is determined by medical and financial criteria. * RILUTEK is shipped directly to the homes of qualifying patients. To learn any of the features of the RILUTEK Care Connection Program,or to enroll call 1-800-RILUTEK (1-800-745-8835) 8:00 am–9:00 pm, Mon.–Fri., ET. Click here to download patient RILUTEK Care Connection information Enrolling is easy! Click here to sign up now and have access to all that the RCC Program has to offer. I hope someone out there can take advantage of this savings. | ||
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New Member Join Date: 2010 City: XXXXXXXX State: Dixieland Country: US Interest: I am a friend of someone with ALS/MND. |
Thank you so much for your responses. I have a very perplexing problem and will post another thread.
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