Unread 05-21-2010, 09:04 PM #1 (permalink)
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Default About how much $$$ does it cost to have ALS?

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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Unread 05-21-2010, 09:08 PM #2 (permalink)
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Default Re: About how much $$$ does it cost to have 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.

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Unread 05-21-2010, 09:36 PM #3 (permalink)
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Default Re: About how much $$$ does it cost to have 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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Unread 05-21-2010, 09:48 PM #4 (permalink)
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Default Re: About how much $$$ does it cost to have ALS?

I read somewhere that ALS is a $250000 disease.
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Unread 05-21-2010, 09:52 PM #5 (permalink)
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Default Re: About how much $$$ does it cost to have ALS?

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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Unread 05-21-2010, 11:49 PM #6 (permalink)
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Default Re: About how much $$$ does it cost to have 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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Unread 05-21-2010, 11:56 PM #7 (permalink)
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Default Re: About how much $$$ does it cost to have ALS?

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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Unread 05-22-2010, 12:38 AM #8 (permalink)
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Default Re: About how much $$$ does it cost to have ALS?

Als Canada says around $140,000 if you don't live long like me. I haven't added it all up yet.

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Unread 05-22-2010, 08:56 AM #9 (permalink)
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Default Re: About how much $$$ does it cost to have ALS?

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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Unread 05-22-2010, 09:02 AM #10 (permalink)
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Default Re: About how much $$$ does it cost to have ALS?

Thank you so much for your responses. I have a very perplexing problem and will post another thread.
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