Rilutek Discussion: Cost, Effectiveness and Availability

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Mar 16, 2006
Thanks guys for replying. My father is in India and I am in USA. The doctor over there prescribed Rilutek, but they cannot obtain it in India. I inquired about it in the pharmacies here in USA and they told be it costs $900 for 60 tablets, which is just crazy. I am trying if it can be obtained in India at a cheaper price. Does anyone know any cheap way to get Ruletek? How useful is it anyway ? How much "stock" should we put in it?
Anyway, He is seeing another neuro and I am praying for a miracle somehow that the diagnosis be reversed. Thanks again to those who expressed sympathy.

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Hi grp. There are online pharmacies in Canada that sell to people in the states. Rilutek is only $ 670.00 here for 60 tablets which is a months supply. The US dollar is worth about 15 cents more than Canadian so you would save another$105 so for about $550 give ot take a few dollars it would be cheaper. Do a google search for Canadian mail orde pharmacies. You still need the prescription though. Hope this helps.
Rilutek for free?

Hi all--

I read somewhere that if you write to Aventis Pharmaceuticals and explain your situation, that they have a policy of providing it at no cost, but you have to qualify somehow. I tried their website this evening but it was down.

From the Aventis Rilutek website:

"The Rilutek Patient Assistance Program
The Patient Assistance Program has helped to cover the cost of Rilutek for hundreds of eligible patients. The program is sponsored by Aventis Pharmaceuticals and administered by the National Organization for Rare Disorders (NORD). Eligibility is determined solely by medical and financial criteria. All eligibility decisions are made by NORD."

I'd also suggest you contact your local ALSA and MDA for assistance.

As to how useful the drug is- initial studies showed benefits at 12 months but not 18 months (see Aventis website for details). Several subsequent studies show a modest effect in slowing the disease.

My insurance covers Rilutek with a monthly $20 copay. If I had to pay $900 for a month's supply it would be hard to justify given that the benefits of the drug are modest even if it does work. In my opinion one should never have to choose not to take an indicated medication for financial reasons. However the world does not live by my rules. If it did a lot of things would be different (I guess I should stop there before I get on my political soapbox:)))
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Would that be a Republican or a Democrat soap box Dave? Seriously though I am on a pension and while it keeps the wolf away from the door I would not or could not pay $ 900 per month for meds. I also take other drugs for heart condition that cost about a grand a month. Thank God and the union for having a drug plan with a $25 deductible per year.
grp_believes_in_God said:
Thanks guys for replying. My father is in India and I am in USA. The doctor over there prescribed Rilutek, but they cannot obtain it in India. I inquired about it in the pharmacies here in USA and they told be it costs $900 for 60 tablets, which is just crazy. I am trying if it can be obtained in India at a cheaper price. Does anyone know any cheap way to get Ruletek? How useful is it anyway ? How much "stock" should we put in it?
Anyway, He is seeing another neuro and I am praying for a miracle somehow that the diagnosis be reversed. Thanks again to those who expressed sympathy.


Hello GRP,

Very sorry to hear about your father. I know most of the people on here probably would disagree with me on this matter. But in answer to your question about the Ruletek drug. Both of the neurologist that i saw, said it wasn't worth the money for it so they didn't recommend it. They put me on 400 mg of coq - 10. It does seem to help my pain. Hope this info, is helpful. Best of luck with your father.
Love and Prayers
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I find it interesting that your neuros are making judgements about medication based on cost. To me that's what's wrong with our medical system. In my case I'm lucky, my insurance covers it except for a $20 copay per month, so my doctors and I are able to make a medical judgement unencumbered by cost-benefit issues. But that's not the point.

A treatment should be undertaken based on the benefit it provides as weighed against the side effects. Period. Based on this, some may choose not to take Rilutek, but it would be a medical decision, not an economic decision. (Yes I know I'm dreaming, but I couldn't help commenting.)
In the case of people in Ontario that don't have a drug plan from their work there is the Trillium plan. It sets a deductible yearly based on your income. A guy making $100 thousand would have a deductible of around $8 thousand. Less money less deductible. From what I have heard some of the clinics will help get funding from the manufacturer as well. So there are options. I would think MDA or ALSA would be able to offer assistance if needed in the U.S.
I thought I would comment on the Rilutek thing. I am in agreement with Marlo not because of a money situation although as ALS increasing the expense can be enormous but I have read over and over again, that Rilutek only increases life spam of about 3 months. My dad and a friend of our family were diagnosed with ALS two months apart. Our friend had Bulspar(sp?) and went on Rilutek and my dad choose not too. My dad lived over a year longer. I too don't mean to be negative but I haven't read anything that great about the drug so for $600 - $900 a month seems like a lot for most people. My dad went the vitamin and nutrient route.
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Not wanting to be the bearer of bad news but Bulbar patients last 6 to 18 months only most times. Some are longer but generally 6 to 18 is it. Limb onset patients generally last 2 to 5 years or longer but 80-90% are gone in 2-5 but some last even longer than 10 or 15 years. Who gets the longevity prize?. No one knows. It might not be the one who prays the most but then again it might be. You just have to do what feels right for you. We're all different. I haven't fallen down until tonight but missed a step on the walkway while looking for the door key. Down I went smacking up right knee and hip left hand and scrapes and sore muscles where I didn't think I had muscles anymore. Some of the people I know of have been falling lots. My first. We're different once again. I guess I just have to pay more attention walking and yes Carol and Tbear wine was involved luckily or I might have broken more than my ego. LOL.
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... falling due, in part, to red wine consumption is allowed/encouraged! So long as it's good red wine! Just back from Barcelona and could not find a bad bottle of Rioja... and the professor and I looked a lot!


I have read many comments on what Rilutek does, "extends life by only 3 months" for example. My understanding is that these are months added to each year to 18 mos. of survival, so it is accumulative, I like that and hope I'm one of the 10% that live past 5 years! :)
The rilutek question is more complicated than the "three months" calculations. I'm not even sure where that number comes from. Initial studies showed rilutek to be neuroprotective. The two "double-blind" studies done thereafter, which formed the basis of FDA approval, actually showed a benefit at ,6, 9 and 12 months but not 18 months. These have become controversial results to some PALS who claim that the numbers were "fudged" because aparently in one of the studies, different measures were used to calculate the final results than had originally been proposed.

Since then multiple reviews of the drug have been done. An open label study done with Mexican patients found a statistically significant slowing of disease progression:

One-year treatment ended January 1998 for the 50 patients initially enrolled, of which 31 (62%) completed the study. Of those did not complete treatment protocol, 14 (28%) were because of non-compliance with study visits our voluntary drop-out, mainly in the first two month of treatment with riluzole; 4 patients (8%) died of respiratory failure (none of them presented treatment related side-effects), within a mean of 5 month after riluzole was started; one patient (2%) has to continue drug therapy because of skin rash which disappeared after stopping riluzole.

Thirty-one patients (11 women, 35% and 20 men, 65%), with a men age of 47.67 (SD 10.35) years (49.16 years for women and 44.63 years for men) completed the one-year treatment. Mean clinical evolution of ALS was 25.83 (SD 13.43) months (29.66 months in women and 23.73 months in men). None of the patients had a greater then two-fold increase in aminotransferase . Mean values for alanine aminotransferase and aspartate aminotransferase were 27.78 U/L at study entry, and 27.58 U/L and 26.76 U/L at the end of one-year therapy, respectively. Complete blood counts were not significantly different before and after treatment.

Full Article->

The "Cochrane" review of existing studies concluded rilutek conferred a two-month survival extension, but also cautioned these results were skewed by the fact that one study included multiple older, fast-progressing patients:

(broken link removed)

Perhaps most intriguing were reports from three separate patient databases presented at the 2001 International Symposium on ALS describing long range
experience with riluzole. All three reports suggest a trend of increasing survival with riluzole over time. It was concluded that "more studies that are double blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the riluzole clinical trials may be needed to see the long-term survival advantage of the drug."

Interestingly, I find no evidence that any such "studies" were ever done to confirm the database observations. It seems to me, then, that rilutek may be far more effective than the original studies indicated; my own nueurologist told me that current thinking among his colleagues is that the drug is more likely to be beneficial when given to patients in earlier stages of the disease and that it is probably much better than most doctors originally thought. Now, that may be self-delusional puffery to make the docs think they are doing something they really aren't. But it is interesting nonetheless.
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I think there are quite a few studies showing that rilutek may be a lot more effective than people originally thought. I know that my neurologist formerly advised patients that there was little benefit to taking the drug - but is now recommending patients to take it based on recent studies.

The problem I have with these studies, as with all treatments for ALS, is that no one can really say for certain whether a given treatment is actually making any difference.

From my understanding, for ALS studies, due to ethical reasons, they do not have the usual control group being given a placebo to compare against a group being given the drug; however, even a regular control group would not be much help in ALS studies.

Every ALS case is different. Plus the natural progression of the disease for each PAL will involve ups and downs with occassional improvements. Complicating matters is that we don't know what causes ALS. There are so many factors and variables that could be contributing to motor neuron deterioration - so we can't isolate or remove the factors contributing to cell death or know if they are present to the same extent in each subject. Also - the disease itself may have changed over time - it may be affecting younger and younger people who may be able to survive the ravages of the disease than older people. As a result of all of these factors - trying to determine whether a given treatment is effective is next to impossible.

Really the only way to determine whether a drug is effective for ALS would be to take a group of people - then create a test group by making make true copies of every member in the group - not even cloning would be enough - we would need duplicates that are the result of the same genetic and environmental factors - give the original group the drug and the test group a placebo - subject each group to identical diets and living conditions in all respects - then wait and see if there is a difference in survival rates and progession between the groups. Of course this would be impossible.

Another problem with determining the effectiveness of Rilutek is that it has to be taken on an empty stomach. My understanding is that if your stomach is not empty, the drug will just bind with the undigested food and be wasted.

I don't know about the rest of you, but my regimen involves eating or nibbling on something or taking some kind of supplement almost every moment I'm awake.

I'm on rilutek - and I have to wake up in the middle of the night to take one of the doses - but that's probably not so great because the pill is then probably just sitting in my gullet or throat all night.

So even if there are benefits to rilutek - I may not experience any benefitis personally because of my eating habits.

Sigh - ALS is the ultimate mind%@#.

We gotta just keep on truckin'.
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