Old 07-11-2018, 08:05 AM #1 (permalink)
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Default Help please---- need advice

Could you help us understand a Dr's responsibility to a patient when a drug like radicava is approved for treatment. We don't know if my husband- who has slow progression at this time - should begin treatment.

Thankfully -we have great medical insurance at this time- so finances aren't the issue.

Do we do it since there is nothing else and insurance is not an issue?

Is the dr obligated to suggest it because it apparently helped a small group of individuals??????When I asked the dr her opinion she focused mostly on the financial costs..

Thank you for your help
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Old 07-11-2018, 09:29 AM #2 (permalink)
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Default Re: Help please---- need advice

She should give you her thoughts about its appropriateness as well as the insurance and financial barriers as they apply to you. Where do you go? Initially MGH told us they would support any of us that wanted to try it. Now with some experience they may be advising differently.

It is a major resource drain on the clinic because of insurance but that should not affect her recommendation to you
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Old 07-11-2018, 12:04 PM #3 (permalink)
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Default Re: Help please---- need advice

Nikki and I are both in MA too. I go to the UMass clinic. My neuro was neutral when we first discussed it- she said it showed no benefit in the first clinical trial, but in a second trial it showed benefit to a subset of patients who met a particular general criteria. She said she would support our choice either way. I tried it but stopped after 6 months. There is a very long thread on here where PALS have shared their experiences with it.
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Old 07-11-2018, 02:19 PM #4 (permalink)
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Default Re: Help please---- need advice

My husband goes to MGH and we have been extremely happy with the care provided. On two occasions the dr told us about the drug without us inquiring. I'm conflicted like many others -since the drug seemed to benefit a subset of patients. Bottom line- we don't know what to do and you folks are really the only people we can turn to. Not sure if dr spoke about it because they are required to since its available or it's just the unknown. She felt like many others that it won't be only drug but a combination.

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Old 07-11-2018, 02:35 PM #5 (permalink)
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Default Re: Help please---- need advice

Who do you see? I see Dr Cudkowicz but I know 2 of the 3 other women in the group. ( I don’t know Dr P but Kristina does). It is certainly fine for you to ask here but if you ask your neurologist for her frank opinion I think you would get it if you haven’t already. It is still new and she may honestly say I don’t know yet

I didn’t pursue it at all but I am far enough from onset insurance wouldn’t pay. Fortunately I didn’t want it.
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Old 07-11-2018, 03:30 PM #6 (permalink)
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Default Re: Help please---- need advice

The drug's own study group acknowledges that there is no reason to believe it's effective in the general PALS population, and it failed in its Phase III trial for that population.

So who will benefit? The group in the followup study, that showed a 5-point vs. 7.5 average drop in ALSFRS, had the following characteristics:

"...patients aged 20-75 years with ALS of grade 1 or 2 in the Japan ALS Severity Classification [I've attached this one], scores of at least 2 points on all 12 items of ALSFRS-R, forced vital capacity (FVC) of 80% or more, definite or probable ALS according to the revised El Escorial criteria, and disease duration of 2 years or less. Eligible patients also had a decrease of 1-4 points in the ALSFRS-R score during a 12-week observation period before randomisation."

If you meet all those criteria (besides being Japanese), then I'd say consider it if you are willing to invest [time if not money] in a decent probability of a modest benefit. Basically, we are talking about early but progressing PALS.

Otherwise, it'd be hard to argue for it, because these criteria synch with the responders from the earlier study. So if you don't meet these criteria, you are much less likely to see a benefit.
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Last edited by lgelb : 07-11-2018 at 06:19 PM Reason: clarity
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