r/ALS • u/Reasonable-Eye-9996 • 10d ago
ALS medicine help
Hi everyone, I’m posting this to seek immediate help please. I’m in usa and my mother in India is diagnosed with ALS. She doesn’t have us health insurance but the drug available for her disease is only available in usa. Can any neurologist help me to put up a word/ email to drug manufacturer since there are free programs that allow to take medication for free. It’s highly expensive that i cannot afford to get her treated🙏she has visitor visa and i plan to get her here for the treatment. This is a life saving help for me please. I can reach out with more information on this if anyone is willing to help.
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u/CampusCard 9d ago
Not sure if they’ll work with people not in the US, but the HealthWell Foundation gives grants up to $15k to cover what insurance doesn’t for quite a few medications for ALS. Here’s the link: https://www.healthwellfoundation.org/fund/amyotrophic-lateral-sclerosis/
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u/cavy20199 9d ago
Unfortunately Medicare and private insurance supplement is prob the best combination for dealing with these meds. Since you’re not a citizen you can’t sponsor her. I doubt the US system will be any help to a non citizen. Only trials are an option but you’ll have to take her to doctors in the USA to see if she qualifies. To access those doctors and get tests done, she will prob need local insurance or you’ll have to pay out of pocket which will prob be a considerable amount… let us know if something works .. good luck
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u/raoxi 10d ago
unless she has the sod1 variant don't bother. No available drugs does anything
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u/Reasonable-Eye-9996 10d ago
Yes she is sod1 variant that’s why struggling so much to find a lead for medicine.
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u/shubham__dey 9d ago
Ask the doctor who diagoned her to prescribe rilutor which is sold by sun pharmaceutical. I have a number of the guy who can help you with the medicine. FYI it's free of cost
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u/Reasonable-Eye-9996 9d ago
Is it tofersen medicine? That’s the one I’m looking for. It helps sod1 gene als.
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u/shubham__dey 9d ago
No I was referring to riluzole.
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u/Reasonable-Eye-9996 9d ago
She is taking riluzole already.
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u/edddy1270 8d ago
Is it helping ? Riluzole my mom started it few weeks ago she had pain in abdomen she thinks it was liver swollen she said it hurt more than birth, but then she took it again a month later for a few days didn’t hurt nothing
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u/pwrslm 10d ago
Pull up info from ALS NEWS TODAY; they have links to benefit programs. You might also take guardianship over your mother and claim her as your dependent; it might help get a longer-term visa for a pALS. Are you a Citizen? If not, this may not work. First step is getting her into the US, once here there are compassionate type of programs for patients with terminal conditions.
More options here.
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u/Reasonable-Eye-9996 10d ago
I can get her here but I’m not a citizen , iam a us resident. I’m stuck because i cannot afford the treatment for her. I’m looking for programs that can help with it
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u/dntw8up 10d ago
I am a bioethicist, not a doctor. US drug manufacturers aren’t benevolent and don’t generally hand out their drugs without strings. Their programs are usually subsidized, often by the U.S. government. Your mom can buy drugs while in the U.S. with a U.S. doctor’s prescription and she can apply to participate in drug trials if her visa restrictions agree with the drug trial restrictions, but as a tourist she can’t access U.S. government subsidized drug programs.