The Ice Bucket Challenge Isn’t Going Away

4 Responses to The Ice Bucket Challenge Isn’t Going Away

1. rem14 says:

   August 25, 2014 at 11:08 pm

   just for background, i am a scientist that works on cures like this, mostly for cancer. i have degrees from state schools, i have degrees from ivy league schools. i have received research grants from private, disease-focused foundations, such as the one you are attacking here, as well as the NIH. and i too have lost family and friends to “difficult” diseases that I’m sure you would shun like ALS.
   Your article is one of the worst I have seen in quite a while. you have no idea how change happens in medicine and disease and your thought of “why spend money on research now when it is going to take a long time to make a difference” and then say “why don’t people make the world a better place by giving money to homeless people or some other charity that is going to throw money at a problem that will be no different tomorrow” is insanely short sided.
   yea, we didn’t have a vaccine for polio, until people spent decades working on it – and then we did, and then we eradicated it, and that had a MASSIVE effect on childhood mortality and morbidity. you can say the same about countless other diseases that we developed vaccines for as well. and we didn’t have drugs to slow down hiv and aids to the point that people live decades instead of months – until advocacy groups mobilized private donations and government organizations – and then we did. for countless cancers, death rates used to be 90%+, but research was done, slow and steady at first, and then usually there is an inflection point, a drug target, a drug candidate – and then everyone applauds the foundations and the people who donated the money to allow the scientists to work on risky things for years, sometimes decades, to get it to that point. then if those discoveries work, and translate, and a new procedure or medicine is born, then everyone is better off for it.however, science is very expensive and there are pressures from granting agencies and departments and universities etc, so you can’t spend millions of dollars a year to work on something risky and new (and all new discoveries that really affect human health are just those things until they have “worked”) without money. you have to pay salaries, buy equipment, pay for reagents etc etc. in the world you, the author of this lovely piece, live in, we shouldn’t put any money into research for diseases like ALS, because, you know, it’s a hard one, and it might take a while, so screw all those people who are going to die a long, terrible death as their body completely gives out on them. instead, go give some money to the local guy on the corner, who was there two years ago and is going to be there for the next two years, that will do a lot of good for everyone. that guy is most likely there because he has mental illness, so maybe donate to research on those disorders, but, oh yea, they are even more complicated than ALS, screw that – just give him some beer money and tell him you’ll see him tomorrow.
2. Martin Cinzar says:

   August 26, 2014 at 7:00 pm

   Hi Felix.
   I read your article with great pleasure. These campaigns are great at self promotion, due to their “selfie nature”. You know Take a selfie, yell name of charity, hold it over your friends as a badge of honour.
   But we believe there is a better way. we’re a startup that would like to talk to you our approach to charities. IF you’re interested just e-mail me.
3. Taylor says:

   August 27, 2014 at 1:51 am

   Hi Felix, I read your article about ALS and while you bring up some good points and valid concerns, I think it’s important not to be too quick to condemn. As someone who’s lost a family member to ALS and as a biotech investor, I personally would rather see every dollar raised in the challenge go directly to various biotechs that work on neuro diseases (they are all related, so knowledge and treatments gleaned about one often carries over to others). The millions raised over the past few weeks could probably fund a dozen biotechs through phase 3 trials. One biotech (http://www.neuralstem.com/, I am an investor) has come up what may turn out to be a true treatment or cure, so ALS and hopefully all neuro problems are close to an inflection point. But at the same time, there are people out there with these diseases that are fighting and losing just to do little things like walk, say “I love you”, breathe, and eat. Many of these people won’t be around long enough to receive a treatment that works, and in lieu of that treatment, ALSA can soften the blows greatly for these patients and families, despite bloated administrative expenses etc. And lastly, we don’t yet know what will be done with all that money, I’m sure the ALSA community is feverishly debating it right now. And until these obscure diseases are treatable, maybe it’s not such a terrible thing to throw money at them? Ten years ago when my grandmother was diagnosed, hardly anyone I knew had heard of ALS. Now, hardly anyone doesn’t, and I think that’s a good thing not just for ALS but all neuro diseases.
4. Anonymous says:

   September 4, 2014 at 5:16 pm

   One point that you do not really address is the NIH funding disparity among research into diseases. There are certain maladies that have a highly disproportionate amount of government and private funding relative to others.

   Take, for example, Autism. No one disputes that autism is a terrible affliction. According to NIH, it affects 1 in 88 children age 8. NIH spent $186 million in 2013 on research, and Autism Speaks has spent over $100 million to date.

   Contrast this with food allergies. CDC estimates 5% of US children have food allergies and there are dozens to hundreds of deaths each year. So roughly 4 times as many children have food allergies compared to children who have Autism. NIH spending in 2013 on food allergy research was $36 million, or about 1/5th of what was spent on Autism. The largest private food allergy charity, FARE, spent $5 million on research last year. So a disease that affects many more people and kills more children receives far less funding, both public and private.

   This shows that the NIH is not always the best arbiter of how public money is spent on research. Politics, celebrity endorsements, and public perception can cloud public budget allocation in health spending, just like other forms of government spending. The private market is the only way to try to get funding to research in many underfunded diseases because the NIH spending model just appears to be broken in some cases.

   I would love to hear your thoughts on this, either here or in a future article.

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