Streams

Is This The Best Way To Give To Charities?

Wednesday, August 27, 2014

The Ice Bucket Challenge is on its way to raising $100 million for the ALS Association. But is a (one-off) donation to a disease-specific organization really the most effective charitable donation you can make? Felix Salmon, Senior editor at Fusion, worries about how the money will be spent and what other worthy causes are being ignored in favor of ALS.

Guests:

Felix Salmon

Comments [24]

God bless 'em for getting awareness for ALS.

Still,

5,600: Annual deaths caused by ALS

160,000 annual deaths from lung cancer in the US alone.

It causes more deaths than the next three most common cancers combined (colon, breast and pancreatic).

And yet celebrities--many of the same ones who went under the ice bucket--and movies continue to promote and glamorize smoking, acting as de facto "tobacco industry spokespeople."

Aug. 28 2014 03:39 PM
Sarah Gowrie from Morningside Heights

Hi,

While Felix was advocating for the NIH to manage the research for rare diseases, he missed a crucial part of the conversation: In 2006, the NIH budget was cut for the first time in 35 years. And the cuts have continued.
A dozen years ago, an investigator’s chance of obtaining NCI funding was 21 percent. It is now as low as 7 percent. How do we put our faith in NIH if funding is on a steady decline?

I think it's a little unfair to say that all disease-specific research is a bad investment. Blood cancer research (blood cancers are considered orphan diseases and each subtype is certainly considered rare) has had a drastic impact on the cancer landscape. From 2000 to 2013 almost 40 percent (31 of 81) of new anti-cancer drugs were FDA-approved for patients with blood cancers. And many of these drugs are undergoing clinical trials (or are currently prescribed)to help patients with other cancers. Just something to consider

Aug. 28 2014 01:57 PM

As the mother of two children living with chronic, incurable diseases, I can't understand some of the criticisms of the ALS ice bucket challenge. Earlier today I read an article (http://cindyconey.com/the-als-ice-bucket-challenge/) by patient advocate and speaker Cindy Coney in which she addresses the "small, yet very vocal, minority who object to the campaign." Ms. Coney's take is straightforward and interesting because she has worked professionally in the nonprofit sector for nearly three decades but is also a patient herself (she has the autoimmune disease lupus). Increased public awareness and education regarding any serious illness supports patients and their families. Period.

Aug. 27 2014 05:16 PM

As the mother of two children living with chronic, incurable diseases, I can't understand some of the criticisms of the ALS ice bucket challenge. Earlier today I read an article (http://cindyconey.com/the-als-ice-bucket-challenge/) by patient advocate and speaker Cindy Coney in which she addresses the "small, yet very vocal, minority who object to the campaign." Ms. Coney's take is straightforward and interesting because she has worked professionally in the nonprofit sector for nearly three decades but is also a patient herself (she has the autoimmune disease lupus). Increased public awareness and education regarding any serious illness supports patients and their families. Period.

Aug. 27 2014 05:15 PM
tom LI

G from SI got to my point ahead of me. This is such a look at me American, first world idea. Its a Selfie of the worst kind - people showing off that they're doing something altruistic. How about donate and shut up about it!?!? Oh no! That wouldn't be very American now would it!?!

Howard Stern took the challenge and did it the best. One ice cube, in a small cup,showing how silly the whole thing is.

I'd like to see a rotten tomato challenge...putrid tomatoes thrown at faux celebrities, for a donation. Kardashian Clan, any Bachelor/Bachelorette contestant, all the Housewives of anyplace, Duck Dynasty...you name the reality show and they qualify. Also the top 1000 members of these fan clubs!

I'd pay twice for that!

Aug. 27 2014 03:42 PM
Fred from NJ from New Jersey

Charity is not the only route; we already have an example of how the profit motif is harnessed to treat rare diseases such as ALS. Due to the advocacy of NORD, the National Organization for Rare Disorders (and a worthy recipient for those charitably inclined) the Orphan Drug Act was passed in 1983. This law provides extended patent exclusivity and federal subsidies for development of drugs to treat diseases affecting many fewer individuals than would support conventional investment. Moreover, it restores patent coverage for old off-patent drugs when companies demonstrate unforeseen utility for rare diseases. (By statute rare is defined as fewer than 200,000 individuals affected.) This law encouraged the development of drugs to treat Wilson's disease, Cystic Fibrosis and Gaucher's Disease among others and counters the often expressed criticism that drug companies aren't interested in markets that are too small.In fact, Orphan Drugs have been very lucrative especially to companies formed specifically to address these opportunities.

Aug. 27 2014 11:49 AM
Abbe from Brooklyn, NY

On the air, some take-offs on the Ice Bucket Challenge were mentioned. I suggest that people Google the Hummus Challenge. It does have a political message, but it is also funny.

Aug. 27 2014 11:44 AM
Coogan from NYC

Science hasn't even found a cure for something as "simple" as Herpes, which what 1 out 4 people have, which a doctor friends recently told me the stats of. It doesn't kill like ALS, MS., etc, but shows if funding isn't provided for ailments that affects a wide majority of people, they'll never be a cure.

Why do scientists not receive funding for seemingly easier to cure diseases, and instead concentrate on a far more rare diseases which are extremely complex and afflict far fewer people? Doesn't make sense.

Aug. 27 2014 11:32 AM
g from staten island

There are people in our western states whose wells have run dry. there is a drought out west. People all over the world are desperate for water. Absolutely irresponsible to dump and waste water/ice. The creators of this stunt should go spend a week in a place where it is hot and the clean water does not come plumbed out of the tap. The ALS charities should have asked for a more responsible stunt! Shame on those charities and the people who participated and have never know a day in their lucky lives without clean, available water!

Aug. 27 2014 11:23 AM
Amy from Manhattan

Sarah, you're right, but it's not just disparaging, it's stupid. The fact that there's no known prevention or cure is exactly the reason money needs to be spent on research.

Bob, no, because he was talking about the water used to flush our toilets--what comes out of the tank or the wall pipes to flush the toilet *with*. It's the "before" water, not the "after" water that's mixed w/what comes out of us. His whole point was that the water we use to flush our toilets is cleaner than what many people have available to drink.

Aug. 27 2014 11:22 AM
Seth

it began “with one name”: Pete Frates.

Aug. 27 2014 11:20 AM
Seth

"A former Boston College baseball player, Frates was diagnosed with ALS in 2011. On July 31 of this year, he challenged some friends and celebrities (including NFL quarterbacks Tom Brady and Matt Ryan) to take the ice bucket challenge to “strike out ALS.”"

Aug. 27 2014 11:19 AM
Mark from NYC

A campaign giving a chance to reverse the water footprint from the ALS ice bucket challenge.

Please share!

https://my.charitywater.org/reverse

Aug. 27 2014 11:18 AM
Seth

wasn't it started by a former baseball player who now has als and his wife?

Aug. 27 2014 11:17 AM
Estelle from Brooklyn

The charity I give most to is the World Food Program. First, my dollars are worth more in other parts of the world. Second, they don't use up my money sending me endless mailings (the way other charities do) or fundraising.

Aug. 27 2014 11:14 AM
Amy from Manhattan

Mr. Salmon made it sound as if there's no way to find out how charities are spending donation money (many have high %s going to administration & fundraising), but there are watchdog organizations (only one I can think of right now is Charity Navigator) that track ethics & effectiveness.

Aug. 27 2014 11:11 AM
Tapgirl from village

I thought Matt Damon was going to DRINK the toilet water. and we should, it would make an even bigger point and be a true challenge.I would do it to show how clean our water is here in the US, especially NYC (yes I drink only tap water) If only every person in NYC would give all the money they spend in a year on ridiculous bottled water and water filters...to fund clean water world wide...

Aug. 27 2014 11:10 AM
Bob from Westchester

I like Matt Damon, but isn't the one bucket of clean water he saved by using toilet water going to be much outweighed by the amount of clean water used he uses showering afterwards to get the gunk off?

Aug. 27 2014 11:05 AM
CR from Manhattan

Their website alsa.org - provides some details on their financials.
Before you pour ice water on your head, you should visit it:
http://www.alsa.org/assets/pdfs/form-20990-20-20f2014-20irs-20sgd-2006-11-2014.pdf

Not saying there is anything wrong with what they do; salaries are over $5M, their "fundraising" expenses are $3.6M. They spend a lot of money lobbying, $757K, they pay a marketing firm $3M. Not seeing anything about private jets and fundraising trips to the French Riviera. They may be a fine charity. Before you give, you should investigate for yourself.

Aug. 27 2014 11:05 AM
Leo A from NJ

My major problem with this ALS challenge is that the majority of people don't bother to research how efficient this organization is with the money that is being received. My other problem is that people only pour the ice seconds before they pour it on their heads. I mean at least keep it in there for 10 minutes.

Aug. 27 2014 11:04 AM
RJ from prospect hts

This goes beyond the ice-bucket challenge and disease-specific funding. The Gates and Clinton foundations dominate international health funding--which diseases and how--and Gates, as is well-known, dominates education funding. Governments--specifically the US government--have dramatically reduced their funding for basic and advanced science research.

Aug. 27 2014 11:00 AM

5,600: Annual deaths caused by the ALS
3,400,000: Annual deaths from having no access to clean water

Aug. 27 2014 10:59 AM
Sarah, sustaining member from CT

This paragraph is particularly and unnecessarily disparaging of both PALS and the ALS Association, "Of all the charities to have become a surprise beneficiary of a weird viral phenomenon, then, ALS is hardly the best and is in many ways one of the worst. For all the money being donated, an even bigger effect of the ice bucket challenge is “awareness”—and awareness of ALS does precious little good to anybody. Knowing about ALS won’t help anybody prevent it, for instance. On top of that, most of the money is not going to help people with the disease, because the ALS Association mainly spends its money on research."

Aug. 27 2014 08:28 AM
Sarah, sustaining member from CT

This article gets a great many things about the ALS Association wrong - i.e. they fund research and patient support services equally - and the author seems to completely miss the main gain for the ALS community which is, sunlight. ALS is a profoundly isolating disease for patients and their families due in part to the unbearable and inevitable decline and horrible death of those diagnosed but also because most friends and family of those diagnosed have to be taught even the most basic facts about the disease due to a lack of awareness of ALS (prior to the challenge) and that task is exhausting and stressful and generally so freaks people out that they can't find a way to face it and support the family. Is the "challenge" silly? Yes. Should the NIH be funding disease research at a faster and more reliable clip? Obviously, but why ALS which is so long been in the shadows is getting such arrogant pushback when for decades other diseases, i.e., breast cancer has been Walking and "Pinking" everything in sight to raise awareness and $, I cannot comprehend.

Aug. 27 2014 08:24 AM

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