Ice Bucket Challenge nears $100m in donations
pharmafile | August 28, 2014 | News story | Medical Communications, Research and Development, Sales and Marketing | Clovis Pharma, Motor Neurone Disease Association
Charitable donations to a once obscure healthcare charity called the ALS Association have rocketed in August after its #IceBucketChallenge went viral.
As of yesterday, the US-based ALS Association says it has received $94.3 million (£56.8 million) in donations compared to $2.7 million during the same time period last year (July 29 to August 27). In line with its current trajectory, it will most likely tip the $100 million mark today.
These donations have come from existing supporters of the charity but predominately from the 2.1 million new donors. This has come as a result of its extremely successful social media meme via its #IceBucketChallenge Twitter hashtag.
ALS is the American name for the condition usually referred to as motor neurone disease (MND) in the UK, where the leading organisation is the Motor Neurone Disease Association.
The disease affects the brain and the spinal cord causing motor neurones to degenerate and die, leading to gradual paralysis and eventually death.
The use of the ice bucket is so that people can experience what it’s like to have their muscles seize up and not be able to move, mimicking for a few moments what sufferers with ALS must endure their entire lives.
So far a host of celebrities ranging from American pop singers Britney Spears and Lady Gaga to Facebook founder Mark Zuckerberg and even former US president George W. Bush (pictured), have drenched themselves in freezing water for the charity.
Anyone accepting the Challenge is urged to share a video of the event and nominate someone else to do the same, making a donation to any charity supporting ALS, which is also known as Lou Gehrig’s Disease in the US.
“The ALS Association has been given a great deal of money and with that comes tremendous responsibility,” says Barbara Newhouse, president and chief executive of The ALS Association.
“We are absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress to invest these dollars wisely in areas that will have maximum impact on the fight against this devastating disease.”
Treatments
Currently, there is only one drug approved by the FDA to treat ALS, which only modestly extends survival by two to three months.
The drug, Rilutek (riluzole), was originally developed by Sanofi, but last year sold the rights to the treatment to Swiss biotech Covis Pharma. Rilutek brings in around $120 million a year, but this was not high enough for Sanofi to consider keeping it.
Earlier this year the Israel-based biotech firm BrainStorm Cell Therapeutics began a Phase II study to assess the efficacy of its adult stem cell treatment NurOwn, although any marketing approval is still uncertain, with many years of research ahead of it.
Because of this lack of treatment ALS is fatal in all cases with the average survival rate for patients with the condition being three to five years from diagnosis. The ALS Association has spent around $99 million on funding research projects, predominately those looking at the underlying genetic causes of the disease.
It does not however have the financial power to fund the $1.5 billion needed, on average, to develop a new medicine for the disease (along with 15 years of R&D).
This is something only the pharma industry will be able to do, although there appears to be little appetite for that at the moment outside of speciality pharma firms, given the difficulty in creating a new drug when so little is understood about the condition, and the low rate of return on investment for the bigger companies.
Backlash and hijacks
Bizarrely, Macmillan Cancer Support hijacked the meme in mid-August and has also started its own ice bucket challenge page, but is raising money for cancer rather than ALS/MND.
The cancer charity came out this week defending itself against criticism that it stole the Ice Bucket Challenge, claiming it was simply looking to “amplify the actions of its supporters”, who were already taking part in the campaign and donating to the charity.
Macmillan’s head of digital Amanda Neylon says the charity has previously been criticised for not making the most of social media fundraising opportunities, such as the #nomakeupselfie that saw its ‘rival’ cancer charity CRUK gain millions in extra funding, and is aiming to become more responsive.
The charity has so far raised at least £500, 000 as a result of the Challenge, but has been accused of stealing the spotlight from the ALS Association.
An Australian news presenter, who was nominated to undertake the Challenge, also spoke out publically this week saying whilst it was a worthy cause, it would be a better use of people’s time to donate to cancer charities or give blood for free.
He also took aim at those using the Challenge as an excuse to ‘create an Instagram account’ and ‘show off’ what they were doing. He has since apologised.
And in a tragic twist, the Challenge has proven fatal for one Scottish teenager, who is believed to have drowned in a quarry after plunging into water as part of Ice Bucket Challenge over the weekend.
Ben Adams
