The Ice Bucket Challenge; a post-mortem

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Choosing a Charity

There has been a glut of articles and blogs recently about the ice bucket challenge, which for a few weeks of summer took up most of our news feeds on social media. Most have been grudgingly approving, taking the view that while the challenge itself is, well, slightly silly, the aim of raising money for an ALS charity is laudable.

But, more recently, a few articles have appeared taking a different view. Why support an ALS charity, they ask? What about more common conditions? Shouldn’t we give money instead to charities that deal with heart disease, stroke, and cancer, which affect many more people?

A graphic has also been doing the rounds, comparing the number of deaths caused by a particular disease to the amount of money we donate to charities relating to that disease.

Here it is:

charity

(source: http://www.iflscience.com/health-and-medicine/infographic-shows-differences-between-diseases-we-donate-and-diseases-kill-us )

 

If you try and crystallise this argument into a simplified form, it might go something like this:

We should focus on diseases that kill the most people

Or it might not only consider deaths:

We should focus on diseases that harm the most people.

Or it might go more like this:

We should give our charity to causes that do the most “good” per pound or dollar

 

I’ve seen versions of all of these arguments put forward, but there are flaws in all of them.

Deaths are important, of course, but they certainly do not tell the whole story. I’m going to die. If it happens because my heart stops beating suddenly, at the age of 102, having lived a full life, then that is fine with me. Please don’t give your charity money to prevent that. But if I begin to die in my thirties, from a disease that slowly causes me to waste away and lose the ability to move, then I’ll be grateful for any money you choose to donate to help me, or to research the disease. And what about diseases that cause pain, suffering or misery, but don’t kill us?

So how about broadening the concept to include quality of life, and quantity of life lived? The QALY (Quality Adjusted Life Year) or DALY (Disability Adjusted Life Year) is a measure designed for this purpose. It is used mainly to measure the success of a treatment. Additional years lived are given a score based on a quality of life measure. So if a treatment means I live a year longer, with a normal quality of life, I score 1 extra QALY. If my quality of life is poor, this number is reduced by a proportion. So QALYs can measure illnesses that don’t kill us, as long as they affect our quality of life significantly. But QALYs are a fairly blunt measurement, appropriate for the task of assessing how well aspirin works in stroke patients, but not accurate enough to pick a charity. How can you compare the quality of life lost by losing a leg to a landmine to that lost by having an unsightly skin condition? How can you compare the quality of life lost by being depressed with that lost by having cancer? How can you compare the quality of life of a refugee with that of a diabetic?

The QALY takes a utilitarian view of health. It tries to quantify suffering and loss through illness. It claims that a chronic disease suffered for 10 years, that “halves” my quality of life, has an equal effect on me as living normally for the first 5 years and suddenly dying. Can we really compare these and call them the same? These types of measures are useful for a research study looking at the cost and benefit of a particular treatment, but they don’t translate well to our actual experience of illness and health.

How about a simple financial assessment of lives saved per pound or dollar given? Various articles have pointed out that money spent on mosquito nets has the potential to save many lives in malaria-endemic areas. There is even a charity (“Charitywatch”) to help you choose a charity on this basis!

Or finally, how about considering what the money might be used for? Charity adverts love to say “£4 pays for a mosquito net. £100 will pay for fresh water for a village for a month”. ( How about “£100 will pay for a little of the cost of placing this advert in a newspaper”?). Putting aside overheads, one interesting choice is between charities that help people directly (such as providing medication) versus charities that invest in research. One argument I’ve read against the ice bucket challenge is that ALS has no cure, and practically no medical treatment. The implication seems to be that the challenge has raised lots of money and there is nothing useful to spend it on. But, quite aside from supporting people with ALS, what about research? Research is a riskier investment than buying treatments already proven to work. Research studies may have negative results, and lead nowhere. But research also has greater pay-off if it works. Should HIV charities focus on paying for existing HIV treatments, and stop looking for a cure?

What about rare diseases? What about diseases that affect one in a million people?  None of these arguments would favour investing in them. But sometimes rare diseases have a lot to teach us, and discoveries may not only apply to people with that rare condition. And if you grouped together all the people with rare diseases, they might form quite a large group. Should they be ignored?

I wouldn’t use any of these arguments to choose a charity to donate to. I would use my personal experience. I would base my choice on the illnesses that have touched me, either because I have suffered from them or because people close to me have. And I’m sure this is what most other people do too. And although this technique is disappointingly simple for people who have dedicated their lives to working out how to measure the impact of disease, it seems to work quite well.

As for the charities that seem to get more than their fair share – I think they should be congratulated for their efforts. After all, there is not a finite amount of money for charities to fight for. Most of the money raised through campaigns like the ice bucket challenge was not diverted from another charity. It could have been spent on a fast food or a night out.

The publicity and goodwill from the ice bucket challenge has given joy and hope to people living in the shadow of a particularly unpleasant disease, even before considering the money it has raised. That can’t be anything but good.

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