Icebucket challenge
Today I have struggled as to why I don’t like the ALS ice bucket challenge.
I think there are several reasons.
1. Who has hijacked this? My research as shown that maybe ALS. BUT is it hijacking or just getting in on the act? Who cares, good stuff has been done.
Some people have knocked Macmillian for doing so when they didn’t. In fact it is more the other way around; The ice challenge was noticed by Macmillan around a month ago in New Zealand but people taking part were choosing a cancer charity to donate to. Macmillian received their first donation due to this on 23rd July where as ALS started its campaign on 29th July.
“The Cancer Society, a cancer charity in New Zealand, thanked those who had so far donated through the “Ice Water Challenge” in a statement dated 8 July 2014. Macmillan on to receive its first donation as a result of the challenge on 23 July.”
2. ALS and Motor Neurone Disease Association are doing excellent work that helps sufferers cope, provide information on treatments and help with research into this complex set of conditions. However both of the associated charities here in the UK and in the USA test on animals. Some people think what has been done is not acceptable.
Pamela Anderson
Using animals in research is not to clear cut. What about the mice that are studied for the conditions they have so that we can better understand the role of disease progression and its causes? If we are not inflicting pain or causing suffering on them then why not? That is a difficult one for me and less clear cut in my mind.
For me testing drugs & chemicals on animals I draw the line. Roughly 4% of drugs that are successful in animal trials move pass human trials. I find this unacceptably low success rate. What about other methods? Do they have better alternatives? What are the success rates of those? Actually we don’t know because currently all drugs brought to market have to be tested on animals by law.
An EU investigation found that animal testing generally has a high scientific value, but that very few animal testing trials have a high medical benefit.
This video of Dr Laura Waters in relation to animal testing is quite interesting.
She makes the interesting point of supporting charities that will fund alternatives to animal testing so that the alternatives can be properly researched, scientifically evidenced and peer reviewed as valid alternatives. This can then be used as evidence to change legislation.
There are actually a fair few. For example MS Research and Relief Fund & Multiple Sclerosis Trust do not but The Multiple Sclerosis Society do CAMPAIGNS & experiments
3. ALS/ Motor Neuron Diseases are horrible and I wish them on no one. I hope that there is a cure one day soon. I find it hard to sit here and talk about how bad it is when I know that the majority of suffers we hear about are in the first world. Most will have had 20 to 40 years of a relatively good life before this horrible disease took over and drastically shortened their lives.
It is not even anywhere near the largest killer in the western world… I did some maths: Of the 8 disease killers in the USA ALS only accounted for 0.74% of the deaths compared to 65.15% from heart disease.
It was also fairly well funded last year. ALS got $23 million for research (so about $3,382 per death). Heart disease, $54 million (about $90 per death).
Donating vs Death Graph
Let’s compare to people in the third world where death in infancy is common. How many more people are dying from preventable diseases because they do not have clean water for example? WHO in 2009 said that 3.4 million people died every year due to water borne diseases. In 2012 801,000 children younger than 5 years of age perish from diarrhoea each year, mostly in developing countries. That is 11% of the deaths of children under 5 worldwide. Compare that to the USA 6,849 died in 2011 from all types of motor neurone disease (ALS is just one type)
ALS alone have raised $70 million so far compared to $2.5 million last year. I have to question the value. Research has lead me to find there is a term for this: quality-adjusted life year This is a measure of disease burden including both the quality and the quantity of life lived. The money needed to give 1 quality-adjusted life year to an ALS sufferer gives 500 quality-adjusted life years when applied to Malaria nets.
Malaria nets have been very effective. In 2012, there were about 207 million malaria cases and an estimated 627 000 malaria deaths (with an uncertainty range of 473 000 to 789 000). This is a drop of 42% globally in 12 years.
This article about donation is worth a read ALS ice bucket challenge and why we give to charity donate
So what am I going to do? I am going to consider these questions:
1. Where is the greatest need?
2. Where will my money have the greatest influence?
3. What is the most urgent problem?
I think there are several reasons.
1. Who has hijacked this? My research as shown that maybe ALS. BUT is it hijacking or just getting in on the act? Who cares, good stuff has been done.
Some people have knocked Macmillian for doing so when they didn’t. In fact it is more the other way around; The ice challenge was noticed by Macmillan around a month ago in New Zealand but people taking part were choosing a cancer charity to donate to. Macmillian received their first donation due to this on 23rd July where as ALS started its campaign on 29th July.
“The Cancer Society, a cancer charity in New Zealand, thanked those who had so far donated through the “Ice Water Challenge” in a statement dated 8 July 2014. Macmillan on to receive its first donation as a result of the challenge on 23 July.”
2. ALS and Motor Neurone Disease Association are doing excellent work that helps sufferers cope, provide information on treatments and help with research into this complex set of conditions. However both of the associated charities here in the UK and in the USA test on animals. Some people think what has been done is not acceptable.
Pamela Anderson
Using animals in research is not to clear cut. What about the mice that are studied for the conditions they have so that we can better understand the role of disease progression and its causes? If we are not inflicting pain or causing suffering on them then why not? That is a difficult one for me and less clear cut in my mind.
For me testing drugs & chemicals on animals I draw the line. Roughly 4% of drugs that are successful in animal trials move pass human trials. I find this unacceptably low success rate. What about other methods? Do they have better alternatives? What are the success rates of those? Actually we don’t know because currently all drugs brought to market have to be tested on animals by law.
An EU investigation found that animal testing generally has a high scientific value, but that very few animal testing trials have a high medical benefit.
This video of Dr Laura Waters in relation to animal testing is quite interesting.
She makes the interesting point of supporting charities that will fund alternatives to animal testing so that the alternatives can be properly researched, scientifically evidenced and peer reviewed as valid alternatives. This can then be used as evidence to change legislation.
There are actually a fair few. For example MS Research and Relief Fund & Multiple Sclerosis Trust do not but The Multiple Sclerosis Society do CAMPAIGNS & experiments
3. ALS/ Motor Neuron Diseases are horrible and I wish them on no one. I hope that there is a cure one day soon. I find it hard to sit here and talk about how bad it is when I know that the majority of suffers we hear about are in the first world. Most will have had 20 to 40 years of a relatively good life before this horrible disease took over and drastically shortened their lives.
It is not even anywhere near the largest killer in the western world… I did some maths: Of the 8 disease killers in the USA ALS only accounted for 0.74% of the deaths compared to 65.15% from heart disease.
It was also fairly well funded last year. ALS got $23 million for research (so about $3,382 per death). Heart disease, $54 million (about $90 per death).
Donating vs Death Graph
Let’s compare to people in the third world where death in infancy is common. How many more people are dying from preventable diseases because they do not have clean water for example? WHO in 2009 said that 3.4 million people died every year due to water borne diseases. In 2012 801,000 children younger than 5 years of age perish from diarrhoea each year, mostly in developing countries. That is 11% of the deaths of children under 5 worldwide. Compare that to the USA 6,849 died in 2011 from all types of motor neurone disease (ALS is just one type)
ALS alone have raised $70 million so far compared to $2.5 million last year. I have to question the value. Research has lead me to find there is a term for this: quality-adjusted life year This is a measure of disease burden including both the quality and the quantity of life lived. The money needed to give 1 quality-adjusted life year to an ALS sufferer gives 500 quality-adjusted life years when applied to Malaria nets.
Malaria nets have been very effective. In 2012, there were about 207 million malaria cases and an estimated 627 000 malaria deaths (with an uncertainty range of 473 000 to 789 000). This is a drop of 42% globally in 12 years.
This article about donation is worth a read ALS ice bucket challenge and why we give to charity donate
So what am I going to do? I am going to consider these questions:
1. Where is the greatest need?
2. Where will my money have the greatest influence?
3. What is the most urgent problem?