Stop criticising the Ice Bucket Challenge!

Published: September 5, 2014
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One in ten people have a rare disease and no access to treatment, support or a cure globally. This is an alarming situation and needs attention.

My advice, to those criticising the Ice Bucket Challenge for being a waste of water, is stop! Stop criticising long enough to understand the rare disease community and their struggles.

The kind of awareness ALS (Amyotrophic Lateral Sclerosis), has gotten over the past few weeks is the kind of well-deserved attention, I as someone who saw those closest to me suffer with a disease nobody knew off, could diagnose or had even heard off, wish and hope one day all rare diseases receive. People from all over the world have taken part in the campaign that has spread like wild fire. Celebrities have been partaking and contributing, children are conducting it at schools, friends have been nominating each other, and patients are rolling out on their wheel chairs to show support by pouring buckets of ice water over their heads and donating towards the cause.

My grandmother and mother had a rare genetic disorder called HD (Huntington’s Disease) and throughout their lives, we never saw a rare disease get attention as much as I have because of such campaigns and social media. We should encourage these fund raising, awareness tactics and support them instead of discouraging them. Why is there so much negativity surrounding an act like this?

The ALS community is no longer alone and rare, in fact they are rather strong. The funds will enable improved access to treatments, medical representation for individuals with these diseases and their families, awareness, public and physical education, a strong support system and a community on social media that has helped support research initiatives to find treatments and cures.

The level of research that scientists can now conduct with over $95 million in donations, that have been generously donated from all over the world with people like Stephen Hawking, a patient of ALS coming out and finally supporting this rare disease, will surely bring patients so much closer to treatments and maybe a cure one day.

For communities of rare diseases, the struggles are that they are underfunded and highly unrecognised. Due to lack of awareness, rare diseases have almost no funding and FDA approvals take years. It has been estimated that 95% of rare diseases currently have no FDA approved drugs and treatment, and for the 7000 rare diseases out there, there are currently less than 400 treatments that have been approved by the FDA.

Due to Huntington’s disease, my mother struggled her entire life, with no hope for a cure or even basic treatments being approved by the FDA during her lifetime or in the near future. Similarly, there is no cure or treatment for ALS except for one FDA approved drug, Riluzole, that only slows the progression of ALS.

We need to start pouring buckets of ice water on ourselves because according to the National Institute of Health at the current rate FDA is approving drugs it could take over 10,000 years to find therapies for all those who are suffering from rare diseases. This means that if, in the next few years, somebody from your family, friends or you are diagnosed with a rare disease, the only option you have is to suffer and spend the rest of your life hoping for a cure.

Such campaigns are the only way to speed this process up and supporting this movement is important because every time we choose not to get involved, choose not to donate to this cause and choose not to understand, we risk losing lives. 50% of those affected by rare diseases are children, which makes rare diseases even more deadly and debilitating for children all over the world.

One in ten people have a rare disease and no access to treatment, support or a cure globally. This is an alarming situation and needs attention.

Some numbers shared by the critics on Facebook state that the annual deaths caused by ALS are 5,600 and the annual deaths from having no access to clean water are 3,400,000. Individual rare diseases may have small patient population, but collectively the rare disease community is much larger than that of AIDS and cancer combined!

This campaign gives the rare community a chance to a unified voice. The success of the Ice Bucket Challenge is not just for ALS; it is of the entire rare disease community. Bringing everyone out on a common ground has given us, those suffering through it, a face. For the first time, we are not invisible to the world.

Rabbiya Abdullah

Rabbiya Abdullah

A visual artist, she is currently doing her M.A from the National College of Arts and is the president of Sooch Welfare Organization which educates the underprivileged youth of Pakistan and is currently working with the Global Genes Project. She tweets as @rabbiyaabdullah (twitter.com/rabbiyaabdullah)

The views expressed by the writer and the reader comments do not necessarily reflect the views and policies of The Express Tribune.

  • L.

    Yeh, we should fundraise for diseases which most likely already have a cure, but it would never be released just to make the pharmaceutical companies even more money. Oh, naivety. Recommend

  • Saad

    I’m opposed to it because they allocate only a small fraction of the donations to research, the rest goes as admin expense. They have received millions in the past as well and yet they have not came up with a cure, let a lone treatment. Bucket challenge is good for a cause, but the organisation looks really sketchyRecommend

  • Azaz

    So you are saying there was not any other way of raising awareness? We are wasting clean drinkable water like it is nothing. I agree that awareness of such rare diseases is important. But really? By wasting water? What is the use of being educated when we cannot use our brain.Recommend

  • khan

    you write using your brain not your heart… really dumb article and a complete waste of water…Recommend

  • Neehan Anis

    Well written article! For those of you who don’t know. When you donate you can select ‘use my donation for research purposes only’ and even if they use it for salaries what difference does that make. People are not going to do research without salaries. Admin is important too. Recommend

  • Ahmed

    You pour water with ice in it because when you do it, you feel a sensation temporarily which is similar to what patients with ALS experience every single day of their lives. That is why its called ICE bucket challenge. She maybe thinking from her heart but you are using neither.Recommend

  • Usman

    Rabbiya – I don’t know about others, but I ended up doing a bit of a research in terms of how much of the total donation gets allocated for ALS research purpose – tell you what – it is close to nothing!
    I am not against the ice bucket challenge – I think its a fantastic idea and wish that all that donation money is solely used to ALS and nothing else. But I am afraid that is not the case here.Recommend

  • Saher

    The notion that you are ‘wasting water’ with the Ice Bucket Challenge is completely baseless. The water lost as a result of the challenge shrinks in comparison to water lost everyday from, for example car washes. Where is the outrage there? Why aren’t we lobbying our elected representatives to pass laws to prosecute car wash owners? The Ice Bucket challenge main aim was to raise money and awareness about the disease, its aim was to get people talking, and they have succeeded in doing exactly that.

    Try and get out of your cocoon and think about the scores of families that have lost loved ones to an incurable disease. If downing a simple bucket filled with water over my head in any way helps ALS vicitms, then where is the problem?Recommend

  • Grammarian

    Stop supporting the Ice Bucket Challenge!Recommend