The ALS ice bucket challenge has succeeded in raising over $40 million for the ALS association, as well as immeasurable awareness for the rare disease

The ALS Ice Bucket Challenge: Effectively Raising Global Awareness for an Orphan Disease

In Advocacy by Cecile

The ALS ice bucket challenge has succeeded in raising over $40 million for the ALS association, as well as immeasurable awareness for the rare disease

In the past few days, there is no doubt that you will have found that your news feeds and newspapers will have presented you with pictures or videos of high profile celebrities doing the ‘ice bucket challenge.’

The challenge’s aim is to support and raise awareness for people who have ALS –  Amyotrophic Lateral Sclerosis. The disease is very rare, occurring in 1 to 2 people out of every 100,000. From onset of the disease, people generally survive for 3-5 years. This high fatality causes muscle wasting and the death of motor neuron cells. As the motor neurons are do not receive or carry any signals to the muscles for contraction, the muscles gradually become weaker. The most serious complications with this condition are  the eventual respiratory problems that arise. The intercostal muscles of the lungs gradually become weaker, until those afflicted can no longer breathe on their own, usually resulting in lung failure or heart failure .

What is common across rare diseases is that there is a lack of public awareness about them. In addition, clinical and drug development for these conditions does not readily occur, as the patient population is small and pharmaceutical companies are not guaranteed a large return for investment in such diseases.

Thanks to government schemes such as the FDA orphan drug designation programme and the EMA orphan drug scheme, pharmaceutical companies are now, more than ever, being given significant incentives to work on rare diseases. These incentives range from exclusive marketing rights periods to tax breaks.

Patient advocacy groups are also a growing force in the battle against rare diseases, and this couldn’t be better illustrated than through the current ALS ice bucket challenge campaign, which has gone viral on social media.

The challenge involves either dumping a bucket of ice and water over one’s head, or donating money to the ALS association to raise money for research and services for people with ALS. The campaign has enjoyed great popularity, with high profile figures and celebrities participating,  notably President Bush, Eva Longoria, Bill Gates and facebook founder Mark Zuckerberg.

Despite the success of the campaign, there are a number of positives and negatives that must be considered. Although the campaign has been successful in raising over $40 million dollars in funds and immeasurable levels of awareness, it does not ensure that everyone who takes on the challenge will donate money to the cause. Whilst raising awareness is arguably as important as raising money for the cause, raising funds is key if research is to be carried out to find a cure for the fatal condition. Once the media hype surrounding the campaign has withered, will donations and awareness for the disease still be significant? This campaign may very well follow the fast-fashion phenomenon: if it’s out of fashion, move on to the next new trend.

The campaign is a victory for the orphan disease community, and will no doubt inspire many other advocacy groups. Although not many people are affected by individual rare diseases, there are so many different rare diseases that there is actually a high number of people who are affected with a rare disease. Hopefully, this campaign will go beyond raising awareness for ALS and foster a greater level of awareness for all orphan diseases and research.

Read more about it here:  Fight ALS with the ice bucket challenege