Since ALS is a rare medical condition any countries especially the developing countries lack facilities to deal with the disease. There is hardly any research or programs that help the patient and their families to find support in the trying time. Additionally, the economic compulsions of the developing countries prevent them from investing in R&D of rare and incurable diseases. Chaneling the attention and funds in this direction may require some bending the rules both at national and international levels.
Tweaking the rules of the game (an Economics perspective)
A Few ideas to get things moving:
International organizations like World Health organization can grant credits like Carbon Credit to countries who initiate new programs for patients of incurable diseases. The pharmaceutical companies may be asked to join in a yearly conference and inform the world about their research initiative for rare and incurable diseases. Research for incurable disease could be made a part of the pharmaceutical companies CSR activities.
More focussed awareness campaigns
Awareness regarding incurable diseases like ALS is not very wide spread in developing countries. The need of the hour, therefore, is to run focused campaigns over the incidence and prevalence of the disease, its symptoms, diagnosis, medication both traditional and alternative, and support and facilities.
Ice Bucket Challenge
In the year 2014 the viral world was going gaga over the a unique intiative named the Ice Bucket Challenge where scores of celebrities including Mark Zuckerberg, Bill Gates, Tom Cruise, and hundreds of other celebrities from different fields poured a bucket full of ice water over themselves and uploaded their videos on YouTube and social media. This was primarily aimed to ask for donations before nominating others from the challenge. The initiative’s goal was to collect funds for ALS research, which many opine, did not catch the limelight. People posted their videos without mentioning about the disease and the cause. It became a matter of entertainment with the cause remaining in the postscript.
The mistakes of ice-bucket challenge should not be repeated wherein the campaign gained massive popularity amongst the masses, but largely due to the entertainment value. The real focus shifted away from awareness spread of ALS to the fact that celebrities were challenging each other to throw a cold bucket of ice on themselves. In any future campaign the focus has to be to get the intended message across with a crisper and crystal clear message without losing the viral-quality of the campaign. However, the efforts did not go in vein. The campaign collected more than $100 million in just 30 days, which was used to fully fund several research projects related to ALS. Project MinE is one such data driven initiative funded by ALS Association through the ice bucket challenge funds and assistance from other organizations. In July 2016, the researcher of the project announced that they have been able to identify a new gene associated to ALS that may lead to new treatment possibilities.
J.K.Rowling’s ALS Institute in Scotland
Anne Rowling Regenerative Neurology Clinic is a charitable clinic cum research institute of University of Edinburgh working on neurological diseases. Funded in 2013 by the donation of one million pounds by famous author J.K. Rowling in memory of her mother Anne Rowling who died of multiple sclerosis, the clinic welcomes people with neurological conditions and provides them with out-patient care. The clinic undertakes all its activities in collaboration with the UK’s National Health Service. There the patients have access to different research projects and clinical trials provided they wish to take part in them. The clinic also carries out laboratory-based clinical research.
Reach out to alternative treatments
Patients with ALS of any other incurable disease need greater empathy than others. It is necessary to understand the pain they go through as their health status declines slowly but surely. Treating them with care and patience will help them to cope up with the trauma.
It is of immense importance to spread awareness about the disease as many a times family members of the affected person do not know what to do and how to deal with the patient. The societal support also needs to be strengthened to handle different situations related to the disease. Since there is no cure under the contemporary allopathic medicine, alternative medicines can be tried to seek cure. More research in this direction is the need of the hour.
Initiatives from the not-for-profit- organizations in dealing with the depression that arise in the ALS patient is much needed. Governments & NGOs can actively help by redirecting funds to open more anti-depression centers, psychotherapist hotlines and other means of reaching out.
Emphasizing early detection
Early diagnosis is the best way to delay the progression of the disease. Research can be conducted to find out medical tests that may lead to early and precise detection.
Alternative medicines need to be considered as a way out of the disease, when the western allopathic treatment has failed to provide cure. Fous on research in alternate medicine should be enhanced.
Planning for medical and non-medical costs and accommodating the new requirements in their lives families of ALS patients can be in a better positon to handle the conditions arising out of ALS. ALS patients need a lot of attention to sustain. However, beyond the caregiving, family and friends need to spend quality time with the patient to the patient in upbeat mood despite the medical conditions.