For the past month or so we have all seen ice bucket challenge videos of friends, family and celebrities dumping buckets of ice water on their heads, making donations to ALS foundations, and asking others to do the same. In addition to giving us some good laughs, the campaign has raised over $70 million. And that is the point. There are many diseases we don’t have all the answers to, they range the spectrum from infectious, cancerous, autoimmune and idiopathic (a fancy way of saying “we don’t know” and still sound smart.)
For the record, just as the ice bucket challenge was going viral, I was interviewed on the Phoenix NBC affiliate about the health affects of cold water shocks and any health consequences. Unless you have a predisposition to heart rhythm irregularities it should be a safe activity – just be sure not to fall or have someone drop a heavy bucket of ice on you.
For people diagnosed with a life long illness, lives are altered. Some diagnoses bring more change than others – depending on how day-to-day life changes come from the diagnosis or treatment. This emphasizes how important it is to get a diagnosis correct. The only way to improve the outcome of a diagnosis is through research – for better and earlier diagnostic tests, treatments with better results and less side effects. Research for clinical treatments is time-consuming and expensive. There is not enough money available for all the diseases that need more research – leaving many underfunded diseases.
Most medical research in the US is funded by the National Institutes of Health. Over $30 billion in grant funding is scheduled for this year. The competition for funding is fierce and complex. Most universities have entire departments to help researchers with the process of applying for grants. Private industry can choose the diseases they invest in, and have improved the lives of millions of people, however, as private businesses they also need to develop products that will be used by many. It doesn’t make business sense to invest millions of dollars in a product that won’t generate sales to cover the cost of development.
What has filled the gap between highly prevalent diseases and NIH funding are patient organizations. These groups have, for several decades, brought together people who share a connection to diagnosis, raised awareness and money for research – with direct benefit to those in need. 30 years ago people would whisper the words “Breast Cancer” or “HIV” – today there are huge organizations that have taken these “taboo” diagnoses into the mainstream. They have raised huge sums of money and affected government policy. The result: more and better treatments which have resulted in longer, healthier lives for those diagnosed with these conditions.
Many of the non-profits hold events – dinners, fundraising parties and athletic training programs – a personal favorite of mine. I became involved with the Crohn’s and Colitis Foundation of America in 2010, and joined Team Challenge, their Half Marathon training program. Together, the NYC team raised over $250,000 and the entire event raised $3.7 million for the CCFA. For more of my thoughts on exercising for a cause, click here.
Besides the direct money these races or other events raise, there is media attention given to a cause that might not get it otherwise, as well as the stories of the people participating. Stories of how a diagnosis has affected their life or the life of a loved one, and how being part of an organization dedicated to improving the lives of those affected can bring change.
We can laugh at our videos of cold water drenching (see mine here – Ice Bucket Challenge), cry at some of the stories behind the videos and get annoyed that our Facebook/Twitter/Instagram feeds are being clogged by them, but to those affected by ALS this campaign is life altering, just as the diagnosis of ALS was in the first place. Just like my work with the CCFA was for me. Remember, the work done today can mean that the person diagnosed tomorrow has hope and options, not fear and shame.
The path to wellness begins with a proper diagnosis