The ice bucket challenge was undoubtedly a media and fundraising success for the ALS Association. For many people this was an opportunity to “do good” and call out their friends on social media to do the same. Skepticism mounted as social media feeds were inundated with ice bucket participant videos.
Plenty Consulting looked at the data and found that daily donations to the ALS Association (ALSA) remained the same even as the number of ice bucket challenge participants grew exponentially. Donations to the ALS Association were 35% higher than last year, but were all the non-donating participants missed fundraising opportunities or simply “do good” imposters? Perhaps it is helping to foster a culture of giving?
Vox published a widely shared bubble chart (above) that demonstrated which diseases kill the most people compared to which diseases get the most donations. This chart is flawed in the sense that comparing one-time fundraisers, such as a Breast Cancer Walk, isn’t enough to capture which diseases get the most overall funding.
Others took a more statistical approach to their skepticism. One individual (redditor SirT6) chose to look at NIH funding and disability-adjusted life years (logarithmic) to compare some of the top diseases that get funding compared to their impact on lifespan.
I think both measures in the above chart are flawed in that NIH funding is a poor indicator of where the general public is donating and also it is nearly impossible to compare the suffering and impact of each individual disease through adjusted life years.
Instead I chose to identify the largest charity for each of the top 15 diseases that kill people in the US (excluding #5 unintentional accidents) based on the 2011 National Vital Statistics Report from the Centers for Disease Control (CDC). A few charities took on multiple diseases, such as the American Heart Association (AHA) working on heart disease (#1) and stroke (#4) or the American Lung Association (ALA) covering lower respiratory disease (#4), pneumonia (#8), and lung inflammation (#15). By searching the most recent IRS Form 990 from each charity I looked at their Total Revenue (fiscal year) as well as the percent of the Total Revenue that came from Contributions (fundraising, grants, etc.). I figured this gives the best indication of where both individuals and other foundations or nonprofits are giving their donations. I then compared each disease/ cause of death in its “per 100,000” prevalence rate.
The size of the bubble represents the percentage of total revenue that comes from donations. The big take away here is that some of the most deadly diseases are getting larger amounts of funding. However, there are a handful of diseases that definitely aren’t getting enough (i.e. Septicimia), but are three times as deadly as ALS. Lung diseases really aren’t getting a lot of donations, but seem to remain highly funded regardless. In my research for this I was surprised to find that HIV/AIDS per 100,000 rate is less than ALS at 2.5. In particular areas, such as Detroit, HIV/AIDS is a much larger problem, but it is good to see that advances in treatment and prevention have lowered the national rate.
The majority of charities depend on contributions and donations to fund their efforts, pay salaries, and cover expenses. It is difficult to say what percentage is used for prevention activities or for finding a cure, but very obviously not all diseases are funded equally. Likewise, not all diseases contribute to the deaths of people at the same rates. Does that mean some should get more funding over others?