The U.S.-based ALS (Lou Gehrig’s Disease) Association has struck gold with it’s social media fundraising campaign, the ice bucket challenge. Even my neighbor across Lake Washington, the gazillionaire and global health guru Bill Gates has doused himself with ice water and presumably has donated money towards ALS research. As of today, the ALS Foundation has raised 88.5 million dollars, and according to news reports, they are trying to figure out what to do with all the money.
ALS is a terrible disease with a terrible burden on not only the ALS patient, but also on his or her family due to the years of increasing and intensive home care usually associated with the disease. I had a childhood friend who developed ALS, and my elderly father spent many hours doing direct care so that the patient’s wife could get some rest. I suppose ALS has been lumped in with ‘orphan diseases,’ diseases and disorders that are relatively rare, unknown, unsexy, and unprofitable for the large multinational drug industry. So it is a good thing the ALS Foundation now has more funding for research. By contrast, cancer and Alzheimer’s Disease are both big, scary, well-known diseases that get most of our research funding. That’s because they are both highly profitable diseases for drug companies and for the health care system.
But why not do an ice bucket challenge to raise money and awareness for devastating diseases like Ebola?
An ice bucket challenge to raise funds for Ebola research, education, and health care, would likely fail because Ebola, like the disease burden from most other infectious diseases, is largely isolated to the poorest and most remote villages of Africa. “It’s over there where the poor, illiterate, ignorant Africans live, so who cares?” (I’m quoting an imaginary Archie Bunker, but it is a very real and highly prevalent belief in our country). It seems that there have only been two confirmed cases of Ebola in the U.S. so far. They were both white American, Christian missionaries working in Africa who were flown back to the U.S. on private jets and given state-of-the-art (expensive) inpatient health care–including experimental medications– at the CDC-associated hospital in Atlanta. Of course, they both recovered and have now returned to their homes.
Meanwhile, nurses and doctors and burial workers in Liberia, Sierra Leone, Guinea, and Nigeria struggle to take care of an increasing number of Ebola patients. The NYT this week published an article and accompanying video highlighting the work of amazing nurses in Sierra Leone–nurses like Josephine Finda Sellu–who are taking care of Ebola patients because: “You have no options. You have to go and save others (…) You are seeing your colleagues dying, and you still go and work.” (“Those who serve Ebola victims soldier on” by Adam Nossiter and Ben Solomon, 8-23-14).
For some important (and largely overlooked) perspective, consider the findings of this recent study on the global health disparity in disease burden and in disease research. In their April 2014 PLOS (open-access, peer-reviewed scientific journal) article “Attention to Local Health Burden and the Global Disparity of Health Research,” researchers Evan, Shim, and Loanidis found that “the production of health research in the world correlates with the market for treatment and not the burden of disease.” Measuring disability-adjusted life years (DALYS–a now standard health measure for the number of years lost due to ill health, disability, or premature death), they report a global disease burden from infectious/parasitic diseases (such as HIV, TB, diarrheal diseases, malaria–and Ebloa) of 269 million years worth of DALYs. This is in stark contrast to the global disease burden of all malignant neoplasms (cancers) of 69 million years of DALYs. Then they show that the overwhelming majority of the world’s medical research dollars goes to cancer and to neurological diseases (mainly Alzheimer’s Disease, but ALS also falls into this category). They conclude that “the inequality of research limits current quality of care in less developed countries.”
Please remember that and also the heroic work of nurses like Josephine Finda Sellu, whenever you hear anyone mutter any sentiment close to “It’s over there where the poor, illiterate, ignorant Africans live, so who cares?”
I propose an ice bucket challenge for Ebola. Instead of wasting clean water and ice (luxury items, of course, in villages like those in Sierra Leone), consider donating money to support the work of organizations like Doctors Without Borders or Partners in Health. Practice what physician Paul Farmer calls pragmatic solidarity. Pass it on…