Ebola: Not In My Backyard

ebola-suit1Until very recently in the United States the general feeling among most people (and among most news reports) was that the catastrophic Ebola epidemic was only a problem ‘over there in the poorest countries of Africa–all of those uneducated Africans who can’t even keep their food from getting contaminated by bat droppings.’ This summer, we were happily dousing ourselves with buckets of ice water in the (dare I say ‘silly and oh so contagious social media’ hype) of the ALS Ice Bucket Challenge. (see my previous blog post: ‘Ice Bucket Challenge for Ebola‘ 8-26-14 for additional perspective on this in light of the global health burden of disease.) At the time that I wrote that blog post we had not yet had any patients tested/confirmed with Ebola in our country. Now, of course, we have multiple confirmed cases in the U.S., including two young nurses who had cared for a patient with Ebola in a Dallas, Texas hospital.

This morning in my community health nursing class of 150 students, I asked how many of them had had any training or preparation or discussion of Ebola in their clinical rotations. Only one student raised her hand and she said that was training through her job at a hospital (presumably Harborview Medical Center in Seattle which supposedly has done a good job of Ebola education and preparedness for its employees). The majority of students said they had been asked by friends or family members for information on Ebola. I encouraged them all to read the excellent training materials for the general public and for health care providers on the CDC website–and to ask for preparedness training in their clinical sites. I also encouraged students to be attuned to subtle and not so subtle racism in news coverage and general conversations about Ebola. Even infographics about Ebola on the CDC website depict only impoverished rural African people with Ebola, in one case showing a man defecating on the ground.

The fact that it is two hospital nurses who are the first confirmed Ebola cases to be contracted in the U.S. should come as no surprise to anyone who knows and loves nurses or who has spent any time in a hospital. Nurses are the front-line, down-and-dirty direct patient care providers. These two nurses were following current (at the time–they have been updated today) Ebola infection control procedures. And whereas the latest nurse with confirmed Ebola, Amber Joy Vinson, was first reported as having breached CDC protocol and flown on a commercial plane while she had a fever, CDC officials are now confirming that she first phoned them when she had a fever and was due to fly: “I don’t think we actually said she could fly, but we didn’t tell her she couldn’t fly,” CDC director Dr. Thomas R. Freiden is quoted as saying. “She called us, (…) I really think this one is on us.” (NYTNew Ebola Case Confirmed, U.S. Vows Vigilance’ by Manny Fernandez and Jack Healy, 10-15-14.)

It is always ironic that it takes ‘big scary disease’ epidemics like Ebola to remind us all of: 1) how connected we are to everyone else in the world–their problems are literally our problem, 2) the importance of sustaining a robust public health infrastructure, and 3) how vital nurses are to our health care system.

 

Ice Bucket Challenge for Ebola

imagesThe 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…