At #RDDNIH, or Rare Disease Day at NIH, I was definitely troubled by a world map presented, that displayed emerging infectious diseases by region.
Let’s unpack this a little bit…
Anthony S. Fauci, M.D., Director of the National Institute of Allergy and Infectious Diseases, NIH, divides infectious diseases into two groups: Newly emerging infectious diseases and older diseases that are re-emerging. As Dr. Fauci put it:
“All newly emerging infectious diseases start off as “rare diseases”… until they are no longer are.”
A good example, and the “mother” of the new infectious diseases, is HIV. To our knowledge, we had never experienced that disease when it first appeared in the U.S. in the summer of 1981. At this time, it was considered rare.
Now, with 2.1 million new HIV infections in 2015, it is clearly no longer considered “rare”. But given it’s impact on people’s lives, it received enough attention to increase the life expectancy after diagnosis by fifty years more than it was in the 1980’s. A system was put in place to handle HIV and that is now impacting how we deal with rare disease as a whole… but more on that in a minute.
I think it’s worth it to note that among those on this list of new infectious diseases that were once considered “rare” is Lyme disease, a tick-borne illness that I am personally infected with. It’s frightening to think that an illness can go from “rare” to widespread so quickly, not just throughout the United States Northeast, but all around the world.
Solid examples of older diseases that are re-emerging are West Nile Virus, Zika and Ebola. These rare diseases, while at one point only having affected relatively few people, have had an extraordinary impact of the awareness of the nation.
For example, Zika was unknown until the 1940’s. Eventually it worked it’s way across the Pacific, and into Micronesia in 2007. Because it was considered a mild virus, it wasn’t treated as seriously at HIV, resulting in no real treatment or vaccines for it.
Then, it made it’s way into Brazil in 2015, to a population that was never exposed to Zika before.
Once it hit Brazil, an explosion of cases happened and it was discovered that if pregnant women contracted Zika, it could lead to tragic cases of microcephaly in newborns. Not only that, but there are other structural and functional anomalies and disabilities that it could cause, leading to the name: Congential Zika Syndrome.
While the NIH is working on a vaccine for the virus, they realize that emerging infectious diseases are a perpetual challenge. It becomes a more complex issue when new diseases are perceived as rare, but then explode into something like HIV. Dr. Fauci explained,
“We will always see newly emerging, infectious diseases.”
But the good news, and where the HIV story comes in, is this:
The platform that was created for HIV has been used over and over again for all of the infectious diseases on the global map Dr. Fauci showed us. It is essentially the system we use to address newly emerging and old re-emerging rare diseases as well.
Even though rare and infectious disease will always be a challenge, we at least have a system in place to make great strides over time, like we have done with HIV. That system, to me, represent yet another reason to have hope.
