This October, representatives from SmithSolve will be attending the Global Genes 2018 RARE Patient Advocacy Summit. Global Genes is a massive rare disease patient advocacy organization that does a lot of amazing work on behalf of the people for whom they advocate. When I first learned about Global Genes, I recall being surprised at just how big and how influential the organization was. After all, the odds of meeting someone with a rare disease were pretty small, right?
Let’s put those odds in perspective for a moment. Everybody wants to win the Powerball. I’ve even been lured into buying a ticket from time to time when the siren’s call of the jackpot is loud enough. Sure, the odds are about 1 in 292 million, but people still play religiously, dreaming of that big win.1 But there are some lotteries that nobody wants to win and, unfortunately, the odds of these lotteries are much higher than the Powerball. One prime example is the lottery of rare disease.
Unlike the Powerball, the chances of getting a rare disease are not truly random. There are a number of factors, both environmental and genetic. However, the odds of being diagnosed with a rare disease are inarguably higher than winning the Powerball. In the United States, a rare disease is defined as a condition that impacts fewer than 1 in 200,000 people.2 There are roughly 328,313,000 people in the United States, and it is believed that 25-30 million of them have a rare disease.3,4 That means there is roughly a 7.6%-9.1% chance of being diagnosed with a rare disease in the United States, compared to a 0.000000000034247% chance of winning the Powerball.
At first glance, that still sounds like a problem that is statistically unlikely to affect you or I, and people tend to not worry about problems that they do not think will affect them directly. After all, less than a 10% chance still doesn’t sound particularly threatening.
However, that 10% is deceptively large. Think of how many people you interact with on a regular basis. Include your immediate and extended family. Include your coworkers, friends, and other figures in the community that you see regularly. Include members of your church congregation and your kids’ friends. Now count all of these people up. If there are more than 10 people, statistically speaking, one of them is living with a rare disease. This means that someone you know, and presumably care about, is engaged in a fight against illness. It impacts you more directly than you realized.
Let’s try another comparison. If it is estimated that just shy of 10% of Americans are diagnosed with a rare disease, then that means it is easier to find someone in this country battling a rare disease than it is to find a child under five (6.1% of Americans), someone under the age of 65 with a disability (8.6% of Americans), or a vegan (6% of Americans).5,6
There is an old adage that states, “the needs of the many outweigh the needs of the few.” Normally, this is a pretty straightforward expression that relates to the concept of “majority rule.” However, there are some situations in which the needs of the few can have a serious impact on the needs of the many. Finding new treatments for rare diseases is one of those situations.
So next time you think about spending that $2 on a Powerball ticket, consider donating it to an organization that engages in rare disease research instead. Sure, a Powerball ticket could yield a very happy winner, but it also creates a lot of very disappointed losers. A breakthrough in rare disease research gives everyone a win.
- Begley S. What are the Chances of Winning the Powerball. TIME. http://time.com/money/4912123/powerball-chances-2017/. Updated August 23, 2017. Accessed July 13, 2018.
- S. Department of Health & Human Services. FAQs About Rare Diseases. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases. Updated November 30, 2017. Accessed July 13, 2018.
- Global Genes. Rare Disease Facts and Figures: 1 in 10 Americans is Living with a Rare Disease. https://globalgenes.org/raredaily/rare-disease-facts-and-figures/. Updated 2018. Accessed August 8, 2018.
- United States Census Bureau. U.S. and World Population Clock. https://www.census.gov/popclock/ . Updated August 8, 2018. Accessed August 8, 2018.
- United States Census Bureau. Quick Facts. https://www.census.gov/quickfacts/fact/table/US/PST045217. Updated July 1, 2017. Accessed July 13, 2018.
- Top Trends in Prepared Foods 2017: Exploring Trends in Meat, Fish and Seafood; Pasta, Noodles and Rice; Prepared Meals; Savory Deli Food; Soup; and Meat Substitutes – Research and Markets. https://www.businesswire.com/news/home/20170623005451/en/Top-Trends-Prepared-Foods-2017-Exploring-Trends. Updated June 23, 2017. Accessed July 13, 2018.