rare diseases united

Let’s Talk Numbers

Patty Weltin

Everyone in the rare disease space has heard the statistic that 1 in 10 Americans is living with a rare disease, about 10% of the population. I believe those statistics to be true, but I also believe that the people directly impacted by a rare disease is at least double that.

Let’s talk numbers. It is estimated that one-half to two-thirds of the 30 million Americans with a rare disease are children. I’m inclined to believe it’s two-thirds, but let’s stay conservative with one-half, which would be 15 million children living with a rare disease. Now let’s give half of the children two parents and the other half one parent, that’s 22.5 million. To remain conservative, we will say of the remaining 15 million adults, half need a caregiver, or 7.5 million. If my math is correct, the conservative direct impact of rare diseases is 60 million people or 20% of the population.

Why are these numbers conservative? Anyone who has a child or cares for an adult knows that their care often falls to aunts, uncles, grandparents, friends, neighbors and siblings. I have two daughters, both diagnosed with the same rare disease. For my eldest, the disease has led to many surgeries, doctor’s appointments, physical therapy appointments, etc. For my youngest, the disease, thus far, has only been a cosmetic issue. They both have Hypermelanosis of Ito, which leaves the skin either hypopigmented or hyperpigmented. What has been the impact to my younger daughter? She has missed school to help me care for her sister after major surgery. I have not been able to spend nearly as much time with her as I do with her sister. She has not been able to participate in activities because of her sister’s appointments. Despite having 17 surgeries, I believe my daughter to be in fairly good health compared to others living with a rare disease. I cannot imagine the impact to my family if my daughter needed constant care. Yet, in our example we have not included siblings.

Recently, U.S. Senator Marco Rubio said, “Poverty is not some rare disease from which the rest of us are all immune.” According to the Census Bureau, 47 million people are living in poverty. Poverty is a major issue and policy makers, corporate America, and the general public work to improve the lives of those living in poverty, as they should. Just like poverty, everyone in the family is affected by a rare disease, yet rare diseases are still considered uncommon and are largely ignored. Why? Maybe Senator Rubio’s statement holds the key.