The Racial Gap in Cystic Fibrosis Treatment

April 2 ~ Written By Aabha Vadapalli

One in every 3,500 white newborns has cystic fibrosis. Cystic fibrosis is a genetically transmitted disorder which affects the lungs, pancreas and other organs. It causes thick mucus to form and sentences those infected to an early death. Historically, cystic fibrosis has been most common among whites, but, as developed countries diversify, cases are increasing in other races too. However, many who are not white don’t have the same access to treatment as white patients.

Many people with a Black, Hispanic or Asian background find it harder to get access to cystic fibrosis treatment. There is one main reason for this, a common misconception that people of color are immune to cystic fibrosis. The misconception started because cystic fibrosis was discovered by a Caucasian, the first documented patients were white, and Caucasians were also more likely to have it than any other race. This misconception often causes doctors to attribute signs and symptoms of cystic fibrosis to something else when they appear in a race that is not considered white. The American Medical Association found that when infants take the sweat test, a test which checks if newborns have cystic fibrosis, physicians often clear Asian, Black and Hispanic children as not having cystic fibrosis, even if they show signs of having it. This makes it difficult for people to get access to the correct treatment at the correct time (Rubin).

The effects of the lack of access to treatment on time are magnanimous. Black and Hispanic people are twice as likely to die from cystic fibrosis than whites. While there have been several national survival analyses of whites with cystic fibrosis, assessing symptoms, number of patients, what age those patients are, there has never been one for any other race. Today around 16% of cystic fibrosis patients in the US are people of color, compared to 10% just a few years ago, and that number is quickly rising (Digitale).

The racial gap, when it comes to access to cystic fibrosis treatment, is a major problem in society today. It causes many to get treatment late and increases the number of people who die due to the disease. The only way to close this gap and make it known that people of all colors suffer from this disease and should have access to accurate diagnosis and equal treatment is to spread awareness. So I encourage you to post on social media or follow an account that supports equal access to treatment of cystic fibrosis and spread awareness regarding the need to close this racial gap.

References

“CF Foundation Seeks Input from Communities of Color | Foundation.”

Digitale, Erin. “Cystic fibrosis deadlier for Hispanic than non-Hispanic patients.” Stanford Medicine. 4 June 2015.

Rubin, Rita. “Tackling the Misconception That Cystic Fibrosis Is a “White People’s Disease.”” JAMA, 26 May 2021, . Accessed 1 February 2023.