Sickle-cell disease is nothing to joke about. Do better, HBO | Guest Opinion

HBO Max’s updated Scooby-Doo series “Velma” is under scrutiny after a tasteless joke made during the premier episode.

In the scene, Velma Dinkle (voiced by executive producer Mindy Kaling) is speaking with Fred Jones, who is making an excuse for forgetting Velma’s name.

“I have a disease where I can’t recognize people who aren’t hot,” he says. “My doctor says it’s basically sickle cell for rich people.”

“Is it called rudeness?” responds Velma.

“It is! You’re like … smart.”

Sickle-cell disease (SCD) is the greatest health and racial disparity seen in modern medicine. It is the world’s most common genetic disease, affecting — 100,000 people in the United States, with the majority being of African descent — although it can affect anyone of any race or ethnicity.

Florida has the highest prevalence of SCD in the country, including the largest affected Hispanic population. More than 1 million people in India have SCD, where Kaling’s parents are from.

SCD is an inherited blood disorder characterized by sudden, unpredictable, and severe pain crises, in addition to anemia. It is a progressive disease with a life expectancy 20-30 years lower compared to the general population.

SCD is highly stigmatized and misunderstood, which contributes to significant morbidity (complications) and premature mortality (death) among the population. There are countless articles highlighting how rarer conditions, such as cystic fibrosis and hemophilia, receive significantly more funding compared to SCD, which translates to more treatment options and resources, with additional studies confirming the negative attitudes toward the condition.

Studies evaluating management of SCD in the Emergency Department confirm patients with SCD experience longer wait times, longer time to receive the first dose of pain medication and, more often, to receive lower dosages of pain medication.

Rather than using Velma to bring awareness to an already misunderstood condition, the joke sparks more misinformation and negative stereotyping. More important, it undermines the daily struggles of warriors worldwide.

We live in an environment that is discriminatory in regards to chronic pain, and our medical system makes it even more challenging for people of color. There is a major psychological burden for those living with SCD. Most patients will treat crises at home despite being in crippling pain in order to avoid the judgment and mistreatment. When they finally decide to seek medical treatment, they often are met with resistance, having to prove they are in severe pain and deserving of pain medication.

Sickle-cell warriors are one of the most resilient groups of people I have ever met. We call them “warriors” because they literally are battling their own bodies and a healthcare system that too often mislabel them as drug seekers and faking the pain.

I feel honored to care for such a beautiful population of people and to have an opportunity to educate and spread more awareness to bring, I hope, changes that are so desperately needed.

Maya Bloomberg, APRN, is a hematology nurse practitioner.