Advocates raising awareness of sickle cell disease

02/09/2024

By: Ryan Trares

The spikes of severe pain seemed neverending.

Lena Harvey has lived with sickle cell disease throughout her entire life. The 39-year-old Indianapolis resident has suffered through the constant fatigue, the sores, and most frequently the pain that the blood disorder brings.

The disease has dominated her life.

“I’d have sickle cell pain crises, when the pain would spike suddenly and last anywhere from hours to days to weeks at some points,” she said. “In comparison to someone who does not have a chronic illness, especially one not marked by pain, my life has for sure, growing up, been very rough.”

Harvey will join hundreds of others with sickle cell disease and those who support them at the Indiana State Capitol Monday for the annual Sickle Cell Advocacy Day. The group hopes to encourage state lawmakers to consider the needs of Indiana residents living with the disease, who too often experience disparity in health care.

Their daily pain and struggle often goes unnoticed. But for the approximately 1,600 Hoosiers suffering from the disease, Advocacy Day is a chance to bring their lives out of the dark and into the light.

“Sickle cell disease is underfunded compared to other genetic disorders. The point of this Advocacy Day is to raise awareness about these funding discrepancies and also to bring this disease to the attention of lawmakers, so they know it is something that needs to be addressed,” said Dr. Brandon Hardesty, adult hematologist at the Indiana Hemophilia and Thrombosis Center.

Sickle cell disease is a rare blood disorder affecting approximately 100,000 people in the United States. In Indiana, 87% of those with sickle cell are Black, with Marion and Lake counties with the highest incidence of the disease.

The disorder is genetic, passed down by parents who carry the sickle cell trait. If only one parent has the trait, it does not present in their child, but if both have it, their child has a 25% chance of having the disease.

While a small number of Indiana residents actually have the disease, it is estimated that more Hoosiers carry the sickle cell trait and could pass this life-threatening disease on to their children.

Passed down by parents who each have the regressive gene for it, the disease causes the red blood cells to become hard, sticky and C-shaped — lending the condition its name.

The mutated blood cells cause blood flow blockages that can result in organ damage, serious infections or stroke.

“It causes pain, which is probably the most obvious feature of sickle cell disease, but it also causes organ damage. As a result of the organ damage, people with sickle cell disease do not live as long as those without,” Hardesty said.

Harvey, who was born and grew up in Chicago, was not diagnosed with the disease until she was 4 years old. When she was born in 1985, hospitals didn’t conduct newborn screening for sickle cell, so it went unnoticed in her for years.

But as symptoms such as pain, swelling in the hands and feet, and frequent infections presented themselves, leading to her being tested and diagnosed.

Ever since, sickle cell has overwhelmed her life. The condition shaped her childhood and her high school years.

“I was not capable of being in extracurricular activities — cheerleading, sports, things like that my friends were doing,” she said. “I did find other things outside of school that were more my speed, but as for the bulk of the students, I was always on the sidelines or at home or in the hospital.”

Adulthood has been much the same. Managing the disease required her to take her medications and drink an overwhelming amount of water. Pain medication became imperative to function; because sickle cell affects the blood, the disorder’s impact was total.

“Since it is in the blood, the foundation of my blood, every area is affected,” she said.

But as treatments have advanced, Harvey has taken more of her life back. Her experience has made it important to amplify the struggle sickle cell patients go through, and work to raise awareness.

“Sickle cell has been neglected in so many ways, and so many of our biggest and brightest minds have had blinders on to sickle cell,” she said.

That’s what makes the upcoming Advocacy Day so vital — particularly considering the disparities in receiving health care among racial minority groups in the U.S. are directly related to poor outcomes associated with sickle cell disease, research has shown.

Advocates for sickle cell disease patients have used Advocacy Day in the past to get grants to treat people with the disorder and create outreach clinics elsewhere in the state, Hardesty said.

“In doing so, we’re creating access to care for people who don’t really have great options,” he said.

Local residents living with sickle cell disease, as well as their supporters, family and friends can sign up to participate Eventbrite.com.

“Sickle cell has been an absolute test of a lifetime dealing with it,” Harvey said. “But I’m happy to report that there is hope. I didn’t always have that.”

IF YOU GO

Sickle Cell Advocacy Day

What: An opportunity for sickle cell disease patients, and their supporters, to encourage lawmakers to consider the needs of Hoosiers living with sickle cell disease who often are those experiencing disparity in health care.

When: 11 a.m.-2 p.m. Feb. 12

Where: Indiana State Capitol North Atrium, 200 W. Washington St., Indianapolis

How to sign up: http://SCDAdvocacyDay2024.eventbrite.com