Sickle cell disease is the most common rare-blood disease in the world. Here are some quick facts according to the Centers for Disease Control about this condition:
- affects approximately 100,000 Americans.
- occurs among about one out of every 365 Black births
- about one in 13 Black babies is born with the sickle cell trait
Science has proven that sickle cell arises from the body’s attempt to fight malaria. Although sickle cell disease is a global disorder affecting people of all races—as a direct result of the transatlantic slave trade—most individuals with sickle cell in the United States are Black. While health issues are a direct challenge of the disease, additional challenges to family stabilization and upward economic mobility, such as mounting medical debt and food insecurity, arise as secondary side effects. Economic mobility and family stabilization are two community leadership initiatives of The Indianapolis Foundation. The Martin Center Sickle Cell Initiative, a recent grantee of The Indianapolis Foundation, continues to step in as a leader in these spaces.
Founded in 1969, the Martin Center Sickle Cell Initiative is the brainchild of Rev. Boniface Hardin, O.S.B. and Dr. Raymond Pierce. Its mission is to aid and enhance the lives of those affected by sickle cell and associated disorders by providing client services, patient and family advocacy and education. Today, the center dedicates itself to understanding the needs of individuals affected by sickle cell through a holistic approach. Too often, well-meaning organizations prescribe solutions to a community or population without that community’s input.
The Martin Center Sickle Cell Initiative listens directly to those affected. The organization partnered with local organizations to produce a client-needs study, and the organization is planning to do an updated analysis.
“The purpose is to try to ensure that we still understand what clients are going through and what their needs are,” said Gary Gibson, CEO of Martin Center Sickle Cell Initiative.
Impacting Economic Mobility and Family Stabilization
Think back to the last time you had a paper cut. The tiny slice sends a shock to your system. Although the cut is small and shallow, the pain can distract you from your activities.
Extreme pain is the most common complication of sickle cell. So imagine being a child trying to get through this pain during school. It’s debilitating. Add on multiple trips to the ER due to that pain and infections, and a child will find themself behind in schoolwork.
Academic achievement and school completion years are much lower for adolescents with sickle cell, which limits the kinds of employment these individuals can attain. Many people with the disease can’t work full-time jobs due to their illness. Additionally, 69% of sickle cell patients in Indiana rely on Medicaid for their healthcare needs. With the income limits to participate in Medicaid, individuals affected by sickle cell often have the difficult decision to take lower-paid jobs to maintain their healthcare benefits. Combining all these factors, individuals often have trouble fulfilling basic needs like transportation, housing and food.
Martin Sickle Cell Center is stepping in to fill this need in family stabilization. Its food pantry provides supplemental food. In addition, it offers a Gatorade program—hydration is crucial to people during a sickle cell crisis. The organization also provides emergency financial assistance to clients and families impacted by sickle cell. Families need this type of support now more than ever.
“We are providing help to keep people in their homes,” said Gibson. “We’re providing help to keep people warm. That’s really important with sickle cell disease because another simple fact that many people may not know is that, particularly now, cold weather is an enemy of sickle cell disease. The colder the weather, the more your tendency to have sickle cell crisis events. And the more you have sickle cell crisis events, the more damage is done to your body, the shorter your lifespan becomes.”
Martin Center Sickle Cell Initiative also steps in the economic mobility space as it aims to create a network of partners willing to provide customized-employment opportunities for people affected by the disease. This could look like increased flexibility with work hours for their changing health needs.
“One of the things we encountered is that people with sickle cell disease—that are able to get employed—have difficulty keeping the employment because of their health. They get sick a lot. They go to the hospital a lot. It makes steady employment difficult,” said Gibson.
Also ingrained in its work are education and support. Its program, Faces of Sickle Cell, allows clients and their loved ones to come together to share experiences, strategies, and victories. It is a monthly time of learning, growing, and building friendships and a community of people who understand the challenges of living with sickle cell. It also provides additional wraparound services like transportation assistance, a parent empowerment program, and monthly support group meetings, further improving family stabilization.
How to Support
Back in person this year, the organization will host its 5K walk/run on June 24 for the 27th year. Pre-pandemic, this event brought out nearly 700 participants. The organization needs volunteers to help out with this massive fundraising event. For more information on how to support, contact Judy Faux at 317.927.5158. The organization is also accepting donations for its annual campaign.
“It takes a village to help people in these situations, said Gibson. “I just want people to help level the playing field.”
Author: Tashi Copeland
Marketing and Communications Officer for Central Indiana Community Foundation