Sickle Cell: Advocating for Life and Rights
By Dianne Anderson
Putting off that trip to the doctor’s office for regular checkups for fear of secondary consequences – namely COVID-19 exposure – is something that health advocate Starla Simmons seriously warns against.
Avoiding the doctor is a bad idea, specifically when it came down to her own kids, who both have Sickle Cell Disease.
She recognizes the vaccine is a personal choice for families dealing with specific disorders like Sickle Cell, but she did all of her homework, thoroughly researched the data and was convinced that the vaccine was the best move.
Last March, she and her entire family of six received the shot all on the same day, administered at a Second Baptist Church and Christ Our Redeemer event.
As a mom and advocate, she is satisfied that it’s one less thing to worry about.
When COVID first happened, no one left their house. She said that she consulted with the specialist, got all the facts and drilled down on the science.
“At first they said don’t rush it. Six months later, they said the data is there. You saw the real science, the reality is that when you look at the facts, more people are dying every day. I don’t see why we need more proof,” said Starlerra “Star” Simmons, founder and president of the Sickle Cell Foundation of Orange County.
In recent times, she sees that some Sickle Cell patients are getting the vaccine because they don’t want their health to diminish rapidly. For others, the flipside is true. They fear that their health will go down with the vaccine.
But the Black community is impacted by Sickle Cell, and overwhelmingly dealing with pre-existing conditions. Together, it’s the worst combination.
Everyone in her household are still taking all of the precautions, masks and handwashing when they go out, but they are all caught up on their regular bloodwork, and other Sickle Cell services without the added stress of fear of exposure.
Each of her children has spent at least one month each year – or several months – in the hospital facing sickle cell crisis after crisis. Long before the pandemic, she lived through the worst of times.
Her son Charon went through 49 pints of blood transfusion in one night when he slipped into Sickle Cell crisis, and was pronounced clinically dead. He’s fine now, as is her daughter, Alyssa, who today is also a Sickle Cell advocate, working toward a law degree to represent the disabled community.
During COVID, the Sickle Cell community is not only dealing with severe physical pain, but they are in need of regular blood transfusions to survive. The average patient requires at least one pint per month, depending on their bone marrow.
Because so many patients are in pain, she has been getting more calls from those with mental health issues, which also leads to physical crisis.
“Staying at home dealing with their pain has caused them more depression because they are not getting the care they need, [thinking] I’ll protect myself. In actuality they’re harming themselves,” she said.
More physical strain from emotional pressure can also send a patient into Sickle Cell crisis at a time when fewer ICU beds are available.
“The pain can create a lot of stress, that can lead to stroke or a heart attack,” she said. “Stress is the one number factor when it comes to creating an episodic crisis, of blood pressure, the environment, it plays a major role”
Simmons continues advocacy for parents fighting for their students to access their federal civil rights protection through Section 504. Recently, she had a request from a college professor dealing with sickle cell.
“The professor contacted me from a university, 64 years, because she needed accommodations. She writes for the college, they tell her to [continue working] with pain in her hand, but who’s going to challenge them to make sure her rights are not violated. That’s where I come in.”
Simmons’ outreach leans toward education policy, and she regularly works with hospitals and doctors to ensure parents access the right medicines or medical equipment for their children. She offers free workshops for parents to learn their rights, and students can avoid falling academically behind while in the hospital
In a recent study published in the Annals of Internal Medicine, researchers looked at Sickle Cell Disease data involving over 12 million people worldwide, of which Blacks were over-represented. They found that Sickle Cell patients are at significantly higher risk from COVID-19 death or illness than the general population.
“Our analysis estimated a 4-fold increased risk for COVID-19–related hospitalization and a 2.6-fold increased risk for COVID-19–related death for sickle cell disease,” the study said.
For more information on Sickle Cell disability resources, contact Simmons at email@example.com or www.scdfoc.org