RICHMOND, Va. β With the next General Assembly session set to begin next week, people who suffer from sickle cell anemia and their loved ones are gearing up to push for legislation and funding support.
The advocacy effort carries added emotional weight for Del. Candi Mundon King, who lost her teenage daughter, Candis, to the disease just two months ago.
"I come into this session with a renewed passion to ensure that no other family goes through what I'm going through," said Mundon King, a Democrat from Prince William County.
"How do you bury your 15-year-old who was vibrant, full of life, energetic, hard working [and] understood how to advocate for herself?" Mundon King said.
Sickle cell anemia is a disease that causes misshapen red blood cells that can lead to various health complications, extreme pain, and death. Over 4,000 people, mainly African Americans, are estimated to suffer from it in Virginia.
The December meeting of the Sickle Cell Caucus, founded by Mundon King, brought together advocates and patients to discuss legislative priorities for the upcoming session.
"My dad lived with sickle cell for 62 years. He passed last year," one advocate shared during the meeting.
"You have to change your lifestyle. You have to change the way you think. You have to change how you go about business. You have to change how you parent," another participant said about living with the disease.
Among those advocating is Ayana Johnson, a former Miss Teen Virginia who founded her own non-profit to raise awareness about the disease.
"I am a sickle cell warrior," Johnson said. "It's very eye-opening to see people like you all who just want to take the first step and hear more about sickle cell disease. However, we also have to take the second step and actually act on that."
Mundon King says improving access to quality care is a top priority this session. While Virginia has good sickle cell centers, not everyone lives near them.
"Whether it's telemedicine or pediatric hematologist, adult hematologist, in the hospitals, because right now, sickle cell warriors live too far from care, and they're experiencing excruciating pain without the specialist that they need to get relief," Mundon King said.
The caucus also wants to improve training for doctors, add protections for high school athletes and implement screening for a type of cancer normally associated with sickle cell patients.
Mundon King says she's continuing this fight not only in her daughter's memory but for all the sickle cell warriors whose lives have been cut short.
"My daughter, Candis, was a truly remarkable young woman who had hopes and dreams and ambitions to do great things in the world she touched so many lives," Mundon King said. "I want to ensure that other young people like Candis have the ability to live out their dreams and do the things that we wished she could have done with her life."
Mundon King won't be in the legislature for the majority of the session as she's been nominated to serve as Secretary of the Commonwealth in the Spanberger Administration. But she says her work on support for those with sickle cell will continue both professionally and personally.
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