RICHMOND, Va. -- For years, sickle cell disease, which affects red blood cells with many complications and primarily impacts the African-American community, was known as the forgotten disease.
While focus on and treatments for the disease has been limited in the past, that has been changed in recent years including efforts in this year's Virginia General Assembly.
Among the people involved in that is Minnie Powell, whose son, Neaz, was born with sickle cell disease.
"We lived at VCU Health system for about 19 years," Powell said. "We were really worried about, you know, how he would fare in life."
Powell said that her son, Neaz's case, included withdrawing from university because he was spending so much time in the hospital.
But things changed in 2017 when he got a stem cell transplant from his younger brother.
"He's doing really well at school. And he's actually graduating this year from VCU with an undergrad in biology," Powell said.
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But Powell said that while her son has been helped, the fight against the disease continues.
"We still have the rest of the community to help, right?" Powell said.
As president of the Virginia Sickle Cell Association, Powell gathered with others at General Assembly this month to make up the Sickle Cell Caucus.
"It was just a wonderful overwhelming feeling to see so much support," Powell said.
Del. Candi Mundon King is carrying several bills, including one to offer more testing for adults to see if they carry the sickle cell trait. That is something she did not know she did until her now 13-year-old daughter was born with the disease.
"It's really hard as a mom to see her in pain, and there's really nothing that I can do about it," King said. "Before we start families to understand the danger of having a child with sickle cell."
Another bill she is co-sponsoring (the main sponsor is Del. Joshua Cole_) would create a voluntary registry for people with the disease to give the state a better idea of where resources are needed.
King said her daughters has had the benefit of access to good care in Northern Virginia.
"We're not finding that in other areas of Virginia, especially rural communities, where many people live," King said.
Another bill calls for an annual review of available treatment that could be covered by state medical assistance. Dr. India Sisler with Children's Hospital of Richmond said options of increased greatly in recent years, including recently approved gene therapy treatments which VCU took part in the clinical trials for.
"The life expectancy for patients with sickle cell in the 70s was 14 years," Sisler said. "That was the average. Now we have patients living into their 60s and 70s and living very full lives."
While Ceci Cain's uncle has since passed from the disease, her father is an example of advancements in treatment. Now in his 60s with sickle cell, Cain said more needs to be done to help those living longer.
"You go through your entire life being hospitalized from sickle cell, you don't have a ton of funding for retirement and for hospitalization at the end of your life, which can increase in frequency," Cain said.
Powell said she intends to keep fighting as so many are still suffering.
"Until every single one of them can find the right treatment for themselves so they can have a better life," Powell said.
Advocates also called for a budget amendment for treatment centers around the state -- again noting not every place in Virginia is equal when it comes to access.
Both chambers are set to unveil their versions of the budget on Sunday.
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