RICHMOND, Va. -- On July 1, four new laws go into effect that directly impact those living with sickle cell disease and those who are unaware that they may have the disease and/or be a carrier of the trait.
Spreading awareness about sickle cell disease and its impacts is something that CBS 6 Anchor GeNienne Samuels has been passionate about for over a year.
So, she began giving a voice to those in the CBS 6 community living with sickle cell disease.
Every patient that GeNienne spoke to explained that the disease often leaves them suffering in silence because their medication isn't strong enough or some doctors just don't understand how to treat them.
Take 29-year-old Walter Davis of Colonial Heights for example, who described his pain as 'debilitating.'
“I would say it's grueling. It is mentally, physically, emotionally exhausting because it doesn't stop," Davis said. "It felt like I was getting beat with a sledgehammer or a metal bat.”
Because of this crippling pain, Davis elected earlier this year to participate in a gene therapy trial, acting as one of 33 participants in the United States. However, most patients do not have access to this level of treatment.
As of July 1, there is relief. Four of the six bills submitted are now laws.
First, a law that will allow doctors to prescribe and pharmacists to distribute opioids without fear of legal retribution. Something that Dr. Wally Smith, a Lawrence Neil Cooper Smith Professor of Sickle Cell disease at VCU says will improve pain management for sickle cell patients.
“This is a disease that cripples and disables patients from childhood on. And they're on these opioid pain medicines because there's nothing else today that really takes the pain away acutely," Dr. Smith said. "Naming the disease, putting it in sort of the same category is cancer is very important in making a safe prescribing environment for the doctors, and then to make it possible for the patients to get access to sometimes lifesaving pain medication.”
GeNienne shared George Carter's story last year, as well. Carter runs OSCAR, the Sickle Cell Association of Richmond. He helped jump start this law by going through the Attorney General to get an Executive Order put through providing safe harbor to doctors. Now it's extended to all professionals, including pharmacists.
The second law creates a statewide registry of sickle cell disease case information, providing centralized data to determine how many people in the commonwealth have sickle cell disease, which in turn will help prove the need for funding and accountability.
Dr. Smith explained the importance of the law.
“We still don't know how many people in the United States have sickle cell disease. The reason we don't know is the way the original legislation was passed in the National Sickle Cell Disease Control act. It only provided for newborn screening. If mom didn't tell you, you don't know what your status is. What this does is make it so that the entire age range data will be known. 35, 36, 50, 70-year-old people will discover they have sickle cell disease as a result of this.”
“We [will] now know how long people live," Dr. Smith said. "So if you know how long people live and you can measure how long they're living over time, you have built in accountability for improving the quality and the quantity of lives of patients that live with this disease.”
The third law makes sickle cell disease or traitscreening tests available to all adults in the Commonwealth. According to Dr. Smith this increased awareness will help reduce the disease being passed on to offspring.
“The number of children born with sickle cell disease is not going down. It's going up. And so is the need to have everybody know their sickle cell trait status. And to know that one in four children born to two parents, each of whom have sickle cell trait, every time there's a one in four chance that that child will have sickle cell disease. That's a very important and under recognized fact, so unrecognized that people don't even ask about it when thinking about having a child. So, this will raise awareness and the need to ask.”
Finally, Dr Smith says the fourth law calls for anannual Department of Medical Assistance Services review of medication and treatment for sickle cell disease, which will add accountability for the state government to be aware of what’s available and then have payment sources in place for patients.
Dr. Smith feels says he feels encouraged about the progress so far but believes there is still room for improvement in the areas of getting more funding for treatment and community programs.
He also wants to emphasize that it is a myth that only Black people get sickle cell disease. He says this is a worldwide problem and everyone should take advantage of available testing to know your status.
