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New Report Shows Increase In Adult Sickle Cell Patients Receiving Care Across California
New report shows increase in adult sickle cell patients receiving care across California
Updated: 6:56 PM PST Dec 5, 2024
ON SICKLE CELL CARE IN CALIFORNIA. AN INITIATIVE IN THE 2019 STATE BUDGET ALLOTTED MONEY TO FUND A CENTER SPECIFICALLY TO ADDRESS THE GROWING NEED OF CARE FOR PATIENTS WITH RARE, CHRONIC, INHERITED BLOOD DISORDERS. NOW, FIVE YEARS AFTER ITS CREATION, WE'RE LEARNING WHAT'S WORKING AND WHAT STILL NEEDS TO BE DONE. THIS MORNING, WE WELCOME DOCTOR DIANE NUGENT. SHE'S THE FOUNDER AND PRESIDENT OF THE CENTER FOR INHERITED BLOOD DISORDERS. DOCTOR NUGENT, GOOD MORNING. THANKS FOR BEING HERE. RANDY, GOOD MORNING TO YOU AND TO THE VIEWERS. THANK YOU FOR HAVING US ON. SO THIS PROJECT WAS INITIALLY SET FOR ONLY THREE YEARS, BUT NOW ITS FIFTH YEAR IN OF FUNDING. WHAT ARE SOME OF THE HIGHLIGHTS OF THIS YEAR'S REPORT? WELL, THANK YOU FOR ASKING. WE'VE PROBABLY THE MOST IMPORTANT HIGHLIGHT IS THAT WE'VE GONE FROM ZERO ACCESS TO KNOWLEDGEABLE CARE FOR CLINICS FOR ADULTS WITH SICKLE CELL TO SERVING OVER A THOUSAND PATIENTS. AND OUR WITH ADULTS WITH SICKLE CELL. WE ESTIMATE THAT THERE'S AROUND 7 TO 8000 PATIENTS WITH SICKLE CELL IN OUR STATE. AND WE WERE EXPERIENCING BACK IN 2018 A LOSS OF A LIFE EXPECTANCY OF 20 YEARS COMPARED TO SICKLE CELL PATIENTS IN THE REST OF THE UNITED STATES, WHERE THE LIFE EXPECTANCY IS 61 YEARS. THAT'S ALREADY 20 YEARS SHORTER THAN THE AVERAGE AMERICAN. SO SOMETHING WAS GOING WRONG IN CALIFORNIA. AND FORTUNATELY, THE STATE RECOGNIZED THAT AND GAVE US THE FUNDING TO CREATE THESE INITIALLY, FIVE CLINICS. NOW WE HAVE 12. AND THE JOB'S NOT DONE, THOUGH I THINK OUR REPORT DEMONSTRATES THAT WE HAVE A 12 INCREDIBLE TEAMS ACROSS THE STATE. WE'RE SERVING MORE AND MORE PATIENTS. WE HAVE A HUGE NUMBER OF YOUNG ADULTS THAT ARE TRANSITIONING IN HALF OF THE YOUNG ADULTS THAT WE EXPECT ARE SOMEWHERE AROUND ANOTHER ADDITIONAL 500. AND THAT'S ONE OF THE THINGS I WANTED TO ASK YOU ABOUT, TOO. YOU'VE SEEN A GROWTH IN THE NUMBER OF PATIENTS SPECIFICALLY AT THE UC DAVIS CLINIC, THE NUMBER OF ADULT PATIENTS HAS GONE DOWN, THOUGH. WHY DO YOU THINK THAT IS? WELL, AGAIN, YOU KNOW, IT'S A MATTER OF ACCESS TO CARE AND WHAT WE'RE STILL FACED WITH ARE CHALLENGES WITH HOMELESSNESS AND INSECURITY, ACCESS TO CARE AND KNOWLEDGE BASE. EVEN IN OUR UNIVERSITIES, IS STILL A CHALLENGE. SO WHAT WE ARE TRYING TO DO, AND THIS IS HELPING US, IS TO GET THE WORD OUT TO LET PEOPLE KNOW THAT THERE ARE PATIENTS THERE. THE JOB WON'T BE DONE UNTIL WE HAVE SUSTAINABILITY IN THESE CLINICS, AND THAT'S WHAT WE'RE WORKING ON NOW. FORTUNATELY WITH THE STATE, IS TO MAKE SURE THAT THESE CLINICS ARE ABLE TO MAINTAIN AND MEET THE NEED, THE GROWING NEED FOR PATIENTS ACROSS CALIFORNIA. WHAT DO YOU SEE HAPPENING? WE HAVE ABOUT 30S FOR THE INTERVIEW HERE. WHAT DO YOU SEE HAPPENING IN THE NEXT YEAR AS FAR AS THE CLINICS ARE CONCERNED? WE'RE THE NEXT YEAR. WE'RE TRANSITIONING TO AN ENHANCED CARE MANAGEMENT MODEL AND THAT WILL HELP US TO MEET THE NEEDS OF HOUSING, FOOD INSECURITY, ACCESS TO MEDICAL CARE, AND IF WE CAN DO THAT, WE'RE NO LONGER GOING TO BE DEPENDENT ON OUR FUNDING FROM THE LEGISLATURE LEGISLATURE. BUT THIS CLINICS WILL BE SUSTAINABLE IN AND OF THEMSELVES. THESE PATIENTS NEED TO STAY HEALTHY SO THEY CAN GET ACCESS TO GENETIC GENE THERAPY, TRANSFORMATIVE CARE, IF WE DON'T TAKE GOOD CARE OF OUR PATIENTS, THEY WON'T EVEN BE ABLE TO GET ACCESS TO THAT. AND CURE IS AVAILABLE NOW, SO WE NEED TO MAKE THAT HAPPEN FOR THESE PATIENTS. DOCTOR NUGENT, WE APPRECIATE YOU JOINING US. THIS MORNING. A LOT OF GREAT INFORMATION. OF COURSE, WE WILL CONTINUE TO FOLLOW THE WORK THAT YOU AND YOUR TEAM ARE DOING AS WEL
New report shows increase in adult sickle cell patients receiving care across California
Updated: 6:56 PM PST Dec 5, 2024
A new report is shedding light on sickle cell care in California.An initiative in the 2019 state budget allotted money to fund a center, specifically to address the growing need for care for patients with rare, chronic inherited blood disorders.Click here to learn more about the Center for Inherited Blood Disorders.Based on research in the Networking California for Sickle Cell Care Annual Report, there are an estimated 11,000 individuals living with Sickle Cell Disease in California. The Networking California for Sickle Cell Care network serves 960 adults across 12 clinical sites and two extension community clinic sites.According to the report, that is a 3.8% increase in adults being seen throughout the network, since August 2023. However, at the Networking California for Sickle Cell Care Center at UC Davis, the number of patients receiving care went down from 215 in August 2023 to 135 in August 2024. Dr. Diane Nugent, founder and president of the Center for Inherited Blood Disorders joined KCRA Thursday morning to discuss the findings of the report and the challenges still facing patients with rare blood disorders. "Access to care and knowledge base is still a challenge," Nugent said. Click the video above to watch the full interview.
SACRAMENTO, Calif. —A new report is shedding light on sickle cell care in California.
An initiative in the 2019 state budget allotted money to fund a center, specifically to address the growing need for care for patients with rare, chronic inherited blood disorders.
Based on research in the Networking California for Sickle Cell Care Annual Report, there are an estimated 11,000 individuals living with Sickle Cell Disease in California.
The Networking California for Sickle Cell Care network serves 960 adults across 12 clinical sites and two extension community clinic sites.
According to the report, that is a 3.8% increase in adults being seen throughout the network, since August 2023.
However, at the Networking California for Sickle Cell Care Center at UC Davis, the number of patients receiving care went down from 215 in August 2023 to 135 in August 2024.
Dr. Diane Nugent, founder and president of the Center for Inherited Blood Disorders joined KCRA Thursday morning to discuss the findings of the report and the challenges still facing patients with rare blood disorders.
"Access to care and [the] knowledge base is still a challenge," Nugent said.
Click the video above to watch the full interview.
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