In a monumental step for Californians impacted by sickle cell disease, leaders in science and health care policy met last week at “The Impacts of Sickle Cell Disease in California Legislative Briefing” led by the California Legislative Black Caucus and the California Biotechnology Foundation to educate stakeholders about gaps in care, listen to the patient experience, and note proposed landmark legislation to begin to solve this crisis.
“Sickle Cell Disease is a rare disorder that has never received the attention it deserves from a policy or awareness perspective,” said Dr. Judith Baker, Policy Director for the Center for Inherited Blood Disorders and Pacific Sickle Cell Regional Collaborative. “This requires a real, intentional, purposeful plan to try to solve the complexities and tragedies of lack of access to knowledgeable sickle cell care, particularly for adults.”
Assembly Bill 1105, authored by Assemblyman Mike Gipson, is a three-year pilot program that will improve care and treatment for those living with sickle cell disease. The bill appropriates $15 million from the state budget to the Department of Public Health. Working with the Department of Health Care Services, these resources will be used to develop at least five adult sickle cell disease clinics that are networked with one another in a hub and spoke model across the state. Clinics will expand upon existing – but currently fragmented and inadequate services — in the geographic areas where the largest numbers of adults with sickle cell disease live.
These include Los Angeles/Orange counties, Fresno/Madera counties, Alameda/San Francisco and surrounding counties, Sacramento/San Joaquin counties, San Bernardino/Kern/Riverside and San Diego counties. They will provide team based preventive primary and specialty care, supported by tele-mentoring, and connect patients to a range of services in the outpatient, inpatient and community settings that will help them live healthier and longer lives.
“The bill would support clinical workforce development to strengthen doctors’ and nurses’ understanding of current care guidelines, outreach and education, and expand tracking to better monitor care and outcomes,” said Mary Brown, President and CEO of the Sickle Cell Disease Foundation.
“Our state’s lack of action impacts the thousands of Californians living with sickle cell disease, an inherited blood disorder that causes severe pain, debilitating inflammation, infections, blood clots and premature death,” Gipson said. “AB 1105 is a massive step forward in ensuring all Californians impacted by this terrible disease are able to receive the quality health care they need and deserve.”
Currently, sickle cell disease patients needlessly suffer due to the absence of a cohesive health care system to address their needs. California adults with sickle cell disease die at younger ages, at higher rates, and have a higher rate of emergency room visits and hospitalizations compared to sickle cell disease patients in other states. Although sickle cell disease affects all races and ethnic groups, African-Americans and Hispanic-Americans are affected at higher rates, especially in the Los Angeles area, where close to 2,000 patients live with sickle cell disease.
In the midst of this significant event aimed at raising awareness, Lance Jasper Jones, a Californian with sickle cell disease, offered sobering words: “I’ve been hospitalized over 100 times, with more than seven surgeries. This past January I was hospitalized with levels of organ failure. I’m exhausted,” Jones said.
The state lacks adult clinics, as well as adult medical and other clinical workers trained to screen for and address inherited blood disorders for people who have sickle cell disease, as they now live into adulthood. Historically, sickle cell disease has been ignored and those who have it have been faced with discrimination and racism. The CDC recently issued a clarification that national efforts to address the opioid epidemic should not allow clinicians to inappropriately deny necessary pain medications to people with sickle cell disease.
Dr. Diane Nugent, the President and Medical Director for the Center for Inherited Blood Disorders, said that because of the deficits, Californians with sickle cell disease have poor health outcomes and are subject to premature death: “In the United States, life expectancy for sickle cell is 61 years. In the UK, it’s 70 years. In the state of California, it’s now down to 43 years.”
“I have goals and aspirations just like everybody else. I’m set to get married next year and my fear and concern is that I will not be able to meet her at the altar,” Jones said.
About Sickle Cell Disease Foundation of California
Sickle Cell Disease Foundation of California (SCDF) is the first and oldest non-profit, social service, sickle cell disease organization in the United States today. Founded in 1957, the SCDF has maintained a viable and reputable organization for over 60 years. The SCDF addresses the needs of individuals with sickle cell disease and their families by emphasizing educational and support programs and services that meet the physical, psycho social and economic needs of their clients. With a growing population of individuals with sickle cell disease and sickle cell trait, the primary focus of the SCDF is to educate, screen and counsel those persons at risk of having children with sickle cell disease and other hemoglobin disorders.
About Center for Inherited Blood Disorders
Center for Inherited Blood Disorders (CIBD) is the federally-recognized hemophilia treatment center (HTC) for Orange, San Bernardino and Riverside counties, and parts of Los Angeles County. As one of over 130 non-profit centers nationwide recognized by the U.S. Department of Health and Human Services (DHHS), Health Resources and Services Administration (HRSA), and the Centers for Disease Control and Prevention (CDC), CIBD’s hematology specialists collaborates with doctors, clinics and hospitals to provide comprehensive care to children, teens and adults with inherited blood disorders. CIBD is the recipient of the HRSA Sickle Cell Disease Treatment and Demonstration Program provided by the Pacific Sickle Cell Regional Collaborative. CIBD was also the host of a stakeholder meeting at the University of California, Davis campus to discuss the State Action Plan for sickle cell disease.
SOURCE Sickle Cell Disease Foundation of California (SCDF); Center for Inherited Blood Disorders (CIBD)
Rod is a blogger, writer, filmmaker, photographer, daydreamer who likes to cook. Rod produces and directs the web series, CUPIC: Diary of an Investigator. He is also the editor, producer and administrator of TNC Network.