California is establishing a network of clinics for adults with Sickle Cell Disease (SCD) statewide, expanding services for those affected by the debilitating disease.
The launch marks the grand opening of a new, larger clinic site at the MLK Jr. Outpatient Center in South Los Angeles. The Los Angeles County Board of Supervisors named the new clinic after Jeffrey Smith, the son of Gil Smith, founding mayor of Carson, who died from SCD complications in 1982 at the age of 23.
Now with a commitment of $15 million, Californians across the state with SCD will receive quality health care.
“We have waited too long to address the poor health outcomes and premature deaths suffered by individuals with Sickle Cell Disease in California,” said Dr. Diane Nugent, president and medical director of the Center for Inherited Blood Disorders. “In the United States, life expectancy for individuals with Sickle Cell Disease is 61 years. In the United Kingdom, it’s 70 years. In the state of California, it’s a shocking 43 years.”
The program, made possible by funding credited to the leadership of Assemblymember Mike Gipson of Watts, will give new hope to and extend the lives of vulnerable and underserved Californians who suffer from the disease, she said.
For the first time in California’s history, the governor committed $15 million statewide for sickle cell adult treatment programs statewide. In addition, this program will help train clinicians to quickly recognize and properly treat the many complications faced by adults with this complex disorder so they can receive the best care possible.
Decades of inadequate funding for California adults living with SCD resulted in this underserved community dying at younger ages and at higher rates. Californians with SCD have higher incidents of emergency room visits and hospitalizations than patients in other states. This program marks the first time California has provided significant funding for SCD, which is the world’s most common genetic disease affecting approximately 100,000 in the U.S. Alone.
“Given that Jeffrey’s story was the impetus that drove me to introduce this budget proposal, it is fitting that the first of the clinics be named in his honor,” Gipson said. “Today, the majority of adults with SCD are forced to obtain care in hospital emergency departments and other non-SCD specialty settings. The Jeffrey Smith Sickle Cell Adult Center will be a center of excellence that understands adult patient’s unique needs and provide them with a quality of life that we would all want for ourselves. Moreover, the comprehensive outpatient center will avoid increased hospitalization costs for a Medi-Cal population.”
The new funding will help create a statewide network of regional adult SCD clinics modeled after the MLK Jr clinic. Developed within the existing health system infrastructures, the network will serve counties where the largest numbers of adults with SCD live, including Los Angeles, San Bernardino and Riverside, Alameda, Contra Costa and San Francisco, Sacramento and Solano, Kern, Fresno, Madera, and San Diego.
“Sickle cell disease is a complex condition that affects both the physical and mental health of patients, and it is critical that we provide them with first-rate care in the community,” L.A. Supervisor Mark Ridley-Thomas said. “Since 2016, L.A. County’s Department of Health Services and the Sickle Cell Disease Foundation have helped adults with sickle cell disease at the Martin Luther King Jr. Outpatient Center in Willowbrook. I’m thrilled to see this model expanded across the state.”
The budget allocation will help fund clinical workforce development to strengthen doctors’ and nurses’ understanding of current care guidelines, expand outreach and education, and increase tracking to better monitor care and outcomes through a partnership with the Sickle Cell Data Collection Program.
This funding will improve the following outcomes:
African-Americans and Hispanic-Americans are disproportionately affected, especially in the Los Angeles area where close to 2,000 patients live with SCD, according to the statement. The average life expectancy for people with the most severe form of SCD is 30 years shorter than that of people without SCD. Patients with SCD have the highest rate of returning to the hospital within 30 days of being discharged compared to other health conditions. The rate of stroke in adults (age 35-64 years) with SCD is three times higher than rates in African Americans of similar age without SCD. The number of physicians trained and willing to treat SCD patients, especially adult patients, is severely limited.
“We are very grateful for this critical funding that will finally help ensure that Californians with Sickle Cell Disease can access the level of medical expertise needed to address the symptoms of their disease so they can live longer, more fulfilling and productive lives,” said Mary Brown, president and CEO of the Sickle Cell Disease Foundation of California.