Network Makes Progress in California, Adds Goals for Patient Care

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by Patricia Inácio, PhD |

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Two years since its establishment, the Networking California for Sickle Cell Care initiative has seen increasing numbers of specialized clinics and healthcare professionals knowledgeable about sickle cell disease (SCD) and is setting new goals to improve the lives of patients in the state, the Network announced in its first meeting, held online recently.

“There are so many advocates, patients, providers, and elected officials we must thank for getting us to this point; however, the Network wouldn’t be a success without each and every one of the clinicians who took a leap of faith in joining this historic Network,” Diane Nugent, MD, founder, president, and medical director of the Center for Inherited Blood Disorders, said in a press release.

The initiative is led by the center in partnership with the San Bernardino County-based Sickle Cell Disease Foundation.

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Networking California was established in 2019 following California’s Assembly Bill AB-1105 (Gipson) and a $15-million investment to support SCD care and surveillance. The bill was the result of patients, healthcare providers, SCD experts, and lawmakers demanding better care for adults with SCD in California.

Since then, the number of specialized clinics in California, where the greatest number of adults with the disease live, increased from three to 10. The number of clinicians, community health workers, and physician assistant graduates with knowledge about SCD has also increased.

“Because of the resources provided by the Network, these local clinics are better positioned to improve the quality of care for all Californians living with Sickle Cell Disease,” Nugent said.

In addition, the Network has offered education on bias training to physicians and other healthcare providers. Surveillance has expanded to better track SCD, and the impact of the disease on health and the economy. Competitive grants have helped foster education and raise awareness of SCD.

“While we know there is a long road ahead, we couldn’t be more proud of what we’ve accomplished so far,” Nugent said.

Prior to the Network’s launch, SCD adults living in California were among the most ignored and medically vulnerable patients. African Americans and Latino Americans are among those most affected by the disease, with extreme pain being the most common complication and main reason for hospital emergency admissions.

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The lack of specialized clinics forces patients to visit hospital emergency rooms where they’re often met by physicians without expertise in treating SCD acute pain episodes.

“I have experienced no pain as intense as a Sickle Cell crisis,” said the foundation’s Jennifer Fields, who has SCD.

“But I think I speak for all patients in saying what’s worse than the pain, is presenting to the emergency room and being met with racism and being treated like drug addicts,” Fields added. “I’ve heard stories of patients that have been given a bus ticket and sent home. It’s horrific.”

The Network is seeking to partner with managed care organizations to expand and reach all SCD patients and their families in the future.

“After decades of neglect, we’ve finally turned a corner and are now able to successfully and effectively improve care for Californians living with Sickle Cell Disease,” said Mary Brown, president and CEO of the Sickle Cell Disease Foundation.

“For the patients who have never had their voices heard, who have felt like they’ve been living in the shadows, now is the time to speak up and speak out,” she added. “We are listening, and our program is going to address your needs to the best of our abilities.”