“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 (64th District), 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.