Advocacy

February 21, 2019

On February 21, 2019, California Assembly member Mike Gipson (D – 64th District, South Los Angeles) introduced a bill into the California legislature that would strengthen Sickle Cell Services in California. The bill directs the California legislature to make $15 million available to create a variety of new services for Californians with sickle cell disease (SCD) over the next three years. The new SCD adult center services will link outpatient care to inpatient care, and provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and surveillance to adults with sickle cell disease. They will provide expanded access to new therapeutic agents and care. The bill highlights the needs of Californians with Sickle Cell that are outlined in the California Sickle Cell Action Plan.

To read the entire bill, go to: http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201920200AB1105

Download Summary of AB1105

To get involved in supporting this bill please send your name, city where you live, organizations you’re affiliated with, and email address to: info@c3dibd.org

May 2019

The Center for Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF) have had the opportunity to engage in efforts to educate legislators and advocate for the passing of AB1105. On May 6, 2019, Dr. Diane Nugent (CIBD) and Lance Jones (SCDF) testified regarding the current state of sickle cell disease in California, the goals of AB1105, and the health disparities the bill will address. View Dr. Nugent and Lance’s testimony here:

On May 8th, patients, healthcare providers, and advocates presented at “The Impacts of Sickle Cell Disease in California Legislative Briefing” sponsored by the California Legislative Black Caucus and the California Biotechnology Foundation to educate stakeholders about gaps in care, and listen to the patient experience. Click here to access the agenda and see a complete list of presenters.

July 2019

Sickle Cell Disease (SCD) services in California will be expanded over the next three years supported by a $15 million initiative that Governor Newsom included as part of the state budget.

The initiative, which addresses priorities in California’s 2018 Sickle Cell Disease State Action Plan, will:

1) establish a network of sickle cell disease centers in counties where the largest numbers of adults with SCD live to provide access to specialty care and improve quality of care for adults with sickle cell disease;

2) support workforce expansion, among both clinicians and community health workers, to enhance care coordination;

3) expand surveillance to monitor disease prevalence, healthcare utilization, complications and costs; and

4) conduct outreach and awareness on SCD.

The Center for Inherited Blood Disorders will be posting opportunities for funding in the areas of provider education, community based SCD outreach and education, newborn screening follow up, and sickle cell trait in the near future.

Resources

Download the Committee Services – Quick Reference Sheet for Advocates

Committee Services - Quick Reference Sheet for Advocates