Voice Your Support to Pass the Sickle Cell Treatment Act

AB1488 provides a much needed solution to the challenges that people with sickle cell disease face seeking care in California. There has been a lack of funding for routine care and support services for patients with sickle cell disease, particularly adults, in California. This has led to unnecessary deaths and complications that could have been prevented. With the proposed 3-4 new sickle cell treatment centers, reimbursement for providers, and support services, AB1488 gives people with sickle cell disease  and their family members hope that they can live a longer, healthier life.  

Thank you for your support of this important legislation.

I would like to offer my support for AB 1488 a bill that would create infrastructure and support for the 7000 people in that state of California who suffer from sickle cell disease.  Although this disease affects primarily African Americans, it also impacts Hispanics, and people whose ancestry includes India and the Middle East.  The cost is high both to these affective individuals in terms of their quality of life and to the state in terms of health care expenditure.  In 2014, it was estimated that the cost of hospitalization and emergency room visits alone cost the state approximately four hundred million dollars, this dollar cost is surly higher today.  This estimated cost does not include outpatient care, imaging studies, and pharmaceuticals as only the hospital/ED charges can be verified as related to a sickle cell disease diagnostic code. 

Although the care for children who have sickle cell disease has led to survival to age eighteen of 97%, the same cannot be said for those over the age of eighteen.  Morbidity and mortality exponentially increases beyond the age of eighteen leading to unnecessary death and disability in young adults who have sickle cell disease. The life expectancy for those who have sickle cell disease continues to be approximately 45 years and has not changed despite the fact there is effective therapy for this disease. This discrepancy between the care of children and young adults is one of access, lack of coordination of care, and the absence of any standards of care in the state.

AB 1488 is designed to remedy this inequitable care for people who have sickle cell disease in the state by creating infrastructure and support of health care providers and patients within the state.  Due to the uncoordinated care, the lack of support, and the lack of access to therapy this bill has the potential to save the state money which improving the lives of people who have sickle cell disease.