True and lasting change for the treatment of patients with sickle cell disease must be supported from the legislators who shape and regulate our healthcare system. We fight so that patients’ voices are heard by (1) alerting patients to when sickle cell-related legislation is drafted and by (2) providing the tools necessary to speak with legislators. The following is an overview of California legislation that we, our partners, and patients with sickle cell across the state have worked on to ensure patient rights are not violated.
2018- S. 2465 Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018
On December 10, 2018, S.2465 – The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 – was passed by the Congress and on December 18, 2018 it was signed into law by the President. The bill represents a commitment by the government to continue much-needed research geared towards increasing the understanding of prevalence, distribution, outcomes, and therapies associated with sickle cell disease (SCD). It also reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA), and it authorizes the Centers for Disease Control and Prevention to award SCD surveillance grants to states, academic institutions and non-profit organizations.
“It is amazing what can happen when our collective voices sound together to affect positive change,” said SCDAA President and CEO Beverley Francis-Gibson. “We are grateful for this legislative victory and to all of the individuals living with SCD and their families for their strength and for their efforts to be heard.The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 marks another step forward in our collective efforts to better understand the prevalence and outcomes of SCD through research and to address the complex needs of the sickle cell community.”
2018 – AB 1998 – Opioid Prescription Regulation
As the opioid epidemic sweeps across the country, states are rushing to enact legislation which will curb the ever-increasing number of overdoses and deaths. In fighting this terrible epidemic, we find that patients with sickle cell disease are often caught in the crossfire.
When originally drafted by Assembly Member Rodriguez (D – Pomona) in March, 2018, AB 1998 strictly regulated opioid prescription by primary healthcare physicians. It limited opioid prescriptions to 3 days and required the physician to demonstrate great need for prescription refills. The only patients exempt from this regulation were those with chronic pain, cancer patients, and end of life patients.
In April, we worked with Dr. Keith Quirolo and numerous CBOs across California to first alert the sickle cell community that this legislation was on the table. Then, we provided patients with the text and tools necessary to first identify their assembly member and then to write a letter advocating for including sickle cell patients in the exclusion category.
In late May we discovered that the bill had been drastically modified – our efforts and the efforts of patients across California had paid off, joining the chorus of tens of thousands of concerned Calfornians who believed legislators should not be controlling how physicians treat patients. While, as of the end of May 2018, we had avoided this specific piece – we are still on the lookout for any new legislative threats to patients. You can read the final draft of AB 1998 here.
2018 – AB 2741 – Opioids and Minors
Similar to AB 1998, AB 2741 was drafted in response to the opioid epidemic. In its original form, Assembly member Burke’s (D – Inglewood) legislation prevented any prescription of opioids to minors. Exempted from this regulation were cancer, chronic pain, hospice, and substance abuse patients.
In May, 2018, AB 2741 was altered to officially include minors under that exemption. Again, this success would not have been possible without the action of the sickle cell community and its allies. You can read the final version of AB 2741 here.
2017 – AB 1488 – Sickle Cell Treatment Act
AB 1488 was the first piece of legislation to mandate the development of a Sickle Cell Disease Center which would not only provide care for patients, but also train medical providers across the state. Under the guidance and tireless work of Dr. Keith Quirolo, we were able to mobilize sickle cell patients from every corner of California and provided them with the tools necessary to notify legislators of their needs. AB 1488 was passed – thanks to the phenomenal effort of patients, but ultimately lacked the funding necessary to see the program come to fruition. AB 1488 would have meant long-term, meaningful change for patients across California, and we believe that it was simply one step along the way getting us closer to the changes and action patients deserve.
