Around halfway through 2019, California Governor Gavin Newsom signed the state’s annual Budget Act into law. The Act outlines the priorities for the state for the fiscal year, which that year included designating around $15 million to create the Networking California for Sickle Cell Care, which would establish a network of sickle cell patient centers throughout the state, as well as creating training for health workers and improving diagnostic surveillance.
“We were very grateful and thankful,” Jennifer Fields, a strategist who worked to help get the plan for the project in front of lawmakers who herself lives with sickle cell disease, said. “I was very hopeful that more progress would be made not only in California but across the nation.”
Sickle cell disease is a group of rare genetic disorders that are characterized by abnormal hemoglobin and can be very painful. Research and treatment for sickle cell disease, which primarily affects Black and Latino people in the United States, has been largely underfunded in comparison to other rare genetic conditions like cystic fibrosis and hemophilia which are more common in white people.
The initial funding from the state for this project, which was supposed to last three years, is running thin. Since 2019, Networking California for Sickle Cell Disease – which is run by the Center for Inherited Blood Disorders and Sickle Cell Foundation – has established 12 clinics across the state, serving nearly 1,000 patients, more than the five they were required to. NCSCC said that early data shows its initiative has reduced emergency department treatment and release visits by 11 percent and hospitalizations by 20 percent. Fields and other advocates hope to see the state invest over $10 million to help make NCSCC’s work part of the California Advancing and Innovating Medi-Cal, to help ensure that clinics are able to continue to continue to serve people living with SCD.
“The biggest [negative] factor in the prognosis of sickle cell disease is lack of care – lack of access to specialty care and lack of access to primary care,” said Dr. Elliott Vichinsky, a University of California San Francisco pediatric hematologist-oncologist who has worked with sickle cell patients since the 1970s.
The government, both federally and in California, also did not come to care about sickle cell conditions of their own volition, it took community-led campaigns to raise awareness about the need for treatment options, and also not blaming Black people for being sick for these conditions. For instance, as academic and former Biden official Alondra Nelson wrote in her 2011 book Body and Soul, a 1972 public health campaign from the Black Panther Party “strategically reworked earlier and often racially essentialist associations between sickling and blackness” that impacted patients with sickle cell disease.
Medical racism still shapes how sickle cell patients are treated, including some being labeled as “drug seeking” for trying to get help to treat their pain. In addition to disregarding pain being harmful, to begin with, pain is a sign of other internal issues with this condition.
“Pain of the patients reflects obstruction of blood flow of an area that has nerve endings,” Dr. Vichinsky said.
In not having access to providers who understand sickle cell disease, patients may not be prescribed medication like hydroxyurea, which can decrease several types of complications. Clinicians who understand the disease could be better at alerting when a patient may need a blood transfusion, and which patients could be a good candidate for a bone marrow transplant.
Why more funding for NCSCC wasn’t part of the 2022-2023 or 2023-2024 budget isn’t clear – but this lack of transparency is not atypical. California’s Legislative Analyst’s Office has previously called for more transparency in healthcare spending decisions. Newsom instead in recent years has been putting healthcare funding into supporting forced mental health treatment and the establishment of CARE courts – and, unlike the documented outcomes of these patient sickle cell care centers, forced substance abuse treatment often doesn’t work.
While the US Food and Drug Administration recently approved two gene therapies, not everyone is physically a good candidate for these treatments, and people can experience devastating side effects like infertility. Longitudinal studies, which can be crucial in building trust with patient communities, also do not exist yet on CRISPR and sickle cell disease, as it is a newer form of treatment. With the two gene therapies costing over $2 million, it can also be out of reach for people on governmental health insurance. In California, the Centers for Disease Control and Prevention estimated that in a two year period, around two-thirds of people with sickle cell disease have been on Medicaid.
“To imply gene therapy is going to make a major dent in the morbidity of sickle cell in the country…that’s not going to happen,” Dr. Vichinsky said.
Unlike his statements in early 2023 about the state not having funding for COVID-19 vaccines for migrants, Newsom has not said to the public there is no available funding for the system. Especially as this affects people with a rare disease – advocacy for care about sickle cell requires allies to make noise, including in the legislature.
“We hope to see policymakers not just pay a little bit of lip service and talk about addressing health inequities,” Fields said, “but truly need to see them show their support by continuing to invest in improving sickle cell disease care.”
