The Latino Coalition for a Healthy California (LCHC), a statewide policy advocacy organization, recently held a webinar about data equity for Latinx and Indigenous communities in the state, known as “We Count!” Panelists highlighted the importance of disaggregated data collection when it comes to addressing disparities, and spoke to the importance of Senate Bill 435, which is making its way through the legislature.
SB 435 would require the California Department of Public Health (CDPH) and the Department of Social Services (DSS) to collect and release disaggregated data for Indigenous and Latinx nations. This includes the Latinx subgroups Mexican, Guatemalan, Honduran, Salvadoran, Nicaraguan, Costa Rican, Panamanian, Puerto Rican, and Cuban.
Bill sponsor Sen. Lena Gonzalez (D – Los Angeles), has a family that is both Mexican and Salvadorian, and she said that the communities she represents are diverse and needs to ensure that the state has the correct data. She said it’s crucial to lift this bill up in the Latino Caucus, which has about 35 members and a large presence in the state legislature.
“This bill is a priority of ours to make sure that, again, Latinos are not just being looked at with one lens—that we’re looked at in a variety of different lenses so we also get the best outcomes for our health with this data.”
— Sen. Lena Gonzalez
Latinxs make up about 40 percent of California’s population, and are the largest ethnic and racial group in the state. If disaggregated data is lacking, researchers and policy makers have to depend on vaguer data released by state agencies, which may be collected differently throughout jurisdictions.
It would also extract data for each major Mesoamerican Indigenous nation, including Mixteco, Zapoteco, Triqui, Mayan, and Aztec. Mesoamerican Indigenous languages, including Zapoteco, Chinanteco, Quiche, Nahuatl, Tzotsil, Amuzgo, Chatino,and Popti would also be collected. CDPH would be required to publish an annual report on trend analysis for acute and chronic diseases, as well as utilization of and access to services.
Groundbreaking legislation regarding data collection for the Asian American Pacific Islander (AAPI) community, Assembly Bill 1726, was signed into law in 2016 and requires CDPH to collect and disaggregate data. Andrew Lee, California policy manager for the Southeast Asia Resource Action Center provided insight on data collection for the AAPI community.
“We know that in order to make progress and informed decisions … we need data equity. We need the data. Every community deserves data that they need in order to make informed decisions to advocate for their community’s unique needs,” Lee said. “For us, in a multiracial democracy, we really see data segregated by detailed race and ethnic groups as one of the most important civil rights issues for South East Asians.”
Similar to Latinx and Indigenous communities, the AAPI community is highly diverse and has complex migration and settlement histories. Lee said that there are one million AAPI individuals in the state, and the community faces unique barriers to equitable health, education, and immigration outcomes.
“These come from decades of unaddressed traumas: from war, from genocide, from displacement,” Lee said.
Disaggregated data collection will allow for greater understanding of a specific population’s health needs. For example, Cambodian adults experience Post Traumatic Stress Disorder at 20 times the rate of the general public, and many Southeast Asian women are at greater risk for certain types of cancer.
With the diversity of the Latinx and Indigenous communities, language can be a barrier, particularly since it’s often assumed that Hispanic, Latinx, and Indigenous communities are fluent in Spanish when that isn’t always the case.
“We know that when our community [doesn’t] speak Spanish, or they speak Spanish very little and they don’t get provided with Indigenous interpreters, it can create a lot more problems down the road.”
— Eulogio Espinoza, interpretive coordinator at Centro Binacional Para el Desarrollo Indigena Oaxaqueño (CBDIO)
Dr. Seciah Aquino, executive director of LCHC, said that unless the state is being intentional about the data they collect, disparities will continue to be concealed, as will key information that can save lives. She said SB 435 came to life through community partnerships such as CBDIO, Comunidades Indígenas en Liderazgo, and the Mixteco Indigena Community Organizing Project.
“We each experience the healthcare system, the safety net in a different way depending on where we come from, what we look like, what language we speak, our skin color, and unfortunately, that leads to many disparities,” Aquino said.
“What SB 435 does is seek justice for acute needs … but also [establishes] how to allocate resources. We can be more intentional, we can be more strategic, and we can actually get the resources to the communities that need them, so this is really a tool for the state. This isn’t just for our community, this is for all Californians. We all benefit by being able to take care of our neighbors.”
Aquino said it is beyond time to disaggregate this data, and that this work is only sustainable through unity. She acknowledged how communities of color have always been pitted against each other in the United States, and how it is time to walk away from that and support each other to ensure that every Californian is safe.
One of the biggest hurdles with getting this piece of legislation passed, Aquino said, is the bottom-line costs given this year’s budget deficit. LCHC has been working closely with CDPH and DSS and holding conversations about what the initial cost would be to allow for system changes to deploy data disaggregation.
In late May, the bill unanimously passed in the Senate. It’s scheduled for a hearing in the Assembly on July 11th. If Californians are wishing to support this measure, Aquino said that phone lines will be open so individuals can call into the Assembly meeting to provide public comment, and can also submit written letters of support.
“Your voice is so necessary in this movement.”
— Seciah Aquino, executive director of LCHC