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For the past three years, I have worked closely with people in communities burdened by overdose deaths. In these communities, a person using drugs may suspect their cocaine, for instance, is laced with fentanyl, because they have seen neighbors overdose and die. Yet, lacking resources such as harm-reduction services in their community, they take the drugs and overdose.
Harm-reduction services are missing for a simple reason: These communities – primarily Black – are not being counted. If they are, it is too late.
Overdose no longer primarily impacts white communities. Overdose deaths among Black and Indigenous populations have significantly increased. Overdose deaths among Black individuals rose by 44 percent from 2019 to 2020, about double the proportional increase in deaths among white and Hispanic people. Overdose deaths among American Indian and Alaskan Native American individuals increased by 39 percent.
Unfortunately, data by race and ethnicity in a number of administrative data sources is either lacking or missing. Furthermore, this data is delayed, which prevents rapid responses to the crisis for all communities.
Access to the race/ethnicity data of those affected by the overdose epidemic is key to policy planning and intervention decision-making. Unfortunately, such data is not routinely collected by many administrative data sources and community health care clinics and agencies.
Further, the term “opioid epidemic” no longer fully captures the complexity of the U.S. crisis. The “overdose epidemic” is more apt, since, as in the introductory account I noted, multiple drugs are often involved in overdose deaths. Most of the 104,034 drug fatalities in 2021 involved illicitly manufactured fentanyl, a synthetic opioid.
I have studied substance use for over 25 years and am a principal investigator on the HEALing Communities Study in New York to reduce overdose fatalities. In the new face of this crisis, delivery of timely data and collection of data on race/ethnicity are critical to a rapid and equitable response to this growing epidemic, as are community-led responses.
Absence of data by race/ethnicity limits access
Data on race/ethnicity is lacking throughout health systems in the U.S. This absence directly harms communities of color by limiting their access to needed drug treatment and other services. In our HEALing Communities Study we learned that data on race/ethnicity is missing from symptoms presenting in emergency departments, emergency medical services, hospital inpatient records, emergency department discharge and certain prescription data.
Many community-based programs, health clinics and harm-reduction programs do not collect data by race/ethnicity on the number of individuals receiving services, treatment or naloxone kits. Often such organizations lack resources, training and access to technical assistance to collect this data.
The absence of data on race/ethnicity exacerbates the overdose death crisis in already-overburdened communities of color that are also facing structural racism, lack of access to health care, discrimination and stigma.
Data delays are deadly
States and departments of health rapidly developed surveillance systems and various dashboards to fast-track and share data on COVID-19 by all demographic characteristics including race, age and ethnicity; we need the same for the drug overdose crisis.
The delay of fatal overdose data blinds us from seeing high-risk populations. Reporting data on overdose deaths often lags by a year or more, prohibiting a meaningful data-driven response to address the overdose crisis.
Data on drug fatalities mainly relies on investigations from law enforcement and medical examiners, and toxicology results. Both are needed to complete death certificates, yet may take over a year to receive. This delay prevents timely action.
Rapid data on overdose deaths is needed to understand the changing crisis and to inform data-driven decisions on care, including medication for opioid use disorder, naloxone and harm-reduction services. Timely data would help communities guide their public health response.
Funding and infrastructure are needed to ensure data collection is possible
Opioid litigation settlement funding from drug companies should be used to fund data improvements, including infrastructure and technology for the offices of medical examiners/coroners and toxicology labs to process the data more quickly, educate staff on data collection and streamline clearance processes.
Policymakers must seek solutions to collect demographic data within the national effort to create all-payer claims databases. Essentially, health insurance payers would not be paid unless they input demographic data. This would incentivize insurance companies to fund solutions and address reluctance due to racism in the health care system, negating the excuse, “I’m too busy to track demographic data.”
The experiences and preferences of the impacted people in these communities must be integrated. Data collection processes not jointly tailored with community involvement are a waste of scarce resources.
Dr. Nablia El-Bassel of New York City is a university professor at Columbia and director of both the Social Intervention Group at the Columbia University School of Social Work and the Columbia Center for Healing of Opioid and Other Substance Use Disorders.
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