Improving Health Literacy and Ending Stigma Against People in Recovery

By Mike Derkacz, President & CEO
November 10, 2023
Line art illustration of two hands shaking

Defined as a person’s ability to find, understand, and use information and services to make health-related decisions for themselves and others in their care, health literacy is one of the most effective tools we have to increase health equity, improve understanding and reduce stigma, and arrive at better health outcomes. According to the CDC, higher levels of health literacy can help people avoid potential health problems, protect their health, and equip them to better manage health problems if they do arise.[1] Furthermore, lower health literacy levels are linked with an increased likelihood of opioid misuse.[2] Additionally, those already experiencing substance use disorders are more likely to have limited health literacy, with financial factors, self-perceived health indicators and injection sharing having a significant effect.[3] Digital inequalities, such as limited access to technology, skills to leverage technology and social resources may also contribute to negative health outcomes.[4] As we look back on Health Literacy Month, which is celebrated every October, we’re focused on understanding the connection between health literacy and enduring stigmas and promoting ways to increase health literacy for ourselves, our organizations, and our communities.

There is a growing body of research across therapeutic areas establishing a direct link between health literacy levels, social support, quality of life, and physical and mental health outcomes. Addressing low health literacy levels is critical to implementing successful health interventions.[5, 6, 7]

When we focus on opioid use disorder, the need for improved health literacy is especially significant.

Stigma and health literacy as preventable barriers to OUD treatment

OUD is a brain disease, not a moral failing.

We’ve previously covered the ongoing challenge that, despite scientific evidence and consensus throughout the research community, many people today do not know that opioid use disorder (OUD) is a chronic, treatable disease that results from changes in the brain. This gap in knowledge and low health literacy is similar to how major depressive disorder (commonly known as depression) was viewed just a few decades ago. Currently, 6.7 million people in the U.S. are affected by OUD, and drug overdose is the leading cause of death for people under the age of 50.[8, 9] However, research indicates that less than 30% of people with OUD receive evidence-based treatment and services, including medical and psychiatric care.[10] Compare this to type 2 diabetes, where 88% of the diagnosed U.S. patient population receive the appropriate treatment for their disease.[11]

Additionally, persistent societal stigma impacts people with substance use disorders like OUD in several ways according to NIH:[12]

  • People may experience mistreatment, stereotyping, and other types of negative bias – including in healthcare settings. This leads people to forego care even when they may know they need it.
  • People may conceal their substance use or its extent from their healthcare providers, feeling shame and fearing bias or mistreatment, ultimately missing critical opportunities to receive care.
  • Biases that may exist with some healthcare providers can affect the type and quality of care they provide.
  • The feelings of shame and isolation that result from experiencing stigma and negative attitudes can lead people to increase their substance use.

These barriers severely prevent shared decision-making among patients and healthcare providers, a core tenant of health literacy focused on patient-centered care. By reducing the stigma around OUD and improving access to appropriate care, we help people on their recovery journey and change public perception about the disease. Our Braeburn team is hard at work to dramatically transform the understanding of OUD, both by supporting people as they begin their recovery journey and by reshaping the collective mindset around this chronic brain disease.

Practical tools for promoting health literacy

Beyond Health Literacy Month, we can all advocate for its importance – whether in the creation of educational materials, ways we communicate information, or even how we build our organizations. We’ve collected several resources that you can use yourself or share with others who are looking to increase their health literacy around OUD and recovery.

  • SAMHSA’s curated health literacy materials can help educators, healthcare providers and administrators, and patients enhance their understanding of substance use and mental health disorders. Access them here.
  • CDC provides a how-to guide for assessing your organizational health literacy and then developing a plan to make your organization’s health information more accessible, understandable, and usable, modeled after the National Action Plan to Improve Health Literacy. Read the guide here.
  • AHRQ’s Universal Precautions Toolkit provides healthcare providers and facilities with approaches and tools to increase patient understanding across all levels of health literacy. Access the full toolkit here.
  • Our team at Braeburn created a tool to assist with destigmatizing OUD by using medically accurate, neutral language that avoids assigning blame. Refer to it here when choosing language to communicate about this disease. Here are a few key takeaways:
    • Person-First – Person-First language focuses on a person’s lived experience with OUD, helping to highlight what the person needs rather than identifying them by their illness or ascribing moral judgement.
    • Without Blame – The language we use to describe the experience of living with OUD has the potential to entrench implicit, punitive biases that may challenge a person’s self-determination along their recovery journey.[13, 14]

Health literacy in action

To have a meaningful impact, it’s critical that programs and materials are created with health literacy and diversity and inclusion principles in mind. Doing so will help us better reflect and reach our exceedingly diverse patient population. As one example, SAMHSA’s Diversity Inclusion Project Showcase initiative is cultivating strong partnerships to influence the growth of healthier, more equitable communities by providing BIPOC non-profits with grant funding and advocacy support opportunities for community-based behavioral health services serving historically marginalized populations. Stakeholders from across the OUD community are putting this ethos into practice – here are a few recent efforts:

  • Savage Sisters directly supports underserved communities in Greater Philadelphia by providing outreach, shelter, and other trauma-informed resources for people living with or affected by OUD. Our Braeburn team regularly participates in their weekly and monthly outreach events in Kensington, where the opioid epidemic is at its worst.
  • Earlier this year, the Addiction Policy Forum released prevention resources translated into twelve languages to help improve language access to information on the prevention of substance use disorders.
  • Thanks to dedicated policy advocacy work by the recovery community, the passage of the Consolidated Appropriations Act of 2023 eliminated the need for HCPs to apply for and carry a DATA-Waiver to treat OUD. This policy update reduces barriers by expanding the medical field’s capacity to treat OUD and increases access to care for those who need it most, while further emphasizing that OUD is a treatable brain disease.

At Braeburn we believe in partnering with the community to create a world where every person experiencing OUD can access the best possible care as they begin their recovery, maximizing their opportunities to reach their fullest potential. By raising awareness about the critical roles improving health literacy and eliminating stigma can play in the successful management of OUD, we’re working to reduce the burden of this disease on patients and families and to support people in their recovery journey.

[1] Centers for Disease Control and Prevention. Health Literacy Basics. Available at: https://www.cdc.gov/healthliteracy/basics.html.

[2] Rogers AH et al. Health Literacy, Opioid Misuse, and Pain Experience Among Adults with Chronic Pain. Pain Med. 2020 Apr 1;21(4):670-676. doi: 10.1093/pm/pnz062.

[3] Rolova G, Gavurova B, Petruzelka B. Health Literacy, Self-Perceived Health, and Substance Use Behavior among Young People with Alcohol and Substance Use Disorders. Int J Environ Res Public Health. 2021 Apr 19;18(8):4337. doi: 10.3390/ijerph18084337. PMID: 33921885; PMCID: PMC8073264.

[4] Garett R, Young SD. Potential Effects of Digital Inequality on Treatment Seeking for Opioid Use Disorder. Int J Ment Health Addict. 2023;21(2):890-895. doi: 10.1007/s11469-021-00629-5. Epub 2021 Aug 27. PMID: 34466133; PMCID: PMC8395375.

[5] Degan TJ et al. Health literacy in substance use disorder treatment: A latent profile analysis. Journal of Substance Abuse Treatment. 96 (2019) 46. doi: 10.1016/j.jsat.2018.10.009.

[6] Kobayashi R and Ishizaki M. Relationship Between Health Literacy and Social Support and the Quality of Life in Patients With Cancer: Questionnaire Study. J Particip Med 2020;12(1):e17163. doi: 10.2196/17163.

[7] Liu Y et al. The Influence of Health Literacy and Social Support on Loneliness Among Patients With Severe Mental Illness in Rural Southwest China. Front Psychol. 2021; 12: 564666. Published online 2021 Sep 8. doi: 10.3389/fpsyg.2021.564666.

[8] Keyes KM et al. What is the prevalence of and trend in opioid use disorder in the United States from 2010 to 2019? Using multiplier approaches to estimate prevalence for an unknown population size. Drug and Alcohol Dependence Reports. 2022; 10052(3). doi: 10.1016/j.dadr.2022.100052.

[9] Centers for Disease Control and Prevention. National Center for Health Statistics. Underlying Cause of Death 1999-2018 on CDC WONDER Online Database, released in 2020. Available at: https://wonder.cdc.gov/ucd-icd10.html.

[10] Madras BK, Ahmad NJ, Wen J, Sharfstein JS. Improving Access to Evidence-Based Medical Treatment for Opioid Use Disorder: Strategies to Address Key Barriers within the Treatment System. NAM Perspect. 2020 Apr 27;2020:10.31478/202004b. doi: 10.31478/202004b. PMID: 35291732; PMCID: PMC8916813.

[11] Saydah SH. Medication Use and Self-Care Practices in Persons With Diabetes. In: Cowie CC, Casagrande SS, Menke A, et al., editors. Diabetes in America. 3rd edition. Bethesda (MD): National Institute of Diabetes and Digestive and Kidney Diseases (US); 2018 Aug. CHAPTER 39.

[12] NIH National Institute on Drug Abuse. Stigma and Discrimination. Available at: https://nida.nih.gov/research-topics/stigma-discrimination.

[13] Kelly, JF, Wakeman SE, Saitz R. Stop talking ‘dirty’: clinicians, language, and quality of care for the leading cause of preventable death in the United States. Am J Med. 2015; 128(1):8-9. doi: 10.1016/j.amjmed.2014.07.043.

[14] Ashford RD, Brown AM, Curtis B. “Abusing Addiction”: Our Language Still Isn’t Good Enough. Alcohol treat Q. 2019;37(2):257-272. doi: 10.1080/07347324.2018.1513777.