By Annette Gaudino and Suraj Madoori
Let’s Define Terraforming
Terraforming — or “earth-shaping” — the transformation of an alien planet into one where humans can live, is probably most familiar to science-fiction fans and Minecraft players. Terraforming is more intensive than landscaping, the term used to describe the need to understand local politics to win policy fights. Change requires more than knowing the key players and presenting compelling evidence, it also requires actively shaping the terms of the debate, including what’s considered “too radical.”
Terraforming for policy change requires time and patience. Vulnerable communities have immediate needs that advocates and allies must address before they can accept — and demand — emerging long-acting technologies (LATs) for HIV, hepatitis C virus (HCV), and tuberculosis (TB) prevention and treatment. These communities need technical information clearly communicated, non-health related needs (housing, income, safety) addressed, and understandable fears assuaged. This work should center around the most marginalized: those denied treatment due to active substance use or incarceration, criminalized LGBTQ+ people, unhoused individuals, the uninsured and underinsured, including immigrants. Policymakers must acknowledge and address the racism faced by Black, Indigenous, and people of color. Models of care and financing mechanisms must adapt to increase access and demand for LATs among the most marginalized. Struggles for care are not new, and advocates can learn from these histories to guide terraforming policy for LATs access.
We Keep Us Safe
Harm reduction was born from the response of people who use drugs to the deadly HIV epidemic. Harm reduction embodies a whole society effort to support the well-being of people who use criminalized substances. The HIV transmission risk from sharing syringes is high, so people who inject drugs developed ways to keep themselves and their communities safe. Unsanctioned syringe service programs (SSPs) challenged local laws against possession and distribution of so-called paraphernalia to save lives. Over time, leadership by those directly impacted — in partnership with clinical providers, researchers, and community leaders — created an enabling legal and political environment for SSPs to evolve from acts of civil disobedience to evidence-based infectious disease prevention.
Each averted infection built the case for sanctioned, funded SSPs, which serve as entry points to other services and support. While more was and is needed to create safe spaces in clinical settings for people who use drugs, the success of SSPs in preventing HIV gave people who use drugs the opportunity to be viewed as partners in public health. Inverting the traditional direction of public health education, so that people with lived experiences educate the credentialed experts, is key to terraforming for policy change. When the targets of an intervention inform its design and implementation, the landscape becomes transformed and truly livable.
The formative period for SSPs provided additional lessons: it confronted and disproved the belief that people who use criminalized substances don’t care for their health or the health of others. It framed health care, including access to the tools needed to stay safe, as a matter of human rights.
The U.S. South
Without the advance work of terraforming, a public health crisis risks entrenching approaches that further harm public health. The U.S. South is home to examples of this damaging dynamic.
In 2018, the Kanawha-Charleston syringe service programs (SSPs) in West Virginia — which served 400 people a week — chose to indefinitely suspend services following changes to local legal requirements.1 Now, those seeking care would need to provide proof of residency and government-issued photo identification. Not only did this raise access barriers, it also violated the trust developed between SSP staff and participants. While the overdose crisis is the result of multiple factors, the state reported a slight decrease in overdose deaths from 2017 to 2018.2 West Virginia now has the highest rate of overdose deaths in the nation, suffering a nearly 50% increase in 2020 over the previous year.
Similarly, North Carolina’s legislature has sought to eliminate SSPs by making their establishment as burdensome as possible: limiting neighborhoods in which prospective SSPs can operate, requiring approval from over half of the residents in a neighborhood, and barring site staff who have a conviction or misdemeanor on their record. Grandstanding political efforts to be “tough on crime” have also led to the closure of SSPs in Indiana, Michigan, and New Jersey.
SSPs remain illegal in 29 states, all of which have Republican-controlled legislatures and are predominantly in the U.S. South. Yet, we can find hope in local leaders such the North Carolina Harm Reduction Coalition (NHRC), who are working to make it the first Republican-led state to authorize an SSP. Decriminalization of SSPs cannot be a Democrat-only effort, particularly in the South, where terraforming for policy change requires a bipartisan approach.
Locally-led efforts such as NHRC’s offer lessons on what works best to decriminalize populations most vulnerable to HIV, HCV, and TB. Grassroots organizing of diverse, powerful stakeholders — including people who use drugs, veterans, Black clergy, and sex workers — underpins these efforts. Community mobilization can build and strengthen networks to push bold demands, such as integrating game-changing LATs into harm reduction sites and health hubs for people who use drugs. Most importantly, these efforts require lawmakers and public officials to respond to the demands of their constituents.
Paying for It
Even with a high level of community acceptance and demand, health systems must take a holistic approach to coverage in order to reach those most in need of care. This means providing all services at no out-of-pocket cost, from the screening stage all through lab test monitoring. In the U.S., this requires expanding and sustainably financing Medicaid, and subsidized private insurance.
Policymakers will determine how LATs will be funded based on what settings are deemed appropriate for their administration. These decisions will impact who gets access to treatment. Patients could potentially receive LATs in hospital-based clinics, community health centers, pharmacies, or any combination of these settings. In each case, reimbursement rates and policies will generate revenue to these providers, a powerful motivation to lobby for mechanisms that benefit some providers over others. Providers may also use reimbursement mechanisms and logistics as justifications to override patient preferences or informed consent: prison staff may prefer the convenience of administering monthly injections over dispensing oral medicines (see interview with Dave Thomas). Logistics such as cold-chain storage requirements and package volumes will impact access, as it has for mass COVID-19 vaccination programs.
Decades of the HIV pandemic have clearly demonstrated that the most effective advocates for comprehensive services are those living with or at highest risk of illness. If patients are preemptively excluded due to their criminalized drug use, new clinic capacity cannot care for them. Without a mobilized community of patients demanding care, it would take rare political courage to change policies to finance diagnostics, treatment, and monitoring — to deliver cutting-edge LATs to the poorest and most marginalized.
Broad acceptance and use of LATs require nothing less than the transformation of the U.S.’s healthcare delivery and financing system. This possibility should not frighten advocates or be used as an excuse not to act. LATs are yet another opportunity to apply lessons learned and make concrete choices in favor of universal care.
Overcoming Histories of Harm
Medical mistrust is a rational response to the long, terrible history of harm done to Black, Indigenous, and other people of color by medical institutions and researchers. The responsibility for repairing the relationship between patients and their caregivers rests with the medical profession and other authorities and begins with listening to and learning from experiences of impacted communities. This is especially true for individuals whose behaviors are explicitly criminalized, including LGBTQ+ people, gender non-conforming people, and people who use and distribute illicit drugs.
In the case of LAT, advocates must engage those who fear malicious intentions on the part of pharmaceutical companies. Community wariness about locating services that may attract police attention due to the people they serve must be understood and worked through. Stigmatizing attitudes that deny the humanity of marginalized individuals within marginalized communities must be confronted.
The shaky roll-out of COVID-19 vaccines have revealed a key insight — having a game-changing technology does not guarantee acceptance by the communities that need them the most. Vaccine hesitancy, a result of historically unaddressed medical mistrust and racism, remains a formidable challenge to overcome in reaching vaccination goals. For LATs to succeed, advocates and policymakers much change policies that criminalize and stigmatize. Clinicians, drug user unions, harm reduction advocates, and other community-based networks are central to tackling medical mistrust.
With the ever-closer horizon of LATs, policymakers have a window of opportunity to ensure their viability and acceptance. The time is now for brave, bold policymaking and terraforming the landscape for LATs:
- Significant scale-up in community mobilization among people who use and inject drugs, LGBTQ+ people, sex workers, and other marginalized communities.
- Resources to sustain key access points of care for vulnerable populations including SSPs and AIDS Service Organizations (ASOs).
- Undoing harmful policies — including laws that criminalize people who use drugs, HIV and other infectious diseases — to increase access to LATs and other care.
- In the U.S., Medicaid expansion, and payer mechanisms that include LATs in a comprehensive package of care (diagnostics, lab monitoring coverage, case management, and linkage to ancillary services).
- Community leadership by vulnerable and key population constituencies in the development and implementation of policies
- Systemic changes to promote the uptake of new technologies like LAT, and significantly diminish the effects of medical and institutional mistrust.
Endnotes
1 Allen ST, Grieb SM, O’Rourke A, et al. Understanding the public health consequences of suspending a rural syringe services program: a qualitative study of the experiences of people who inject drugs. Harm Reduct J. 2019 May 21;16:33. doi:1186/s12954-019-0305-7.
2 Department of Health and Human Resources (West Virginia). Gov. Justice: DHHR Data Suggests West Virginia Overdose Deaths Appear to be Declining. 2019 September 5. https://dhhr.wv.gov/News/Pages/Gov.-Justice—DHHR-Data-Suggests-West-Virginia-Overdose-Deaths-Appear-to-be-Declining.aspx.