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Policy Approaches to Seemingly Intractable Challenges: Global and Domestic Activism in a Time of Divided Government

By Lizzy Lovinger and Mark Harrington

This November’s U.S. election provides an opportunity for activists to pause and assess our approach to policy. We face some unprecedented roadblocks on our path to end HIV, hepatitis C virus (HCV), and tuberculosis (TB) — and while these challenges often feel insurmountable, we must continue to engage and develop creative new ways to achieve our goals. Where else can we turn for lessons on success? Who have we not yet engaged to leverage their policymaking power? What tools remain at our disposal in spite of seemingly intractable political barriers?

Why is this moment so uniquely challenging? In Congress, partisan gridlock and ideological deterioration on the far right have chipped away at legislators’ ability to govern and undermined the ability of leaders from both parties to negotiate across differences in opinion and unite around shared goals and responsibilities to voters. Decades of consensus on funding a comprehensive HIV response domestically and globally have disintegrated, fracturing the apparent and long- lived bipartisan commitment to address pandemics such as HIV. Many bills previously considered “must-pass legislation” stalled long past their deadlines,1 and proposed funding levels for fiscal year 2025 (FY25) have been abysmally low.2

The problem doesn’t just lie within Congress, however. The Supreme Court has recently made several rulings that undermine evidence-based policies and the authority of federal regulatory agencies to use science to inform policy. Federal, state, and local health departments and related agencies have come under increasing attack, limiting their ability to effectively advise and protect the public.3 Conspiracy theories about U.S. Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH) abound,4 leading many Americans to incorrectly conclude that the agencies regularly tamper with the scientific process.5 A number of individual human rights protections have been significantly eroded through legal challenges to federal antidiscrimination law,6 making groups such as women, LGBTQ communities, people of color, and migrants far more vulnerable to marginalization and abuse. Many states in the U.S. are passing legislation that removes protection for women’s sexual and reproductive freedom and stigmatizes and attempts to outlaw sexual and gender minorities such as transgender people.

The global outlook is equally grim, with similar fundamentalist and fanatic efforts undermining HIV prevention and treatment across the world. In Uganda, for example, the Parliament, President Museveni, and the High Court all ratified and upheld legislation that includes the death penalty for LGBTQ people. In response, the Ugandan Human Rights Commission (UHRC) recently called for the decriminalization of homosexuality and sex work.7

This political dysfunction has had a devastating effect on activist campaigns to end the HIV, HCV, and TB pandemics. Within the U.S., the court ruling in Braidwood Management v. Becerra opened the door for employers and insurers to deny coverage for HIV pre-exposure prophylaxis (PrEP), a key tool in preventing HIV transmission.8 Although the federal Ending the HIV Epidemic (EHE) initiative was launched initially by the Trump Administration, House Republicans have proposed eliminating all funding for EHE in their FY25 budget.9 Another lifesaving federal program developed under a Republican administration, the President’s Emergency Plan for AIDS Relief (PEPFAR), was targeted for conservative political attacks against abortion services (which PEPFAR does not provide) — preventing the typical five-year reauthorization of the program and instead leading to a much shorter and less stable one- year reauthorization.10 Another example of partisan gridlock limiting public health response has to do with the ongoing outbreaks of mpox (formerly monkeypox) in a number of African countries. Despite the clear need for 10 million doses of safe, effective mpox vaccines, the U.S. — like other rich nations — has provided just a trickle of the substantial resources needed to the most-affected countries.

The House also proposed eliminating all harm reduction funds for the Substance Abuse and Mental Health Services Administration (SAMHSA),11 even while new HCV infections attributable to injection drug use (with nonsterile equipment) continue to top the list of reported exposures,12 and 7 of the 10 states with the highest HCV-related death rates13 were under consistent Republican leadership.14 While HCV diagnosis and treatment programs15 struggle to keep up16 with the constant need for their services,17 politicians engage in inhumane and unwise budget cuts.18 TB programs do not fare well in that budget either; just as rates of new TB infections rose to their highest level in a decade,19 CDC’s domestic TB program remained flat-funded in the FY25 proposal, leaving CDC-funded state and local programs understaffed and overwhelmed.

There are still some glimmers of hope. The 1/4/6×24 Campaign, launched at the 2022 International AIDS Conference in Montreal,20 takes aim at the political inertia and business-as-usual approach that has hindered progress against TB in many countries. By forming a unique coalition of civil society, ministries of health, multilateral authorities, direct service providers, and affected communities, this campaign offers a novel strategy to end TB by making the best available treatments accessible to all who need them.21 Partners of 1/4/6×24 come together to examine the main barriers to treatment, develop advocacy messaging and tools, organize outreach and activism, hold companies and governments accountable, determine research gaps, and ultimately ensure that as many people as possible have what they need to fight TB.22

TAG’s mid-campaign report published earlier this year shows that the campaign has achieved major price reductions in the cost of key drugs bedaquiline and rifapentine and the Cepheid test for TB. Countries such as Azerbaijan, Indonesia, Kenya, Malawi, the Philippines, South Africa, Ukraine, and Zambia are each moving TB treatment into the new era with shorter, safer, and more effective regimens.23

This kind of ingenuity in the face of steep obstacles — by proposing a new paradigm, a new set of evidence-based goals, and actions for all partners to take in a time-bound fashion — offers a useful case study in the possibilities of activism. How can these methods of gathering stakeholders, subverting stubborn power structures, and creating ambitious but achievable goals be replicated elsewhere? Some of the aforementioned challenges provide interesting examples of policymaking targets that are due for a significant change in tactics.

Decentralizing and decolonizing global health demands new investments in global and multilateral strategies led by providers and communities in low- and middle-income countries. The current mpox epidemic in central and west Africa, like Covid-19 and HIV before it, provides strong justification for the development and implementation of vaccine and treatment manufacturing by companies in the region.

Domestically, activists are working creatively in coalitions with local and state health departments even in places where the political environment is challenging, such as in the U.S. South.

When legislative policymaking proves difficult or impossible, activists can seek out untapped funding sources and agency collaborations elsewhere. This strategy has been successful in the case of U.S. federal funding for drug-resistant TB (DR- TB) research and development (R&D). As outlined above, the House FY25 appropriations bill severely limited spending on public health — including much-needed NIH, CDC, and U.S. Agency for International Development (USAID) funds to support and expedite studies for technologies fighting antimicrobial resistance (AMR).

One research agency fared much better in that bill: the Biomedical Advanced Research and Development Authority (BARDA).24 BARDA’s budget was safer and more plentiful than traditional TB R&D funding sources, and it has the proven capacity to enable end-to-end product development under an ambitious timeline. This speed in particular is crucial to addressing AMR more quickly than it can further develop; in the case of DR-TB, it is vital to have new effective treatments available faster than the bacterium can develop resistance to existing treatments. Importantly, as a CDC-designated Serious Antimicrobial Resistance Threat,25 DR-TB is eligible for funding under BARDA’s AMR portfolio. Though it remains to be seen whether this language will be signed into law, TB activists did achieve the unprecedented interim win of having DR-TB included in BARDA’s House FY25 report language mandates.26

Communities can build their own social safety nets independent of policymakers that are rooted in a human rights approach and offer consumer-responsive services and protections. This has long been the case for grassroots harm reduction providers27 and mobile primary care outreach services,28 but this model could be expanded to housing, working, and consumer rights. For example, a housing rights organization could train small landlords on how to respect those rights — and hold them accountable for doing so — with a “tenant-friendly” certification program. Strengthening unions and their right to organize workers is another important approach. Similarly, consumer rights programs could engage public accommodations on best practices. While activists should certainly continue to fight to protect the ironclad legal protections that remain under our current regulatory system, creative alternatives can provide useful protections through community mobilization, “name-and-shame” strategies, and creative use of local and social media platforms.

In this issue, our colleagues outline bold visions for public health, then focus more deeply on some of the critical challenges we face today and strategies to overcome them. Gisa Dang and Mike Frick look at the ongoing, long-delayed global pandemic treaty negotiations, where many of these issues are coming to a head. TAG is working with allies to seek a reinvigorated treaty that encompasses a strong human rights–based framework. De’Ashia Lee, who runs the ACT NOW: END AIDS (ANEA) Coalition, writes a searing indictment of the historical oppression and exploitation of Black women in the U.S. health and research systems. Joelle Dountio Ofimboudem provides an update on the continuing global challenges in accessing low-cost, high-quality generic cures for HCV. Ugandan disability activists Wilson Kutamba and Richard Musisi give us an eye-opening account of the challenges disabled people in Uganda face when trying to access HIV and TB services.

Throughout the past 32 years, TAG and our allies have worked to establish frameworks of global solidarity, access, action, and impact, to save the lives of all those living with and at risk for pandemic diseases such as HIV, TB, HCV — and we’re not going back!

Endnotes

  1. Progressive Caucus Action Fund. What’s On Congress’ To-Do List? Must Pass Bills in 2024. https://progressivecaucusactionfund.org/must-pass-bills-2024
  2. House Appropriations Committee Releases FY25 Labor, Health and Human Services, Education, and Related Agencies Appropriations Act. https://appropriations.house.gov/news/press-releases/committee-releases- fy25-labor-health-and-human-services-education-and-related
  3. National Library of Medicine. Public Health Practice (Oxf). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10847788/
  4. ABC Key takeaways: Fauci defends against GOP claims on COVID origins, response. https://abcnews.go.com/Politics/republicans-poised-grill- anthony-fauci-covid-19-response/story?id=110677611
  5. House Republicans fault HIH for evasive answers on risky monkeypox virus study. https://www.science.org/content/article/house-republicans-fault- nih-for-evasive-answers-on-risky-monkeypox-virus-study
  6. Human Rights Watch. US Supreme Court Erodes Anti-Discrimination Laws. https://www.hrw.org/news/2023/06/30/us-supreme-court-erodes-anti- discrimination-laws
  7. Erasing 76 Senior Ugandan official calls for decriminalization of homosexuality. https://76crimes.com/2024/10/07/ugandan-official- decriminalize-gay-sex/
  8. Explaining Litigation Challenging the ACA’s Preventive Services Requirements: Braidwood Management Inc. v. Becerra. https://www.kff.org/womens-health-policy/issue-brief/explaining- litigation-challenging-the-acas-preventive-services-requirements-braidwood-  management-inc-v-becerra/
  1. Housegov. A Bill making apprpriations for the Depts. Of Labor, Health and Human Services, and Education, and related agencies for the fiscal year ending September 30, 2025, and for other purposes. https://docs.house.gov/meetings/AP/AP07/20240627/117475/BILLS-118- SC-AP-FY2025-LaborHHS-FY25LHHSSubcommitteeMark.pdf
  1. PEPFAR’s Short-Term Reauthorization Sets an Uncertain Course for Its Long-Term Future. https://www.kff.org/policy-watch/pepfars-short-term- reauthorization-sets-an-uncertain-course-for-its-long-term-future/
  2. gov Appropriations. Committee Releases FY25 Labor, Health and Human Services, Education, and Related Agencies Appropriations Act. https://appropriations.house.gov/news/press-releases/committee-releases- fy25-labor-health-and-human-services-education-and-related
  3. CDC Viral Reported risk behaviors or exposures among reported cases of acute hepatitis C — United States, 2022, table 3.3. https://www.cdc. gov/hepatitis/statistics/2022surveillance/hepatitis-c/table-3.3.htm
  4. CDC Viral Hepatitis. Rates of deaths with hepatitis C listed as a cause of death among residents, by state or jurisdiction — United States, 2022, figure 9. https://www.cdc.gov/hepatitis/statistics/2022surveillance/hepatitis-c/ figure-3.9.htm
  5. Ballotpedia. State government trifectas. https://ballotpedia.org/State_ government_trifectas
  6. Penn LDI. Cost-Effective Screening and Treatment of Hepatitis C. https://ldi.upenn.edu/our-work/research-updates/cost-effective-screening-and- treatment-of-hepatitis-c/
  7. California Dept. of Public Health Division of Communicable Disease Control. Hepatitis C Testing and Linkage to Care Demonstration Projects, California — 2018- 2018, Evaluation Report. https://www.cdph.ca.gov/Programs/CID/DCDC/ CDPH%20Document%20Library/HCV_Demo_Eval_Report_ADA.pdf
  8. National Library of Medicine, PLoS One. HCV screening, linkage to care, and treatment patterns at different sites across one academic medical center. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6619669/
  9. Johns Hopkins Bloomberg School of Public Health. What Is Harm Reduction? https://publichealth.jhu.edu/2022/what-is-harm-reduction
  10. AP News. US tuberculosis cases were at the highest level in a decade in 2023. https://apnews.com/article/tb-tuberculosis-cdc-us-e278fdbc1a7912bfbbab893 4ad0691d9
  11. Treatment Action Group. 1/4/6×24 Campaign Launched to Rally Energy, Political Will, Funding Needed to Fight Tuberculosis.
    https://www.treatmentactiongroup.org/statement/1-4-6-x-24-campaign- launched-to-rally-energy-political-will-funding-needed-to-fight-tuberculosis/
  12. Treatment Action Group. 1/4/6×24 Introduction. https://www.treatmentactiongroup.org/1-4-6-x-24/
  13. Treatment Action Group. I/4/6×24 Campaign Commitments. https://www.treatmentactiongroup.org/1-4-6-x-24/
  14. Treatment Action Grup. Getting Better Faster: Delivering on the Promose of New TB Treatments – A Report from the 1/4/6×24 Campaign. https://www. treatmentactiongroup.org/publication/getting-better-faster-delivering-on-the- promise-of-new-tb-treatments-a-report-from-the-1-4-6×24-campaign/
  15. House.gov. Making appropriations for the Departments of Labor, Health and Human Services, and Education, and related agencies for the fiscal year ending September 30, 2025, and for other purposes.
    https://docs.house.gov/meetings/AP/AP07/20240627/117475/BILLS-118-SC- AP-FY2025-LaborHHS-FY25LHHSSubcommitteeMark.pdf
  16. DCD Antimicrobial Resistance. 2019 Antibiotic Resistance Threats Report. https://www.cdc.gov/antimicrobial-resistance/data-research/threats/index.html
  17. House. Gov. Making appropriations for the Departments of Labor, Health and Human Services, and Education, and related agencies for the fiscal year ending September 20, 2025, and for other purposes. https://docs.house.gov/meetings/AP/AP07/20240627/117475/BILLS-118-SC-AP-FY2025-LaborHHS-FY25LHHSSubcommitteeMark.pdf
  18. National Harm Reduction Coalition. The Movement. https://harmreduction.org/movement/evolution/
  19. Center for Primary Care Harvard Medical School. Advancing Health Equity and Value-Based Care: A Mobile Approach. https://info.primarycare.hms.harvard. edu/perspectives/articles/mobile-clinics-in-the-us-health-system
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