A Patient Advocate’s Perspective: The Call of this Moment
Earlier this year, I asked myself and the global public health field a serious question; Are we dedicated to the service of humanity, or are we serving our egos? That question rightfully ruffled feathers that needed to be ruffled. The reality is we live in a time that because of the loudest parties doing the very least, the “truth” is a question instead of fact.
We seem to be on a precipice when we should be finding ourselves at a critical decision point. As we approach the end of the year, an election that will undoubtedly shape our work, global conflict, the realization of climate change and the 2025 Standard Development Goals, I find myself asking a different question, “Are we ready and willing to do what is needed to meet this moment?” Additionally, are we prepared to get out of our own way or get out of the way of others if we are the obstacles?
We find ourselves in a world of increased polarization, the “us versus them” chasm that has only widened over the years, creating an environment that makes bipartisanship seem impossible. We also find ourselves at a stalemate in the HIV space; it is no longer the “sexy” disease with the global leadership and investment it has had. Our political leadership lacks follow through on its historical, robust commitments, non-profits are strained and advocates are burnt out. We have yet to acknowledge the lasting impact COVID-19 has had on all of us and the permanent damage it has done to trust in governments, science, and the goodwill of our neighbors, both domestically and globally. We have long shouted that communities who have led our movement since the early days should be involved in every element of the process. I believe that it is long past due to these same communities who are most impacted (not only by HIV and chronic illnesses but are in the center of the target of divisive political issues) should be holding the reins, they know what their communities need and want.
Self-reflection should be an essential part of our work, collectively and individually. We need to have space and time to reflect on our personal impact, influence, and commitment. In the field of public health, who does and how we decide who has power can have lasting and profound impact on the well-being of millions. Who is sitting at the top of the food chain at places like the CDC matters. Qualifications and experience over the partisan nonsense that we daily find ourselves in should be priority number one. When we allow the divisive climate to infiltrate our own ranks it has consequences. CANN’s CEO, Jen Laws, frequently reflects on the damage caused by Democrats’ role in forcing out Dr. Brenda Fitzgerald at the Centers for Disease Control & Prevention (CDC). “Fitzgerald had an objectively good background for leading the CDC, especially with her history of improving Georgia’s childhood vaccine uptake. Ending up in an environment where a known HIV vaccine scam artist was leading the CDC was absolutely catastrophic to our COVID response, public trust in public health, and renewed vaccine hesitancy.” Jen has never been one to mince words. Indeed, that short-sightedness led by partisan motivation has resulted in renewed vaccine hesitancy, HIV denialism, and weaponizing health conditions in order to oppose the civil rights of immigrants.
While ethical oversight is critical, our focus should remain on appointing leaders who are scientifically rigorous, experienced, and free from extreme ideological positions that could harm public health efforts. Effective public health leadership requires the ability to build coalitions, foster trust, and base decisions on the best available evidence—regardless of political affiliation. The COVID-19 pandemic laid bare the need for clear, consistent messaging and policies that prioritize public health over politics.
As we tackle ongoing public health challenges from infectious diseases to the opioid epidemic, rising rates of chronic illness and emerging health threats, it is imperative that future CDC leaders be chosen based on their qualifications and experience, not as a result of political maneuvering. Bipartisan collaboration ensure that the CDC and other agencies remain focused on their primary mission: protecting the health and well-being of all Americans.
This moment calls for us to return to objective truth instead of fear mongering and conspiracy, the acceptance that two things can be true at the same time, but it also calls on us to have hope that there is a future where public health is something we can agree on both sides of the aisle about. I don’t think that starts with our politicians, that starts with each of us willing to cross the street to meet our neighbors, to find what we have in common instead of the things that have separated us for far too long. We need to return to a culture where our politicians are far more concerned about their constituents instead of sound bites, where we lead with the intention of collaboration and finding bipartisan ways to renew political investment ensuring equitable access to health for everyone.
We are indeed at an inflection point, as highlighted by our friends at the O’Neill Institute. We must renew our commitment to ending HIV and the partisanship that drives disparities in access to care, degradation of our civil and human rights, and blinds us to the humanity of our neighbors.
Public Input Needed: Offer Input on HIV, STI, Vaccine, and Hepatitis Policies
The Office of Infectious Disease and HIV/AIDS Policy (OIDP) at the Department of Health and Human Services (HHS), alongside the White House Office of National AIDS Policy (ONAP), has released a Request for Information (RFI) to inform the 2026–2030 national strategic plans for HIV/AIDS, sexually transmitted infections (STIs), vaccines, and viral hepatitis. This RFI represents a key opportunity for public health stakeholders to shape policies that will directly impact prevention, treatment, and care for millions of people across the country.
Why Strategic Planning Matters
National strategic plans guide public health efforts at federal, state, and local levels. They establish priorities, direct resource allocation, and shape policies that determine the availability and quality of health services. The upcoming 2026–2030 plans aim to build on past progress while addressing new and evolving challenges.
For instance, the National HIV/AIDS Strategy for 2022–2025 set ambitious goals to reduce new HIV infections by 75% by 2025 and by 90% by 2030. Similarly, the Viral Hepatitis National Strategic Plan aims to eliminate viral hepatitis as a public health threat by 2030. These strategies are powerful tools that help us move toward improved health outcomes by setting clear goals and priorities.
What the Strategic Plans Address
Each of the four national strategies addresses unique public health challenges:
National HIV/AIDS Strategy – Sets forth a roadmap to end the HIV epidemic in the United States, with goals including:
Prevent New HIV Infections: Increasing awareness, testing, and access to prevention tools like PrEP and PEP, while reducing HIV-related stigma.
Improve Health Outcomes for People with HIV: Promoting early linkage to care, long-term retention, and viral suppression through integrated and culturally competent health services.
Reduce Disparities and Inequities: Addressing structural factors such as stigma and discrimination and focusing efforts on disproportionately affected populations.
Achieve Integrated, Coordinated Efforts: Promoting collaboration across sectors to integrate HIV prevention with services for STIs, viral hepatitis, and mental health, among others.
Sexually Transmitted Infections National Strategic Plan – Aims to respond to rising STI rates by:
Preventing New STIs: Increasing awareness, expanding prevention activities, and improving vaccination rates for HPV.
Improving Health Outcomes: Expanding screening and treatment in impacted communities.
Accelerating STI Research and Innovation: Supporting the development of vaccines, diagnostic tools, and treatment options.
Reducing STI Disparities and Inequities: Addressing stigma, expanding culturally competent services, and addressing social determinants of health.
Achieving Integrated, Coordinated Efforts: Promoting collaboration across STI, HIV, and viral hepatitis prevention efforts.
Vaccines National Strategic Plan – Focuses on eliminating vaccine-preventable diseases by:
Fostering Innovation in Vaccine Development: Supporting research and development of new vaccines and technologies.
Maintaining Vaccine Safety: Enhancing safety monitoring and public awareness of vaccine-related risks.
Increasing Vaccine Knowledge and Confidence: Addressing vaccine misinformation and improving public understanding of vaccine benefits.
Improving Access and Uptake: Reducing barriers to vaccine access and improving coverage, especially in underserved populations.
Supporting Global Immunization Efforts: Strengthening international collaboration on vaccine initiatives.
Viral Hepatitis National Strategic Plan – Targets the elimination of viral hepatitis as a public health threat, with goals such as:
Preventing New Infections: Increasing vaccination for hepatitis A and B and addressing transmission among people who use drugs.
Improving Health Outcomes: Ensuring timely testing, treatment, and retention in care for people with viral hepatitis.
Reducing Disparities and Inequities: Addressing stigma, enhancing culturally competent care, and focusing resources on high-risk populations.
Improving Surveillance and Data Usage: Enhancing data collection and sharing to better understand and address viral hepatitis trends.
Achieving Integrated, Coordinated Efforts: Promoting partnerships that address viral hepatitis, HIV, STIs, and substance use disorders together.
The Importance of Public Input
Public participation in the RFI process ensures that these plans reflect the real needs of communities. When stakeholders provide insights based on their experiences, it helps to ensure that strategic plans are grounded in the realities of public health challenges. The voices of people living with HIV (PLWH) and their advocates have led to a greater emphasis on reducing stigma and expanding access to essential services like mental health and substance use support. This type of feedback is needed in order to ensure that health strategies address barriers to care, particularly among marginalized populations, and incorporate promising approaches to delivering services and engaging communities.
By providing input, you can help shape strategies for integrating services across HIV, STIs, viral hepatitis, and vaccine-preventable diseases, making it easier for patients to navigate the healthcare system. Your insights could also highlight ways to leverage new technologies and data systems to improve health outcomes, ultimately influencing policies that determine the availability and quality of health services across the country.
How to Participate
To make your feedback impactful, it's important to examine the existing strategic plans (linked above) and identify areas that could benefit from improvement or expansion. Consider submitting detailed, data-driven feedback based on your experiences or expertise, connecting your observations with broader public health trends or research. Highlighting emerging issues that are currently underrepresented in the plans can also make a significant difference. Additionally, sharing effective practices from your work or community that could be scaled nationally will help ensure that these strategies are practical and inclusive.
The deadline for submitting comments is December 6, 2024, at 11:59 pm ET. You can participate by submitting your feedback through the online form. Your contribution can help create a public health system that is responsive to the needs of all communities.
Why Your Input Matters
By contributing to this RFI, you help ensure that public health strategies are grounded in evidence and lived experience, and are responsive to the communities most affected by HIV, STIs, viral hepatitis, and vaccine-preventable diseases. Your feedback can shape policies that address the most pressing needs of people impacted by these conditions, advance evidence-based approaches, reduce health disparities, and promote equity. Moreover, your input can help improve coordination across healthcare systems and levels of government, ultimately leading to better health outcomes for millions of people.
Your voice matters in shaping the future of public health. Participate in advocacy campaigns by joining public health advocacy groups working to ensure equitable health policies. Share this information with colleagues, networks, and community members who might also want to contribute their insights. Engaging in webinars or public discussions related to the strategic plans can also help you stay informed and connected, providing more opportunities to make an impact.
Final Thoughts
The 2026–2030 national strategic plans will shape public health policy in the U.S. for years to come. Your participation in the RFI process gives you a voice in crafting strategies that are effective, equitable, and responsive to community needs. By sharing your knowledge and experiences, you can help create a future where public health efforts truly serve all communities.
Together, we can make a difference—let's ensure that these plans reflect the needs of everyone, especially those most impacted.
A Different Booster: HBV Vaccines among PLWHA
Because of the shared transmission vectors between HIV and Hepatitis B (HBV), the rate of co-infection is about 10% in the United States, according to the Centers for Disease Control and Prevention (CDC). As a result, people living with HIV (PLWHA) are more likely to experience adverse health impacts including cirrhosis and certain types of liver cancers. A small study conducted in Chile took a look at the recommended HBV vaccine schedule among adults living with HIV and HBV antibody uptake and potentially finding cause for a “high dose” fourth shot to be added into the series for PLWHA.
A giant asterisk belongs on the study’s findings, labeled “deserves further study consideration”. Despite being double-blinded, the study’s greatest weakness included participant pool size (right around 100 participants) and clinical selection criteria (which remains an issue in clinical trial work, generally speaking). In order to be considered for the study, participants generally had to present with an undetectable HIV viral load and no other comorbidities, ruling out application of the resulting data to most PLWHA and especially most long-term survivors or people experiencing barriers to care or medication adherence concerns – or those most likely to be impacted by HIV and HBV co-infection.
The study sought to examine the need for revaccination among PLWHA. Of note, the CDC’s “Pink Book” on HBV does not recommend “boosters” unless a particular “low” threshold of HBV antibodies is met, nor does the publication recommend for routinized serological testing among people who have previously received a vaccine. Therein lies a program and policy problem. We’ll get to that in a moment.
As a result of selection bias favoring those with more ideal circumstances, few participants dropped out of the trial. The study itself found that a fourth and “stronger” dose of vaccine improved antibody responses among people with “well controlled” HIV with an improved HBV antibody response from 50.9% in the low-dose arm of the study to 72% among the high-dose arm of the trial. After a one-year follow up, 80% of participants of the high-dose arm still had sufficient antibody titers, whereas only 39% of the standard-dose arm still had sufficient antibodies for protection.
While Ryan White and CDC funded clinical care programs for PLWHA require HBV monitoring and vaccination efforts as part of their grant funding, few entities necessarily do and almost no private providers do. Federally-funded providers may screen upon intake or initial labs but maintenance screening is not a priority in terms of clinical data collected on a given patient. Even on-site audits from these funders can sometimes look like reviewing particular case files and discussing details but the HBV conversation is not pressing. Rather, a review of intake data can suffice depending on the clinical auditor/consultant (site-visits and audits are often conducted under the supervision of the funding agency but only actually audited by consultants, including staff from other funded clinics).
Public funders aiming to end HBV and the unjust circumstances in which PLWHA are not educated by their providers on the other risks to their health should shift some focus to emphasize the need for preventative care – especially vaccines. Provider education for these publicly funded clinics should include the need to routinize HBV antibody monitoring not just as a concern on behavioral risk factors continuing in a client’s life but because HBV immunity is clearly not necessarily a given, regardless of prior vaccination history.
While the study suggests the need for investigating further, with regard to efficacy of HBV vaccines among PLWHA, the larger question - given the nation-wide rush for another vaccine (and boosters) - creating more robust standards of care among a population known to have immunological “memory-loss” due to the particular cells “attacked” by HIV seems to be in order. Part and parcel to that is tying this level of necessary education to funding and licensure could improve the quality of care PLWHA receive, especially those of low-income and otherwise marginalized identities.