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.
2022: New Beginnings, New Changes
The Community Access National Network (CANN) ushers in a new beginning with the 2022 New Year, evidenced not only by the changing of the guard with our new President & CEO, but also with some important programmatic changes with our organization. We felt it important to share these changes with you.
Our weekly blog, previously branded as the HEAL Blog (Hepatitis Education, Advocacy & Leadership), is being repurposed to serve our broader mission “to define, promote, and improve access to healthcare services and supports for people living with HIV/AIDS and/or viral hepatitis through advocacy, education, and networking.” As such it is now the CANN Blog, and its areas of interest will focus on HIV/AIDS, viral hepatitis, substance use disorder, harm reduction, patient assistance programs (PAPs), Medicare, Medicaid, and the ongoing Covid-19 pandemic and its impact on public health. In keeping with the desire to monitor broader public health-related issues and appropriately engage stakeholders, our CANN Blog will be disseminated to a larger audience. Therefore, some of you may notice one more email in your inbox each Monday morning since we’re employing our general listserv to share the blog posts. It is our hope that you’ll deem the added email of value and thus maintain yourself on our listserv.
Additionally, our acclaimed HIV/HCV Co-Infection Watch will also be shared with our general listserv. But don’t worry, it only means one additional email each quarter! The HIV/HCV Co-Infection Watch offers a patient-centric informational portal serving three primary groups - patients, healthcare providers, and AIDS Service Organizations. The quarterly Watches are published in January, April, July, and October.
In 2022, our Groups will also be more active. Since 1996, our National ADAP Working Group (NAWG) has served as the cornerstone of CANN’s advocacy work on public policy. Whereas NAWG will continue to engage our HIV/AIDS stakeholders with monthly news updates, we will also convene periodic stakeholder meetings to discuss important issues facing the HIV community. Likewise, our Hepatitis Education, Advocacy & Leadership (HEAL) Group has served as an interactive national platform for the last decade on relevant issues facing people living with viral hepatitis. Periodic stakeholder meetings to discuss important issues facing the Hepatitis community will now complement the HEAL monthly newsletter. If you would like to join either the NAWG or HEAL listserv, then please do so using this link.
CANN will also launch its 340B Action Center this year. It is designed to provide patients with content-drive educational resources about the 340B Drug Discount Program and why the program matters to you. The importance of the 340B Program cannot be under-stated, and CANN remains committed to taking a balanced “money follows the patient” approach on the issues facing the program and advocating for needed reforms.
Finally, like most advocacy organizations, CANN is constantly evaluating whether it is safe (or not) to host in-person stakeholder meetings. Covid-19 has changed the advocacy landscape. Over the last two years our two signature meetings (Community Roundtable and Annual National Monitoring Report on HIV/HCV Co-Infection) have been hosted virtually, rather than in-person. CANN is taking a “wait and see” approach on how best to proceed in 2022 with these events. We will keep you apprised of our decision.
As we close the door on 2021 and open it for 2022, CANN looks forward to working with all of its community partners, industry partners, and you!
Veterans Linkage to Care: Perspectives on HIV, Viral Hepatitis, Opioids & Mental Health
Approximately 8 percent of the U.S. population are Veterans, numbering over 18 million Americans with most of them being males and older than nonveterans. But those demographics will change in the coming years, with significant increases in ranks among women and minorities. As a society, we tend to view these men and women formerly in uniform as larger than life figures capable of overcoming almost any odds. The reality, however, is there are numerous ongoing public health challenges faced by Veterans in this country once discharged from the military – among them HIV, Hepatitis C, opioid dependence, and mental health conditions. As a society, don’t we owe it to them to provide the most timely, appropriate linkages to care and treatment?
In 2019, there were 31,000 Veterans living with HIV seeking care within the Veterans Affairs (VA) healthcare system. Additionally, 3.4 million Veterans were eligible for HIV screening. Navigating the VA is challenging enough for our Veterans, but imagine doing so after first being diagnosed with a lifelong, chronic illness like HIV/AIDS? Although no longer a death sentence, Veterans need to learn how to steer living with HIV in what seems like a battlefield of complex bureaucratic systems, simply to start their care and treatment. For Veterans, staying connected to appropriate levels of care continues to be vital for many reasons.
For example, pulmonary hypertension – a blood pressure condition that affects the lungs and heart – is higher among Veterans living with HIV than in veterans who don’t have an HIV-positive diagnosis. What adds an extra level of concern is that Veterans with a CD4 count below 200 are also at higher risk of pulmonary hypertension, including Veterans who have viral loads higher than 500 copies per mL. Pulmonary hypertension within itself is a rare condition but that is exactly the reason why Veterans needs to remain linked to their healthcare providers. Some healthcare providers may not be actively probing for rare conditions like pulmonary hypertension and thus the condition and its possible progression will go largely undiagnosed. This further places into perspective the wide net needed in appropriate, timely HIV care and treatment that goes beyond taking antiretroviral (ARV) medication to achieve viral suppression.
Advances in HIV medicine – namely the introduction of the highly active antiretroviral treatment in 1996 – changed how people can live their lives after an HIV-diagnosis. Whereas people living with HIV who are virally suppressed have the same life expectancy as their non-positive counterparts, they’re also prone to age-related conditions and other co-morbidities, such as the previously discussed pulmonary hypertension. What this also means is that living longer, fuller lives also opens-up the door to emotional distresses.
Newly enlisted service members cycle through intense emotions when shifting from civilian life to the demands of military culture. Post discharge, Veterans can find themselves yet again cycling through acute reactions as they struggle to respond back into the reintegration of the everyday family and civilian life. As a result, studies have shown that incidences of ischemic stroke, the most common type, is more prevalent in Veterans who are HIV-positive dually diagnosed with depression in comparison to Veterans who don’t have a positive diagnosis without depression. This is significant because a common psychological effect of depression is isolation. Without proper linkages to care, so many human pathways of connectivity can begin to become severed. Positive behaviors and patterns begin to change, and this is a dangerous mental state to be in not only as a Veteran struggling with civilian life, but also maintaining the healthy and consistent level of care and treatment that is needed for Veterans living with HIV. It opens the door to poor medication adherence, decreased social networks, and increased likelihood of substance use disorder. These landmines are crucial markers to ensure Veterans living with HIV are kept engaged in their treatment plans. Likewise, all clinicians need to do the same by remembering to evolve with their clients to continue providing them with the services that they need and deserve.
Another silent threat facing both Veterans and nonveterans alike is Hepatitis C (HCV). The Centers for Disease Control & Prevention (CDC) estimates there are nearly 2.4 Americans living with HCV. It continues to remain a public threat to the general population, but it particularly relevant to address how the silent epidemic is impacting Veterans.
If left untreated, HCV can be fatal because it can lead to cirrhosis of the liver. Veterans experience chronic HCV at three times the rate of the general population, with 174,000 Veterans in active care within the VA system. So, what factors need to be considered by Veterans seeking testing and treatment options for HCV? After all, modern medicine continuously changes the landscape of the available medical treatment options, and the constant reevaluation can be overwhelming. Fortunately, newer HCV therapies have made it a little easier. A qualitative analysis of 29 Veterans who were looking into HCV treatment, 35 total factors were of interest were identified. Of this set of 35 attributes, the top reported were treatment efficacy, physical side effects, new antiviral drugs in the pipeline, liver condition, and psychological side effects.
While the report’s findings aren’t necessarily surprising, how they structured their analysis is important. The Veterans in this study were placed in one of three categories that identified their personal stage of change – which were contemplating treatment, recently declined treatment, and recently initiated treatment. Successful linkages to care involve acknowledging where clients are in the process because it helps to identify and structure a patient centered treatment plan. What is important to remember is that each stage of change is shaped by the personal lived experiences clients are currently experiencing. Some of these subfactors are important social systems that they interchangeably occupy like family, friends, work, religion, and perhaps other various community engagements. All of which can greatly affect the decision-making process when considering treatment. Clinicians across the board need to have a clear picture as to what their client’s value and integrate those value systems into the appropriate levels of care to maximize the effectiveness of their treatment.
This same study uncovered another point of interest that is worth mentioning. When it came to gender, 50% of women compared to 14% of men, reported having concerns with social attributes like stress on partnerships and stigma associated with a disease. Additionally, women also reported concerns about maintaining their privacy within the systems that they occupy. In some ways these results are not surprising given the long history of women being undervalued and overexposed within society. That said, what this does highlight is how the concept and execution of healthcare needs the integration of a vast interpersonal team across a diverse and all-encompassing platform that has the capability to target these pockets of influence.
Healthcare disparities, unfortunately, exist across a wide spectrum within our medical framework and the VA isn’t immune from it. For minority Veterans with hepatitis C, seeking treatment are faced with unique barriers. For example, an HCV-diagnosis is four times more likely among minority Veterans compared to the general population. The VA’s Office of Health Equity (OHE) has done some great work in eliminating health disparities among minority Veterans with HCV, including testing. Testing is made available to all Veterans who are enrolled in the VA; they have treated more than 123,000 Veterans, and successfully cured more than 105,000 Veterans. The VA’s vigorous approach to its mission has been met with great results as race and ethnicity proportions are being treated equally with no population higher than the other. Effective strategies like video telehealth, the use of nonphysician providers, and electronic data tools for timely patient tracking and outreach have allowed the VA to expand their services to better address gaps in care. Work like this is needed across VA systems and local communities to minimize the gaps that are all too often seen in minority groups especially when there are 50,000 Veterans who are undiagnosed for HCV.
Any discussion about linkages to care needs to address the risk association between Hepatitis C and opioids. Since 2010, there have been correlating spikes in both. According to the CDC, HCV cases have nearly tripled between 2010-2015, and during this time the growing use of opioids exploded thanks to OxyContin, Vicodin, morphine, and fentanyl.
Like the general population, substance use disorder can be an inherited experience for Veterans, sometimes exacerbated by the effects of military culture. As a result, 1.3 million Veterans experience levels of substance use disorder. A study by the VA Health System in 2011 indicated that Veterans, when compared to the general population, are twice as likely to experience death from an opioid overdose incident. The biggest leading factor in this is prescription opioid medication and it continues to increase. In 2005, 4 percent of service members reported misusing their prescription medication. Three years later, 11 percent of service members reported the same misuse. The challenge here is that military culture demands a high level of sacrifice, which often comes with potential risk factors like bodily injuries and exposure to traumatic events. Both can be a slippery slope. Physical injury begins to be a major factor almost immediately after enlisting. Service members are pushed daily to exercise and ushered through a series of combat drills that will no doubt include heavy equipment. The body has a great ability to adapt and strengthen itself but like anything else, it has its limits. If this sets the stage for a revolving door of service members in physical pain, the natural course of action would be to provide medication to offset these symptoms. And just like that, accessibility without effective evaluations become the gateway to opioid substance use.
In the same fashion, traumatic events can leave service members feeling disconnected from where they’d like to be both emotionally and physically. In military culture, perception of strength is reality and as such, seeking services for mental health is often challenging for servicemembers as they don’t want to appear weak, so they suffer in silence. But that is exactly the reason why work is needed to change this outcome. Military culture to a very large degree is unwavering. It needs to build soldiers and do that; it needs to condition enlistees. However, it would be beneficial if clinicians and doctors within military culture to incorporate better systems of evaluation when it comes to pain management. This would also need to extend into the various VA systems that service members have access to. Relationships and bonds are obviously built within military culture and their importance may be of great benefit when combating the negative effects of stigma associated with mental health trauma. Community programs can be fostered and guided by various ranking officers to establish a sub community where conversations of real-life experiences demonstrate that a soldier of any rank can be supported by the comrades and communities that they protect.
But accessibility is a two-way street. Clients should have the ability to gain access to healthcare to receive treatment for various medical concerns. Clinicians or outreach programs should be able to have access to community members that need a particular public health service. Syringe services programs (SSP) introduced in the 1980s, have been adopted by the VA system to reduce the harm for Veterans who inject drugs . Veterans who utilize SSP’s can receive substance use and mental health services with the VA including additional services through an SSP program like vaccinations and naloxone, which helps to prevent an accidental overdose. Veterans benefit from community-based programs like this even with the controversies that the program may still carry since its inception. This program has been proven effective in reducing transmission of disease like HIV and Hepatitis C. While this program isn’t stopping the use intravenous drug use, it does open the door for Veterans who may be in a place mentally to accept help. Programs like this are a great hub to access community members and have conversations about recovery services. Like most things in life, addiction is complex involving a multitude of factors that contribute to the addictive behavior. Drugs are the symptom, but the person is the real key to the solution within the equation. Lived experiences matter when looking at public health issues across the board. How people experience live greatly shapes how they decide to show up for it, especially in challenging times. If there are 343,000 Veterans who use illicit drugs, then effective and targeted programs need to be in place not only at VA systems but also in their surrounding communities. One of the great aspects of SSP programs is that it targets Veterans by how they are currently living with a substance use disorder, and while strengthening community engagement through public service.
Military culture and trauma are often associated with one another, but it isn’t always linked to deployment. That said, combat-related post-traumatic stress disorder (PTSD) is quite prevalent among active-duty service members, as well as Veterans. For service members nearing active-duty discharge, a diagnosis of PTSD may change the status of their discharge, greatly affecting the outcome of receiving services from the VA. The term “bad papers” is used within military culture to signify that a Veteran has been discharged unfavorably. A status discharge of other than-honorable is essentially the kiss of death because it means that a Veteran will not be able to access services through the VA. What is interesting about this status is that it is given for felonies, those absent without official leave (AWOL), desertion and Veterans with drug offenses. The issue then becomes the consequent behaviors of Veterans struggling with PTSD who turn to substance use to cope and who then also begin to have behavioral changes which affects level of performance on all fronts. Veterans carry an immense sense of pride for their service, and rightfully so. They have stepped in roles that most people don’t have the courage to do so. As an evolving clinician, seeing a Veteran struggle with PTSD due to the natural climate of what their duty demands of them, and then being shut out of benefits that are crucial to their mental health is just unacceptable. Discharge review boards really need to reconsider the criteria for evaluating Veterans who suffer from traumatic events. Not doing so sends a message that devalues the sacrifices that they have made which then perpetuates the stigma associated with their discharge status, but also reinforces the negative outlook of mental health within military culture. Veterans should not have to suffer in silence for enduring what was demanded of them and then be casted aside because their organization feels that their value has expired.
In 2016, over 1.5 million of the 5.5 million Veterans who entered the VA hospitals, had PTSD or other mental health diagnosis. That’s a staggering number especially when you consider the constant influx of Veterans who are returning home from deployment. Compared to the general population, suicide death rates are higher in Veterans, and furthermore female Veterans have a suicide rate of 35 per 100,000. Mental health services within the VA system have been on ongoing challenge as they try to meet the demand that Veterans need for crisis-intervention. As it is, mental health services are expensive for nonveterans, and even those who are insured may not have the adequate coverage to seek mental health services during a crisis episode. For Veterans returning home experiencing a mental health condition, this is disastrous as communities and VA systems both struggle to provide crisis stabilization and interventions. As a result, many Veterans experience depression on top of another mental health diagnosis like PTSD. Homelessness in Veterans is also increasing with more than 107,000 Veterans who are displaced. All of this is a perfect storm for a Veteran to feel like all hope is lost and consider suicide and reports reflect that with 21 Veterans, on average, dying of suicide every day. In society, there is a lot of talk about how all human beings are deserving of human equity. Human equity should include the ability to access mental health services (and healthcare as a whole), and the capability to navigate healthcare systems by having the support of organizations, communities, and effective public policy.
The military culture’s sphere of influence is completely different from civilian life. It is a complex system demanding everything military personnel can give, but it can often fall short when the time comes to giving back to Veterans. The sad truth is, Veterans often confront too many barriers when attempting to access appropriate timely care and treatment. It isn’t a secret that mental health disorders and other numerous challenges, such as substance use disorder, stem from military service-related experiences. Yet, systems in place for Veterans are inadequately structured to meet the numerous public health issues confronting Veterans and, subsequently, their families. Accessibility to healthcare services, including mental health, needs to encompass a wide net of effective policies and programs but also infused with the knowledge of how Veterans occupy the various systems that they live in and are affected by them. Too often in healthcare, clients are evaluated solely based off a diagnosis and without ever including who they are and their lived experiences. These are large, missed opportunities for clinicians to home in on invaluable information that can help formulate more effective treatment plans in conjunction with innovative and effective public policy. Hubs like VA systems are a great resource for Veterans, but we need to make sure the avenues of accessibility remain open for all Veterans that are eligible. It is very rare that a solution to a problem ever stands alone, and this perspective should continue to be a driver as community engagement and expansion in healthcare accessibility is needed. Veterans answered the call of duty without hesitation so now we must not drag our feet when Veterans need us the most in a war that poor public policy, lack of community programs and military culture has waged on them.
References:
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U.S Department of Veterans Affairs, (2020). Human Immunodeficiency Virus (HIV) - VA IS THE LARGEST SINGLE PROVIDER OF HIV CARE IN THE UNITED STATES. Fact sheet. Retrieved online at https://www.hiv.va.gov/pdf/HIV-program-factsheet.pdf
Wisely, Rene (2018). Why Are Hep C Infections Skyrocketing? Opioid Abuse to Blame. Michigan Medicine. Retrieved online at https://healthblog.uofmhealth.org/hep-c-infection-and-drug-abuse
Zuchowski, J. L., Hamilton, A. B., Pyne, J. M., Clark, J. A., Naik, A. D., Smith, D. L., & Kanwal, F. (2015). Qualitative analysis of patient-centered decision attributes associated with initiating hepatitis C treatment. BMC gastroenterology, 15(1), 1-10.
Rising Morbidity: Viral Hepatitis Co-Infection with HIV and Age All Associated with Increased Rates of Liver Cancer
In February, researchers associated with numerous universities across Canada and the United States published one of the most comprehensive data reviews thus far conducted on the incidence rates of the most common type of liver cancer among people living with HIV/AIDS (PLWHA) and PLWHA co-infected with viral hepatitis. The study reviewed data collected as part of the North American AIDS Cohort Collaboration on Research and Design (NA-ACCORD), conducted between 1996 and 2015, with clinical data from 109,283 participants. Conclusions from the study were fairly straight-forward: the combination of HIV status (mono-infection), co-infection with viral hepatitis (HBV and/or HCV) and age all correlated with an increased chance of developing liver cancer (hepatocellular carcinoma [HCC]). The hope of researchers, as evidenced in the study’s introduction was to “inform expectations for other regions with a substantial burden of HIV and HBV-HCV coinfection but with delayed cART [combination antiretroviral therapy] scale-up and limited access to viral hepatitis treatment”.
While most research papers wait to include study limitations at the end, I prefer to open with them as prefacing allows for contextualizing data. The first and primary limitation on the review is clinical information reviewed was necessarily from those people linked to care and correlations provided by the data in the study cannot be applied to the diagnosed-but-not-in-care or undiagnosed population. Second, researchers note, information on relevant, individual health factors were missing from significant portions of participants data (example: smoking and drinking habits, natural clearance of HCV, fibrosis score, and HIV exposure risk). Additionally, data collection was not uniform across all participating entities at the time of linkage to care, though a quality analysis was used to help even things out and ensure the integrity of data comparisons. This lack of uniform protocol also included certain sites not administering or participants not receiving HCV or HBV screening. The last, though likely most significant limitation of the study is the data were collected prior to the advent of curative direct acting agents (DAAs) for HCV, and conclusions cannot be made on the potential positive impacts of readily available DAAs.
A limitation not mentioned and data unassessed is any reference between older ART regimens and newer ones, in which toxicity and tolerability is commonly known to be considerably improved with newer regimens. Liver health monitoring is fairly standard, among other relevant patient labs, for PLWHA because of a relationship between ART and liver health. While it’s understandable researchers who generally enjoy significant funding from manufacturers may wish to avoid broaching this topic, not mentioning the issue, even to say “we can’t make any conclusions on cART tolerability and toxicity as an indicator for adherence or risk of developing HCC” misses an incredibly important elephant in the room for researchers, providers, and patients alike.
Instead, researchers chose to focus on cART “eras” (1996-2000 [A], 2001-2005[B], and 2006-2015[C]), in which there’s a positive correlation between age and era; or those aging with HIV were more likely to be diagnosed with HCC. Highest rates of HCC diagnosis by cART area are as follows: A – between 50 and 60 years-old (HBV co-infection with HIV), B – lower end 70-80 (HCV co-infection with HIV), and C – upper end 70-80 (HCV and HBV co-infection with HIV). This data is particularly valuable on its own, however, as the associated risk cohort shift appears to be very closely related to age (ie. those in the upper end of the C “era” are also those to first receive effective cART and the 20-year age gap between the C and A cART eras).
Ultimately, PLWHA were more than 3 times as likely as the general population to develop HCC and more than 20 times more likely to develop HCC if co-infected with viral hepatitis. HCC incidence among study participants fell along rather predictable lines in terms of HIV related clinical monitoring metrics; those with higher viral loads and lower CD4 counts were more likely to develop HCC.
The study’s finding highlight the need for ensuring access to DAAs and HBV vaccines, ready ART uptake upon linkage to care, and strengthening the integrity of AIDS Drug Assistance Programs, Medicaid Programs, and care provided to incarcerated persons – specifically, ensuring the inclusion of coverage of DAAs in these.
Advocates, providers, and patients can review DAA coverage inclusion in ADAPs and Medicaid and harm reduction policies impacting HIV and HCV with Community Access National Network’s quarterly HIV-HCV Co-Infection Watch report.
Covid-19: How Far We’ve Come & How Far We Have to Go
Unraveling a tangle of yarn can be maddening. Pull here, threads get tighter. Pull there, you’ve created another knot. Now, imagine having to weave with the same tangle – “undo” a well-organized mess and make it something functional, beautiful even. The fragile public health system in United States during the Covid-19 pandemic is much like that tangled yarn.
This dual task is very much an oversimplified explanation of where the American health care landscape exists in this moment. Like most collective traumas, this stage isn’t the “undoing” stage, it’s the stop the damage stage. In writing the first blog of the year, tracking site Worldometers reported 20 million confirmed COVID-19 cases in the United states and about 345,000 COVID-19 deaths. As of the time of this writing, the same site is reporting more than 30 million confirmed COVID-19 cases in the US and about 550,000 COVID-19 deaths. Daily case counts continue to remain high at around 50 thousand confirmed cases a day and around 1,100 deaths per day on average. While the introduction of 3 vaccine products has brought hope and another tool to our COVID toolkit, and daily new cases and deaths are far below their height, the pandemic still rages on.
Which is…concerning for the entirety of the health care spectrum and especially so for those spaces that have been historically underserved or needing additional protection or funding. From the Centers for Disease Control report at the Conference on Retroviruses and Opportunistic Infections (CROI) the United States performed at least 700,000 fewer HIV screenings and 5,000 fewer new diagnoses in the first 6 months of the pandemic (compared to the same time in 2019) to the extraordinary implications of COVID among vulnerable populations to Senators Grassley and Klobuchar introducing legislation to allow drug importation (despite very clear warnings about why this is not a great idea) to the Biden Administration issuing a formal disapproval of Medicaid work requirements, to say information is coming at “break neck speed” may well be as much of an understatement as a tangled ball of yarn.
With an emerging “surveillance gap” for both HIV and HCV, a startling HIV outbreak in West Virginia, overdoses increasing as a result of COVID, some of greatest tools gained in combating this pandemic, even those advocated for by the CDC, have already started to go away as states begin to “open up”. Indeed, Congress has already begun taking up old questions regarding telehealth restrictions and payment systems designs, this time with an eye for permanency.
While President Joseph R. Biden’s American Rescue Plan, recently passed by Congress and signed into law, offers a great deal of funding to address the needs of certain entities and programs to tackle COVID and even offers the most meaningful adjustments to the Affordable Care Act by expanding subsidies, the existing needs of the health care ecosystem have largely been neglected for the last year. Well…far longer…but I digress. Like any trauma, our need to strengthen patient protections and access, incentivize quality of care over quantity of services, and meaningfully reduce health disparities have been the ends of thread tightening around the knot of COVID. This pandemic did not create these disparities and the needs outlined above – but not having a plan for a pandemic, not addressing structural inequities and these burning policy needs with the urgency they so deserve absolutely made us more vulnerable to the most devastating impacts of any pandemic.
This isn’t “the end”, certainly. For advocates, this has always been our “normal”. We need those who have hung on our every word and insight through this emergency to stay at the table – we’re not done yet. Everything you were outraged by (and may still be enraged by thanks to vaccine access scarcity) remains and will continue to loom just over our shoulders, waiting to be exploited by an opportunistic disaster.
Indeed, the ghost of Scott County may well continue to haunt us for some time to come. This is, after all, a very big ball of very tangled yarn.
Painting Roses in the Desert: Despite Medicaid Expansion, Gaps Remain in Arizona
[Editor’s Note: This blog is, in part, a replication of a blog hosted by the ADAP Advocacy Association. Supplementary policy analysis on hepatitis treatments continues in this blog]
It shouldn’t be a surprise to anyone that many AIDS Drug Assistance Program advocates are in favor of Medicaid expansion. Indeed, as noted here, those same advocates view Medicaid expansion as an opportunity to strengthen health care access for the most vulnerable people living with HIV, meet needs unaddressed by a state’s ADAP coverage, and help ADAPs remain financially stable. For ambitious advocates (I’m talking about myself), when sufficient support exists to support those at or below the expanded Medicaid eligibility threshold of 138% of the federal poverty level, state ADAPs could consider expanding income eligibility above 400% of the federal poverty level. Indeed, Louisiana is one such state.
However, like all health care policy, the details matter.
In Arizona, the state’s Medicaid formulary is restrictive and slow to adapt to the needs of qualified people living with HIV, shifting financial pressure to the state’s ADAP and requiring the most impoverished clients to manage interacting programs in order to achieve coverage of certain medications. As the payer of last resort, when ADAP clients have other coverage (ie. Medicaid), conflicting payment processes are most often felt at the point of medication delivery or when a client gets told, inadvertently, their medication is not paid for. The process of correcting this mistake can take a matter of days or weeks, depending on a pharmacy’s experience with co-occurring payers.
In that time, patients can fall out of care, drastically reducing their likelihood of achieving an undetectable viral load.
For ADAP formulary advisory committees, for states that have them, the process of adding and adjusting formularies is sometimes relatively expedient. Relatively, in part, because those medical experts and community experts understand the need and nature for ensuring access to an expansive list of antiretroviral medications and modern advancements. Arizona’s Medicaid formulary lacks several single tablet regimens and, in the opinion of Glen Spencer, executive director of Aunt Rita’s Foundation, favor outdated “cocktails” (or multi-tablet regimens), complicating daily care for people living with HIV and accessing Medicaid, often subjecting clients to greater experiences of toxicity, and ultimately interjects an unnecessary interruption in both patient choice and provider care.
In aiming to impress the need of Arizona’s Medicaid formulary to expand in both supporting the sustainability of the state’s ADAP and meeting national initiatives Mr. Spencer stated, “It is critically important that Arizona’s Medicaid program include all single-tablet regimens on its formulary to offer patients the right medication for them, and to provide medical providers with the flexibility they need to prescribe the right medication for each patient.”
To this end, Aunt Rita’s advocacy efforts are also expanding with proposed legislation addressing the failure of Arizona’s Health Care Cost Containment System (AHCCCS) to take up the issue. According to Mr. Spencer, the bill is not likely to make it out of committee this year and lacks any great deal of interest for legislators battling over other budgetary and policy concerns and does not currently have a companion bill in the state Senate. On the other hand, the bill is sponsored in the Arizona House by a bipartisan coalition of 9 legislators.
“In order to end the HIV epidemic, both the patient and provider community will need all therapies available to them to support persons living with HIV, save lives, and get patients to an undetectable viral load.” Mr. Spencer added, “This policy not only promotes patients’ ability to lead a robust life, but also prevents new infections given the science behind U=U.”
The state’s ADAP and Medicaid formularies also present a similar situation for medications used to treat Hepatitis C, leaving a critical gap in available health care services and treatment for those at risk of contracting Hepatitis C. While the state’s ADAP coverage includes most direct acting agents, Arizona’s Medicaid formulary only covers Epclusa, Mavyret, Ribovirin, and Peginterferon.
Arizona’s situation offers a critical reminder that even with the value of Medicaid expansion, in order to achieve the greatest reach of ADAPs, tackle the absolutely critical inclusion of treatment and retention in prevention efforts, and to eliminate viral hepatitis, the details matter and advocates will need to adapt old fights to new environments.
Ongoing Viral Hepatitis Outbreaks: Systemic Interventions
Viral Hepatitis outbreaks, namely Hepatitis A and Hepatitis B, have been in the news quite a bit during the last year. Could COVID-19 have contributed to them?
Annual surveillance data for the state of Florida found the 2017 Hepatitis A outbreak has shifted location from primarily South Florida to the Pensacola area, in Escambia County. Florida isn’t alone with persistent Hepatitis A outbreaks. According to the CDC’s Hepatitis A outbreak dashboard, as of February 5, 2021, almost 40,000 cases of Hepatitis A have been confirmed related to the outbreak beginning in 2017, with more than 25 states still in an active outbreak status. Florida, Indiana, Kentucky, Ohio, Tennessee, and West Virginia top the list for the most cases reported since the outbreak began.
These outbreaks are primarily attributed to an increase in homeless populations and populations experiencing housing instability and lack of access to sanitary conditions. Hepatitis A is primarily transmitted in close-contact settings by way of ingesting blood or stool particles from a person carrying the disease. While the disease is not always deadly, it can be. Indeed, the 2017 multi-state outbreak has resulted in at least 354 deaths, according to the CDC.
Additionally, in late 2020, Vermont reported outbreaks of Hepatitis A and B, with Vermont Health Commissioner, Dr. Mark levin, said the state had been anticipating an eventual outbreak because of existing outbreaks in New Hampshire and Massachusetts. Hepatitis B, much like Hepatitis C, is often attributed to injection drug use, long-term health care settings, and contact with bodily fluids containing the virus, including blood and semen.
In response to these outbreaks, the CDC has encouraged states to engage in more active community education and vaccination programs. Both Hepatitis A and Hepatitis B are preventable and post-exposure vaccine administration may be appropriate in some situations. However, as the COVID-19 pandemic has reminded us, other interventions are necessary to address both risk factors to infectious diseases and reduce barriers to care. Addressing the nation’s housing and homelessness crisis could potentially provide one, extraordinarily significant structural intervention to address these and other public health crises.
President Joe Biden made campaign promises relating to need for more equitable housing policies and expanding affordable housing to address social justice needs as well as health-related needs and is already working to establish a fairer housing environment for the country. From extending the eviction moratorium to ensuring housing protections are extended to all Americans regardless of sexual identity or gender orientation (a reversal of the previous Administration’s policies), first steps are already being laid in order to meet well-known housing needs. And none too soon, as we don’t yet have a full picture of exactly how the COVID-19 caused economic recession will impact rates of homelessness, but one study issued a rather dire warning last month, saying this recession would likely cause double the rate of homelessness than the 2008 crisis.
From Hepatitis A and B to COVID-19 and the Opioid Crisis, housing has become (always was) a preeminent intervention that remains largely inadequately addressed. Federal funding and state programming must move to invest in housing as a prevention strategy in order to get ahead of these outbreaks and stop the chains of transmission. Housing is not just a human necessity; it is a public health necessity and must be embraced with the vigor the moment demands.
For the most up-to-date information from the National ADAP Working Group (NAWG), Hepatitis Advocacy, Education, and Leadership blog, and the quarterly HIV-HCV Co-infection Watch Report, sign up for our listserv here.