Considerations for Hepatitis C Vaccine in HIV-HCV Co-Infected Populations
The interplay between groundbreaking research and its real-world application can shape the trajectory of entire communities. Once of the most evident place we see this is in the realm of HIV-HCV co-infection. As we stand on the precipice of breakthroughs in Hepatitis C Virus (HCV) vaccine development, the unique challenges posed by HIV-HCV coinfection come into sharp focus, reminding us of the urgency and significance of our endeavors.
Understanding the Landscape of HIV-HCV Coinfection:
HIV and HCV coinfection represents both a medical challenge and a reflection of broader societal issues searching for policy solutions. These viruses mainly impact marginalized communities, highlighting deeper socio-economic disparities. The combination of HIV, which taxes the immune system, even when well-controlled, and HCV intensifies health risks, such as liver diseases, emphasizes the need for effective interventions like a preventive HCV vaccine. Beyond the medical perspective, societal barriers like stigma, payer barriers, and limited healthcare access further complicate the issue. Recent vaccination studies, including those for COVID-19 and Hepatitis B Virus (HBV) among people living with HIV (PLWH), underscore these challenges and the necessity for tailored strategies. To comprehensively address HIV-HCV co-infection, a holistic approach that considers both medical and societal aspects is essential.
Drawing Parallels: Vaccination Lessons for HIV Patients:
The vaccination experiences of PLWH, especially during the COVID-19 pandemic, highlight the need for tailored strategies. While HIV patients were prioritized due to potential severe COVID-19 risks, vaccine efficacy varied based on individual immune responses, suggesting the potential need for boosters. Similarly, the Hepatitis B vaccination journey revealed that many PLWH had suboptimal responses to the standard vaccine. However, alternative, additional, or re-administration dosing regimens emerged as a promising solution. As we approach HCV vaccine development for people with co-occurring conditions, these experiences and the data-driven developments originating from them provide invaluable insights to anticipate challenges and innovate solutions.
Special Considerations for Vulnerable Populations:
Equitable policy and programmatic design in public health ensures everyone has access to optimal healthcare, yet societal barriers often sideline certain groups. Incarcerated people face challenges like close-quartered living and limited healthcare access, amplifying the transmission of illnesses like HIV and HCV. Tailored strategies, informed by COVID-19 vaccination efforts in prisons, such as on-site clinics, can improve vaccine uptake. People experiencing homelessness, battling issues like unstable housing and societal stigma, benefit from strategies like mobile clinics and community collaborations, as seen with HBV vaccinations. Building community trust, especially for populations with historical mistrust, is vital. Addressing HIV-HCV coinfection requires an inclusive, trust-centric approach, ensuring no one is overlooked.
Parallels with Mpox Vaccine: Addressing Vulnerable Populations
The U.S. Mpox outbreak in 2022 highlighted health disparities, especially among people experiencing homelessness, LGBTQ+ persons, and people of color. Mpox's transmission and significant impact on gay, bi sexual, and same gender loving men (GBSGLM), including those living with HIV, mirrors challenges with HIV-HCV co-infection.
The outbreak revealed health inequity issues, such as stigma and misinformation, exacerbated by the disease's former name "monkeypox." The Centers for Disease Control and Prevention’s (CDC) Mpox Vaccine Equity Pilot Program and Chicago Health Department's community-centric strategies provided insights for HIV-HCV coinfection management. Key takeaways included:
Community Engagement: Engage with affected communities, fostering trust through tailored programs and partnerships. Ready availability and responsiveness were critical to earned trust among affected communities.
Combatting Stigma: Deliver clear messages to dispel myths, ensuring vaccine uptake.
Vaccine Accessibility: Emphasize genuine accessibility, especially for marginalized groups, inspired by the Mpox Vaccine Equity Pilot Program.
Addressing HIV-HCV Co-infection in Vulnerable Groups:
Equity is vital in managing HIV-HCV co-infection, with incarcerated persons and populations experiencing homelessness and housing instability demanding special focus.
Incarcerated Populations: Prisons, due to their close confines and shared activities, are hotspots for disease transmission. While confinement offers some healthcare delivery opportunities, many lack comprehensive or personalized care, and most-notably, provide a microcosm of healthcare failures affecting surrounding communities. Identifying cost-effective program designs which address these disparate would prove beneficial for communities writ-large. Similarly, ensuring post-release care continuity is essential.
Homeless Populations: The transient nature of homelessness poses healthcare consistency challenges. Drawing from smallpox vaccine strategies, mobile clinics and community partnerships are effective. Building trust through tailored campaigns and community collaborations is crucial.
General Considerations: Skilled staff, robust data management, and inter-agency collaborations are essential for effective vaccination campaigns. Sufficient appropriations are required in order to build and maintain the missions of public health departments.
By addressing these populations' unique challenges, we can create an inclusive HIV-HCV coinfection strategy.
Future Medical Considerations:
The evolving nature of medical science presents new challenges and questions. The relationship between HIV and HCV may necessitate a tailored vaccine approach. Given experiences with COVID-19 and HBV vaccinations, how can we optimize the HCV vaccine for PLWH? Are there specific strategies to enhance its efficacy?
Public trust in health institutions remains fragile and highly politcized. How can we effectively communicate an HCV vaccine's importance and safety? How can we rebuild community trust?
Globally, ensuring the HCV vaccine's equitable access, especially in vulnerable populations with significant HIV-HCV co-infection risk, is a challenge. Can we learn from other vaccine distribution programs to strategize for HCV?
Urgent Considerations for HIV-HCV Coinfection's Future:
As we navigate the complexities of HIV-HCV coinfection, several pivotal questions arise, guiding researchers, policymakers, and healthcare professionals:
Vaccine Efficacy: Given varied vaccine responses in HIV patients, such as with COVID-19 and HBV, how can we optimize the HCV vaccine's effectiveness?
Access and Trust: How can we promote equal access, especially for vulnerable groups, and rebuild public trust?
Global Collaboration: How can we ensure global HCV vaccine access and which partnerships are essential?
Learning from History: Using insights from the U.S. Mpox outbreak, how can we better anticipate and manage health crises?
Policy Evolution: How can we swiftly incorporate evidence-based discoveries into health policies?
Actionable Recommendations for HIV-HCV Management:
To effectively combat HIV-HCV coinfection, we should consider:
Vaccination Strategies: Given varied responses among PLWH, explore frequent dosing, boosters, or double-dosing for the HCV vaccine, as seen with HBV and COVID-19.
Monitoring: Implement regular health assessments post-vaccination and periodic antibody and viral load tests.
Policy and Awareness: Prioritize coinfected individuals in vaccine rollouts, ensure accessibility, and launch awareness campaigns.
Collaborative Efforts: Foster interdisciplinary and global collaborations to holistically address HIV-HCV coinfection.
Addressing Current Deficiencies in Access: Despite curative therapies for HCV being readily accessible for more than decade, HCV remains a pressing public health concern in the United States. Effective vaccine distribution will hinge on addressing the challenges identified by these findings.
By strategically planning with these considerations in mind, we can create a comprehensive plan, prioritizing the well-being of those impacted by HIV-HCV co-infection.
Streamlining Vaccine Delivery and Building Trust in Healthcare
Efficient Vaccine Delivery: Successfully delivering vaccines for HIV-HCV co-infection requires more than just the vaccine. It's about a blend of skilled staff, efficient processes, and the right infrastructure:
Continuous Training: Ensure healthcare professionals are updated on the latest in vaccine administration for coinfections.
Resource Allocation: Balance routine healthcare with specialized vaccine campaigns, especially in resource-limited settings.
Infrastructure Upgrades: Enhance facilities, considering temperature-controlled storage and patient comfort, especially in remote areas.
Addressing Staffing Issues: Bridge the gap in healthcare professional shortages to ensure comprehensive care.
Workflow Efficiency: Use technology and process improvements for a seamless patient experience.
Community Health Worker Integration: Utilize their insights and community rapport to enhance healthcare delivery.
Feedback-Driven Improvements: Create a feedback-rich environment for continuous workflow enhancements.
Rebuilding Trust in Public Health: Trust is the bedrock of public health success, especially in the context of HIV-HCV coinfection:
Recognize Historical Mistrust: Address and make amends for past skepticism, especially among marginalized groups.
Combat Misinformation: Proactively counter myths about vaccines and transmission in the digital age.
Cultural Outreach: Use tailored messages and collaborate with community leaders for effective health drives.
Prioritize Transparency: Regularly update and demystify vaccine processes to foster trust.
Empathetic Engagement: Address vaccine hesitancy with understanding and compassion.
Collaborative Efforts: Partner with trusted community figures to amplify public health messages.
Feedback and Accountability: Implement public feedback mechanisms and act on them to reinforce trust.
In addressing HIV-HCV co-infection, both operational efficiency and trust-building are paramount. Together, they form the pillars of a comprehensive approach to public health challenges.
Conclusion:
Exploring the complexities of HIV-HCV coinfection reveals the depth of challenges and potential of modern healthcare. Each revelation, whether from studies on COVID-19, HBV, or HCV, not only highlight the gaps in our current understanding but also illuminates potential pathways forward. These insights should serve as guiding lights, directing our strategic development and interventions in the context of HIV-HCV co-infection.
However, our journey through this complex landscape is not solely guided by scientific discoveries. Central to our mission is a profound commitment to humanity and equity. It's a pledge to ensure that every individual, regardless of their background or circumstances, receives optimal care. From vulnerable groups, such as people experiencing homelessness or incarcerated persons, informed by lessons from the U.S. Mpox outbreak, to those in remote areas with limited healthcare access, our overarching goal remains steadfast: no one should be left behind.
By fostering collaboration across sectors, continuously updating our knowledge, ensuring investment in public health, and placing community engagement and trust at the forefront of our efforts, we can carve out a promising path. A trajectory that not only addresses the immediate challenges of HIV-HCV coinfection but also sets the stage for a healthier, more inclusive future for all affected individuals.
Health Inequity: Barriers Caused by Abusive Payer Practices
On February 2, 2023, ProPublica, the publication with a mission to “expose abuses of power” and particularly known for their extraordinary thoroughness of investigation, published a piece exposing United Healthcare’s practices denying medically necessary care for one patient, Christopher McNaughton, who is diagnosed with ulcerative colitis. The barriers caused by abusive payer practices is nothing new to patients living with chronic health conditions, including HIV and viral hepatitis.
McNaughton’s disease state is particularly challenging and his treatment was costing United Healthcare about $2 million per year. McNaughton, after receiving repeated coverage denials of live-improving and life-saving medication from United Healthcare, many appeals, conflicting results from “third-party” medical reviewers, and an insistence from United Healthcare that McNaughton’s care was not “medically necessary”, McNaughton’s family sued. What that lawsuit uncovered was a trove of data, recordings, emails, reports, and more that showed distain for McNaughton’s family seeking the care he needs, a cover up of a review which properly identified the medical necessity for McNaughton’s treatment in alignment with his provider’s recommendations, and even more grossly abusive legal tricks to disrupt and complicate the lawsuit process.
McNaughton receives his insurance coverage through Penn State University, where he goes to school and his parents work. Amid all of the turmoil of navigating denials, McNaughton and his family had reached out to the sponsor of his health cover only to find an extraordinary lack of help. The curious detail there is the university’s “health insurance coordinator” turns out to be a full-time employee of United Healthcare, despite no disclosure of that fact on Penn State’s webpages and the coordinator being assigned both a Penn State email address and phone number. Arguably, as the sponsor of the plan, Penn State has a role to play here, too, much like large employers and even the government in public payer programs.
Similarly, the New York Times covered the issue of payers refusing to cover the cost of high-cost, life-saving care, especially when that care includes newer medications. All the advancements in the world can’t change the course of a person’s life, if they can’t afford those advancements or the cost of those advancements might bankrupt a patient. While some public payer programs help to protect patients from these burdens, with complex regulatory requirements, even those are often farmed out to the same private payer entities responsible for McNaughton’s experiences, or those described by the numerous patients included in New York Times’ piece. For Medicaid, these entities are called managed care organizations (MCOs) and in Medicare they can been under the Medicare Advantage program. For many patients in private plans, formulary restrictions are quite common. This is still also true in Medicaid and Medicare Advantage plans, in which a patient and/or their provider has to chase after a series of costly administrative barriers in order to get an exception, which may or may not be denied at the end of the day. Indeed, MCOs and private payers have a history of refusing to add new medications to formularies, arguing “cost-effectiveness”, despite U.S. Food and Drug Administration (FDA) approvals and study designs showing greater efficacy, curative potential, or meeting a unique need. We won’t argue how placing greater value on “cost-savings” in the short-term in the face of more efficacious medication for patients is both morally and ethically abominable. Ultimately, these types of moves just shift cost-burdens to patients, namely in the expense of their health and even their lives. Similarly, newer medications may be placed on higher tiers, requiring higher co-pays or step-therapy (failing a different medication before having access to a newer one). Program designs with high deductibles and copay schemes (sometimes called co-insurance) are leaving more and more patients behind, as evidenced by work from Dr. Jalpa Doshi, a professor at the University of Pennsylvania, which showed rates of medication abandonment increase dramatically as co-pays rise.
Digging into the details of navigation, a Kaiser Family Foundation (KFF) analysis found Medicare Advantage plans forced patients through the process of securing permission from their payer before getting coverage of care – or as we like to call it, getting care – known as prior authorization. In theory, prior authorizations should align with a patient’s medical necessity as identified by their provider, encourage exploration of less costly treatment courses, and save both the plan and patients some money in the process. In practice, prior authorizations, particularly with regard to medication benefit coverage, is used to delay and deny care very similar to auto insurers looking to get out paying for a claim. KFF’s analysis found that in 2021, Medicare Advantage plans received 35 million prior authorization requests. Medicare Advantage only has 23 million enrollees in the contracts reviewed, thus averaging about 1.5 prior authorization per enrollee. The application of these requests is not uniform. Kaiser Permanente (no affiliation with KFF) had a prior authorization rate of 0.3% per enrollee and Anthem had a rate nearly time times higher at 2.9% per enrollee. To be fair, Kaiser Permanente’s network of providers work at entities Kaiser Permanente owns. The overall denial rate of prior authorizations across Medicare Advantage plans in 2021 was about 5% (or 2 million partial or full denials). Navigating denials, as shown in the ProPublica piece, is more than a little bit challenging when payers are bound and determined to limit their own costs. This is easily displayed in seeing the appeal rate for those 2 million denials of coverage was just 11% (or about 220,000). Of those appeals, a full 82% were overturned (or about 180,400). An Office of the Inspector General (OIG) report found more than 10% of a small sample of denials were “inappropriate” and would have generally been covered by traditional Medicare. It’s safe to say, at least 200,000 patients in Medicare Advantage plans alone have experienced delayed, medically necessary care…just because.
All of this incredibly noteworthy as the Biden Administration works to finalize an audit rule for Medicare Advantage plans which is expected to generate some potential $2 billion dollars returned to the government for overbilling, or claiming patients were sicker than they were. These payers are posed to argue simultaneously that patients don’t need medically necessary care despite being sicker than they actually are. It’s truly a remarkable moment to see predatory practices barrel their ways towards one another in the name of payer profits.
The New York Times piece notably reminds readers, when payers or even government officials argue for “cost savings”, they’re not necessarily talking about cost-savings for patients. The Inflation reduction Act, for example, requires manufacturers to refund the difference of medication’s cost rising higher than inflation to the government, but the government isn’t required to pass those savings make it back to patients. Again, to be fair, it might be particularly challenging for public program administrators to ensure those savings make it back to patients because those administrators are already saving plenty of money into their own pockets through bulk purchasing, already negotiating lower costs, and discount or rebate programs. On the double dipping end of the never-ending double dip, these same payers are fighting back against a series of programs run by medication manufacturers known patient assistance programs. The most common form of patient assistance programs is designed as co-pay assistance, helping patients cover their out-of-pocket costs of a particular medication. Right now, payers are using several dirty tricks to make sure they get the benefit of those billing dollars, rather than patients. The HIV + HepC Institute have joined other advocates in suing the Biden Administration over a rule issued under the previous administration to ensure those assistance programs designed to benefit patients and extend access to care are actually being used that way.
States are taking on efforts to combat abusive prior authorization practices introducing or having already passed “gold card” programs, in which providers with a history of successfully meeting prior authorization requirements in previous years may be exempt from needing to go through those processes for a certain period of time. The Biden Administration, for their part have also introduced a set of rules to streamline prior authorization processes, in an effort to expedite the experiences patients and providers have in navigating payment for care. And Congress is expected to see what was known as the Safe Step Act reintroduced this year, a bi-partisan and exceedingly popular piece of legislation aimed at curbing fail-first practices.
But patients, advocates, and policymakers should be careful about unintended consequences and keep an eye out for payers to adjust their practices. In gold-card programs, payers could just expand their prior authorization requirements, narrow formularies, and increase their rate of denials in order to disqualify providers who were previously qualified for the programs. We should also get creative in seeking to close some of these loopholes in the Affordable Care Act’s promise to bring a more equitable and easier to navigate health care landscape. Introducing parity between medical benefit profit caps (known as medical loss ratio) and pharmacy benefit profit caps might encourage (read: require) pharmacy benefit managers to share the savings, have discounts follow patients, expand formularies, and otherwise ensure their program dollars are being used to the maximum benefit of patients.
Jen’s Half Cents: Employers’ Role In Ending the HIV Epidemic, Addressing Health Equity, and Retaining Talent
For more than a year, employer voices have complained about an inability to fill open positions and retain talent. Often referred to in news media as “The Great Resignation”, it is a backdrop that also includes labor voices being dissatisfied with certain aspects of their work environment. A Pew Research survey asked those leaving their jobs for insights as to why and the findings centered around shifts as a result of realizing just how the workplace might look in a more modernized world. For two decades, employers of all stripes argued the necessity of being “in office” and the crisis phase of the COVID-19 pandemic proved just how easily modern technology would allow for greater flexibilities in work hours and work place. It also shook open the reality that many workplaces face the same problems experienced in society at large, with Pew’s findings highlighting a general complaint of “feeling disrespected” as a “major” reason for resignations in 35% of respondents. Other areas of employee complaint included a “lack of opportunities for advancement”, “child care”, and “benefits weren’t good” (arguably, child care could be considered a “benefit” offered by an employer, though very few do as United States labor law does not require such an offering). We’re gonna focus on this benefits piece because of a survey published by the Employee Benefit Research Institute earlier this month.
The survey, entitled “Workplace Wellness Programs and the LGBTQ Community”, showed where some of the contours of employee satisfaction can be defined. The survey found LGBTQ employees were generally less satisfied than their non-LGBTQ peers with their jobs across all income brackets, with an overall 44% of LGBTQ employees being satisfied with their jobs and 61% of non-LGBTQ employees being satisfied. Interestingly enough, the difference with satisfaction with benefits offerings (including health, paid leave, and retirement benefits) was less of a gap than overall job dissatisfaction between these cohorts (overall 34% of LGBTQ employees were satisfied with their employee benefits with 45% of non-LGBTQ employees). More dramatically, the survey found LGBTQ employees would prefer higher wages over enhanced benefits. The reason why might be found in the fact that LGBTQ employees were less likely than their non-LGBTQ peers to qualify for benefits, even if they were as likely or more likely to use them when those benefits were offered. Even when getting into the details of what benefits were offered, LGBTQ employees were about as knowledgeable as their non-LGBTQ peers). So what gives?
First, lets acknowledge that, according to this survey, queer folks are more likely to value “work-life balance” over their non-LGBTQ peers to an extraordinary degree (this area being the greatest difference between these cohorts in “What Workers Value”). LGBTQ employees were more likely to have financial struggles and concerns than their non-LGBTQ peers as well. This, combined with the unique health needs of LGBTQ people and the need to identify a queer-friendly provider and the ever-growing threat of violence under a more and more caustic political atmosphere leading to LGBTQ people valuing retirement benefits as high as their non-LGBTQ peers, helps explain why the dollars matter more than the paper of insurance coverage. This is a plight many queer people can personally identify with pin-point precision: “If my life expectancy doesn’t reach the age of retirement, why should I plan for it?” And that’s not too terribly different from “If my insurance isn’t going to cover competent care of my needs, why does it matter if it’s offered?” These things might work for a cisgender, heterosexual couple with 2.4 kids, but they’re not meant for us.
Let’s start with a concrete example. In 2021, the National Women’s Law Center launched a class action lawsuit against Aetna for its fertility benefit design because the design of the benefit offering and language of the policy required those seeking the benefit to document or attest to 12 month or more of “failed” attempts to conceive through penis-in-vagina sexual activity. That type of benefit necessarily excludes single people, same-sex couples, and couples where at least one partner is transgender.
Periodically over the last year (and honestly for years prior but with less of a focus on the role of employers), I’ve spent time discussing with partners how important it is for employers to consider their role in Ending the HIV Epidemic and addressing issues of Health Equity. With employer-sponsored health plans covering nearly 50% of the country’s population, according to Kaiser Family Foundation, these issues don’t come down to the mere fact of offering health benefits but the quality of those benefits as it relates to employee needs. Benefit designs which race to the bottom of a sponsor’s costs are more likely to have narrowed provider and pharmacy networks and restrictive formularies. And despite the fact that Bostock did not necessarily carve out a means for queer employees to argue benefit design might constitute a discriminatory compensation scheme, that is exactly what our community considers when evaluating their job satisfaction and what “competitive” compensation is supposed to look like. And that’s not unique to LGBTQ people, it’s true for employees of all marginalized status. When speaking with a Black, Women colleague recently she stated most directly “If my network doesn’t include a Black doctor for my kids to see, the plan doesn’t matter to me – I can’t count that as part of my compensation, regardless of how my employer looks at this.”
Adding another layer of consideration for employers, as sponsors with some of the greatest amount of leverage to influence the insurance marketplace, ensuring parity in pharmacy benefits with medical benefits is important. The details of those plans matter. To go beyond birth control as an easily relatable example, if an employee living with HIV doesn’t see the provider they’ve gone to for the last decade in-network or an expansive formulary lacking the burdens of prior authorizations for innovative therapies, they’re not gonna find as much value in that benefit. An employee that has to spend hours every six months navigating a prior authorization for their injectable preventative medication is gonna have less personal “bandwidth” to dedicate to work and find less value in that coverage. They might even decide to go out-of-pocket to over those costs and that translates into a meaningful reduction in wages, from the employee perspective. This also speaks directly to the role employers play in Ending the HIV Epidemic – broader coverage of antiretrovirals and infectious disease providers in-network with lower administrative burdens means employees have more meaningful access to care.
At the end of the day, every employee is a patient. We well know in patient advocacy that speaking to these intimate, personal health needs makes people feel cared about and appreciated. It’s why we do what we do in the first place. If employers want to address employee satisfaction, they could invite their employee resource groups for listening sessions on what adequate health benefit offerings look like and then demand those offerings from their contracted payers. It’s a simple series of actions where employers can come out on top in a variety of ways; addressing health disparities, hearing and meeting employee needs, contributing meaningfully to public health goals around HIV, and overall integrating their stated social values into tangible action.
Honestly, it’s all employees and communities really want from their employers - just a little bit of integrity. Evaluating and elevating health benefit offerings is an excellent place to start.
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!
2021: A Year in Reflection
The end of 2021 is upon us and that makes this a timely opportunity to reflect on the work by the Community Access National Network (CANN). During an exceedingly busy news cycle, we have published fifty blogs (including this one) on a variety of topics ranging from the latest on policy and regulatory issues, as well as some personal perspectives. Our HIV-HCV Coinfection Watch and our Annual Monitoring Report tracked Hepatitis C (HCV) therapies covered under the State AIDS Drug Assistance Programs, Medicaid, Veterans Administration, as well as patient access via patient assistance programs, and other relevant news items affecting our patient community. We also conducted a community roundtable seeking to highlight the impacts of Covid-19 on public health programs aimed at addressing HIV, HCV, and substance use disorder (SUD).
Notably, CANN published the following six-part series designed to educate patients on various aspects of the 340B Drug Discount Program:
· A Patient’s Guide to 340B: Why the Program Matters to You
· A Patient’s Guide to 340B: Why Transparency Matters to You
· A Patient’s Guide to 340B: Why Accountability Matters to You
· A Patient’s Guide to 340B: Why the Decline in Charity Care Matters to You
· A Patient’s Guide to 340B: Why the Middlemen Matters to You
· A Patient’s Guide to 340B: Why Program Reform Matters to You
With Congress engaged in high-conflict communication, to abuse a euphemism, navigating public policy developments and pertinent issues to patients can be challenging. CANN remains committed to being an essential source of two-way communication, information, and education wherein patients write the narrative driving policy reforms and priorities. In this, we are ever grateful to the patients and caretakers who have engaged with us at every turn. Your stories matter and you are not alone in your experiences.
The diverse partnerships behind this work are critical to our success and as we end the year, we want to offer our gratitude to these essential partnerships, ranging from other patient advocacy organizations, public health associations, and industry partners.
The issues affecting our public health space of patient advocacy have not relented this year. Covid-19 has only emphasized the need to ensure these programs are effective and efficient while also highlighting the existing weaknesses and strengths of these programs. To be clear, the structural and pervasive drivers of health disparities have been named; racism, sexism, classism, ableism, and all other biases which reflect a moral justification for out ethical failings must be addressed in tandem with policy changes and adequate public health program funding in order for us to succeed in these fights for patient lives. Health equity cannot be meaningfully segregated from the policy mechanisms in which these disparities have survived in the face of another pandemic – when our collective awareness of these inequities and leverage to progress on these issues should have been their strongest and yet were not.
It’s with these things in mind, we want to leave you with the enduring sentiment that next year offers us yet another opportunity to approaches these challenges with fresh eyes and fresh ideas. We are indeed stronger together and we sincerely look forward to working with you all to move closer in realizing a world of greater access to care, fewer and smaller health disparities, and, ultimately, a more fair and loving environment in which to live our lives and raise our families.
Author’s note: I often end certain professional meetings with telling my colleagues “Love ya’ll”. It’s a sentiment I mean to depths of my soul. I am fortunate to work with some of the most amazing people in the world – folks who share an unbridled commitment to improving the lives of those around them. It’s from this same space I wish to offer each of you reading this a moment to breathe and the same open heartedness. I want to leave you all with a short story that has shaped me in more ways than I can count, The Perfect Heart, and an encouragement to tell someone you love them as soon as you can. May this next year be gentler with us all and find us giving away more pieces of our hearts.
Highlights from the Viral Hepatitis National Strategic Plan
On January 7th, the Department of Health and Human Services announced publication of an updated plan to eliminate viral hepatitis in the United States. This “roadmap” coincides with HHS’s release of the first Sexual Transmitted Infections (STI) National Strategic Plan on December 18th, 2020, and an update to the HIV National Strategic Plan on January 15th, 2021.
Notably, these documents reference one another and specifically call for integrated efforts to tackle these syndemics across stakeholder groups, specifically including substance use-disorder as part of a “holistic” cohort. Additionally, each contains a near identical vision statement:
- The United States will be a place where new viral hepatitis infections are prevented, every person knows their status, and every person with viral hepatitis has high-quality health care and treatment and lives free from stigma and discrimination.
- The United States will be a place where new HIV infections are prevented, every person knows their status, and every person with HIV has high-quality care and treatment and lives free from stigma and discrimination.
- The United States will be a place where sexually transmitted infections are prevented and where every person has high-quality STI prevention, care, and treatment while living free from stigma and discrimination.
All three vision statements end with the following: This vision includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance.
Each plan addresses a limited but indefinite list of social determinants of health such as socio-economic burdens impeding access to care, including racism, intimate partner violence (IPV), and stigma and acknowledges discrimination against sexual and gender minorities (SGM). COVID-19 is mentioned repeatedly as underscoring and providing a highlight to the United States’ excessive health disparities, giving a nod to the unfortunate…”opportunity” the pandemic has provided health care advocates working with or as a part of these highly affected, highly marginalized communities. “The pandemic has exacerbated existing challenges in the nation’s public health care system, further exposing decades, if not centuries, of health inequities and its impact on social determinants of health.” Plans also acknowledge personnel and resources from programs addressing STIs, viral hepatitis, and HIV have been heavily redirected toward efforts to address COVID-19.
All plans call for better data sharing across providers and reporting agencies and an increase in surveillance activities, with an emphasis on local-level efforts to rely on local data, rather than national-level trends. Each plan also calls for expanded testing, interventions, linkage to care, provider and community education, and access to treatment, including incarcerated populations. The Viral Hepatitis National Strategic Plan (VHNSP) described “poor quality and a paucity of data” as clear impediment to meeting the goals of the plan. Sparring no stakeholder with access, the plan highlights a need for data sharing among correctional programs, health insurers, public and private health systems, mental and behavioral health, public health entities, and more.
The VHNSP also acknowledges opportunities to take lessons from the fight against HIV and the need to integrate “treatment as prevention” as a powerful tool in combating new HBV and HCV infections.
The Viral Hepatitis Strategy National Plans notes the following key indicators:
On track for 2020 targets:
HBV deaths
HCV deaths
HCV deaths among Black People
Trending in the right direction:
HBV vaccine birth dose (87% for people born between 2015-2016 by 13 months, WHO recommends 90% by 13 months)
HBV vaccine among health care personnel
HBV-related deaths among Black people
HBV-related deaths among people over the age of 45
Not on track:
New HBV infections
New HCV infections
New HBV infections among people 30-49 years of age
HBV-related deaths among Asian Americans and Pacific Islanders
New HCV infections among people of 20-39 years of age
New HCV infections among American Indians and Alaska Natives
The plan recognizes an 71% increase in HCV infections in reporting years 2014-2018 and points toward a strong data correlation between these new infections and the opioid epidemic, based on local area reporting data. Care related challenges include lack of personal status knowledge, perinatal transmission, and cost of curative treatment.
The plan states ideal engagement in various activities across an astoundingly broad scope of stakeholders including faith-based organizations for outreach and education, stigma and anti-bias training among all client-facing personnel, the opportunity to engage comprehensive syringe services programs as an outlet to provide HCV medication and more traditional services like referral for opioid-use disorder, educating providers and employers about federal protections for people with viral hepatitis, increasing awareness through school education programs – specifically culturally sensitive and age-appropriate sex education programs.
From issues of criminalization laws to lack of cohesive data collection, overall, the plan is very welcomed, comprehensive approach toward addressing viral hepatitis. With the STI and HIV plans mirroring very closely.
While the plans call stakeholders to address economic barriers to care and other social determinants of health, specifics are lacking. Stakeholders may wish to consider some of the priorities in the Biden administration’s public health approach including hiring from affected communities (including reducing or allowing alternative education requirements like live-experience or consideration of on-the-job training opportunities). These lofty goals may also require regulatory changes in order to implement and realize them fully (i.e. mechanisms incentivizing correctional facilities and the Veterans Administration to share data with local or state health departments and establish linkage to care programs). Private funders would be wise to take advantage of this opportunity and fund innovative, comprehensive pilot or demonstration projects. Advocates would be wise to leverage these documents when seeking state-level regulatory changes and advocating for federal funding and program design.