The Prescription for Curing Stigma
The prescription for curing HIV-related stigma begins with acknowledging a critical disconnect: over four decades into the HIV epidemic, medicine has advanced, yet societal attitudes remain anchored in the past. This enduring stigma casts a long shadow over those living with HIV, affecting mental health and quality of life, and fueling the virus's persistence. A recent UK survey highlights this stark reality, illustrating the urgent need to address stigma as a critical part of our HIV response.
As we aim for the 2030 goal of halting new HIV transmissions, it's clear that our approach must evolve. Curing stigma involves more than just medical breakthroughs; it requires a transformative shift in societal attitudes. This shift entails challenging deep-rooted misconceptions, prioritizing science over politics, and amplifying the voices of those living with HIV to educate our communities toward empathy and healing for all.
The Nature and Impact of HIV-Related Stigma
Manifestations in Healthcare Settings
HIV-related stigma in healthcare settings significantly undermines the quality of care and dignity of patients. This stigma manifests in various forms, from overt discrimination to subtle biases in patient-provider interactions. The American Medical Association's Journal of Ethics notes, "Despite legal protections...health care personnel have been known to stigmatize patients with HIV, in some cases refusing to treat them or providing substandard care." This highlights the ethical challenges and the need for empathy in healthcare.
The Centers for Disease Control and Prevention (CDC) advocates for a status-neutral approach in healthcare, focusing on high-quality, culturally sensitive care. This approach is vital in HIV care, where financial and insurance barriers often limit access to services. The CDC's framework aims to normalize HIV treatment and prevention, helping to reduce stigma.
Stigma in healthcare affects individuals' mental well-being and their willingness to seek care, adhere to treatment, and disclose their status. Furthermore, fear of judgment and discrimination can delay diagnosis and treatment, complicating HIV management.
Addressing healthcare providers' stigmatizing attitudes is a critical step in addressing stigma. It requires policy intervention, training, and sensitization to ensure all healthcare providers offer compassionate, stigma-free care to everyone, regardless of HIV status. This is essential for advancing public health and respecting the dignity of those affected by HIV.
Stigma in the Workplace and Society
HIV-related stigma transcends healthcare, significantly impacting workplaces and our broader society. In professional settings, people living with HIV face bias and misunderstanding. The International Labour Organization (ILO) reveals that workplace stigma threatens job security and mental well-being for people living with HIV.
Alarmingly, the ILO found that nearly 40% of respondents believe people living with HIV should not work in close contact with others. This misconception fosters a hostile work environment, leading to isolation and discrimination. Chidi King from the ILO states, “It is shocking that...myths and misconceptions are still so widespread... This survey is a wake-up call to reinvigorate HIV prevention and education programmes.”
Workplace stigma has extensive repercussions, violating workers' rights and hindering inclusive workplace efforts. The ILO advocates for dismantling stigma through education, policy reform, and promoting an empathetic work culture.
Beyond the workplace, societal stigma manifests in social ostracization and stereotypes, affecting daily life and influencing public opinion and policy. This stigma creates barriers to open HIV discussions, testing, and treatment.
Mental Health Implications
HIV-related stigma has a profound impact on the mental health of those living with the virus. Internalized stigma often leads to feelings of shame and guilt, heightening the risk of depression and anxiety. A significant study in AIDS Journal underscores the link between mental health disorders and HIV, revealing that in the U.S., HIV prevalence is notably higher among adults with serious mental illness (SMI), and among people living with HIV (PLWH), rates of major depression and generalized anxiety disorder are substantially higher than in the general population.
The study points out, "Mental health problems can increase the risk of HIV acquisition... Screening and treatment for mental health problems are essential to preventing vulnerable populations from acquiring HIV."
Stigma-induced isolation exacerbates mental health issues and impedes effective HIV management. Societal stigma, driven largely by misconceptions held over from the early days of the epidemic, inhibits open discussions about HIV, testing, and status disclosure, limiting access to tailored mental health resources.
Addressing these challenges requires integrating mental health services into HIV care, public education to counter stigma, and supportive environments in healthcare and communities. By taking a holistic approach to care and community, we can enhance the quality of life of people living with and affected by HIV and bolster the overall response to the epidemic.
The Role of Education in Shaping Attitudes
Comprehensive Sex Education
The fight against HIV-related stigma isn't confined to healthcare facilities or policy discussions; it begins in the classroom with comprehensive sex education, which is key to fostering the understanding and empathy required to eliminate stigma. Leading this educational charge are organizations like the Sexuality Information and Education Council of the United States (SIECUS) and Planned Parenthood Action, advocating for an educational approach that goes beyond traditional biology lessons.
Comprehensive sex education includes a wide range of topics such as sexual orientation, gender identity, relationships, consent, and crucially, HIV and other sexually transmitted infections (STIs). This type of education challenges myths and fears with factual, medically accurate information, fostering a more informed and empathetic understanding among young people.
However, the implementation of comprehensive sex education faces significant challenges, particularly due to the prevalence of abstinence-only programs. The Guttmacher Institute reports that the U.S. federal government spends $110 million annually on these programs, which are proven to be ineffective. Data shows that abstinence-only programs do not effectively prevent STIs or reduce sexual activity or pregnancy among teens. In fact, these programs often deny young people essential, life-saving information about their bodies, reproductive health, and sexuality. Consequently, fewer than half of high schools and only a fifth of middle schools in the U.S. teach the sexual health topics that the CDC considers essential for healthy young people.
The lack of comprehensive and accurate sex education perpetuates HIV stigma. Misconceptions about HIV transmission and the experiences of those living with the virus continue unchallenged, leading to fear and discrimination. This gap in knowledge isolates individuals living with HIV and hinders efforts to end the epidemic.
Navigating the Roadblocks to Inclusive Sex Education
Campaigns documented by the American Civil Liberties Union (ACLU) reveal a troubling trend towards abstinence-only education in public schools. This approach omits critically information about HIV, sexually transmitted infections (STIs), and broader sexual health topics. Notably, such curricula frequently overlook the experiences and needs of LGBTQ+ students, contributing to their marginalization and perpetuating HIV-related stigma.
The landscape of sex education across the United States is inconsistent, as highlighted by the National Conference of State Legislatures. While 19 states mandate sexuality education and 34 require HIV/AIDS instruction, the depth and breadth of these programs vary widely. In some regions, educators face restrictions on discussing topics like intercourse, contraception, and diverse sexual orientations, leaving a significant gap in students' sexual health knowledge.
Resistance from certain community groups and parents, often based on cultural or religious beliefs, adds another layer of complexity to the implementation of inclusive sex education. This opposition can sway local school boards and state legislatures, rendering the content and quality of sex education curricula largely ineffective and quite frankly, useless.
A critical shortfall in trained educators capable of delivering comprehensive, inclusive sex education exacerbates these challenges. Educators require proper training and resources to effectively navigate sensitive topics, including HIV. Without this support, the opportunity to dispel stigma and misinformation is lost.
Addressing these barriers necessitates a concerted effort to advocate for policies supporting comprehensive, inclusive, and medically accurate sex education. Engaging communities and parents in meaningful dialogue about the importance of such education is crucial for fostering a generation well-equipped to understand, empathize with, and support people living with HIV. This approach not only contributes to reducing HIV stigma but also aligns with broader public health goals.
Strategies for Dismantling Stigma
Policy and Community Initiatives
To dismantle the pervasive stigma surrounding HIV, a comprehensive strategy encompassing policy reform and community engagement is required. This approach should involve several key elements:
1. Policy Reform:
Comprehensive Sex Education: Policies should mandate comprehensive sex education in schools. This education must be medically accurate, culturally appropriate, and inclusive of all sexual orientations and gender identities.
Workplace Policies: Public and private sector policies should be implemented to protect people living with HIV from discrimination in the workplace. This includes creating supportive work environments and providing education about HIV to dispel myths and fears.
Healthcare Reforms: Healthcare policies should promote a status neutral approach, ensuring that people living with HIV receive stigma-free, high-quality care. Training healthcare providers to address their biases and provide empathetic care is crucial.
2. Community Engagement:
Public Awareness Campaigns: Utilizing platforms for public education to challenge misconceptions about HIV. Campaigns should focus on normalizing conversations about HIV, promoting understanding, and reducing fear.
Empowering Voices of People Living with HIV: Encouraging people living with HIV to share their stories and experiences can humanize the condition and challenge stigma. This aligns with the broader public health goals of organizations like the White House's National HIV/AIDS Strategy.
Community-Based Programs: Implementing community-based programs that focus on resilience and support for people living with HIV. These programs can provide a platform for education, advocacy, and peer support.
3. Legal Advocacy Against Discriminatory Laws
Addressing Criminalization: Modernizing laws that criminalize HIV exposure and transmission is vital. In the U.S., 32 states and two territories still have such laws, impacting 68% of people living with HIV. These laws often result in severe penalties, including extended prison terms and mandatory sex offender registration.
Reform and Impact: Efforts to reform these laws have seen progress, with several states repealing or modernizing HIV-specific laws and removing sex offender registration for revised law convictions. This legal advocacy is key to reducing stigma and supporting the rights of marginalized communities affected by HIV.
4. Global Perspective: Learning from International Success
Australia's Model: Australia's success in reducing HIV rates highlights the effectiveness of community-led initiatives and government collaboration. Their approach emphasizes peer support and progressive policies.
Stigma Reduction and Policy Change: Australia's commitment to reducing stigma and removing non-evidence-based laws criminalizing HIV transmission is a key part of their HIV prevention strategy. This approach is seen as a pathway to virtually eliminate HIV transmission by 2025.
Adopting Global Lessons: Embracing Australia's strategies, which combine policy reform, community engagement, and education, can guide other nations in transforming their HIV response from stigma to understanding and support.
In our journey to eradicate the shadows of HIV stigma, the path forward is clear and urgent. We stand at a pivotal moment where collective will and action can transform the landscape of HIV understanding and care. The Prescription for Curing Stigma is not just a metaphor—it's a call to action, a blueprint for change.
This change demands more than passive acknowledgment; it requires active engagement from every corner of society. Policymakers, healthcare providers, educators, business leaders, and community members must unite in this cause. We need policies that are inclusive and empathetic, healthcare that is stigma-free and compassionate, education that is comprehensive and enlightening, and community support that is unwavering and inclusive.
The voices of those living with HIV are not just stories; they are powerful testimonies that can shatter misconceptions and humanize the epidemic. Their experiences and insights are the most potent weapons in our arsenal against stigma. By amplifying these voices, we not only challenge outdated beliefs but also pave the way for a future where HIV is met with understanding, not fear; with support, not judgment.
As we look towards a future where HIV infections are prevented and every person with HIV lives a life free from stigma and discrimination, let's remember that the power to effect this change lies within each of us. It's time to move beyond awareness to action, beyond empathy to advocacy. Together, we can dismantle the barriers of stigma and fear, creating a world where every person affected by HIV can achieve their full potential for health and well-being.
The Prescription for Curing Stigma is more than a concept—it's a commitment to action, a promise for a better tomorrow. Let's embrace this challenge with determination and hope, knowing that our united efforts will lead us to a stigma-free future and ending the HIV epidemic once and for all.
Payer-Denied PrEP Fails Black Women and Marginalized Communities
In the battle against HIV, Pre-exposure Prophylaxis (PrEP) stands out as a transformative defense, significantly lowering infection risks for those most vulnerable. However, this critical protection remains alarmingly out of reach for many, especially Black women, due to insurance payers' denial of coverage. This systemic neglect transcends a mere healthcare gap; it's a stark reflection of the health disparities that exist in the United States’ healthcare construct.
Recent findings from IDWeek 2023, led by Li Tao, MD, PhD, confirm: obstacles to PrEP, particularly insurance denials, are directly linked to rising HIV diagnoses. The research, spanning January 2019 to February 2023, exposes a distressing reality where people with rejected PrEP claims encountered a 95% higher likelihood of new HIV diagnoses compared to recipients of the medication.
Moreover, delays in PrEP dispensing due to these denials correlated with approximately a 20% increased HIV contraction risk, emphasizing the urgency of immediate PrEP access. This isn't just a postponement; it's a life-threatening denial disproportionately affecting marginalized communities. The study highlights the necessity of prompt PrEP access to prevent new HIV infections, especially for those with rejected or abandoned claims.
Further analysis showed the lowest HIV diagnoses among cisgender men with dispensed claims, contrasting with the highest rates among transgender women and men with abandoned claims. Individuals with sexually transmitted infections in the rejected or abandoned groups also faced elevated HIV diagnosis rates.
These insights "emphasize the dire need to eliminate PrEP access barriers to halt HIV transmission," the researchers concluded.
Empowering People: The Psychological Benefits of PrEP
PrEP's impact extends beyond physical health, offering significant psychological relief. A recent study in Pharmacy Times illustrated that PrEP usage enhances the confidence of people in having safer sex, reducing HIV transmission anxiety. This security is crucial, especially for communities burdened by the constant dread of HIV. It represents not just a medical breakthrough but an empowerment tool, allowing people to regain control over their sexual health without looming HIV fears.
The study, conducted over 96 weeks, encompassed participants from various backgrounds, including men who have sex with men, transgender women, and cisgender women. It found that those on PrEP experienced less anxiety and more comfort during sexual activities, confident in their reduced HIV risk. This mental health benefit was consistent across all groups, highlighting PrEP's universal advantage beyond its physical protective effect.
"PrEP is more than a medical solution; it's a source of hope and assurance for those at elevated risk of HIV," the researchers noted. They suggested that this confidence might encourage adherence to the medication, strengthening prevention efforts.
However, when such empowering medical solutions are restricted, it doesn't just withhold a health service; it robs people of the mental peace that accompanies protection. This added psychological strain compounds the systemic injustices that marginalized communities endure, deepening disparities.
Global Perspectives on HIV Prevention
While the U.S. struggles with healthcare inequities, other countries are advancing in the HIV fight. For example, Australia has made significant strides by implementing a comprehensive HIV prevention approach. A pioneering study in The Lancet HIV demonstrated that integrating HIV treatment-as-prevention (TasP) with PrEP significantly reduced new HIV cases among gay, bisexual, and other men who have sex with men (GBM).
This extensive research in New South Wales and Victoria, Australia's most populous states, indicated a substantial rise in the population prevalence of viral suppression, accompanied by a corresponding decline in HIV incidence. The findings advocate for continuous investment in holistic HIV prevention strategies, suggesting that even slight enhancements in treatment and prevention access and adherence can drastically reduce new HIV cases.
However, Australia's success highlights a stark contrast in healthcare access and strategy in the U.S., especially impacting Black women and marginalized communities. The effectiveness of Australia's model stems from its inclusivity, guaranteeing extensive coverage and straightforward access to diagnostic and treatment services. This strategy encompasses not just broad PrEP availability but also a robust focus on TasP, ensuring a high treatment rate among those diagnosed with HIV, thereby lowering their viral load and transmission risk.
In contrast, the U.S. healthcare system's piecemeal strategy, characterized by payer denial for PrEP and other preventive measures, hampers these all-encompassing prevention methods. A Health Affairs study unveiled severe disparities in PrEP access and costs. In 2018, populations such as gay, bisexual, and same gender loving men (GBM), heterosexual women and men, and people who inject drugs encountered the most significant financial barriers. Insurance plays a crucial role in healthcare access, yet it's grossly inadequate regarding PrEP coverage. According to a 2022 study, numerous people encountered administrative barriers, including outright PrEP claim denials. These systemic shortcomings resulted in uncovered costs totaling an astonishing $102.4 million annually, a financial burden that individuals had to shoulder in 2018 alone.
These uncovered costs represent tangible hurdles, keeping potentially life-saving medication inaccessible for many at-risk individuals. The systemic obstacles that Black women face, as outlined in a KFF Health News report, emphasize the grave repercussions of this neglect. Economic challenges, healthcare exclusion, and biased marketing strategies limit PrEP access, leaving this community exposed and overlooked.
The current state demands an immediate reassessment of the U.S. HIV prevention strategy. It's not solely about PrEP accessibility; it's about a comprehensive approach that encompasses effective treatment for people living with HIV/AIDS (PLWHA). This strategy involves not just advocating for PrEP insurance coverage but also pushing for extensive healthcare reforms that guarantee all-encompassing coverage, including TasP methods.
Australia's success story provides clear evidence: with the proper dedication and strategic approach, we can substantially lower new HIV transmissions and work towards eradicating the HIV epidemic. However, this achievement requires a collective resolve to seek a healthcare system that serves everyone, not just a privileged minority.
It's time to hold payers and policymakers responsible, to shame them for their role in a system that continues racial and socioeconomic health disparities. Their inaction costs more than money; it costs lives. The U.S. must learn from global success stories and adopt an inclusive, comprehensive HIV prevention strategy that recognizes and caters to the unique needs of all communities, including Black women and other marginalized groups.
The Plight of Black Women
The situation becomes even more tragic when we consider Black women's struggles, especially those identifying as cisgender. Despite bearing a disproportionate burden of the HIV epidemic, Black women face numerous systemic barriers, from healthcare alienation and biased marketing to economic hardships, all limiting their PrEP access, as detailed in a KFF Health News report.
One personal story, that of Alexis Perkins as featured in a PBS NewsHour article, illustrates these challenges. Perkins, a 25-year-old nurse, encountered difficulties in obtaining PrEP despite her proactive health efforts. During her visit to her OB-GYN’s office, Perkins sought a prescription for PrEP but encountered several obstacles. The medical assistant who initially greeted her was not only unfamiliar with PrEP but was uncomfortable discussing it. Furthermore, her provider, though aware of PrEP, did not feel confident prescribing it due to a lack of sufficient knowledge about the medication. Her experience reflects a broader systemic problem where healthcare providers often lack PrEP knowledge or are reluctant to prescribe it, failing to meet Black women's health requirements. "It's not something that's being marketed to us," Perkins expressed in the article, indicating the absence of information directed at Black women.
These systemic barriers extend beyond mere neglect; they inflict direct harm. The research points out exclusionary marketing tactics, where PrEP promotional efforts frequently miss Black women, resulting in misunderstandings and unawareness about PrEP's relevance to their lives. This issue is aggravated by the gender disparity in FDA-approved PrEP medications' accessibility, with some treatments tested solely on male participants, restricting their use for women.
While manufacturers have begun addressing these disparities in marketing materials and clinical trial design for emerging therapies, stigma, radical judicial activism, and lack of strengthened or continued investment in public health all threaten our ability to meet our goals in Ending the HIV Epidemic.
Economic barriers, more common among Black communities, exacerbate these challenges, making consistent PrEP usage difficult. The necessity for regular medical appointments and HIV testing, along with high initiation costs and logistical hurdles, presents significant obstacles. As the PBS article elaborates, these economic and logistical barriers, particularly for those in poverty, are daunting and often insurmountable, barring Black women from the healthcare they deserve.
Addressing this healthcare inequality demands a comprehensive strategy. Economic and social empowerment, community-focused health campaigns, and policy and research initiatives are essential. Improving access to quality employment, healthcare, and stable housing can empower Black women to make informed health decisions. Customized health messaging and community dialogues, as well as policy and research efforts like those by the Centers for Disease Control and Prevention (CDC) and Gilead Sciences, are vital steps toward closing these gaps.
Alexis Perkins' story is not unique; it reflects the experiences of many individuals navigating a healthcare system that consistently fails them. As we face these harsh truths, we must acknowledge that this crisis goes beyond medicine; it's a moral issue. The barriers preventing access to PrEP for the most at-risk communities are not mere oversights; they are expressions of a societal hierarchy that deems certain lives less worthy.
This is more than a health disparity; it's a measure of our societal values. Will we maintain a system that actively undermines the health and futures of its most vulnerable? Or do we possess the collective bravery to demand change?
Change is achievable; it's been proven. Nations like Australia have adopted inclusive, forward-thinking, and compassionate public health policies, dramatically reducing HIV transmission and new diagnoses. Their methods show that with sufficient commitment, we can revolutionize healthcare delivery.
Reflecting on the stories of people like Alexis Perkins, let's contemplate our role in this narrative. Will we be passive observers in a system that discriminates and excludes, or will we become advocates, championing a future where healthcare is a right, not a privilege determined by socioeconomic status? The decision is ours, and it's one we must make now. Because with every moment we delay, every moment we choose inaction, we become silent co-conspirators in a system that tallies casualties instead of champions. In a country that boasts freedom and justice for all, how long will we allow these injustices to determine who gets to live, prosper, and contribute to our society?
Stigma: ‘The PrEP Penalty’
Since the beginning of the HIV Epidemic in the United States, advocates have worked to combat HIV-related stigma, and the populations most affected by it. That stigma, in no small part, originates from the messaging and official positions from the country’s foremost public health institutions and the government itself. Starting with the Reagan Administration’s labeling of affected communities under four specific categories, now referred to as the “4-H Club” (homosexuals, hemophiliacs, Haitians, and heroin users), some of those perpetuated by the Clinton and W. Bush Administrations, eased under the Obama Administration, and weaponized by the Trump Administration. Despite each of these past leadership regimes coordinating programing and funding to address the domestic HIV epidemic, they have all participated in certain furthering in stigma by policy, position, or language.
In response, advocates have largely targeted efforts to address social attitudes, with some effort to address policy issues which might define that stigma. One of the challenges of addressing stigma is appropriately defining the real-life experiences of people living with HIV and where, having been diagnosed with HIV, that stigma influences institutional assumptions and wherein power is exercised to affect a person’s life. Much advocacy combating stigma has been focused on modernizing state HIV criminalization laws. Advocates can and should be thinking more broadly, and specifically, around other areas in which people living with and at risk of acquiring HIV might be affected.
In February 2021, this blog published a piece defining that stigma in terms of family courts and child welfare systems and where advocates might find themselves involved in policy work to better protect families affected by HIV from adverse rulings or actions involved in custody and child welfare matters. This is but one example of where specific advocacy, leveraging existing protections, can and does dramatically affect the lives of people living with HIV for the better. Additional advocacy is necessary, including pressure on professional standards, continuing education, and licensing organizations to eliminate stigma and protect people living with HIV interacting with these systems. For example, what might it look like for the American Bar Association to promulgate ethics rules or specifically define that mentioning someone’s HIV status (or gender identity) in a child custody hearing is a breach of professional ethics worth sanctioning? In 1992, the Association of Family and Conciliation Courts warned of high-conflict parents trying to incite biases and assumptions of family court judges with making claims around their ex’s HIV status. These professional associations and those like them have incredible sway and should be realized as an opportunity for advocates to identify new allies.
One tool analyzing these concepts of stigma, and as a result identifying areas of opportunity for advocates to combat same, comes from Doron Dorfman, a law professor at Seton Hall University. In Dorfman’s paper, published in March 2021, The PrEP Penalty, the professor examines how stigma is institutionalized by various agents and agencies of the government as well as the attitudes (and stereotypes) behind the qualifiers of stigma. I got the chance to speak to Professor Dorfman on Thursday, March 30. It just so happened that morning, Judge Reed O’Connor issued a judgment in Braidwood v. Becerra which would gut the Affordable Care Act’s mandate for coverage of pre-exposure prophylaxis (PrEP) with no cost-sharing.
“If you look at the ruling itself, you can see clearly this isn’t about PrEP, per se, but about how O’Connor and the plaintiffs view PrEP as something that ‘encourages homosexuality’,” Professor Dorfman said, speaking to core of what drives stigmatization of PrEP. Recounting initial insurer refusal to cover PrEP and continued problems in ensuring payers are covering both the medication and related, required laboratory screenings for PrEP maintenance, Professor Dorfman argued these positions really center on a ”de-medicalization” of HIV prevention. This concept removes the nature of preventative tools as a medical necessity and conflates engaging protective measures with “enabling” “risk taking” or that patients are engaged in “risk compensation” – compensating behavior to mitigate negative health outcomes while still engaging in activities which are moralized as “undesirable”. Indeed, in his ruling, O’Connor ruled the Religious Freedom Restoration Act claims had standing and were legitimate because the plaintiffs argued providing insurance with PrEP coverage “facilitates and encourages homosexual behavior, intravenous drug use, and sexual activity outside of marriage between one man and one woman.” This argument failed to recognize that HIV can and does pose a risk between married, heterosexual, sero-discordant couples. O’Connor also flatly rejected that the government has a “substantial interest” in preventing new HIV transmissions – or the public health argument. The fact that the government has an interest in preventing new transmissions of an infectious disease of any kind is indisputable and this end of O’Connor’s judgment is likely the weakest of an already weak ruling.
Instead, Professor Dorfman says that patients utilizing PrEP should be appreciate for assessing a risk and working to mitigate the potential negative outcomes. Penalizing PrEP engagement due to these rather naked biases creates a “chilling effect”, discouraging people and whole communities from seeking out necessary medical care. Dorfman compared this to the anti-gay stigma around prostate and colon screenings, wherein heterosexual, cis gender men might avoid seeking out recommended screenings because “getting something put up my butt makes me gay”.
These stigmatizing attitudes and stereotyping are universal around “sexually charged preventative measures”; we see it when people are charged for solicitation as a prostitute because they carried condoms on them, around access to the morning after pill and abortion, and certainly we’ve seen these attitudes around the human papilloma virus vaccine. These attitudes are so pervasive that providers sometimes refuse to prescribe PrEP and, when they are, they may find themselves avoiding doing so for patients in their teens for fear of a parent acting out as a result.
While the Americans with Disability Act 9ADA) and related guidance and rulings have offered some protection for people living with HIV, those protections are not offered to people utilizing PrEP – but they could be, with some creative thinking, in part, because the ADA protects people from stereotypes related to an “assumed” disability. If a situation arose where PrEP use was specifically assumed to mean someone is likely to develop or already has an HIV diagnosis, the ADA protects patients from harmful stereotyping. But that would be extraordinarily specific. Instead of trying to make that stretch, Professor Dorfman thinks seeking out state or federal legislation which prohibits medical discrimination more broadly than disability status could be useful. Similarly, guidance and policies which apply a personalized assessment of risk, tied with scientifically accurate information may also be useful. For example, a personalized assessment in evaluating people for blood donation, rather than a categorical (though, now more limited) ban might create a sense of equity between potential donors and address some of the stigmatizing assumptions that come from the policy.
Professor Dorman has another, forthcoming paper, Penalizing Prevention, which includes case studies – one wherein a parent’s engagement with PrEP was one factor used against them in a child custody matter – that assesses how preventative care is adversely treated by various institutions.
Advocates should consider what it means to define “stigma” and evaluate what comes next. Such as, what are potential policy answers as well as identifying private, professional organizations with power to influence the persons exercising those biases as potential partners in addressing HIV stigma. Invested policymakers should consider a variety of ways, including legislation, regulatory guidance or rulemaking, and requirements attached to grants as a means of combating stigma and promoting a more robust public health landscape. Lastly, funders should consider what it means to have an active and effective strategy for addressing stigma beyond “education” - which of your grantees and partners are getting creative in changing our environment for good? More specifically defining stigma allows us to identify ways in which to address that stigma and make tangible improvements in people’s lives and we should not shy away from exploring these potentials.
Despite All Evidence in Support of Harm Reduction, Stigma Drives Public Attitudes
Earlier this year, a false claim spurred outrage from commentators and politicians regarding federal grant dollars for harm reduction programs across the country. Shortly after, in April 2022, the U.S. Department of Justice (DOJ) issued guidance on how the Americans with Disability Act (ADA) provides protections for people with opioid use disorder (OUD), which may also apply broadly to people with substance use disorder (SUD). From local and national advocates to actions from the Biden Administration, as a nation, the United States is facing the greatest change in drug policy since the Nixon Administration introduced a national policy officer (“drug czar”) on the issue. Forty years after Nancy Reagan’s “Just say no” campaign and the abject failure of the D.A.R.E. (drug abuse resistance education) program, the United States’ “War on Drugs” has only succeeded in criminalizing a health status with, up until relatively recent history, with broad bipartisan support. The effort to combat the stigma sewn into the fabric of our social attitudes towards drug use and misuse is coming to a fever pitch.
Scrolling through my own social media, I can across Representative Malinda Brumfield White’s post regarding a methadone clinic opening in Bogalusa – expressing “concern” for the location. The comments were rife with assumptions as to what the clinic might “mean” for the area and opposition to its location. The animus voiced is the exact type of animus an industrious litigator might cite to prove the attitudes DOJ cited as discriminatory and might spur actions which could violate the ADA. This clinic didn’t pop up out of nowhere, Louisiana’s legislature ordered a needs assessment on the impacts of the opioid crisis in 2018 after the Governor Bobby Jindal ushered in closing of most of the clinics in the state. Subsequently, the state’s health department identified a need to establish at least 10 new harm reduction service providers, focusing on addiction treatment centers (specifically, medication assisted treatment). A request for proposals (RFP) was issued in late 2021 and signed with Behavioral Health Group (BHG) shortly thereafter. But it’s just now that the local electeds are making noise about the clinic – as the operation is getting set to open.
Meanwhile, in California, Governor Gavin Newsom is rumored to be thinking about vetoing SB57, a piece of well-supported state legislation that would allow for pilot project locations for safe consumption sites. The project would be the largest yet seen, after New York allowed for a similar project last year, and is facing tough opposition even after the bill passed out of the state’s legislature, with a concerted campaign urging Governor Newsome to veto the bill. New York expanded their project this year thanks in large part due to the success of reversing hundreds of overdoses already.
Vermont’s Governor has already vetoed a similar bill. Though, that veto also axed additional funding for multiple modalities of harm reduction, including ones already existing in Vermont, Governor Phil Scott specifically cited the safe consumption sites projects as “counterintuitive” – a statement rooted in stigma (his assertation that data did not exist to support the project is false – see previous links on New York’s success). A bill in Kentucky to initiate a pilot project didn’t even get a committee hearing this year. And Rhode Island is finally finding a way to fund safe consumption sites – by using the state’s opioid settlement dollars. Rhode Island had already passed a law allowing study of safe consumptions sites, the legislation just did not include any funding to do so and those entities interested in opening sites were hard strapped to find enough private funding to open.
In other states, advocates are playing slower “games”, taking time to further educate their legislatures and communities. In North Carolina, experts took time to both debunk the claim the Biden Administration was pushing on smoking pipes but also how those same tools would be an improvement in harm reduction offerings already existing in the state. In Massachusetts, elected representatives are supportive of safe consumption sites but elected law enforcement isn’t. Those same elected law enforcement officials are peddling stigmatizing ideas with ominous sound bites like “let’s ask people in neighborhoods where they already exist and see if they feel it’s safer.” When there’s no one there to challenge these ideas, or journalists’ follow up questions aren’t answered, the dark clouds gather around pious suburbanites as if their own families aren’t one or two degrees of separation from experiencing the damaging impacts of an unabated overdose crisis.
Decades old attitudes which moralize a health condition as a personal failing and threat to our families hasn’t worked. Indeed, overdose deaths and non-fatal morbidities are on the rise…again. Despite having the tools, decades of behavioral intervention study, and a desperate need to address this issue, we keep seeing the same approached used over and over again – stigmatize, criminalize, and isolate. Our elected officials have an obligation to both educate themselves and advocate for more effective policy. The families affected by the opioid crisis, substance use disorder, Hepatitis C, and HIV are the voters and constituents these representatives are tasked to…represent. As advocates trudge on in sharing stories, we must leverage what we know to be true. This is indeed a moral fight – it is immoral and unethical to allow people to die with a callousness of disinterest, even triumph as if those deaths are somehow “deserved”. While our lawmakers are returning home as the federal legislative session comes to a brief break, they must also take this moment to lead their constituents in making the moral choice and support comprehensive harm reduction policies and programs.
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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