Ending the HIV Epidemic Off to a Middling Start

By: Marcus J. Hopkins, Founder & Executive Director, Appalachian Learning Initiative

The Health Resources and Services Administration (HRSA)’s HIV/AIDS Bureau (HAB) released its inaugural Ending the HIV Epidemic (EHE) triannual report—Ending the HIV Epidemic in the U.S. Initiative Data Report—in December 2021 (HRSA, 2021). The findings contained within present a limited, clouded, and admittedly complicated portrait of a program that has been beset by setbacks, complaints about the selection process, and a global pandemic.

What is EHE?

EHE was announced in 2019 by the Trump Administration as a plan to “…end the HIV epidemic in the United States by 2030. The plan “…leverages critical scientific advances in HIV prevention, diagnosis, treatment, and outbreak response by coordinating the highly successful programs, resources, and infrastructure of many HHS agencies and offices” (Office of Infectious Disease and HIV/AIDS Policy, 2021). To achieve this goal, those who worked to develop EHE as a strategy developed a four-pillar approach:

1. Diagnose – diagnose all people with HIV as early as possible
2. Treat – rapidly prescribe Antiretroviral Therapy (ART) to people living with HIV (PLWH) to reach sustained viral suppression.
3. Prevent – prevent new HIV infections from occurring by using proven interventions, including Pre-Exposure Prophylaxis (PrEP) and Syringe Services Programs (SSPs)
4. Respond – respond to potential HIV outbreaks to get needed prevention and treatment services to people who need them (Office of Infectious Disease and HIV/AIDS Policy)

Once these policy goals were developed, EHE went about selecting “priority jurisdictions”—48 counties, Washington, DC, San Juan, Puerto Rico, and seven states that have a substantial rural HIV burden (AL, AR, KY, MS, MO, OK, & SC) (Figure 1).

Figure 1 – Map of Ending the HIV Epidemic Phase 1 Jurisdictions

Note: Office of Infectious Disease and HIV/AIDS Policy, 2020

Phase I jurisdictions were selected based upon HIV reporting data from 2017, including incidence, prevalence, and racial and ethnic demographic makeup. Once those jurisdictions were chosen, the vast majority of federal HIV funding was redirected away from a national approach to confronting HIV and to these jurisdictions.

The key strategies for addressing HIV in these jurisdictions include the following:

• Implementing evidence-informed and emerging intervention strategies shown to increase linkage, engagement, and retention in care focused on those not yet diagnosed, those diagnosed but not in HIV care, and those who are in HIV care but not yet virally suppressed;
• Re-engaging people with HIV who were in care, but are no longer in ongoing care and are not virally suppressed.
• Providing technical assistance and systems coordination to support effective strategic plans and activities to successfully implement the new initiative; and
• Expanding workforce capacity through the efforts of the AIDS Education and Training Centers (AETCs).

The Findings of the Report

The data presented in the HRSA report cover March 2020 through December 2020, broken into two reporting periods—March 2020 through August 2020, and September 2020 through December 2020. This was selected because funding was awarded to Phase I jurisdictions in March 2020. It is noted that subsequent reports will represent a full calendar year. $63 million was released to the 47 HRSA HIV/AIDS Bureau (HAB), two technical assistance providers, and 11 Ryan White HIV/AIDS Program (RWHAP) AETCs. HRSA anticipated that the HAB EHE recipients would serve 18,000 new or re-engaged people with HIV during the initial year.

According to the HRSA report, HAB EHE-funded service providers served 11,139 new people and 8,282 re-engaged people, totaling 19,421 clients—meeting and exceeding the goal of 18,000 new or reengaged clients by 7.9%.

These data include all clients served by funded providers. When controlled for EHE initiative-specific services, 6,381 clients were served, of which 68.4% were new or re-engaged clients. In 2020, of the 45,880 total clients prescribed ART, just 21.5% were new or re-engaged in care and treatment (HRSA).

Limitations of the Data

First and foremost, it must be mentioned that the rollout of the EHE initiative was very heavily impacted by the onset of the COVID-19 pandemic. As the U.S. nears the end of two calendar years of pandemic-related service reductions, social distancing, remote services implementation, and temporary or permanent site closures. These conditions created a set of hurdles that required on-the-spot revisions and improvisations that potentially limited the ability of jurisdictions to plan and implement the programmatic offerings for which they were funded.

As to the report, itself, HRSA openly admits that these data are limited to just the EHE-funded jurisdictions and are not reflective of overall trends across the nation. Because these providers are already providing services, the data they provide includes all of their clients, not just those served using EHE funding. As such, the Triannual Module data cannot be used to estimate the specific costs associated with serving clients using 2020 EHE funding. 

Additionally, no demographic or other characteristic data are submitted, meaning that it will be difficult to try to determine how EHE is actually impacting PLWH at the demographic level (e.g., White, Black, Hispanic).

And, because the data are reported in aggregate, it is not possible to de-duplicate client counts, meaning that the report may overestimate the number of unique PLWH served.

Perhaps the most damning lack of evidence in this report is that none of these data are broken into funding jurisdictions. Essentially, there’s no way to see how each jurisdiction is performing. This means that it is entirely possible that these reports could potentially originate from just the metro regions that already see the bulk of new and re-entering PLWH. Without these detailed data breakdowns, we have no way to see whether or not jurisdictions are producing results.

Criticisms of the EHE Approach

One sentence that causes concern in the Comments section of the HRSA report is the following:

"Without this EHE initiative, new infections will continue and could increase, costing more lives and the U.S. government more than $200 billion in direct lifetime medical costs for HIV prevention and medication."

This statement is indicative of what many advocates feel to be the primary issue with EHE: its insistence that the EHE approach is the definitive approach to addressing HIV. To be fair, this type of hubris and “this is the only way” verbiage was a consistent feature of the Trump Administration: “Only I can fix America;” “Only this trade deal will fix our trade deficit.”

Since the launch of EHE, HIV advocates across the country have raised significant concerns about several aspects of the strategy:

• If the purpose of EHE is to increase testing and surveillance, why are the majority of resources going to jurisdictions that already received considerable federal HIV funding resources?
• If funding is released in phases, what happens to HIV funding for jurisdictions that are not included until later rounds?
• What measures are in place to determine if EHE funds are being properly and effectively used in the selected jurisdictions?
• Are new funding opportunities always going to be restricted to Phase I jurisdictions?
• Does the “Respond” pillar actually function?
• While data do show that HIV has disproportionately impacted minority communities, particularly Black and Hispanic communities, they also show that HIV disproportionately impacts people with lower incomes. With that in mind, why has “poverty” been eliminated as a criterion in favor of focusing almost entirely on racial and ethnic minority demographics?

In this author’s experience, whenever those responsible for putting together or running the EHE program are faced with these questions, they tend to fall back on their methodology, rather than addressing either the problems that exist with EHE or appropriately resourcing jurisdictions with emerging HIV outbreaks if they are not included.

The Failure of EHE—A Case Study

An excellent case study of this is the state of West Virginia. Since the beginning of the HIV epidemic in 1981, West Virginia has been considered a low-incidence state, averaging 77 new HIV diagnoses per year between 2013-2017. Beginning in 2018, West Virginia began experiencing a series of HIV outbreaks related to Injection Drug Use (IDU). By 2019, the number of new HIV diagnoses increased by 92% to 148 new diagnoses, of which 61.5% were directly related to IDU (Office of Epidemiology and Prevention Services, 2022).

By all accounts, West Virginia is the ideal jurisdiction for the EHE initiative. A primarily rural state, West Virginia has been the poster child for public health disasters: it has led the nation in drug overdose deaths, opioid addiction, Hepatitis A, B, and C diagnoses, and now has the highest rate of IDU-related HIV diagnoses in the United States. It also has virtually no statewide HIV testing and surveillance infrastructure. What complicates the situation is that West Virginia is one of the most chronically underfunded states. 

And yet, West Virginia was not chosen to be a Phase I jurisdiction. Because the data used were from 2017, when West Virginia was not yet experiencing an outbreak, the state was not considered. However, even by current standards for newer funding announcements, West Virginia meets neither the threshold for new diagnoses (200) nor the racial and ethnic minority demographics—minorities make up just 4% of West Virginia’s population— that these announcements require.

When it became clear that West Virginia was experiencing concurrent HIV outbreaks, a West Virginia public health advocacy organization, the Community Education Group (CEG), approached those in charge of EHE, Dr. Jonathan Mermin at the Centers for Disease Control and Prevention (CDC), Health and Human Services (HHS), and numerous other agencies to try to get resources for the state to address these outbreaks. What they discovered was that the problem was deemed not severe enough for intervention and that the “Respond” pillar of EHE applied only to current phase jurisdictions. Moreover, West Virginia was not expected to receive HIV funding from EHE until 2025, when Phase II funds will be released.

In the end, it took nearly three years of constant needling and finally national press attention to get the CDC to return to West Virginia. Even then, the solutions they recommended came with no funding attached and relied upon harm reduction responses, such as SSPs, that, thanks to a state statute passed in 2021, are under such intense scrutiny and regulations that a significant number of the health department-run SSPs are closing.

How to Address These Issues

West Virginia is just one example of how EHE fails to address the real-world needs of PLWH and the jurisdictions that serve them. One of the primary failings of EHE is that it directs funding to jurisdictions that have, over the course of the past forty years, received the bulk of federal and private HIV funding: Los Angeles, San Francisco, New York City, Atlanta, and other metropolitan areas—areas of the country where the majority of HIV infections have occurred over the past forty years.

This is not to say that PLWH in these areas are not deserving of funding and services; they absolutely are. However, the U.S. has spent countless millions in these areas building testing, treatment, and services infrastructures that, while not perfect, exist. The inclusion of the seven states with a rural HIV burden has always seemed a bit like an afterthought.

In response to this, supporters of EHE consistently argue, “We’re going where the data lead us.” This argument is hard to refute because it is true—they are going where there are available data to lead them. This was the case with West Virginia: in a state with no surveillance infrastructure, how do we identify and respond to emerging trends?

If the purpose of EHE is to build those infrastructures across the country and reach into areas with the existing social determinants of health that often predict the emergence of infectious disease outbreaks, such as HIV and Hepatitis C (HCV). In fact, it is this point that makes the selection of the EHE counties so confusing:

A 2016 report released in the Journal of Acquired Immune Deficiency Syndrome identified 220 counties that were “…vulnerable to a rapid spread of HIV if introduced, and new or continuing high rates of HCV” (Van Handel, et al., 2016). Of the 220 counties identified in that report, with the exception of the 7 entire states that were selected, none of those counties identified were targeted with EHE funds (HRSA).

This is a problem. The way to solve it is to begin directing a greater proportion of federal HIV resources to those counties in order to build infrastructures in order to begin laying the groundwork to prevent those worst-case scenarios.

This isn’t a new problem. It is one that has existed since the beginning of the HIV epidemic which, after forty years, is now just ‘endemic.’ We have always directed the majority of resources to where the majority of people are located because that is where the data lead.

In order to address this, we must decide to move away from the model of being reactive to one where we are proactive. When these smaller jurisdictions are handed large sums and expected to upscale without having a clear pathway or the long-term resources to do so, the infrastructure will never be solid. Even if they receive Phase I dollars, the majority are going to large jurisdictions to prop up their existing systems, rather than to those that need to build theirs from scratch.

Does this mean that we “rob Peter to pay Paul”? Sadly, the fiscal reality is that there aren’t a lot of great solutions. We can:

1. Massively increase total HIV funding at the federal level, give the new additional funds to these vulnerable jurisdictions, and leave HIV funding in the metro areas at their existing levels, or
2. Live with the reality that a massive increase is highly unlikely and redirect a percentage of the funds currently allocated and awarded to metro areas to vulnerable jurisdictions, essentially telling metro areas to do more with less.

Neither of these scenarios is perfect. Then, again, neither is the existing funding mechanism under EHE. What is clear, however, is that we need yet another rethink about how we’re approaching HIV in the United States, because EHE does not appear to be bearing the fruit it promises.

But maybe the critics are wrong. Maybe, if we give it time, the problems will self-correct. Perhaps, with targeted interventions to help those struggling Phase I jurisdictions, we can right this ship. Given the current political climate in Washington and the increasingly volatile climates in statehouses around federal-level responses to public health crises, it is unclear as to whether or not a rethink will even be possible.

References:

• Health Resources and Services Administration. (2021, December). Ending the HIV Epidemic in the U.S. Initiative Data Report 2020. Rockville, MD: United States Department of Health and Human Services: Health Resources and Services Administration: Data: Data Reports and Slide Decks. https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/2020-hrsa-ehe-data-report.pdf
• Office of Epidemiology and Prevention Services. (2022, February 10). HIV Diagnoses by County, West Virginia, 2019-2022. Charleston, WV: West Virginia Department of Health and Human Resources: Office of Epidemiology and Preventions Services. https://oeps.wv.gov/hiv-aids/Documents/Data/WV_HIV_2019-2022.pdf
• Office of Infectious Disease and HIV/AIDS Policy. (2020, November 03). Priority Jurisdictions: Phase I. Washington, DC: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV [dot] gov: Federal Response. https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/jurisdictions/phase-one
• Office of Infectious Disease and HIV/AIDS Policy. (2021, June 02). What Is Ending the HIV Epidemic in the U.S.?. Washington, DC: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV [dot] gov: Federal Response. https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview
• Van Handel, M. M., Rose, C. E., Hallisey, E. J., Kolling, J. L., Zibbell, J. E., Lewis, B., Bohm, M. K., Jones, C. M., Flanagan, B. E., Siddiqi, A. -E. -A, Iqbal, K., Dent, A. L., Mermin, J. H., McCray, E., Ward, J., & Brooks, J. T. (2016, November 01). County-Level Vulnerability Assessment for Rapid Dissemination of HIV or HCV Infections Among Persons Who Inject Drugs, United States. Journal of Acquired Immune Deficiency Syndromes, 73(3), 323-331. https://doi.org/10.1097/QAI.0000000000001098

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

FDA Extends Cabenuva Approval to Every Two Months

By: Ranier Simons, ADAP Blog Guest Contributor

The primary weapons in the fight against HIV are anti-retroviral drugs, commonly referred to as ARVs. ARVs work by lowering the levels of HIV, known as viral load, in the body to stop HIV’s damage to the immune system. Viral load is measured by the number of copies of HIV RNA in a milliliter of blood.[1] The goal of ARV’s is to decrease the viral load to the point that standard tests cannot detect it. This level of viral suppression is commonly known as ‘undetectable’, and with it comes the important  'undetectable equals untransmissible' (#UequalsU) treatment goal.[2] Moreover, viral suppression means a significant reduction in the damage HIV can do to the body. This fight recently gained a new weapon, with two-month dosing of the injectable HIV therapy, Cabenuva.

Effective treatment means maintaining the levels of the medications in the body. This requires adherence to daily dosing. Not keeping the drugs at appropriate levels in the blood can increase viral load, damage immune cells such as CD4’s, and even drug resistance.[3] Drug resistance means that mutations of HIV could develop that are not responsive to a person's treatment regimen rendering that regimen ineffective and making it harder to find other medications that will work. 

Photo Source: Very Well Health

Early in the fight against HIV, drug regimens consisted of multiple pills several times a day. Toxicity issues, as well as issues keeping dosage schedules, were significant barriers to treatment. Modern-day once-daily one pill regimens were developed to combat both of those issues. However, some patients still experience difficulties with adherence. The most reported adherence challenges are forgetfulness, stigma, health perception, and digestive side effects.[4]

Some patients report having issues remembering to take their medication daily, especially those who have been on long-term therapy. Stigma is a concern by those who do not want family members to know they are living with HIV or to see them take medications. They do not want coworkers to know they are on medication and are psychologically harmed by the daily reminder of their health status. Health perception is an issue for long-term ARV patients because they feel healthy; thus, they become inconsistent with their dosing. Some patients also are inconsistent with their regimens due to perceived and experienced side-effects they experience from the drugs.

The evolution of ARV drug development has led to recent innovations to battle adherence issues. In January 2021, the U.S. Food & Drug Administration (FDA) approved a once-a-month injectable HIV treatment called Cabenuva. It is an extended-release injectable of cabotegravir and rilpivirine. The drug is a collaboration between Janssen Pharmaceuticals of Johnson & Johnson and ViiV Healthcare. Cabenuva is two separate injections into the buttock muscles, with the extended-release rilpivirine having been developed by Janssen and the extended-release cabotegravir from ViiV Healthcare.[5]

Photo Source: The New York Times

Cabenuva is meant for those who are virologically suppressed on a stable regimen and who have no history of treatment failure or known resistance to cabotegravir or rilpivirine. Proper administration requires one month of daily administration of rilpivirine and cabotegravir in pill form to assess tolerance before beginning the monthly injections of Cabenuva. 

Continued research into daily Cabenuva proved that it is effective. Its efficacy has proven to be so positive that on February 1, 2022, the FDA approved it for two-month injectable treatment. Therefore, some patients can be treated with only six sets of injections annually instead of twelve. The extended label approval of Cabenuva from one to two months is based on the ATLAS-2M phase IIIb trial results. An ongoing clinical trial shows that in terms of virologic suppression, every two-month dosing is not inferior to monthly dosing. ATLAS-2M is being conducted in Australia, Argentina, Canada, France, Germany, Italy, Mexico, Russia, South Africa, South Korea, Spain, Sweden, and the United States.[6]

The most common adverse reactions were fever, injection site reactions, fatigue, headache, musculoskeletal pain, nausea, sleep disorders, dizziness, and rash. The type and frequency of experienced adverse reactions were similar in those receiving the injection monthly or every two months. Additionally, the rates of serious adverse events or withdrawal due to adverse events were similar between the two groups.

This new FDA approval has the potential to be life-changing for those where Cabenuva treatment is appropriate. For further information on ATLAS-2M, please see https://clinicaltrials.gov/ct2/show/NCT03299049.

[1] Peabody, R. (2017, May). Viral load. Retrieved from https://www.aidsmap.com/about-hiv/viral-load#:~:text=The%20results%20of%20a%20viral,100%2C000%20would%20be%20considered%20high
[2] NIH. (2020, June 12). 10 Things to know about HIV suppression. Retrieved from https://www.niaid.nih.gov/diseases-conditions/10-things-know-about-hiv-suppression#:~:text=Daily%20antiretroviral%20therapy%20can%20reduce,to%20keep%20the%20virus%20suppressed
[3] Peabody, R. (2019, July). Adherence to HIV treatment. Retrieved from https://www.aidsmap.com/about-hiv/adherence-hiv-treatment
[4] Genberg, B. L., Lee, Y., Rogers, W. H., & Wilson, I. B. (2015). Four types of barriers to adherence of antiretroviral therapy are associated with decreased adherence over time. AIDS and behavior, 19(1), 85–92. https://doi.org/10.1007/s10461-014-0775-2
[5] Janssen Pharmaceuticals. (2022, February 1). U.S. FDA approves CABENUVA (rilpivirine and cabotegravir) for use every two months, expanding the label of the first and only long-acting HIV treatment. Retrieved from https://www.janssen.com/us/sites/www_janssen_com_usa/files/us_fda_approves_cabenuva_rilpivirine_and_cabotegravir_for_use_every_two_months_expanding_the_label_of_the_first_and_only_long_acting_hiv_treatment.pdf
[6] ViiV Healthcare. (2022, February 1). ViiV Healthcare announces us FDA approval of Cabenuva (cabotegravir, rilpivirine) for use every two months, expanding the label of the first and only complete long-acting hiv treatment. Retrieved from https://viivhealthcare.com/en-us/media-center/news/press-releases/2022/january/viiv-healthcare-announces-us-fda-approval-of-cabenuva/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Mask-Up! They're Still Important and Effective in the Covid-19 Fight

By: Ranier Simons, ADAP Blog Guest Contributor

The United States has entered into year three of the Covid-19 pandemic, and covid fatigue is real. People have dealt with chronic psychological and emotional distress due to isolation and quarantines. Losing loved ones and friends to Covid-19 has caused some to experience a level of PTSD. Those who have contracted Covid-19 have the physical and mental scars of suffering through its effects. Increasing numbers of people are reporting living with long-term post-covid health ailments. But it is important to remain vigilant, using the tools available to us...including masks!

Photo Source: Milwaukee Housing Authority

The proliferation of variants and increasing incidence of infection of fully vaccinated people indicates that Covid-19 is not going away in the immediate or even moderately distant future. Despite all the controversy surrounding Covid-19 vaccines, mask-wearing is still a significant cause célèbre. The mask is the physical, daily, tangible reminder that Covid-19 is the current status quo. Research also shows that mask-wearing is still one of the most effective ways to fight the spread of disease.

Because vaccine hesitancy isn't going away, mask-wearing is still very necessary. Masks are an excellent physical barrier not just for unvaccinated but also for fully vaccinated people. Research has shown that masks are also one of the best weapons to help life return to a bit of normalcy when everyone is compliant.

An experiment was done in Barcelona, Spain, on December 12, 2020, where 465 people attended an indoor concert with a result of zero incidences of Covid-19 infection.[1] The attendees were all given N-95 masks to wear, and mask-wearing was enforced by security. Social distancing was not enforced, people were allowed to sing and dance, and all access doors remained open the entire time for ventilation. The temperature inside the venue was kept at around 68 degrees Fahrenheit. The few performing artists were tested via rapid antigen testing as well as 58 venue employees. Movement around the venue was limited, and queues were prevented in restrooms as well as entry and exit doors. Hand sanitizer dispensers were also located throughout the venue.

This study is not simply anecdotal. Measures were taken before and after the concert to control the sample of the concert-goers as well as the control group. No one was allowed to participate who had tested positive for Covid-19 within the two weeks before the study, lived with elderly or immune-compromised individuals, or had any major pre-existing conditions.

Those attending were nasal swabbed 12 hours before attending for rapid testing, and those swabs were further analyzed with RT-PCR and cell culture. Eight days after the concert, there was a follow-up, patients were swabbed again, and contact tracing was done in addition to post-concert health questionnaires to compare to the ones administered pre-concert.

There were 495 participants in the control group who experienced the same pre-concert protocol, except they did not attend the concert. Out of the 465 people that attended the concert, there was zero transmission of Covid-19. Two members of the control group did test positive eight days after the concert. Ironically, this study was done before the advent of widespread vaccine availability. Enforcement of mask-wearing of this nature at an event today, combined with vaccination requirements, would potentially have an even more substantial effect.

Recently, there have been many narratives surrounding dropping mask mandates. Most recently, Gavin Newsom, the Governor of California, has announced an end to an indoor mask mandate for vaccinated residents.[2] This only applies to counties that do not already have their own mask mandates in place. Counties are allowed to opt to keep their mandates. The working theory is that Governor Newsom is still requiring masks for those who are unvaccinated, as well as in certain places such as public transit and nursing homes.

However, it is virtually impossible to tell who is and is not vaccinated in places where vaccination status is not required for entry. Regardless of covid fatigue and mask fatigue, it is essential to gird one's emotional intelligence and realize that mental fatigue does not negate the gravity of Covid-19. 

Mask wearing is one of the easiest and most effective tools against infection for everyone, including those living with HIV/AIDS. Proper positioning of the mask is essential, and one should cover both the nose and the mouth, secure it under the chin, and ensure that breathing is easy. Moreover, the U.S. Centers for Disease Control & Prevention (CDC) does not recommend masks with exhalation valves in terms of transmission control. Public behavior and the social climate make it harder to isolate and designate who is and who is not vaccinated. Intelligently using masks is one way to attempt to level the playing field.

For more information regarding HIV and Covid-19, the following readings will be helpful:

• HIV and Covid-19 Breakthrough Infections
• Living with HIV & Making Heads or Tails Over Covid-19 Vaccinations 

[1] Revollo B, et al. "Same-day SARS-CoV-2 antigen test screening in an indoor mass-gathering live music event: A randomised controlled trial" Lancet Infect Dis 2021; DOI:10.1016/S1473-3099(21)00268-1
[2] Rong-Gong, L., Money, L., Willon, P. (2022, February 7). California will lift mask mandate for vaccinated residents in indoor public places next week. Retrieved from https://www.latimes.com/california/story/2022-02-07/when-will-california-ease-mask-vaccine-rules

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Effective Messaging Will Get More Vaccine Hesitant HIV-Positive People Vaccinated

By: Ranier Simons, ADAP Blog Guest Contributor

Navigating domestic and global public health is challenging. The difficulty lies in figuring out how to juggle the heterogeneous cultural, social, economic, political, and even physical attributes of groups of people. The ultimate goal is to establish best practices and have populations homogeneously and completely adopt those practices. Unfortunately, such an outcome is virtually impossible.

The world is not new to plagues and pandemics. The plague of Justinian killed 100 million people throughout Egypt and the Roman Empire between 541 and 543 AD. The Black Death, from 1347-1351 AD, killed roughly 200 million people or 30 percent of the European population. Those are just two of many. What they both have in common is the public health response. Just as with Covid-19, evidence showed the efficacy of enhanced sanitation, separation, and isolation.[1]

Photo Source: NCBI

In addition to enhanced sanitation, separation, and isolation, the constantly evolving tool of vaccination is a modern weapon against disease. Global vaccination efforts have eradicated diseases such as smallpox. However, the present state of the Covid-19 vaccination is a daunting conundrum. While there have been aggressive efforts to ensure supply of vaccines is available, availability is not enough. Widespread use and acceptance are key.

Scientific evidence has shown that Covid-19 vaccines are effective. There is also proof that while it’s not a perfect bulletproof panacea, full Covid-19 vaccination results in far better outcomes than being unvaccinated. Regardless, there has been a messaging issue due to many factors including deliberate and inadvertent misinformation, politicization, and lack of consistency.

Several groups at higher risk for seriously adverse outcomes from covid infection have elevated levels of vaccine hesitancy. One of those groups is people who are living with HIV/AIDS. The population of people who are HIV positive is not monolithic. Research shows that older individuals living with HIV for a long time are more likely to have had at least one vaccine dose and have much lower hesitancy among that population.[2] It also shows that African-American and younger people living with HIV were more likely to be unvaccinated.[2]

A study published in AIDS Patient Care and STD’s also showed a disparity in vaccine adoption in HIV-positive individuals based on gender and sexuality.[3] Surveys showed that among the unvaccinated, there was higher intent to get vaccinated among sexual and gender minority individuals (including but not limited to those identifying as LGBT) than non-sexual and gender minority individuals. Additionally, it showed that people with suppressed viral loads were more likely to be vaccinated.

Vaccine hesitation among HIV-positive people is based on many factors. Several major ones are pandemic fatigue, the success of vaccination, pregnancy concerns, and the constantly evolving science around Covid-19 virology and immunology.[3] Pandemic fatigue has resulted in many HIV-positive people mentally distancing themselves from thinking about it. Oddly, the success of getting large numbers of people vaccinated has caused complacency. It has caused some people living with HIV/AIDS to have a much lowered perceived risk of infection. Misinformation about fertility has made some HIV-positive women hesitant due to the belief it will cause sterility. Most importantly, constantly changing and sometimes conflicting information about the science of covid has caused hesitancy due to a lack of public confidence.

Photo Source: STAT News

Effective messaging for HIV-positive people means specific targeting of groups.[4] There needs to be population-sensitive messaging of African-Americans, of younger populations, of cisgendered straight men who don’t receive much messaging or access care as often for their HIV treatment, and women who have fertility and reproductive concerns.

As we advance, it is imperative that vaccine messaging come from trusted sources including antiretroviral therapy staff.[4] Emphasis should be placed on the safety and efficacy of the vaccines. Discussion should be centered on how vaccination can prevent severe disease, hospitalizations, and death. There should be reminders of how the personal choice to get vaccinated helps to protect other unvaccinated family members and fellow neighborhood residents. Most importantly, the motivations behind misinformation should be explained. Misinformation should be countered with responsibly factual and documented information to facilitate the social spread of correct knowledge. These messaging solutions can also translate into changing vaccination messaging for the seronegative vaccine-hesitant population, as well. 

[1] Piret, J., & Boivin, G. (2021). Pandemics Throughout History. Frontiers in microbiology, 11, 631736. https://doi.org/10.3389/fmicb.2020.631736
[2] People living with HIV need tailored COVID-19 vaccination information (2022, January 21). Retrieved from https://medicalxpress.com/news/2022-01-people-hiv-tailored-covid-vaccination.html
[3] Ekstrand, Heylen, E., Gandhi, M., Steward, W. T., Pereira, M., & Srinivasan, K. (2021). COVID-19 Vaccine Hesitancy Among PLWH in South India: Implications for Vaccination Campaigns. Journal of Acquired Immune Deficiency Syndromes (1999), 88(5), 421–425. https://doi.org/10.1097/QAI.0000000000002803
[4] Lila, J. et. al. (2021). Evidence-based strategies for clinical organizations to address COVID-19 vaccine hesitancy. Mayo Clinic Proceedings. 96(3). 699-707. https://doi.org/10.1016/j.mayocp.2020.12.024

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.