Federal Court Sides with Patients Over CVS Health's Attempt to Gut Non-Discrimination Protections

By: Ranier Simons, ADAP Blog Guest Contributor

The increasing consolidation of corporate health entities is of significant concern because of the vast number of lives affected. When companies control a substantial market share of services and products, every business practice has pervasive outcomes since so many end users are dependent on them. This is especially notable in the arena of prescription drug benefit management, where CVS Health is one of the most prominent players. CVS Health has a history of actions and practices that have proven to be problematic in the lives of many patients and consumers. Moreover, their practices have habitually adversely affected people living with HIV/AIDS (PLWHA). Recently, CVS unsuccessfully tried to evade a discrimination lawsuit due to their practices.

Photo Source: TheBody

In 2018, seven plaintiffs filed a class action lawsuit against CVS Health Corporation, claiming CVS discriminated against PLWHA based on their prescription plans' design and denying them meaningful access to their health benefits.[1] The employer-sponsored health plan the patients utilized, whose pharmacy benefits were managed by CVS, required them to use mail-order specialty pharmacy services or CVS chain pharmacy services to obtain their HIV medication and receive the in-network pricing. They could not use their preferred in-network community pharmacies without incurring significantly higher out-of-pocket costs.

Utilizing preferred in-network pharmacies results in optimal patient care and utilization of services. Local pharmacies allow face-to-face interactions with pharmacists familiar with patients’ medical histories and related needs. Additionally, they are often geographically more accessible than the CVS chain pharmacies. Mail-order dispensing can result in delayed medication, lost or stolen medication, damage to medicines due to exposure to the elements, and even privacy concerns.

Repeatedly, the plaintiffs petitioned both their employer and CVS to ‘opt-out’ to be able to use their preferred in-network pharmacy choices, which were considered in-network for non-HIV medications. Despite repeated communications and requests, neither CVS nor their employers allowed them to opt out.[1] As such, they brought the lawsuit alleging that CVS was engaged in discrimination based on HIV disability under the Affordable Care Act. CVS moved to have the case dismissed on several grounds.[2] Firstly, they argued that the case had no merit because several of the plaintiffs are now deceased. They also argued the case should be dismissed because a couple of plaintiffs are now on different plans not currently associated with the problematic CVS benefit issue in question. Most notably, they claimed that they were not aware that their policies directly affected the rights of a federally protected class. Additionally, they argued that the employers were responsible for not allowing the plaintiffs to opt-out, not CVS.

Photo Source: Chronic Disease Coalition

In April 2024, U.S. District Judge Edward Chen ruled that CVS’ request for dismissal would not be granted.[2] He ruled that CVS’s actions fulfilled the requirements of proving deliberate indifference. The legal term means that CVS was fully aware of the damage the benefit plan specifically had on the PLWHA’s medically necessary access to HIV medications but failed to act on it by making reasonable accommodations.[2] In addition to the well-documented communications between the plaintiffs and CVS, CVS internal reports indicated that CVS had been given previous legal guidance that their benefit design could be deemed discriminatory to a protected class. 

Judge Chen also ruled that CVS could not blame the employer. CVS was fully able to modify a plan structure whenever it wanted. Moreover, the plans CVS presented to employers to select for coverage contained financial incentives for forcing the use of mail-order and CVS-specific branded pharmacies for HIV medication and other specialty drugs.[2] It was proven that CVS had other plans that allowed patients to opt out but did not make those options available for the employers in question. Unfortunately, Judge Chen ruled against the plaintiffs, stating they could not sue for monetary damages from the thousands of dollars they had paid out of pocket to get their medications from their preferred community pharmacies. Regardless, the plaintiffs legally have standing for the case to proceed because of Chen’s denial of the dismissal. 

As a result, CVS was sued in a separate lawsuit in 2018 for errantly publicly disclosing the HIV status of over 6,000 Ohio residents.[3] The Ohio AIDS Drug Assistance Program (OhDAP) had a contract with CVS where CVS provided HIV medications to OhDAP clients and handled communications with those members. The suit alleged that in the third quarter of 2017, CVS mailed out a letter containing membership cards, information about how to obtain HIV medications, and other program information to 6,000 clients. This mailing was in an envelope with a clear plastic window with a short reference code for the mailing list, ‘PM 6402 HIV’ printed above the recipient’s name. The plaintiffs sought legal remedy because the mailer "resulted in the potential or actual disclosure of recipients' HIV status to numerous individuals, including their families, friends, roommates, landlords, neighbors, mail carriers, and complete strangers."[4]

Photo Source: KRSO

The mailing was not only negligent in its handling of protected health information but was seemingly profit-driven. At the time of the mailing, many of the recipients did not have an established relationship with CVS. The mailer was sent regardless of whether the recipients were active CVS pharmacy customers. It was a way to market the usage of not only CVS pharmacy benefit products but also its general health care delivery services.[5] In 2020, CVS agreed to settle the lawsuit for $4.35 million.[6]

CVS is not the only problematic player in the corporate healthcare arena. However, their actions and core paradigms are consistently antagonistic to the best interests of PLWHA and others utilizing specialty drugs. In a briefing presented to payors in 2021, CVS Caremark listed strategies it would employ to save money. Regarding activities in response to new drugs in the market, some of its planned actions included: initially blocking coverage of new drugs, reviewing for clinical appropriateness and cost-effectiveness prior to formulary decision, applying aggressive clinically appropriate utilization management criteria with rigorous approval requirements, strongly favoring generic use requiring objective evidence of need for newer agents, and selecting preferred agents generating lowest net cost option in each category.[7]

Jen Laws, CEO of Community Access National Network, summarily describes CVS, stating: “CVS engages in aggressive self-dealing practices and anti-competitive contract efforts to eliminate competition, drive patients to their own pharmacies (including by way of under reimbursement to independent, non-chain pharmacies and higher cost-sharing for patients utilizing their trusted pharmacies), and roundly limit access to care by weaponizing their PBM.” It seems that keeping a continued focus on CVS will be necessary to highlight and act against present and future practices that harm patients.

[1] Third Amended Class Action Complaint. (2023, October 24) ). Retrieved from https://consumerwatchdog.org/wp-content/uploads/2023/11/2023-10-24-241_Third-Amended-Complaint.pdf

[2] John Doe One et al. v. CVS Pharmacy Ruling. (2024, April 18). Retrieved from https://www.courthousenews.com/cvs-medication-program-discriminates-against-hiv-aids-patients-judge-says/john-doe-one-et-al-v-cvs-pharmacy-et-al-mtd-ruling/

[3] Doe One et al. v. CVS Health Corporation et al. (2018, March 21). Retrieved from https://dockets.justia.com/docket/ohio/ohsdce/2:2018cv00238/211764

[4] Faul, A. (2018, March 29). CVS Health unintentionally revealed HIV status of 6,000 customers: Lawsuit. Retrieved fromhttps://abcnews.go.com/Health/cvs-health-unintentionally-revealed-hiv-status-6000-customers/story?id=54095674

[5] Schladen, M. (2018, June 29). State, CVS sued over HIV mailing. Retrieved from https://www.dispatch.com/story/news/politics/elections/2018/06/29/state-cvs-sued-over-hiv/11624806007/

[6] AIMED Alliance. (2020, May 15). CVS Health to Settle Lawsuit for Revealing HIV Status of Over 4,500 Patients. Retrieved fromhttps://aimedalliance.org/cvs-health-to-settle-lawsuit-for-revealing-hiv-status-of-over-4500-patients/

[7] Accetta, L. (2021). Expanding therapies, indications and implications for payors: Pipeline trends that will drive change in 2022. Retrieved from https://business.caremark.com/insights/2021/expanding-therapies-indications-and-implications-payors.html   

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.  

An Expression of Support for Basic Human Decency

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, President & CEO, Community Access National Network

Earlier this week, ADAP Advocacy Association and Community Access National Network (CANN) issued a joint statement announcing an embargo of each respective organization’s patient advocacy and education activities within the state of Florida. Both organizations also cited a need to protect advocates and patients from outside of the state from the very real dangers associated with traveling to the state, while also emphasizing that both organizations will continue to support local advocates in the state as they work to create positive public policy changes for Floridians living with HIV. The decision to adjoin both the ADAP Advocacy Association and the Community Access National Network to the previously issued formal travel advisory by the NAACP wasn’t taken lightly because maintaining strong ties to the community is important in generating effective advocacy. The move was not a political statement either, but rather an expression of support for basic human decency.

The announcement comes after the state’s governor, Ron DeSantis, signed into law a series of bills targeted toward harming Black, Brown, LGBTQ+, and immigrant people. The transgender community was probably singled out more viciously than any of the marginalized communities throughout this hate-inspired Florida Legislative Session. Make no mistake about it why this effort to enflame a “culture war” is an issue of organizational values and something quite personal to both of us. The non-trans guy here taking issue with the fact that the trans guy here now cannot take “a leak” without fear of being charged with a felony has nothing to do with politics and everything to do with basic human rights.

The fact is we both previously lived in the state for many years – it’s where we started our HIV policy work, even before we knew one another. It is where we met over a decade ago. Upon reflection, we still can regularly be found discussing mutual friends from Florida, those still living and those who have passed on, in different phases of their lives.  

From recalling Bishop S.F. Makalani-MaHee's testimony to the Florida Legislature in 2016, against a bathroom bill (which failed that year), to his death on Transgender Day of Remembrance in 2017, part of this internal discussion was a reflection on the deep history he had with advocates serving both the Transgender and HIV communities of the state. What we’re witnessing right now in Florida is challenging for us, personally and professionally, but state-sponsored discrimination, hate, and stigma drew a line that cannot be ignored.

In 2017, Human Rights Watch published an important report, Living At Risk: Transgender Women, HIV, and Human Rights in South Florida, and the very same year ADAP Advocacy Association published it’s issue paper, Transgender Health: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS Under the AIDS Drug Assistance Program. Both of us worked on the ADAP project, and it was important for a transgender advocate (Jen) with lived experience to lead in writing model policies meant to serve Transgender People Living with HIV. The decision to issue a travel advisory in Florida for people living with HIV is rooted in disparities and areas of improvement emphasized in those two reports.

Photo Source: ADAP Advocacy Association

Much of our hearts belong to Florida for the dedication and innovation the people of this state can and do offer, despite every unnecessary public policy challenge they face. People like Mick Sullivan and Donna Sabatino (formerly with Tibotec Therapeutics), Connie Reese and her amazing work with Simply Amazing You Are (SAYA) in Miami-Dade County, Riley Johnson promoting trans equality in accessing medical care via RAD Remedy, Michael Ruppal’s leadership with The AIDS Institute, and the late Tiffany Marrero, who served to voice the experiences of vertical transmission patients and Black Women and only recently left us. Heck, Trelvis Randolph and Maria Mejia both reside in South Florida, and they serve on CANN’s board of directors. These folks not only are colleagues, but they are friends and expressing concern over traveling to a place once call “home” saddens us.

But some things are larger than us. Recognizing the inherent roots of racism, which has prompted the NAACP to issue a travel advisory, our joint statement read, in part:

The state of Florida's moves to harm Transgender people, Black and Brown communities, and immigrant families undermines the exceptional work the state's Health Department has done in the last several years and only serves to further existing health disparities affecting these communities, particularly as it relates to HIV. For example, according to Florida's own data, while Black and Hispanic/Latino communities make up about 15.6% and 26.7% of the state's population, respectively, these same communities represent 37.7% and 39.6% of HIV diagnoses. Put another way, in Florida, while white people experience a rate of HIV diagnoses of 8.5 per 100,000 people, that rate among Black communities is 51.8 and for Hispanic/Latino communities it's 31.7.

Similarly, Florida has, in years past, made extraordinary strides in ensuring transgender people can access HIV related care, specifically by integrating best practices and guidance from the Health Resources and Services Administration (HRSA) on integrating gender affirming care into HIV care provision. Indeed, as a result of these moves, transgender women represent some of the greatest successes in linkage to care, retention in care, and viral load suppression of any demographic in the state. Recently signed bills prohibiting state contracted clinics from providing gender affirming care will have a dramatic affect in reversing these long sought after wins. 

Make no mistake, we are frustrated with an apparent lack of involvement from the federal agency charged with implementing the Ryan White HIV/AIDS Program. Because Ryan White program dollars are passed through the state and then contracted with counties, local areas, or directly with a provider, and because other health initiatives of the state are also part of how providers in Florida acquire funding to provide public health services, they may be prohibited from providing gender affirming care at all - regardless of where those dollars originate (state or Federal).

It is incumbent upon HRSA to provide guidance beyond ‘allowable’ uses and inform that state it has contractual, fiduciary responsibilities associated with its grant and subrecipient contracts to ensure these dollars serve these communities. HRSA must move beyond the language of ‘allowable’ uses to ‘expected integration of best practices.’

In many situations, we have been willing and able to confront harsh environments. Indeed, we recognize the need to be present in the spaces where political forces wish to silence us. However, Florida has crossed a line in becoming hostile to the very existence of Black and Brown and Immigrant and Transgender people, those same communities most affected by HIV. The people who enacted these hateful laws were motivated by hateful politics; our response is motivated by concern for the people we’re charged with representing in our community…many of whom feel silenced. This is a line which we cannot cross and still consider ourselves as living the values we espouse.

We came to the difficult decision that neither the ADAP Advocacy Association or Community Access National Network will host any advocacy or educational event in the state of Florida. We will continue to support local advocates and people living with HIV residing in the state, including scholarship support for intrastate travel by local advocates. We will continue to offer analysis on the state's activities. But we will not ask advocates from outside of the state to risk their mental health or physical safety to travel to the state.

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.

Implications of Health Stigma, Mental Health and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

Over decades, we have made considerate advances to turn HIV into a chronic but manageable condition. Despite these advances, people living with HIV/AIDS (PLWHA) continue to endure discrimination and stigma from their communities, families, and professionals. Consequently, millions of PLWHA are impeded from accessing preventative and treatment services (World Health Organization, 2011). In 2014, UNAIDS cited the fear of stigma and discrimination as the primary reason individuals were reluctant to have an HIV test, take HIV medications such as antiretroviral treatments (ART) and disclose their HIV status. As researchers continue to explore the effects of stigma on the mental well-being of PLWHA, they have found significant evidence of the association between HIV related stigma and social outcomes such as heterosexism, racism, and poverty (Earnshaw, V., Bogart, L., Dovidio J., Williams, D., 2013).

For PLWHA, mental health conditions are among the most common obstacles regardless of ethnicity or gender and can impact behaviors related to accessing healthcare services and thereby effecting ones health and overall quality of life (Yi, S., Chhoun, P., Suong, S., Thin, K., Brody, C., & Tuot, S., 2015). According to HIV.gov (2019), people who are HIV positive are at an increased risk of developing an anxiety, cognitive or mood disorder, and depression. A multi-site cross sectional study estimated that individuals who are receiving care for a mental health condition are four times as likely to be living with HIV as compared to the general population (M.Blank et al., 2014). In South Africa, researchers conducted a national survey and found that 44 % of PLWHA had a diagnosable mental health condition; depression accounted for 30 %, major depressive disorder 11 %, and alcohol abuse disorder for 12 % (Freeman M, Nkomo N, Kafaar Z, Kelley K., 2008). The American Psychiatric Association and Office of HIV Psychiatry reported results from a study that found 19% of males involved in psychiatric care were HIV positive and of 320 patients between the ages of 20 and 40, AIDS was the leading cause of death (2012).

HIV stigma refers to negative beliefs, feelings, and attitudes toward PLWHA while HIV discrimination refers to the unfair and unjust treatment based on one’s real or perceived HIV status (Centers for Disease Control and Prevention, 2019). According to UNAIDS (2015), in a study conducted across 35% of countries with available data, more than 50% of people reported that they held discriminatory attitudes toward PLWHA. In 2012, researchers conducted surveys to identify attitudes toward PLWHA and found that many still associated HIV/AIDS with things such as death, fear, promiscuity, and irresponsibility while the majority of participants also admitted to actively avoiding PLWHA (Herek, Capitanio, & Widaman, 2002).

Perceived fear of stigma and discrimination is one of the primary reasons people avoid getting an HIV test. With reluctance to taking an HIV test, people are placed at an increased risk of being diagnosed late meaning the virus may have progressed to AIDS making treatments more difficult as well as increasing the chance of transmitting the infection to others. Being diagnosed with HIV/AIDS involves many lifestyle changes including strict medical treatments, changes in nutrition, and learning how to navigate the medical and social aspects of being HIV positive. These changes can act as a consistent reminder to PLWHA of their status and the stigma associated with the illness making it difficult to adjust. Research has found that PLWHA are diagnosed with depression at a rate of two to five times higher than individuals who are HIV negative and are diagnosed with generalized anxiety disorder almost eight times the rate of someone who is HIV negative (Bing, et al., 2001).

Photo Source: National Minority AIDS Council

During the early years of the epidemic many false beliefs such as HIV/AIDS is the result of moral fault or personal irresponsibility, its only transmission is through sex, and an association of death were developed (Varni et al., 2012). Regardless of advances in medical treatments and public education, many of these perceptions are still found throughout communities. According to the People Living with HIV Stigma Index, findings from 50 countries indicated that about one in every eight PLWHA is being denied health services due to discrimination or stigma (UNAIDS, 2017). In South Africa, a group of women were given access to Vaginal gels and pills as a means of HIV prevention. Many of the young women involved in the study reported fear of using these products because they may be perceived as HIV positive (The Well Project, 2016). Another study, conducted in Mexico found a strong correlation between self-stigma and having never been tested for HIV which included the perception of HIV testing as being associated with homosexuality (Pines, Meza, EV, et al., 2016).

Stigma against PLWHA can be seen in hospitals, communities, families and in our court system. Currently, there are thirty-three states and two U.S. territories that have HIV-specific statutes criminalizing the nondisclosure of one’s HIV status and exposing others to the virus (Lehman, Carr, Nichol, Ruisanchez, Knight, Langford, et al., 2014). Many of the statutes include severe punishments including 25 years to life in prison for being accused of nondisclosure. While many states have included enhancements adding time in prison or additional punishments for people who have already been imprisoned such as exposing a public safety officer to bodily fluids and in some cases, this extends to urine and saliva (Harsono et al., 2017).

Although many states passed HIV exposure laws in the 1980’s, the passing of the Ryan White Care Act in 1990 was pivotal in developing US HIV exposure laws (Harsono, Galletly, O’Keefe, & Lazzarini, 2017). In order to receive federal funds, one of the conditions of the Ryan White Care Act was to require that all US states have a legal mechanism to prosecute individuals who were knowingly exposing others to the virus.

For countries with laws, rules, or policies that discriminate against PLWHA there is the risk of further alienating and excluding individuals and therefore reinforcing stigmatization surrounding HIV/AIDS. UNAIDS (2014) has reported that there are currently 72 countries with laws aimed at prosecuting PLWHA. There are currently 17 countries where upon discovering one’s positive status, individuals are at risk for deportation, in 35 countries there are laws that restrict one’s entry and residency for PLWHA, and in 5 countries PLWHA are completely banned from entry (UNAIDS, 2015).

Many of these laws undermine public health efforts to prevent further exposure to HIV by increasing stigma and discrimination. Through the criminalization of HIV, we are perpetuating a stigma that deters people from getting tested and we are placing the responsibility of prevention on the persons living with HIV/AIDS. Research on the efficacy of HIV exposure laws have repeatedly found little evidence of any protective benefits of these laws. In one study, researchers found that awareness of states HIV exposure laws was not associated with any HIV prevention related behaviors while another study found no association between one’s residence in a state with HIV exposure laws and the number of unprotected sexual partners or sex without prior HIV status disclosure (Harsono, et al., 2017). Delvande, Goldman, and Sood (2010) conducted a multi-state sample that found evidence to support the concern that HIV exposure laws actually inadvertently deter PLWHA from disclosing their HIV status and for people living in states with a greater than average number of HIV related prosecutions, they were less likely to disclose their positive status to their partners. Many not for profit organizations throughout the United States such as Lambda Legal have been working diligently to impact public policy at a local, state, and federal level to help protect and advance the rights of PLWHA. In their publication “15 Ways HIV Criminalization Laws Harm Us All” they outline the way these laws harm public health, resulting in unjust prosecutions, and primarily serve to stigmatize and oppress PLWHA.

Photo Source: Equip Health

Recognizing that HIV-related stigma acts as a barrier to both engagement and prevention, Turan, Hatcher, Weiser, et al., (2017) designed a conceptual framework that highlights the dimensions of HIV related stigma to identify the mechanisms by which stigma leads to worse health outcomes for PLWHA. Turan et al. found that stigma can have negative impacts on the health of PLWHA both directly (physiologically) and indirectly (engagement in care behaviors). The researcher’s framework recognizes the effects of stigma at both a structural level and an individual level.  For example, if students decide to specialize in less stigmatized diseases or work in more affluent neighborhoods we loose a great amount of resources at a structural level; whereas, at an individual level through internalized stigma and micro level mechanisms such as depression, PLWHA are at a higher risk for negative health outcomes. Understanding the dimensions of stigma and its effects on populations can assist healthcare professionals in treating their consumers more effectively and recognize new areas for care.

Limited attention has been given to research on the linkage between HIV related stigma and discrimination and the mental well being of PLWHA. By furthering research, we can learn how to develop more effective community-based interventions that aim at reducing stigma and discrimination and assist PLWHA to cope with obstacles facing their physical and mental health. Increasing the quality of HIV care, revising health policies and legal protections, as well as reviewing strategies for reducing stigma are just some of the ways we can we can begin working to reduce false perceptions of PLWHA and create a more inclusive atmosphere. We must also work to address the stigmatizing and oppressive laws that create an environment where they can be used as coercive tools, where a false accusation is used to manipulate the PLWHA, or where confidentiality is compromised when your partner or healthcare professional share your status (Lambda Legal, 2006). Like the framework posed by Turan et al. (2017), we must address it structurally and individually.

References:

• Bing, E., Burnam, M., Longshore, D., Fleishman, J., Sherbourne, C., London, A., et al. (2001). Psychiatric disorders and drug use among human immunodeficiency virus infected adults in the United States. Archives of General Psychiatry, 58, 721-728
• Centers for Disease Control and Prevention. (2019). Dealing with stigma and discrimination. Retrieved from: https://www.cdc.gov/hiv/basics/livingwithhiv/stigma-discrimination.html
• Delvande, A., Goldman, D., Sood, N. (2010). Criminal prosecution and HIV related risky behaviors. Journal of Law and Economics, 53 (4): 741-782
• Earnshaw, V., Bogart, L., Dovidio J., Williams, D.(2013). Stigma and racial/ethnic HIV disparities: moving toward resilience. American Psychology, 68: 225–236. 10.1037/a0032705
• Freeman M., Nkomo N., Kafaar Z., & Kelley K. (2008). Mental disorder in people living with HIV/AIDS in South Africa. South African Journal of Psychiatry, 38: 480–500.
• Harsono, D., Galletly, C, O’Keefe, E., and Lazzarini, Z. (2017). Criminalization of HIV Exposure: A review of empirical studies in the United States. AIDS Behavior, (1): 27-50 
• Herek, G., Capitanio, J., & widaman, K. (2002). HIV related stigma and knowledge in the United States: Prevalence and trends. American Journal of Public Health, 92, 371-377
• HIV.gov (2019). US Statistics: Fast facts. Retrieved: https://www.hiv.gov/hiv- basics/overview/data-and-trends/statistics
• Lambda Legal (2006). 15 Ways HIV criminalization laws harms us all. Retrieved from: https://www.lambdalegal.org/sites/default/files/publications/downloads/15-ways-hiv- criminalization-laws-harm-us-all.pdf
• Lehman, J., Carr, M., Nichol, A., Ruisanchez, A., Knight, D., Langford, A., et al. (2014). Prevalence and public health implications of state laws that criminalize potential HIV exposure in the United States. AIDS Behavior, 18(6): 997-1006
• Mogga, S., Prince, M., Alem, A., Kebede, D., Stewart, R., Glozie,r N., Hotopf, M.(2006). Outcome of major depression in Ethiopia: population-based study. British Journal of Psychiatry, 189, 241-6
• Pines, H., Goodman-Meza, D., Pitpitan, E., et al (2016). HIV testing among men who have sex with men in Tijuana, Mexico: A cross-section study. Doi: 10.1136/bmjopen-2015-010388
• PLHIV Stigma Index (2015). We are the change: Dealing with self-stigma and HIV/AIDS: An experience from Zimbabwe. Retrieved from: http://www.stigmaindex.org/sites/default/files/reports/Zimbabwe%20People%20Living% 20with%20HIV%20Stigma%20Index%20Report_15-12-14pdf.pdf
• Steward W, Herek G, Ramakrishna J, Bharat S, Chandy S, Wrubel J, Ekstrand M.(2008).HIV-related stigma: Adapting a theoretical framework for use in India. Social Science and Medicine, 67(8):1225-35
• Turan, B., Hatcher, A., Johnson, M., Rice, W., Turan, J. (2017). Framing mechanisms linking HIV related stigma, adherence to treatment, and health outcomes. American Journal of Public Health, 107(6): 863-869
• UNAIDS (2015). On the fast-track to end AIDS by 2030: Focus on location and population. Retrieved from: https://aidsdatahub.org/sites/default/files/publication/World_AIDS_Day_report_2015.pdf
• UNAIDS(2017). Make some noise for zero discrimination on 1 March 2017. Retrieved from: https://aidsdatahub.org/sites/default/files/publication/UNAIDS_zero-discrimination_2017.pdf
• Varni, S., Miller, C., Mccuin, T., and Solomon, S. (2012). Disengagement and engagement coping with HIV/AIDS stigma and psychological wellbeing of people with HIV/AIDS. Journal of Social and Clinical Psychology, 31(2): 123-150
• The Well Project (2016). Stigma and discrimination against women living with HIV. Retrieved from: https://www.thewellproject.org/hiv-information/stigma-and-discrimination-against- women-living-hiv
• World Health Organization (2011). Global HIV/AIDS response: Epidemic update and health sector progress towards universal access: Progress report 2011. Retrieved from: https://www.who.int/hiv/pub/progress_report2011/summary_en.pdf?ua=1
• Zhao, G., Li, X., Zhao, J., Zhang, L, and Stanton, B. (2012) Relative importance of various measures ofHIV related stigma in predicting psychological outcomes among children affected by HIV. Journal of Community Mental Health, 48: 275-283

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.

Discriminatory Design: HIV Treatment in the Marketplace

By: Sean Dickson, Senior Manager, Health Systems Integration, National Alliance of State & Territorial AIDS Directors (NASTAD)

The National Alliance of State and Territorial AIDS Directors (NASTAD published a groundbreaking report on the treatment of HIV medications by Affordable Care Act insurance plans available on the Federally-facilitated marketplaces. This report – Discriminatory Design: HIV Treatment in the Marketplace – reveals pervasive deficiencies in marketplace plans’ coverage and pricing of HIV medications.

States and the Centers for Medicare & Medicaid Services (CMS) are currently reviewing plan designs for 2017, and this report will help guide their review to reduce discriminatory plan design for persons living with HIV. The report highlights the direct relationship between drug prices and insurer restrictions, underscoring the need for comprehensive drug pricing reform in addition to monitoring and enforcement of non-discrimination protections.

Key findings include:

• 20% of plans only cover one single-tablet regimen, Atripla, the oldest and least-recommended regimen
• One-third of plans place all covered single-tablet regimens on the specialty tier
• Over 45% of Bronze plans subject all covered single-tablet regimens to co-insurance
• 15% of plans do not cover any HIV drugs introduced since 2013
• 34% of plans place Truvada, which can prevent HIV infection as Pre-Exposure Prophylaxis (PrEP), on the specialty tier
• 29% of plans require patients to “fail-first” on another HIV drug before taking Stribild, a leading single-tablet regimen
• Cost-Sharing Reduction plans, intended to help low-income individuals access affordable insurance, have the same high levels of co-insurance as Silver plans
• Increases in drug list prices lead to increased frequency of co-insurance at statistically significant levels

The full report can be downloaded online at https://www.nastad.org/resource/discriminatory-design-hiv-treatment-marketplace.

Please contact Sean Dickson with any questions at sdickson@nastad.org.

________

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.

Access to HIV/AIDS Medicines in Exchange Plans

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association earlier this week announced the framework for its 9th Annual Conference, which includes seven (7) town-hall style panel discussions about various issues impacting access to care and treatment for people living with HIV/AIDS. Among them, a discussion on the access to HIV/AIDS medicines (and other services) in exchange plans.

The panel on the "Affordable Care Act: Marketplace Cost Sharing & Barriers to Healthcare" will be moderated by Scott Evertz, former Director for the Office of National AIDS Policy, and current board member for the Community Access National Network (CANN). It is an opportunity to dig deeper into the ongoing discriminatory practice by insurance companies, requiring inordinately high co-payments and co-insurance for medications used in the treatment of HIV and AIDS.

This ongoing issue has routinely been covered by the ADAP Blog, because it is one of the most commonly expressed concerns by the patient community. View previous blogs on the topic here, here, and here, as well as here.

The Pharmaceutical Research and Manufacturers of America® (PhRMA) recently released several new fact sheets, which provide an in-depth, state-by-state look at coverage and access in the 2016 exchange plans. In a statement released by PhRMA, they are summarized as follows: "From deductibles and cost sharing to prescription drug coverage and formulary data, each fact sheet lays out the specifics for a given state compared to the national average, according to research analyzing 2016 silver health insurance exchange plans. Based on the data and information gathered, the fact sheets also include suggestions for improving exchange coverage in each state."

The fact sheets are available online at AccessBetterCoverage.org.

Photo Source: AccessBetterCoverage.org

Of particular interest to our readers is the fact sheet on HIV/AIDS medications, outlined in the Formulary Access for Patients with HIV/AIDS. A troublesome finding is approximately 10% of the plans use high tier placement or coinsurance for all single source HIV medicines.[1]

An excellent patient-centric resource available at AccessBetterCoverage.org is the "In Your State" tool. It allows patients to learn more about the marketplace plans in each state, including important fact sheets.

For example, in Alabama the following actions are recommended:[2]

• Enforcing non-discrimination requirements, which apply to benefit design and provider networks; 
• Establishing stronger rules regarding exceptions and appeals processes, which help enrollees get the medicines and care their doctors recommend; and  
• Enhancing the state's marketplace website or advocating for a Healthcare.gov page that allows for easier plan comparisons, including searchable formularies and estimates of total out-of-pocket costs.

To utilize this tool, CLICK HERE.

The rising share of patient cost-sharing is widely viewed as the next frontier in the healthcare reform battle. It is one that disproportionately impacts people living with chronic conditions, such as HIV/AIDS.

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[1] Avalere, "Formulary Access for Patients with HIV/AIDS," page 9, 2016.
[2] AccessBetterCoverage.org, "In Your State: Alabama," 2016; available online at http://accessbettercoverage.org/states/alabama.

Foul Called; Weak Patient Protections Offered by HHS

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The U.S. Department of Health & Human Services ("HHS") dropped the ball when it recently defined discrimination in plan benefit design under the Affordable Care Act ("ACA"); that statement is plainly put because it is true! Absent clearer guidelines, HHS basically issued a green light for insurance carriers to potentially discriminate against people living with chronic illnesses, including HIV/AIDS. Stakeholder groups have cried foul over the regulations, characterizing them as weak.

The ACA's Section 1557 is the nondiscrimination provision of the law. It law prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs or activities. Section 1557 builds on long-standing and familiar Federal civil rights laws: Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973 and the Age Discrimination Act of 1975.[1]

Photo Source: Class Action News

The "I Am Essential" coalition sent a letter to HHS signed by 197 organizations on the proposed rule. The letter outlined numerous concerns. Among them:[2]

• placing all or nearly all medications to treat a certain condition on the highest cost-sharing tier;
• not covering certain medications or not following treatment guidelines;
• imposing excessive medication management tools such as unreasonable prior authorization, step therapy requirements, and switching medications midyear;
• charging high cost-sharing to beneficiaries with chronic or serious conditions;
• and having narrow and exclusionary provider networks.

To read the letter, CLICK HERE.

There is plenty of evidence to suggest that marketplace plans are already engaged in discriminatory practices, which in many cases have adversely impacted patients living with HIV/AIDS. High deductibles, high co-insurance, and high co-payments are a few tactics being used by insurance carriers to shift the cost of care to patients living with chronic illnesses. To read last week's blog on this trend, CLICK HERE.

HHS, however, did leave the door open to review alleged discrimination on a case-by-case basis. Albeit welcome news, there has to be a better approach to potential barriers that may arise.

Carl Schmid, Deputy Executive Director, The AIDS Institute, characterized some of the concerns, "We are disappointed that HHS did not do a better job at specifically defining discrimination in plan benefit design. Despite the many benefits of the ACA and its prohibition on denying coverage to beneficiaries with a pre-existing condition, some insurance plans are finding ways to discriminate against patients, particularly those with chronic and serious health conditions.  Those practices should be defined and clearly prohibited. However, we are pleased that HHS reiterated they will review plans for discriminatory practices on a case-by-case basis through their enforcement activities, and identified a number of examples of possible discriminatory plan design.  We urge the Administration to rigorously use their oversight and enforcement tools."[3]

Even the pharmaceutical industry's trade association expressed caution over the regulations issued by HHS, acknowledging that they neglect to define discrimination. The Catalyst, which is the Pharmaceutical Research and Manufacturers of America's (PhRMA) blog, said:

"Protecting patients from discriminatory benefits is particularly important when it comes to plan formularies. For many patients with chronic conditions, it is relatively easy to predict their prescription drug needs. This means plans may be able to discourage enrollment by certain higher cost individuals simply by not covering the medicines they need or placing them on a high formulary tier. Unfortunately, we have seen many marketplace plans placing all medicines for certain conditions on the specialty tier or on a tier with coinsurance above 40 percent. In some cases, this is even happening in classes where generics are available. This leaves patients with no lower cost alternative and goes against the very nature of insurance by punishing individuals who happen to need a particular class of medicine."[4]

It is crucial that the public health community continue to monitor these glitches with the Affordable Care Act and collaborate on solutions to better assist patients living with chronic illnesses. Left unchecked, insurance carriers have demonstrated a history of pushing the envelope when it comes to discriminating against HIV/AIDS.
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[1] U.S. Department of Health & Human Services, Office of Civil Rights, "Section 1557 of the Patient Protection and Affordable Care Act," 2016.
[2] I Am Essential, "Patient Groups React to Final ACA Nondiscrimination Rule," May 13, 2016.                                 
[3] I Am Essential, "Patient Groups React to Final ACA Nondiscrimination Rule," May 13, 2016. 
[4] Pharmaceutical Research and Manufacturers of America, The Catalyst, "New non-discrimination rule neglects to define discriminatory benefits," May 19, 2016.