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.

CMS Declines To Enforce New Co-Pay Rules It Put In Place

By: Marcus J. Hopkins, Policy Consultant

One of the arguably good changes brought forth by the Affordable Care Act (ACA; AKA – Obamacare) was the ability to use Ryan White (RW) Part B funds to purchase and pay private insurance premiums and co-pays for AIDS Drug Assistance Program (ADAP) clients. This, in addition to shifting some clients off of RW and onto state Medicaid programs in those states that expanded Medicaid, allowed state RW programs to shift some expenditures and costs off of their budgets by no longer paying directly for medications and, in some states, treatment costs.

One of the negative consequences of the ACA’s implementation has been the creation and proliferation of so-called “Co-Pay Accumulator Programs” – management tools used by Pharmacy Benefit Managers (PBMs) and other health plans that excludes co-pay assistance coupon and program payments from counting toward patients’ deductibles (Schweitz, 2019). This concept essentially allows insurers and PBMs to accept the payments received from the utilization of these co-pay coupons and Patient Assistance Programs (PAPs), not count those payments toward patients’ deductibles, and later demand and collect additional deductible payments after the co-pay assistance runs out for patients.

This practice has been widely criticized in a time when pharmaceutical prices have been (rightly) deemed out of control, too high, and unconscionable. Patients rely upon these manufacturer coupons, PAP assistance, and other discount programs to reduce the high cost of drug co-pays to as little as $5 or no cost from potentially hundreds of dollars per medication fill.

Photo Source: AIMED ALLIANCE

The current administration has repeatedly promised that it would lower the cost of prescriptions, though it has done little to deliver on said promise. One of the few positive steps it had taken was the announcement in its 2020 Notice of Benefit and Payment Parameters rule that “…co-pay assistance from drug companies must count towards a patient’s deductible and out-of-pocket maximum in most cases.”

That decree lasted about as long as any other policy decree from this administration.

On August 26th, 2019, the Center for Consumer Information and Insurance Oversight (CCIIO) released an FAQ (found here) stating that this rule, set to go into effect on January 1st, 2020, will now not be enforced, nor will states be required to enforce the pro-patient rule, because enforcing it might conflict with rules set forth by the Internal Revenue Service (IRS) that allows High Deductible Health Plans (HDHPs) to not count co-pay assistance toward deductibles.

Photo Source: CMS

So, essentially, the health insurance companies win.  Again.  And again.  And again.

ADAP funds may be used to pay for clients’ co-pays, premiums, or both, depending upon the state, and for those clients who live in states where ADAP only pays for premiums, they may rely upon co-pay coupons to afford their medication co-pays.

To put this in personal terms, my Biktarvy (Gilead) co-pay is $250/month. Because I live in WV, the state covers that co-pay amount. However, if I lived in another state where that wasn’t the case, I could potentially use Gilead’s Advancing Access® Medication Co-Pay Card, which pays $3,600 annually toward co-pay costs. That amount would pay for 14 months of my $250 co-pay, essentially delivering a medication for free for an entire year…unless the PBM that services the insurance plan’s prescription program uses a Co-Pay Accumulator Program, so that none of those medication co-pays count toward my deductible.

For anyone who thinks that this move by the Centers for Medicare and Medicaid Services (CMS) is an accident, don’t kid yourself: this isn’t a glitch; it’s a feature. This administration’s CMS has consistently moved in ways that raise prices and complicate healthcare access for patients, from authorizing (likely unconstitutional) work requirements for Medicaid programs in Arizona, Arkansas, Indiana, Kentucky, Michigan, New Hampshire, Ohio, Utah, and Wisconsin, to changing the way the Modified Adjusted Gross Income (MAGI) – the measurement used to calculate eligibility for assistance programs – is calculated. CMS Administrator, Seema Verma, has consistently ranked high on the Cruella de Vil Scale of Human Empathy, frequently siding against the interests of patients in her administration of federal healthcare programs.

Caught in the middle of this battle between private insurance profits and purported (but undelivered and undeliverable) savings for federal programs is the patient, who has seen their access to medications consistently slip further and further out of grasp. It is time, once again, for Americans to decide which is more important: the value of money or the value of human life. Sadly, I’m not at all confident that we will make the right decision.

References:

• Schweitz, M.C. (2019, January). The Cost-Shift Conundrum of Copay Accumulator Programs. Thorofare, NJ: SLACK Incorporated: Healio: Healio Rheumatology: Practice Management. Retrieved from: https://www.healio.com/rheumatology/practice-management/news/print/healio-rheumatology/%7B04769e45-fca4-4ce6-90be-8f441d6afc7d%7D/the-cost-shift-conundrum-of-copay-accumulator-programs

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.

Helping Young Adults Living With HIV To Transition To Adult Care

By: Marcus J. Hopkins, Policy Consultant

Nearly forty years after the start of the HIV/AIDS epidemic, new and better treatment options have led to a number of changes in the how specific patient populations are managed. Over the past decade, increasing attention has been paid to the growing number of aging patients living with HIV – a prospect once thought unfathomable. Another patient population is also increasing – people born or infected with HIV as children who are becoming adults.

According to the most recent estimates, roughly 39,000 youths aged 13-24 were living with HIV in the U.S. in 2016, with approximately 9,000 new infections occurring in this age group in 2014. 80% of those youth were Men who have Sex with Men (MSM) – 55% Black, 23% Latino, and 16% White. These youths are more likely to have complex anti-retroviral therapy ("ART") regimens with underlying multidrug resistances and may face greater obstacles to achieving functional autonomy (Liggett, 2016).

This patient population may face more obstacles to obtaining and achieving adult care and treatment than adults who contract HIV later in life in no small part because those who contract the virus later in life may be better established as functionally autonomous adults. They are likelier to be living on their own and managing to support themselves when they become infected, whereas youths who are transitioning to adulthood, in addition to securing and maintaining HIV treatment and healthcare services, are going to be facing the additional hurdles that come with becoming an adult: becoming independent, finding employment, finding housing, living on their own. These transitions are difficult for all young adults; adding in the additional stress of living with a chronic illness such as HIV can easily hamper this transition.

Photo Source: Huffington Post

Depending upon their state of residence, young patients living with HIV may be engaged in care with pediatric or adolescent HIV/AIDS care providers. Over the course of their care, they may have formed close bonds with their providers, which can make transitioning over to adult care and self-sufficiency more difficult. Additionally, these patients may also have mental health problems or cognitive impairment, which can make adhering to medical care difficult (Tassiopoulos et al, 2019).

In order to ease the transition from pediatric/adolescent care into adult care while maintaining medication adherence and viral suppression, additional efforts should be provided to help these youths develop social connections and support networks outside of clinical settings, as well helping them develop skills to improve self-management of care.

The first part can be accomplished by introducing and/or linking young patients to local or online support groups and networks for youths living with HIV/AIDS. While the scientific evidence that these groups produce concrete positive results for patients is still developing, early reports indicate that patients who engage with and in in-person or online support groups may develop better social connections, have more positive feelings about their treatment and/or care, better engage in the continuum of care, be more adherent to medication regimens, and achieve and/or maintain viral suppression better than patients who do so without a firm support network in place.

The second part – developing skills to improve self-management – can be more difficult to fulfill, and in the inclusion of pediatric social workers may be beneficial in aiding this transition to adult care:

"When adult medical staff questioned patients about their unsuccessful transition, eight reasons were provided compared with 13 reasons when asked by a pediatric social worker: work (12%); transportation (11%); relocation, which resulted in exclusion from the study (9%); no phone access (9%); difficulty dealing with diagnosis (9%); no reported problems (9%); lost insurance (3%); mental health (3%); incarceration (3%); went to a drug treatment facility (3%); family issues (3%); and domestic violence (3%) (Bortz, 2018)."

Many of these issues are directly related to the patients’ ability to become self-sufficient and maintain self-sufficiency, a task difficult enough for every adolescent transitioning into adulthood, but made more complicated by the added pressure of managing HIV/AIDS. Social workers can help these young patients by linking them to social programs (if available) that can help them to receive assistance for phone service, transportation assistance, mental health services, domestic violence issues, and insurance coverage. There may also exist, in some communities, classes and programs that can help people learn to better manage their time, resources, and finances, which can help lead to better self-management of their HIV.

The Ryan White HIV/AIDS Program (RWHAP) served 23,540 youth and young adults aged 13-24, representing 4.4% of the total RWHAP client base (Health Resources and Services Administration (HRSA), 2019). Of these, roughly 780 have unstable housing conditions and 4,602 have no health care coverage (HRSA).

In my own visits to my HIV clinic, my Ryan White Case Manager always asks me if all my needs are being met, if my housing is secure, if I’m having trouble paying bills, or if I need assistance purchasing food. These resources are available through the various parts of the Ryan White Care Act (depending upon the patient’s location). Utilization of these services can help patients with their transition into adult care.

Because this population is relatively new (meaning, higher numbers within the past decade or so), it’s going to be as difficult to transition these patients into the appropriate care settings as it will be to help aging people living with HIV/AIDS to continue managing their disease as they encounter more geriatric conditions.  The Ryan White Program and ADAP, specifically, can serve a vital role in ensuring that these patients continue to have access to the medications and treatment they need to remain healthy at any stage of life.

References:

• Bortz, K. (2018, October 12). Pediatric social workers may be beneficial in transition to adult HIV care. Thorofare, NJ: Healio: Infectious Diseases in Children: Pediatrics: HIV/AIDS. Retrieved from: https://www.healio.com/pediatrics/hiv-aids/news/online/%7Babb84686-700f-4001-9dda-8b7c9e3a41d2%7D/pediatric-social-workers-may-be-beneficial-in-transition-to-adult-hiv-care

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.

Reflections from an HIV Advocate's Journey: Larry Frampton

By: Larry Frampton, Retired

My journey as an HIV Advocate started in 1989 when my partner got sick and he received an AIDS diagnosis, and I followed with an HIV diagnosis. I quickly learned how bad HIV stigma was as I had to fight the hospital to get him proper care and his family who abandoned him from fear of getting HIV. In his final days he made me promise to do all I could to help others living with HIV. He died in my arms and this was the hardest thing I ever had to face and I was not sure how long I would live.

After this ordeal, I moved to Portland, Oregon where I got on AZT thanks to the AIDS Drug Assistance Program - which was started in 1987 to help people get access to the medications. I got involved with the HIV community, and worked on "death with dignity" issues as we were all watching friends die daily and wanted to control the way we died instead of the slow painful death we watched friends and loved ones go through. I also did home hospice work and held many friend’s hands and made lots of promises to continue to fight as they died.

I found my niche in HIV public policy early on and worked on physician assisted suicide, and helping to get the Ryan White Care Act passed in 1990 - which included continued funding for ADAP’s. During that time, I found myself getting arrested for protesting a few times...including once naked.

In the mid-nineties, I lost a second partner to the virus right before the Protease Inhibitors, a powerful class of HIV drugs came out and literally brought some people back from death’s doorstep. Meds were getting better and people were not dying as fast and many long-term survivors like myself had to then deal mentally with all the death in our lives. I was even diagnosed with PTSD. Advocacy had to be steered at that point to getting people mental health care and help applying for disability.

As the years passed, I was being recruited to speak at HIV Conferences (including the ADAP Advocacy Association's Annual AIDS Drug Assistance Program Conference, as seen in the photo) and Chair Planning Councils and my advocacy had changed from taking on Federal issues to dealing with State Policy Issues. The biggest one is HIV Criminalization laws that were created in the 80’s and early 90’s. States are slowly changing these laws and I took a crack at changing Tennessee’s laws but the political landscape of the state was too much to pass it. I was able to work with other groups to pass a law to help people with HIV prosecuted under the aggravated prostitution law removed the sex offender list. I also assisted with legalizing syringe service programs in Tennessee.

Finally, we still need to fight to keep ADAP’s strong. I recently found myself needing ADAP when I retired and was transitioning into retirement and Medicare. Sometimes people fall into the gaps and that is why we need to keep ADAP’s strong.

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.

Trump HHS Proposes Eliminating Most Non-Discrimination Protections of Section 1557

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

On June 14th, 2019, the Trump administration issued a near complete regulatory overhaul of the Patient Protection and Affordable Care Act’s (ACA) non-discrimination provisions known as Section 1557. The issued proposed rule began a 60-day public comment period, ending on August 13th, 2019.

Photo Source: thompsoncoburn.com

The public may submit comment using the following link to the Federal eRulemaking Portal: https://www.regulations.gov/comment?D=HHS-OCR-2019-0007-0001.

Or by regular, overnight, express mail, hand delivery or courier to the following address:

U.S. Department of Health and Human Services
Office for Civil Rights
Attn: Section 1557 NPRM, RIN 0945-AA
Hubert H. Humphrey Building, Room 509F
200 Independence Ave. SW
Washington, DC 20201

For a background, please visit our previous blogpost here (Laws, 2018): https://adapadvocacyassociation.blogspot.com/search?q=1557.

Stating the Trump Administration’s proposed changes to Section 1557 are a revision would be misleading. A lie actually. The proposed rule seeks to so drastically change the regulatory interpretation and applicable federal agency guidance so much, that one can only adequately describe the changes as eliminating any meaningful sense of protection offered by the Obama Administration’s interpretation.

The case made by the U.S. Department of Health & Human Services ("HHS") for these changes is embarrassingly weak. Relying near exclusively on the Trump Administration’s own refusal to defend the regulation in Franciscan Alliance, Inc. et al v. Burwell, which resulted in an unchallenged injunction issued by Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas and a second ruling from a federal district in North Dakota - which relied on the Franciscan Alliance decision. By taking an intentionally flawed approach, the listed changes would have a wide impact, including eliminating protections affecting transgender people, women, reproductive care in general, people living with HIV, people with disabilities, people who speak and read any language other than English as a primary language, and more. The move builds upon the Trump Administration’s efforts to not only reshape the judicial landscape in a politically motivated fashion but to do so with precise aims, including eliminating the ACA entirely (see Texas v. United States, another Reed O’Connor ruling – this should tell you something about “court shopping”).

If you haven’t read Nicholas Bagley’s Atlantic piece, “Rise of the Know-Nothing Judge”, you really should (Bagley, 2019). This legal philosophy is being leveraged specifically by both the judges hearing the cases and the political appointments seeking to eliminate these necessary protections in healthcare. The story goes fairly simply as “we couldn’t possibly know what Congress was thinking (despite recent and public statements to the fact on certain votes and legislation) because it wasn’t spelled out explicitly and narrowly.” This is an effort to push issues of patient protections (and other issues) to a dysfunctional Congress. This approach also explicitly seeks to push legislation, which by its very nature is not supposed to be prescriptive, into an exceptionally prescriptive design or risk non-enforcement. Overall, the process removes the role of government in regulating and protecting tax payers entirely when applied broadly. This Administration will achieve the goal of eliminating necessary government intervention by weakening public trust and establishing court precedent to inaction.

In the case of a Section 1557 re-write, HHS ignores previous precedents that stretch back 30 years (Price Waterhouse v. Hopkins) to rulings as recent as 2017 (Prescott v. Rady Children’s Hospital) which rely on the plain language of the statue due to previous precedent, not the regulatory interpretation provided by the Obama Administration. HHS goes on further to ignore recent rulings both on issues of sex stereotyping as a form of sex-based discrimination and gender identity as an issue of sex by the nature of gender identity being a part of our medical definition of sex. HHS expands further by stating that even if gender identity were an issue of sex, “Religious Freedom” and its own “Conscience” regulations should allow all entities governed by HHS regulations to deny coverage and care even on the basis sex. As such, that denial of care extends in such a way that would eliminate the pre-existing conditions protections of women in the case of pregnancy history, termination of pregnancy, false pregnancy, and genetic history. Instances of care denial that were routine prior to the ACA’s pre-existing conditions protections requirements.

Kaiser Family Foundation argues the explicit nature of these interpretations including non-protection of sex stereotyping could result in antiretroviral treatment being denied coverage by an insurance company or a provider refusing to provide care to a person living with HIV because of assumed sexual activities with a same-sex partner. The interpretation removes the right of private action so coveted by patient advocates when section 1557’s original interpretation was written; meaning patients would no longer have either an administrative path to seek remedy or an explicit endorsement of HHS to go the path of the courts to seek remedy when harmed by care and coverage denials (Musumeci, 2019).

If this sounds like a wild, wild west situation of health care and insurance structures prior to the ACA, it is. That’s the goal, the campaign promise of Donald J. Trump. While the ACA certainly needs some work, consistently, the American public, regardless of political affiliation has polled support of health care protections the ACA provides. Like a mob thug in sneaking into a back alley, this Administration is using every angle to knee cap the protections afforded by the ACA, with intentional efforts to harm those who need those protections the most.

Lastly, of particular note, HHS states in the proposed regulation, as it has in every other regulatory change affecting civil rights protections, that disparate impact does not equate to intentional discrimination. Having historical data, predictive data that already guides our funding appropriations and distribution that is so pin-point precise the government – nay, THIS Administration relies on some of the very same data to focus funding its own Ending The Epidemic plans (HIV.gov, 2019), how can we not interpret knowingly and intentionally ignoring the same data as “unintentional” when other regulatory moves by this Administration seek to allow providers and insurers to deny care and coverage to PLWH just a whim?

We live in the day and age of Big Data, disparate impact is now intentional impact.

This effort to harm is intentional.

Comment today to ensure your voice is heard! Call your Congress member. Support your patient advocacy organizations by dollar and deed. We’re in a fight for our lives here, one court ruling and one regulation at a time.

References:

• Bagley, Nicholas (2019, July 15). Texas v. United States: Rise of the Know-Nothing Judge. The Atlantic. Retrieved online from https://www.theatlantic.com/ideas/archive/2019/07/texas-v-us-rise-know-nothing-judge/593959/
• HIV.gov (2019, June). Ending the HIV Epidemic: A Plan for America. Retrieved online from https://files.hiv.gov/s3fs-public/ending-the-hiv-epidemic-flyer.pdf
• Laws, Jen (2018, February 22). Trump & HHS Sanction Healthcare Discrimination. ADAP Blog. Retrieved online from https://adapadvocacyassociation.blogspot.com/2018/02/trump-hhs-sanction-healthcare.html
• Musumeci, MaryBeth, et. al. (2019, June 1). HHS’s Proposed Changes to Non-Discrimination Regulations Under ACA Section 1557. Henry J. Kaiser Family Foundation. Retrieved online from https://www.kff.org/disparities-policy/issue-brief/hhss-proposed-changes-to-non-discrimination-regulations-under-aca-section-1557/
• United States District Court for the Southern District of California (2017, October 13). Case No.: 16-cv-02408-BTM-JMA. Retrieved online from https://www.ebglaw.com/content/uploads/2017/10/Prescott-v.-Rady-Children_s-Hospital-San-Diego_-2017-U.S.-Dist.-LEXIS-160259.pdf

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.

STDs and STIs On The Rise Despite Decline In HIV Infections

By: Marcus J. Hopkins, Policy Consultant

"…not that long ago, gonorrhea rates were at historic lows, syphilis was close to elimination, and we were able to point to advances in STD prevention, such as better chlamydia diagnostic tests and more screening, contributing to increases in detection and treatment of chlamydial infections. That progress has since unraveled. The number of reported syphilis cases is climbing after being largely on the decline since 1941, and gonorrhea rates are now increasing. This is especially concerning given that we are slowly running out of treatment options to cure Neisseria gonorrhoeae. Many young women continue to have undiagnosed chlamydial infections, putting them at risk for infertility (Centers for Disease Control and Prevention, 2018)."

The above quote is taken directly from the Foreword of the 2017 Sexually Transmitted Disease Surveillance 2017 report published annually by the Centers for Disease Control and Prevention’s (CDC’s) National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, and it is a damning condemnation of our nation’s abject failure to adequately educate Americans about sexual health.

Photo Source: on health.com

For those of us who grew up in the 1980s and 90s, the threat of becoming infected with HIV was an existential threat, especially if you happened to be a gay male. Being gay was far less accepted, then, as it is, now, and visibility of the LGBT community was largely relegated to punchline status – the wacky gay best-friend of the adorable straight girl; the butch lesbian or transsexual gym teacher; the fruity, yet sophisticated Elder Gay whose surprisingly vast disposable income afforded him a gigantic Manhattan apartment. And then, there was the “Dying of AIDS Gay” – the character who was supposed to teach us all a very valuable lesson about compassion towards people living with AIDS.

In addition to all of this stereotyping, the 1990s also gave us Comprehensive Sex Education (CSE) that included scientifically accurate information about HIV and other Sexually Transmitted Diseases (STDs) and Sexually Transmitted Infections (STIs), as well as scientifically accurate information about sex and pregnancy. I was lucky enough to receive this education at my public schools in both West Virginia and Tennessee, and I can safely say that it was both accurate, and slightly terrifying. But, my generation (which graduated in 2000) may have been the last to receive this kind of CSE.

CSE programs were, and still are, highly controversial in the U.S. The Republican Party, alongside Conservative Democrats, Christian groups, and a bevy of parents who are flummoxed that people other than themselves have or will have sex before marriage have sought to foist Abstinence-Only-Until Marriage (AOUM) sex “education” programs upon America’s school children. Between 1996 and federal Fiscal Year (FY) 2018, Congress has funneled over $2.1 billion in taxpayer dollars into AOUM programs (Sexuality Information and Education Council of the United States, 2018). Every time Republicans seize control of legislation chambers, at both the state and federal levels, funding streams are created for AOUM programs, and every time those programs are introduced into U.S. schools, the outcome is the same: a drastic increase in the number of STDs and STIs.

Despite the best efforts of U.S. local, state, and federal governments, HIV education organizations, advocates, and activists, and nearly forty years of living with the specter of the HIV virus, testing rates for HIV outside of urban areas remains “suboptimal,” according to a report published in a recent edition of the Morbidity and Mortality Weekly Report (Pitasi et al, 2019). This report analyzed testing data from seven states with a disproportionate incidence of HIV infections in rural areas compared to other states (AL, AR, KY, MS, MO, OK, and SC) and found that <40% of the total U.S. adult population had ever been tested for HIV, and that areas of the country where rates of reported HIV infections were high also had high rates of overall HIV testing (i.e. – more people getting tested for HIV resulted in more reported cases of new HIV infections). The converse was also true: in areas where HIV testing rates were lower reported fewer new HIV infections (Pitasi et al).

In the seven jurisdictions where HIV incidence was disproportionate in rural areas compared to those states’ urban areas, even though “ever testing for HIV” rates was lower, those rural areas were still disproportionately impacted by new HIV infections (Pitasi). This disparity indicates the need for much more rigorous testing campaigns, and perhaps locally tailored testing drives to help increase the number of people being tested.

This testing disparity doesn’t stop at HIV, however; testing for every STD/STI is less common in rural and suburban areas, compared to rural areas:

The most common STD in the U.S. is Chlamydia, with 1,708,569 cases reported in 2017 for a rate of 528.8 cases per 100,000 population – a 6.9% increase from 2016. This increase was demonstrated in all regions of the U.S. and among all racial and Hispanic ethnicity groups. Almost two-thirds of cases were among persons aged 15-24, and among women aged 15-24, the rate of infection 3,635.3 per 100,000 (CDC). The second-most common STD is Gonorrhea, with a total of 555,608 cases in 2017 – an 18.6% increase over 2016. The third-most common is Syphilis, with a total of 30,644 cases of Primary and Secondary Syphilis – a 10.5% increase over 2016 (CDC).

Photo Source: ealth.wyo.gov

These numbers are incredibly alarming, not only because they are increasing so rapidly, but because they represent only those cases reported to the CDC. There are potentially thousands more cases of people infected with these STDs who are unaware of them. This represents, again, an abject failure on the part of U.S. federal, state, and local governments to educate Americans about sexual health and disease transmission. The government, however, is not the only party at fault for failing to staunch the bleeding, as it were; physicians have also failed their patients by refusing to include STD/STI testing as part of a comprehensive battery of annual tests.

Recommendations for STD testing in the U.S. are unsurprisingly lax, focusing primarily upon sexually active women and gay and bisexual Men who have Sex with Men (MSM). Sexually active women should be tested annually for Chlamydia; all MSM should be tested annually for everything. Of course, there’s little mention of straight men getting tested, save for a brief mention about annual HIV testing if you have “unsafe sex.”

(Psst - Guess what: if you’re having “unsafe sex,” you should probably get tested annually for more than just HIV. Just a thought.)

Other nations, however, take a far more intelligent approach: once you become sexually active, you should be tested annually for everything…BY YOUR GENERAL PRACTITIONER.

For whatever reason, American physicians rarely question their patients about their sexual activity, and as such, rarely offer testing as part of a comprehensive battery of tests provided. Add into this the populations who either have no family physician, can’t afford visits to the doctor, or simply don’t go, and you’ve got a gigantic pool of sexually active people who have no idea whether or not they are infected with or infecting others with STDs/STIs.

In 2018, a cluster of Syphilis and HIV infections affected at least 125 people, including high school students, in Milwaukee, WI (Causey & Spicuzza, 2018). Walla Walla County in Washington State is currently experiencing a Gonorrhea outbreak (Yazwinkski, 2019). Alaska’s rate of Chlamydia continues to rise (KTVA, 2019). Rock Island County in Illinois is experiencing a Gonorrhea outbreak (Galvin, 2019). These aren’t isolated incidents; they are part of an overall picture that desperately needs addressing.

Beyond just the risk of failing to test and risking the further spread of common STDs and STIs, there is the growing risk of those STDs/STIs mutating to become treatment resistant. We have already seen this manifest in the form of Gonorrhea becoming increasingly resistant to the antibiotic drugs used to treat it. Now, as we begin to see global rates of new HIV infections decline, we are also seeing drug resistant mutations of the HIV virus, particularly in areas of the world where inconsistent access to supplies of medications over the past twenty-plus years has resulted in patients building up resistances to certain older HIV regimens (specifically efavirenz- and nevirapine-based regimens). This has occurred primarily in countries in Africa, Asia, and South and Central America, where supplies may not always be consistent to provide patients with a constant supply of HIV medications allowing them to be compliant with their regimens (World Health Organization, 2019).

It’s time we start taking STD and STI prevention seriously, again, and the first step in doing so is to do away with AOUM sex education, in its entirely. It doesn’t work; it has never worked; it will never work, because it ignores basic human nature and sexuality. People – yes, including teenagers – are going to have sex, whether or not their parents, their churches, or Republicans like it. It’s time to stop pretending that these programs work, and to stop bowing to pressure from organizations that pretend to care about “family values” and parents who insist that their children shouldn’t be “subjected” to CSE. It is time to do what is best for America’s sexual health, critics bedamned.

References:

• Causey, J.E. & Spicuzza, M. (2018, March 06). HIV, syphilis cluster affecting at least 125 people discovered in Milwaukee. Milwaukee, WI: Milwaukee Journal Sentinel. Retrieved from: https://www.jsonline.com/story/news/local/milwaukee/2018/03/06/hiv-syphilis-clusters-affecting-least-125-people-including-high-school-students-discovered-milwaukee/397534002/
• Centers for Disease Control and Prevention. (2018, September). Sexually Transmitted Disease Surveillance 2017. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Retrieved from: https://www.cdc.gov/std/stats17/2017-STD-Surveillance-Report_CDC-clearance-9.10.18.pdf
• Galvin, G. (2019, April 23). Gonorrhea Outbreak Declared in Illinois County. Washington, DC: U.S. News and World Report: Healthiest Communities. Retrieved from: https://www.usnews.com/news/healthiest-communities/articles/2019-04-23/gonorrhea-outbreak-declared-in-illinois-county
• KTVA. (2019, April 23). Alaska’s chlamydia rates still on the rise amid STD outbreaks. Anchorage, AK: KTVA. Retrieved from: https://www.ktva.com/story/40355743/alaskas-chlamydia-rates-still-on-the-rise-amid-std-outbreaks
• Pitasi, M.A., Delaney, K.P., Brooks, J.T., DiNenno, E.A., Johnson, S.D., & Prejean, J. (2019, June 28). HIV Testing in 50 Local Jurisdictions Accounting for the Majority of New HIV Diagnoses and Seven States with Disproportionate Occurrence of HIV in Rural Areas, 2016–2017. Morbidity and Mortality Weekly Report, 68(25), 561-567. DOI: http://dx.doi.org/10.15585/mmwr.mm6825a2external icon
• Sexuality Information and Education Council of the United States. (2018, August). A History of Federal Funding for Abstinence-Only-Until-Marriage Programs. Washington, DC: Sexuality Information and Education Council of the United States. Retrieved from: https://siecus.org/wp-content/uploads/2018/08/A-History-of-AOUM-Funding-Final-Draft.pdf
• World Health Organization. (2019, July). HIV drug resistance report 2019. Geneva, SW: World Health Organization: HIV/AIDS: Publications. Retrieved from: https://apps.who.int/iris/bitstream/handle/10665/325891/WHO-CDS-HIV-19.21-eng.pdf?ua=1
• Yazwinsky, T. (2019, July 31). Walla Walla County experiencing gonorrhea outbreak. Walla Walla, WA: KEPR. Retrieved from: https://keprtv.com/news/local/walla-walla-county-experiencing-gonorrhea-outbreak

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.

Trump Administration Pushes Bad Medicine with Drug Importation

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

Our governing class has increasingly turned to politically expedient, so-called answers to the public policy issues facing our nation. Often they amount to nothing more then convenient sound bites for the cable news network's nightly programs. The high cost of prescription drugs is certainly no different, evidenced by the ongoing push toward drug importation as a remedy. Rhetoric aside the reality remains that drug importation is bad medicine, and it will do nothing to lower the cost of prescription drugs.[1]

Photo Source: NADDI

Earlier this year, we highlighted the dangers associated with drug importation. Prescription drugs imported from our good neighbor to the north do not guarantee that they are safe, and even the Canadian government has acknowledged so. Whereas Canadian manufactured prescriptions drugs are pretty much as safe as the ones made in the United States, there is no guarantee the safety standards can be said for the ones brought into their national boundaries before crossing our border. The Canadian government - along with the Canadian healthcare industry - has also indicated that it cannot adequately supply safe medicines to the United States since many prescriptions drugs face shortages[2] in their healthcare system. These points are conveniently overlooked by the politicians of both parties pushing this bad medicine, as well as most news media reporting on drug importation.

POLITICO reported that in its misguided quest toward allowing drug importation the Trump Administration is considering two pathways. One option would authorize pilot projects thereby granting states, wholesalers or pharmacists the authority to import prescription drugs "consistent with FDA approval" from Canada on a limited basis.[3] The other option would allow drug manufacturers to offer lower prices for imported prescription drugs so long as the domestic and foreign drugs are the same.[4] In either case, it is much easier said than done.

The Canadian Pharmacists Association and the Canadian Medical Association (along with numerous other Canadian healthcare groups) strongly rebuked the proposals and urged the Canadian government to oppose it.[5] Public opinion polling among Canadians is also opposed to drug importation, since there already exist waiting lists to obtain many medicines. And the Canadian government is listening because Prime Minister Justin Trudeau has already promised to protect their nation's drug supply from flooding into the United States.[6]

The Trump Administration has once again demonstrated its "fly-by-the-seat-of-its-pants" style to governing and yet another troubling sign for people living with HIV/AIDS. The Partnership for Safe Medicines - of which our organization is member - characterized the proposals as "reckless and politically-motivated" with little hopes of achieving the intended outcome.[7] We agree!

Click to Watch PSM Ad Warning Against Dangers of Drug Importation

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[1] Acri née Lybecker, Kristina M.L. (2019, June 12). State Pharmaceutical Importation Programs: An Analysis of the Cost Effectiveness. SSRN. Retrieved online at https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3402784.
[2] Shepherd MD (2010, Sept/Oct). The Effect Of US Pharmaceutical Drug Importation On The Canadian Pharmaceutical Supply. Can Pharm J. 143(5):226-33.
[3] Owermohle, Sarah (2019, July 31). Trump administration says it is studying 2 Canadian drug import pathways. POLITCO. Retrieved online at https://subscriber.politicopro.com/f/?id=0000016c-4803-d14f-ad7e-4a5786f50000.
[4] Owermohle, Sarah (2019, July 31). Trump administration says it is studying 2 Canadian drug import pathways. POLITCO. Retrieved online at https://subscriber.politicopro.com/f/?id=0000016c-4803-d14f-ad7e-4a5786f50000.
[5] Obiko, Natalie, and Simran Jagdev (2019, August 1). Trump’s ‘crazy’ drug import plan stirs backlash in Canada. Kennebec Journal. Retrieved online at https://www.centralmaine.com/2019/08/01/trumps-crazy-drug-import-plan-stirs-backlash-in-canada/.
[6] Kirkup, Kristy (2019, August 1). PM pledges access to medication as pharmacists, patient groups fear shortage. CBC. Retrieved online at https://www.cbc.ca/news/politics/drug-shortage-trudeau-justin-us-trump-1.5233591.
[7] Safdar, Shabbir (2019, August 1). Partnership for Safe Medicines Statement on Reckless and Politically-Motivated Drug Importation Proposal. The Partnership for Safe Medicines.