Reflections from an HIV Advocate's Journey: LaDonna Boyens

By: LaDonna Boyens, Super Advocate

I am a super advocate, because if advocacy is speaking from one's truth, then my advocacy journey has and will be ongoing. Even at 52 years old, I experience growing pains. In my HIV advocacy journey there is so much to be done to help PLWHA and there are only so many hours in a day, in a week, etc., but if we are honest with ourselves, we live it as long as we live. I could give you facts as a testimony and give you lots of statistics, but truth be told I want you to learn with me. Advocacy is my life, to stand up for what I truly believe is right and fair, and be a voice for the voiceless.

My mom use to tell me I have a big mouth and my family is so proud that I am using my power for good and not evil (hence the "super advocate" statement). It truly is a calling that you need to walk and accept it with HIV-related STIGMA holding so people back, I just want you to know not to let a diagnosis keep you down or to live in a broken state-of-mind.  I am here waiting to embrace you, as are so many others. I am HIV positive and to tell the truth, I am different, but for me I love being different and making a difference.

Over the years, my advocacy journey has allowed me to work with Philadelphia FIGHT to help connect others to community resources. I have been involved with the Positive Women's Network (PWN), because women need a collective voice in our fight against the epidemic. And I've attended several national conferences hosted by the ADAP Advocacy Association in Washington, DC. Each experience has opened me to new colleagues, and new advocacy tools.

There has been so many leaders and soldiers that aren't with us in the physical anymore so I truly let those that are still here know how important they are to me and others. Sometimes personality gets in the way of the work including mine, but I remind myself, it is bigger than my hurt feelings or my bruised ego and continue to let people know we are HIV/AIDS diagnosed we count, we matter, and we are still here. The fight still remains so I want to encourage you to remain. Don't quit, hang in there when you get weary of doing good, do a little more, roll up your sleeves and go at it again and I will be there with you.  We are not victims! We are victorious!  If you can be anything please be kind! As advocates we will be the change makers of tomorrow. So my request is that you invest in us today.




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..

HIV/AIDS Fireside Chat Retreat in Virginia Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Richmond, Virginia among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, September 12th, and Friday, September 13th. Medicaid Expansion, Ryan White HIV/AIDS Program ("RWHAP"), and Patient Assistance Programs (PAPs) were dissected by 23 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Medicaid Expansion: Implications for Access to Care & Service Delivery for PLWHA in Virginia — moderated by Dr. Kathleen A. McManus, Department of Medicine,University of Virginia
• Ryan White Program: Impact to Service Delivery under Trump's Plan to Eliminate AIDS by 2030 — moderated by Jeffrey S. Crowley, O'Neill Institute for National and Global Health Law, Georgetown Law
• Access to Care: How Patient Advocacy Groups & Patient Assistance Programs Fill Treatment Gaps for PLWHA — moderated by Alan Richardson, Patient Advocate Foundation

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:

• Carnelle Adkins, Lead Case Manager, Capital Area Health Network
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Dawn Patillo Exum, Director, Public Policy, MERCK
• Kathie Hiers, President & CEO, AIDS Alabama
• Lynea Hogan, Virginia Consumer Advocate
• Lisa Johnson-Lett, Treatment Adherence Specialist /Peer Educator, AIDS Alabama
• Diana Jordan, Director of Disease Prevention, Virginia Department of Health
• Darnell Lewis, Local Coordinator ACCELERATE, TCC Group
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Kathleen McManus, Physician, University of Virginia
• John Minneci, Regional Account Executive, ViiV HealthCare
• Herminia Nieves, Assistant Director of Medication Access, Virginia Department of Health
• Theresa Nowlin, Massachusetts Consumer Advocate
• Juan Pierce, Virginia Consumer Advocate
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Josh Robbins, Owner, BNA Talent Group & The BRANDagement
• Kimberly Scott, Director of HIV Care Services, Virginia Department of Health
• Matt Sheffield, Director, Government Affairs, Thera Technologies
• Robert Skinner, President & CEO, Valley AIDS Information Network
• LaWanda Wilkerson, North Carolina Consumer Advocate
• Marcus Wilson, National Policy & Advocacy Director, Johnson & Johnson
• Jennifer Zoerkler, Executive Director, VHO

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

Medicaid Expansion:

Dr, Kathleen McManus summarized how Medicaid expansion under the Affordable Care Act has played a major role in the uninsured rate declining from 18% to 14% among people living with HIV/AIDS. In Medicaid expansion states the decline was event more visible, down from 14% to only 7% (with Ryan White clients classified as uninsured clients). In Virginia, for example, Medicaid eligibility was one of the most restrictive programs in the nation.

That said, barriers remain under Medicaid expansion. Sometimes more restrictions exist under Medicaid, such as closed drug formularies (often times more restrictive than ADAP drug formularies), mail-order pharmacy requirements, or providers being out-of-network. The ongoing challenges also remain with insurance carriers dropping plans under the ACA's marketplace. Some potential strategies to combat challenges created by the uncertain insurance market included state health departments leveraging existing relationships with insurance carriers, as well as increasing peer-to-peer education. The National Alliance of State & Territorial AIDS Directors ("NASTAD") has made available several important resources to help state health departments and Ryan White Programs navigate the Medicaid expansion landscape.

Medicaid expansion in Virginia has raised some important questions, including transitions for existing ADAP clients, access to care with Medicaid Managed Care Organizations, and upcoming Medicaid work requirements. “The Graying of HIV” was central throughout the Medicaid expansion discussion.

The following materials were shared with retreat attendees:

• Kaiser Family Foundation: Medicaid and HIV
• The Body: What Medicaid Work Requirements Might Mean for People With HIV
• Daily Press: It will be years before Virginia Medicaid program makes people work, and Republicans aren’t happy (May 22, 2019)
• HIV/AIDS Bureau Policy: Clarifications Regarding the Use of Ryan White HIV/AIDS Program Funds for Health Care Coverage Premium and Cost Sharing Assistance

The ADAP Advocacy Association would like to publicly acknowledge and thank Kathleen for facilitating this important discussion.

Ryan White Program:

The Ryan White HIV/AIDS Program was discussed as a follow-up to the Michigan Fireside Chat, mainly as it relates to the Administration's plan to End the Epidemic by 2030 (EtE) initiative. As a foundational point for this discussion, some important facts were shared on why is the Ryan White Program needed if people with HIV have health insurance coverage, especially its role in leading the way in getting people with HIV virally suppressed by ensuring stable access to HIV primary care and medication, along with critical support services. Some of the issues touched upon included the impact of the uneven Medicaid expansion landscape from state-to-state, ADAP-funded insurance premium assistance, and mental health.

The EtE's targeted approach focuses on 46 counties in the United States, which account for over half of the new infections (there are over 3,000 counties nationwide). It was widely recognized that the plan does include a significant down payment to fund the initiative, but concerns linger over the ongoing assault on the Affordable Care Act. The Administration's plan also provided the opportunity to evaluate the ongoing rise in sexually transmitted diseases, which include worrying trends (22% increase in Chlamydia, 67% increase in Gonorrhea, and 80% increase in Syphilis). Additionally, PrEP was discussed as a way to improve population-level outcomes.

Photo Source: CDC

Finally, there was considerable discussion over the emerging controversy surrounding the use of cluster detection to pinpoint HIV hotspots. Whereas many health departments and public health professionals applaud using cluster detection (described as a tool), many patient advocates and people living with HIV/AIDS are increasingly alarmed over it. Emerging concerns include privacy, stigma, and criminalization.

The following materials were shared with retreat attendees:

• What is ‘Ending the HIV Epidemic: A Plan for America’?
• HRSA Congressional Justification, FY 2020: See Ryan White Program section, pages 228-265
• ACHIEVING SUFFICIENT SCALE OF PrEP USE IS CRITICAL TO ENDING THE HIV EPIDEMIC
• THE US STI CRISIS
• USING CLUSTER DETECTION TO END THE HIV EPIDEMIC

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Patient Assistance Programs:

Earlier this year the Patient Advocate Foundation ("PAF") blogged about Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience, which summarized two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress. These surveys provided an important backdrop of this discussion about patient assistance programs ("PAPs").

The complexity of the nation's healthcare system and safety net programs often create "gaps" and the potential for patients to fall through them, thus losing access to timely, appropriate care and treatment. PAPs often provide the necessary resources to fill many of the care and treatment gaps. Some of the programs discussed included co-payment relief programs, case management services, and patient navigator programs.

Photo Source: PAF

Questions asked included what are manufacturer free drug programs and how do they operate, what are Coupon Cards and how do they work, and what is the difference between a manufacturer free drug program and charitable co-pay programs? Aside from the services provided by PAF, other patient resources offered by different organizations were also discussed, including the PAN Foundation, NeedyMeds, and PhRMA.

The following materials were shared with retreat attendees:

• Who Provides Patient and Health Advocacy?
• Ten Key Skill Sets of Health Care Advocates
• How a Patient Advocate Helps You Navigate the Medical System
• Patient advocates’ role expands to meet healthcare’s increasingly complex demands
• Patient Advocacy for Beginners
• HIV, AIDS & Prevention CareLine
• Hepatitis C CareLine

The ADAP Advocacy Association would like to publicly acknowledge and thank Alan for facilitating this important discussion.

Additionally, a special thank you is extended to Diana Jordan, Kimberly Scott and the entire Virginia Department of Health for their assistance during our stay in Richmond, VA.

Additional 2019 Fireside Chats are planned in New York, New York.

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.