HIV/AIDS Fireside Chat Retreat in Michigan Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Detroit, Michigan among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, June 20th, and Friday, June 21st. Safe Medicines, HIV Criminalization, and the Ryan White HIV/AIDS Program ("RWHAP") were dissected by 24 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:

• Safe Medicines: Combatting the Dangerous Foothold Counterfeit Medicines Have Gained in the U.S., moderated by Shabbir Safdar
• HIV Criminalization: Ending the Stigmatization of the HIV/AIDS Epidemic, moderated by Robert Suttle
• Ryan White Program: Impact to Service Delivery under Trump’s Plan to Eliminate AIDS by 2030, moderated by Jeffrey S. Crowley

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:

• Khadijah I. Abdullah, Founder & Executive Director, RAHMA & National Faith HIV/AIDS Awareness Day
• Marjorie Ambrosio-Whitson, Vice President of Clinical Operations, ScriptGuideRx
• Guy Anthony, President & CEO, Black, Gifted & Whole Foundation
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Olivier Bahizi, Advocate
• Hala Bazzi-Lang, PharmD. RMGO, Local Specialty Registered Store Manager, Walgreens
• Elmer Cerano, Retired & Board Member, ADAP Advocacy Association
• Noel Chavez-Guizar, Clinic Case Manager, Rocky Mountain CARES
• Tori Cooper, Founder & Executive Director, Advocates for Better Care Atlanta
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Chris E. Davis, Attorney, Michigan Protection & Advocacy Service (MPAS)
• Terry-Ann Francis, MPH, Global Professional Relations & Independent Medical Education, Global Medical Affairs, Merck
• Stephen Hourahan, Consultant 
• Lisa Irwin, Senior Manager, Project & Program Management, MagellanRx
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Stephen Novis, Government Relations Director, ViiV Healthcare
• Murray C. Penner, Executive Director – North America, Prevention Access Campaign - U=U
• Ioana Popa-Simil, Advocate
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Josh Robbins, Owner, BNA Talent Group & The BRANDagement
• Shabbir Imber Safdar, Executive Director, Partnership for Safe Medicines
• Robert Skinner, President & CEO, Valley AIDS Information Network
• Robert Suttle, Assistant Director, SERO Project 
• Ian Wendt, Executive Director, HIV Community Operations, Gilead Sciences

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

Safe Medicines:

According to Shabbir Safdar, 2019 has been an interesting year legislatively for the issue of pharmaceutical supply chain safety. Bills to attempt to legislate Canadian drug importation have been proposed in Utah, Colorado, Oregon, Missouri, Florida, Connecticut, and Maine. Bills have passed state legislatures in Colorado and Florida. These proposals attempt to create a pipeline of excess medicine, not needed by the Canadian population, to American patients.

One key question asked was can this work or are these bills actually implementable?

• Does Canada have enough medicine to supply America? There are currently shortages of over 1,700 medicines in Canada. The population of Canada is about 1/10th the population of American. Economists of various sorts say that this will create catastrophic shortages in Canada. [Shepherd, Politico]
• Do Canadians support American drug importation? [ASOP paper]
• What have Canadian and American regulators and healthcare professionals who own parts of the supply chain said about Canadian importation and their role in implementing it?
• What has to happen for a medicine in a Toronto CVS to make its way to an Albany, NY CVS?
• When someone gets hurt, who is liable?

Prior experiments were reviewed, including: What has been the experience of other states that have implemented importation? Did it get used? Does it save money? What has changed about the market since the last programs in 2000-2010?

• Illinois’ iSaveRX: Safety issues, missing inspections, terminated with low utilization
• MN RXConnect: Safety issues, terminated with low utilization
• Maine: No inspections, confirmed counterfeit, overturned in Federal court
• Vermont: Not implemented yet, better savings through Medicaid, Projected savings to insurance companies: $2.61 to $2.82 per member, per month.

Questions over the politics of importation included: What has the rhetoric around these bills been like? Are state legislatures considering safety when passing them? Does spending time or money on legislation like this defer other priorities? Is this more of a soundbite than a real proposal?

During the meeting, some examples were shared of where a patient dollar for a pharmaceutical goes.  An infographic shows the complexity of how money flows in the U.S. healthcare supply chain.

The following materials were shared with retreat attendees:

• Drug Shortages Canada
• Canadian shelves ‘would run dry’ if U.S. imports drugs
• ASOP Paper
• Statements Opposing Drug Importation, 2000—
• Drug Importation, Counterfeit Medications And The Pharmacist’s Liability: A Case Study And Legal Precedent
• 2 Million Counterfeit Pills Found At Organization Sending Packages To US, Europe And Australia

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

HIV Criminalization:

According to some estimates, 14% (or 1 in 7) of all people living with HIV (PLHIV) in the United States, and 20% (1in 5) of Black Americans living with HIV, will pass through a jail or prison every year. Though there is variation state to state, the prevalence of HIV in state and federal prisons in the United States is nearly five times greater than that of the general population.  The factors associated with disproportionate rates of incarceration -- such as drug use, non-conforming sexual and gender identity, mental illness, poverty, or being a person of color – can also augment a person’s risk of contracting HIV. Further, over 30 states have laws in place that criminalize alleged HIV exposure, non-disclosure, or transmission. Many states also apply harsher penalties to sex workers and people who inject drugs on the basis of HIV status. These laws perpetuate stigma of criminality, undercut public health, and disproportionately affect women, people of color, and other marginalized communities.

Photo Source: Queerty.com

Efforts to reform HIV criminal laws are underway across the U.S. In the last year alone, reform was proposed or achieved in several states. The experiences in these states offer numerous lessons:

• Public health buy-in can be critical for success
• The need to draw connection between different advocacy communities, including those focused on HIV, LGBTQ+ rights, mass incarceration, sex workers’ rights and harm reduction. 
• In state legislatures education is critical and support can come from unexpected places. 

While HIV criminal laws must be reformed to address the overrepresentation of PLHIV in the criminal legal system, it is also essential to consider broader drivers of incarceration of PLHIV, including the war on drugs and discrimination against people of color and LGBTQ+ people in housing, employment, and education. Mass incarceration and HIV are linked epidemics, and the systemic injustices that drive mass incarceration also power the continued transmission and increasing prevalence of HIV in marginalized communities. Advocacy efforts, which seek to reform HIV criminal laws without attention to broader community-level factors impacting risk of incarceration for PLHIV are incomplete.

The following materials were shared with retreat attendees:

• Consensus Statement on HIV “Treatment as Prevention” Criminal Law Reform
• Expert consensus statement on the science of HIV in the context of criminal law
• A Call to Action for Racial Justice in HIV Criminal Law Reform
• Michigan Makes Strides in Modernizing HIV Disclosure Law 
• Advancing HIV Justice 3: Growing the global movement against HIV criminalisation
• How College Wrestling Star "Tiger Mandingo" Became An HIV Scapegoat
• HIV Criminalization and Women
• Criminal Laws on Sex Work and HIV Transmission: Mapping the Laws, Considering the Consequences 
• HIV and the criminalisation of drug use among people who inject drugs: a systematic review, Kara DeBeck et al, Lancet (2017)
• Gay Men: It’s Time to Stop Calling the Police on One Another for HIV Non-Disclosure 
• LGBT Policy Spotlight: HIV Criminalization Laws

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

Ryan White Program:

The Ryan White HIV/AIDS Program was discussed, as well as the potential intersection with 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.

The discussion included a summary on the progression from 2010 National HIV/AIDS Strategy to 2015 Strategy to Trump Administration plans. Additionally, it reviewed what is the role of the Ryan White Program and HRSA/HAB leadership in this initiative, as well as what are the opportunities and challenges with this effort?

Photo Source: HIV.gov

There was considerable debate on where the HIV community stands on the EtE initiative, which led to a broader conversation whether it is possible to define the "community" since there are often significant disconnects between national, state, and grassroots opinions.

With ongoing concerns over the current Administration, Ryan White reauthorization was weighed in the context of the current political environment. Yet there was recognition that the program would need to be updated at some point in time. That discussion led to a broader conversation on how is the program addressing emerging or other issues (Rapid Start of ART, HCV Elimination, Opioid/SUD response, STIs, other issues).

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

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

Additional 2019 Fireside Chats are planned in Richmond, Virginia, and New York, New York.

Reflections from an HIV Advocate's Journey: Janine Brignola

By: Janine Brignola, advocate

Thirteen years ago, I was working in a salon, just finding out that I was pregnant. It was the day before my birthday that I took the test because I had this instinctive feeling that I was pregnant and I didn't want to risk a night of celebration in the case that I was. When the result came back positive I was so excited to become a mommy. A couple months into that pregnancy I got a call from my doctors office. They told me I needed to come into the office. I asked them why and they hesitated to tell me but finally did say, “you tested positive for HIV.”

I sat there with every emotion running through my mind, fear, anger, sadness; I was so ignorant about HIV and AIDS I felt defeated. I immediately quit my job thinking I would cut myself and infect someone when cutting their hair. The pregnancy was hard, I had to force feed myself most days and the medicine was hard on my body. There were days I lay in bed and did not get out of it. When the doctors told me I would not pass HIV to my son, I wanted to believe them but I didn't and the day I gave birth I was still scared and didn't believe them that I would not pass the virus to him. That fear scared me to the point I pushed four times and my son was out ( all I could think was I needed to get him out and clear of my fluids), they put him on my chest and I told them no just clean him off first.

The traumatic experience of that birth and pregnancy and the realization after months and then years went by that my son had not gotten the virus from me, the ignorant and fearful stance that I had about HIV all combined with other factors to propel me into a life of advocacy and activism.

When I started out it was me coming from a raw place of anger and my own experiences propelling me forward. I shouted, I yelled and found every way I could to make noise. Blogging, YouTube, public speaking, trips to Washington DC, then being asked to be a board member for ADAP Advocacy Association. When I started with this board my innate sense of activism and raw, loud, uncensored and idealogical perspectives started to slowly develop. I met professionals and politicians that had been in DC for years, activists that had fought their entire lives, scholars, researchers, doctors, academics, and people from all walks of life; across the spectrum. These people guided me and helped me to develop my anger and desire to advocate into an ability to, a tool.

As a child, teen, and young adult I always looked at the world through my own lens but I was unable to see past my own experiences, to empathize with others in the ways most people are able to. I had experienced so many traumatic happenings that no one I knew had and it skewed my ability to empathize for the things others experienced as I viewed them as not being nearly as traumatic. I judged. Time has this way of helping one to evolve if they have an open mind and desire to. The people I met and that were placed into my life through my advocacy and activism opened my eyes to a world I didn't see and had been looking at from a limited and skewed viewpoint.

These wonderful people with experiences as varied as they human, from the likes of Dab Garner to Larry Frampton, Kathie Hiers to Michelle Anderson, Larry Bryant to Robert Suttle, Tami Haught to Maria Mejia, and of course my dear friend Brandon Macsata. The man who helped me by giving me the opportunities of meeting some of these other people and developing past my limited and skewed viewpoint. All of these people and the countless others not named helped me to push past my singularly focused lens to see a world full of people with different experiences and adversities and one commonality that makes us more alike than different; our human condition.

Thirteen years later I still blog to share my own experiences, I teach classes, I vote on issues, I train others to do the same, I speak, I am involved in politics, I work with pregnant women living with HIV or AIDS, and I am finally back to my other passion as a stylist. I use all of my experiences, now, to try to help others; instead of looking at what divides us or the varied experiences and adversities we have I instead look at how each of us teaches and how those differences are so needed. Each of us doing our parts in our own ways! No one of us being more important or necessary and each one of us being vital and needed! I encourage all of us to share and continue to fight this good fight and I cannot wait to met you on the path, and maybe walk with you for bit!



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

Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS

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

According to the National Institute of Mental Health, there are approximately 46.6 million adults in the United States who experience mental health conditions at any time in a given year (2017). People who live with mental health conditions are amongst the most vulnerable populations in our communities. In comparison to the general population, people with mental health conditions are at a higher risk for substance abuse disorders including IV drug use, homelessness, victimization, incarceration, engagement in “unsafe” sexual behaviors, and are more likely suffer from chronic medical conditions (J.Parks, 2006). In 2017, the National Alliance on Mental Illness in conjunction with the National Institute of Mental Health compiled the following data:

• Among 20.2 million adults in the United State who experienced substance abuse; about half of them (10.2 million) were diagnosed with a co-occurring mental illness.
• About 26% of homeless adults living in shelters live with a serious mental illness and 46% are living with a co-occurring serious mental illness and chemical addiction.
• Approximately 20% of state prisoners and 21% of local jail prisoners have a recent history of a mental health condition.
• People who are living with a serious mental illness die on average 25 years younger due to treatable medical conditions.
• Serious mental illness costs Americans $193.2 billion in lost earnings per year.

Photo Source: Patheos

People who are living with a mental health diagnosis have many challenges including symptom management, negotiating the disclosure of their diagnosis due to stigma, access to quality care, training, and education. For individuals who live with mental health conditions, these challenges are significant; yet, for those who have a co-occurring mental health condition and are HIV positive, these challenges can become more difficult to manage. The co-occurrence of a mental health condition and HIV is a public health issue that is important to discuss as it poses challenges for both those who have the diagnosis as well as the persons who are caring for and/or treating them.

Research has found considerable overlap between many mental health disorders and HIV infection. 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). 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). In many cases, people with mental health difficulties are also diagnosed with a substance use disorder, amplifying the challenges of treatment and management of their mental and physical health (Parry, Blank, & Pithey, 2007). The Centers for Disease Control and Prevention found that approximately 1 in 10 new HIV diagnoses were due to IV drug users. Kidorf et al., (2004) conducted a study to identify co-morbidities in heroine users at a Baltimore needle exchange. The research found that over 50% of intravenous drug users had a co-occurring Axis I mental health diagnosis. Along with IV drug use, the abuse of illicit substances has also been linked to the increase risk of “unhealthy” sexual behaviors, both of which are cofactors in the risk of HIV transmission.

Access to care is a significant factor when understanding the comorbidity rates of mental illness and HIV infection. The National Alliance on Mental Illness found that only 41% of adults in the United States who have a mental health condition received mental health services in the past year. Of those who received care, African American and Hispanic Americans only received one half the rate of mental health services than that of Caucasian Americans. Individuals who have a mental illness are a largely disenfranchised and vulnerable population who are at a high risk of HIV infection. Research shows a relationship between serious mental illness and low socio-economic status (SES) as well as an increase risk of HIV transmission among lower SES persons due to the concentration of high risk populations (Parry, Blank, & Pithey, 2007). It is the recommendation of the United States Preventative Task Force, that all high-risk persons are tested for HIV at least annually. However, a recent study by found the following results:

• 6.7% of individuals receiving mental health services were tested for HIV infection. 
• Men were 32% less likely to be tested than women.
• Asian & Pacific Islanders were 53% less likely to be tested than white persons.
• African Americans were 82% more likely to be tested than other race groups (C.Mangurian et al., 2017)

For individuals with a prolonged serious mental condition, the risk of transmitting HIV is greatly increased due to symptoms such as impulsivity, affective instability, and exhibiting poor judgment (D.Moore et al., 2012). Therefore, symptoms can create obstacles to adherence such as disorganized thinking which can make it difficult to follow medical recommendations or paranoia, which could make one fearful of care providers or suspicios of medications. Due to factors such as depression, stress, and treatment adherence, which also hinder the immune system, people with serious mental conditions are associated with a more rapid progression of the HIV infection (Leserman, 2003).

Photo Source: Canadian AIDS Society

It is important for both providers who are treating patients with HIV and those treating patients with mental conditions to be aware of the potential co-morbidity amongst the populations. Through understanding the likelihood of a co-occurring disorder, a provider can be more prepared to partner with their patients and other providers in addressing both conditions and improving their potential for healthy outcomes. It is also important that providers are asking patients if they would like to be tested for HIV as both a concern for the individual and for public health. The research shows that people with mental conditions and HIV are at greater risk for negative outcomes; therefore, we must offer a greater quality of care for patients. Comprehensive care that requires providers to be attentive to both medical problems and mental health needs in order to address the public health concern that both pose.

References:

• Blank, M., Himelhoch, S., Balaji, A., Metzger, D., Dixon, L., Rose, C., Oraka, E., Davis-Vogel, A., Thompson, & Heffelfinger, J. (2014). A multisite study of the prevalence of HIV with rapid testing in mental health settings. Am J Public Health. DOI: 10.2105/AJPH.2013.3016
• Centers for Disease Control & Prevention, “Injection Drug Use and HIV Risk”, March 2019; Retrieved from https://www.cdc.gov/hiv/risk/idu.html
• Kidorf, M., Disney, E., King, V., Neufeld, K., Beilenson, P., Brooner, R. (2004). Prevalence of psychiatric and substance abuse disorders in opioid abusers in a community syringe exchange program. Drug Alcohol Dependency, 74, 115 - 122
• Leserman, J. (2003). HIV disease progression: Depression, stress, and possible mechanisms. Journal of the Society of Biological Psychiatry, 54 (3), 295 – 306
• Mangurian, C., Cournos , F., Schillinger, D., Vittinghoff, E., Creasman, J., Lee, B., Knapp, P., Fuentes-Afflick, E., & Dilley, J. (2017). Low rates of HIV testing among adults with severe mental illness receiving care in community mental health settings. Psychiatric Services, 68, 443-448
• Moore, D., Posada, C., Parikh, M., Arce, M., Vaida, F., Riggs, P., Gouaux, B., Ellis, R., Letendre, S., Grant, I., & Atkinson, J. (2012). HIV infected individuals with co-occurring bipolar disorder evidence pooor antiretroviral and psychiatric medication adherence. AIDS Behavior, 16 (8), 2257 – 2266 
• National Alliance on Mental Illness. (2019). Mental health by the numbers. Retrieved from https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
• National Institute of Mental Health. (2017) Mental Health Information. Retrieved from https://www.nimh.nih.gov/health/statistics/mental-illness.shtml
• Parks, J., Svendsen, D., Singer, P., Foti, M. (2006). Morbidity and mortality rates in people with serious mental illness. National Association of State Mental Health Program Directors. Retrieved from https://nasmhpd.org/sites/default/files/Mortality%20and%20Morbidity%20Final%20Report%208.18.08.pdf 
• Parry, C., Blank, M., & Pithey, A. (2007). Responding to the threat of HIV among persons with mental illness and substance abuse. Current Opinion in Psychiatry, 20, 235 – 241
• United States Preventative Services Task Force (2019). Human immunodeficiency Virus Infection: Screening. Retrieved from https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/human-immunodeficiency-virus-hiv-infection-screening#consider

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.

2019 HealthHCV State of HCV Health National Survey!

By: Brian Hujdich, Executive Director, HealthHIV

HealthHCV is fielding the 2019 HealthHCV State of HCV Care National Survey(TM). This annual survey reaches providers nationwide, including hepatologists, gastroenterologists, infectious disease specialists, HIV care providers, primary care providers, and others screening for and/or treating hepatitis-C. The 2019 survey, developed with input from viral hepatitis advocacy groups, payers, and HCV care providers, builds on the findings from HealthHCV’s inaugural Report on the State of HCV Care, based on a survey of almost 200 prescribing providers involved in HCV care. The inaugural survey formed some of the first data points regarding the provision of HCV care and treatment in the U.S.

While advances in HCV cure therapy have led to improved survival rates for patients with cirrhosis, reduced health care costs, and a reduced need for liver cancer surveillance, a more comprehensive approach to HCV care is needed to curb the epidemic, especially as the opioid crisis continues to fuel increases in new infections.

The State of HCV Care is integral to understanding and improving current HCV care and prevention efforts, as well as shaping advocacy and policy needs. There are currently few efforts to collect information on hepatitis C (HCV) care and treatment in the U.S., and these survey results serve as some of the first national data points regarding provision of HCV care. The data collected from this survey provides an opportunity for those on the front lines of HCV care to cite challenges and barriers to providing necessary services. This year’s survey will evaluate the latest impacts on HCV screening practices, treatment access and reimbursement, barriers to care, provider training needs, and integration and coordination of HCV services with behavioral health and substance use treatment.  

Your feedback is critical to shape national HCV advocacy, education, and training in 2019 and beyond that contribute to ending the HCV epidemic! In order to take the survey please press HERE.

About HealthHCV: HealthHCV’s unique role in evaluating national provider needs helped shape a robust suite of current education offerings on HCV, including the 20x20 Initiative: Increasing HCV Screening and Linkage to Care by 2020 and Addressing the Evolving Opioid and HCV Epidemics Through Community Engagement and Education.




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.