Reflections from an HIV Advocate's Journey: Nancy Duncan

By: Nancy Duncan, HIV Peer Educator

My HIV advocacy journey has been twenty plus years in the making, and one I never thought I’d see. I contracted HIV 34 years ago and was very ill for many years. Death loomed over me for several years after my diagnosis in 1990, and I didn’t think I was going to make it. However,  I managed to hang on long enough for the new antiviral medications that came out in 1996 and they saved my life!

I was so grateful to have been given another chance at living, so I wanted to give back in some way and it was now my time to step up and help make a difference in my community. I started by sharing my story in high schools in 1998, and then became trained to be a peer educator. Then I discovered a whole network of advocacy on Long Island, New York when I started attending the Consumer Involvement Committee meetings sponsored through the Nassau/Suffolk HIV Health Services Planning Council of which I have been a member since 2007 to present. I’ve done many legislative visits on Long Island to advocate about the needs of people living with HIV and how important the Ryan White funding is for those who are not insured or under insured.

Both POZ Magazine and A & U Magazine took an interest in what I do at Planned Parenthood of Nassau County, where I’ve worked as a peer for 15 years now and did articles about my story of living with HIV, my advocacy and everything else I do. I was proud to be on the cover of POZ magazine since I have no shame about living with HIV. We need this stigma needs to end!  I became a POZ 100 honoree as a long- term survivor that same year and have since been honored with several other awards.

I’ve attended many HIV related conferences, including the ADAP Advocacy Association's Annual Conference for several years now, and I’ve brought back so much valuable information that I always pass along. It’s been such a privilege to meet and network with so many other amazing advocates from all over the country, many of whom have inspired me immensely and have helped my journey blossom. This year, I also received a scholarship to attend HealthHIV's Synchronicity in Washington, DC.

People living with HIV know best what is needed to maintain a good quality of life and advocating to secure our rights for ourselves and one another can help make that happen. Those of us who are willing to put our faces out there can inspire others and help them feel less stigmatized. My message here is to let others know that living with HIV is not the end of the world and there are so many ways we can spin this around and make a difference, even if it’s just a small one. Advocates speak on behalf of all people living with HIV and are the voice for those who cannot speak for themselves.   Advocacy may seem intimidating at first but there are many ways we can get involved right in our own communities. Every voice counts and every voice matters when it comes to saving our lives.    People ask me why I do so much, well it’s because for now I can and for that I’m grateful.




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.

AIDS Survivor Syndrome & Understanding the Linkages between Mental Health and HIV/AIDS

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

In the early years of monotherapy treatment, a person living with HIV at the age of 20 had an additional life expectancy of 11.8 years (Gueler, A., Moser, A., Egger, M. et al., 2017). Gueler et al. (2017) reports that since the introduction of the combination antiretroviral treatment, that number has risen to a life expectancy of 54.9 years. As medical treatments continue to increase the survival rate among people living with HIV/AIDS, we must continue working to understand the psychological challenges the infection has on ones mental well being. We are often familiar with the physical and medical aspects associated with HIV/AIDS, however, the social and psychological factors are equally important as they can shape the experience of what it is like to be a person living with HIV (Roger, K., Mignone, J., & Kirkland, S., 2013).

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. During a cross sectional survey in 2003 researchers found that more than 1 in 3 people who are living with an HIV infection have also been diagnosed with Major Depressive Disorder. While there is a significant amount of individuals who are diagnosed with a co-occurring mental health condition and HIV/AIDS fewer than one half of depression cases get recognized clinically in people with HIV (Asch, S., Kilbourne A., Gifford A., et al., 2003). Asch et al.,(2003) also found that individuals with a co-occurring mental health diagnosis of depression and an HIV infection only get treated 18% of the time for their depression, 7% get treated adequately, and only 5% achieve remission. This means that 82% of people who are dually diagnosed with HIV and depression do not receive treatment for their depression.

There are 1.6 million people in the United States living with HIV/AIDS with over half of them aged 50 or older and an expectation that  it will rise to 70% by 2020 (T.Anderson, 2016). Tez Anderson (seen below), Founder of Let’s Kick ASS, an AIDS Survivor Advocacy Group coined the term AIDS Survivor Syndrome (ASS) to describe the “spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic.” People who are living with HIV/AIDS face a historically unique set of barriers including complicated bereavement, trauma, guilt, loss of relationships or community, and increased risk of depression, suicidality, and social withdrawal (Nord, 1996). One of the factors that distinguishes the trauma of someone living with HIV/AIDS from other tragedies or disasters, is the ongoing impact the infection has on a survivor, ultimately leading to further traumatization. Many people living with HIV/AIDS encounter losses that impact their sense of identity such as assumptions about life, future expectations, self-esteem, and security (Nord, 1997).

Photo Source: NBC's Today Show

Many long term survivors report differing beliefs about why they outlived their peers including the will to live, a healthy lifestyle, support from others, particular treatments, and clinical interventions such as psychotherapy (Sally, 1994). Researchers conducted an 8 site US study consisting of 803 people living with HIV and a co-occurring mental health condition and found that only 59% of individuals were receiving any mental health treatment (Weaver, Conover, Proescholdbell, Arno, Ang, Ettner, 2008). In the same study, Weaver et al. (2008) found that among their participants who were dually diagnosed with a mood disorder, only 40% of them were taking an antidepressant. People who are living with HIV are 2 to 3 times more likely to have depression and anxiety (Mascolini, 2016). Results from the US Women’s Interagency HIV Study (WIHS) (2005) found that women with chronic depressive symptoms had a 70% higher risk of AIDS related death than women with who expressed little to no symptoms of depression. WIHS (2005) also found that receiving mental health services halved the risk of AIDS related deaths in participants.

Through the integration of mental health into HIV/AIDS programs and initiatives, we have the opportunity to improve the overall health and outcomes of people living with HIV/AIDS. Direct care professionals are often not skilled in identifying symptoms of a mental health condition nor are they prepared to take action for referrals, management, or additional assessment. Training healthcare providers in the assessment and treatment of common mental health and substance use disorders as well as completing referrals to specialized services must be a part of the infrastructure of our healthcare system. By combining routine depression screening, provider training, proper supervision, and a closer relationship between mental health, substance use, and HIV/AIDS services we can work toward stabilizing the medical and physical symptoms while beginning to address the long term effects of living with HIV/AIDS.

Organizations such as Let’s Kick ASS, Elizabeth Taylor 50 Plus Network, and The Liberation Institute are taking a proactive step in providing services and research for long term survivors of HIV. Tez Anderson, founder of Let’s Kick ASS has led the way to understanding and treating ASS by working to increase research, dedicating June 5th as Long Term Survivors Awareness Day, and offering networking and wellness events in both Miami and New York as well as other cities. Elizabeth Taylor 50 Plus Network in San Francisco also offers support groups to both HIV positive and negative bisexual, gay, and transgender men over 50. They also offer weekly social events, health and wellness learning events, and community service projects. The Liberation Institute is another great example of organizations who are taking a stand for long term survivors of HIV/AIDS. They are a  not for profit mental health organization that offers psychotherapy, professional counseling, yoga, and meditation as well as other groups on a sliding scale basis.

Photo Source: POZ.com

While offering in person services is incredibly important, it is also important to increase as much access to support and information related to HIV/AIDS as possible. That’s why organizations such as the Well Project have created interactive online communities to increase awareness and access to support and information about HIV/AIDS. The Well Project is a not for profit organization that focuses on women and girls with the mission to change the course of the HIV/AIDS pandemic. They offer free online accounts where members can develop a profile and interact with other members through developing communities, joining/creating groups, sharing research/information, and connection to further in-person and online resources as well as group and private chats. Understanding the unique needs of the aging population living with HIV is crucial to developing effective treatments that will increase both life expectancy and overall well being.  HealthHIV has recently developed the Inaugural HealthHIV State of Aging and HIV Survey in order to assess the needs of people living with HIV/AIDS that are over 50 years of age. This survey will allow researchers to create informed medical and consumer education while also addressing the coordination of care for people living with HIV/AIDS.

For people who are HIV positive or are in need of testing or services, HIV.gov offers many tools to identify and connect you with providers and organizations within your zip code. You can find your state HIV/AIDS hotline, a toll free hotline connecting you with local agencies that can help identify what services you are eligible for and assist you in attaining them. HIV.gov also offers a link to the American Academy of HIV Medicines Referral list where one can search a directory of healthcare providers that specialize in HIV management and prevention while also identifying the different types of care settings.

According to the World Health Organization (2019) more than 70 million people have been infected with HIV since the beginning of the epidemic and about 35 million have died of HIV. The challenges surrounding HIV/AIDS are complex and they will take a unified effort to overcome. We can each play a part in the battle of HIV, whether that is by joining your local AIDS walk, participating in research such as the HealthHIV State of Aging and HIV survey, or joining community awareness and prevention projects.

References:

• Anderson, T. (2016). What is AIDS survivor syndrome? Retrieved: https://letskickass.hiv/what-is-aids-survivor-syndrome-dc0560e58ff0
• Asch SM, Kilbourne AM, Gifford AL, et al. (2003) Underdiagnosis of depression in HIV: Who are we missing? Journal of  General Internal Medicine. (18); 450-460
• Bacon, M., Viktor, W [...], and Mary A. Young. (2005)The women's interagency HIV Study (WIHS): An observational cohort brings clinical sciences to the bench. American Society for Microbiology, (9), 1013 - 1019
• Cook, J., Grey, D., Burke, J., et al. (2004). Depressive symptoms and AIDS related mortality among a multi site cohort of HIV positive women. American Journal of Public Health. (94) 1133 – 1140
• Gueler A, Moser A, Calmy A, Günthard H, Bernasconi E, Furrer H, Fux C, Battegay M, Cavassini M, Vernazza P, Zwahlen M, Egger M.(2017). Swiss HIV Cohort Study, Swiss National Cohort. Life expectancy in HIV-positive persons in Switzerland: Matched comparison with general population. US National Library of Medicine. 31(3):427-436. doi: 10.1097/QAD.0000000000001335
• HIV.GOV (2019). US Statistics: Fast facts. Retrieved: https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics
• Horberg MA, Silverberg MJ, Hurley LB, et al. (2008) Effects of depression and selective serotonin reuptake inhibitor use on adherence to highly active antiretroviral therapy and on clinical outcomes in HIV-infected patients. Journal of Acquired Immune Deficiency Syndrome.47, 384-390
• Mascolini, M. (2016). High depression rates with HIV and its scathing clinical impact. Retrieved: https://www.thebodypro.com/article/high-depression-rates-with-hiv--and-its-scathing-c
• Murrell , D. (2019). Facts about HIV: Life expectancy and long-term outlook. Retrieved:  https://www.healthline.com/health/hiv-aids/life-expectancy
• Nord, D. (1997). Threats to identity in survivors of multiple AIDS related losses. American Journal of Psychotherapy, 51 (3)
• Nord, D. (1996). Issues and implications in the counseling of survivors of multiple AIDS related loss. Death Studies. 20, 389 - 414
• Roger, K., Mignonette, J., & Kirkland, S. (2013). Social aspects of HIV/AIDS and Aging: A thematic review. Canadian Journal on Aging. 32 (3), 298 – 306 doi: 10.1017/S0714980813000330
• Sally, J.(1994). Psychosocial issues of AIDS long term survivors. Families in Society. 75, 6, 324
• Weaver, M., Conover, C., Proescholdbell, R., Arno, P., Ang, A., Ettner, S. (2008). Utilization of mental heath and substance abuse care for people living with HIV/AIDS, chronic mental illness, and substance abuse disorders. Journal of Acquired Immune Deficiency Syndrome. 447, 449 – 458
• Weber, R., Ruppik, M., Rickenbach, M., Spoerri, A., Furrer, H., Battegay, M., Cavassini, M., Calmy, A., Bernasconi, E., Schmid, P., Flepp, M., Kowalska, J., Ledergerber, B., et al. (2012) . Decreasing mortality and changing patterns of causes of death in the Swiss HIV Cohort Study. Retrieved: https://doi.org/10.1111/j.1468-1293.2012.01051.x
• World Health Organization. (2019). Global health observatory (GHO) data. Retrieved: https://www.who.int/gho/hiv/en/

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.

Workplace Opportunities for People with Disabilities...Including PLWHA

By: Joyce Bender, President & CEO, Bender Consulting Services Inc.

Today, more than ever, it is important for people with disabilities to be knowledgeable about opportunities in the workplace. As we approach the 29th Anniversary of the signing of the Americans with Disabilities Act (ADA), we know that while some great changes have happened in our country, when it comes to the area of employment, the needle has moved very little. The unemployment rate for people with disabilities remains higher than that of any other group in America, with it being twice that of people without disabilities, with approximately 70% of people with disabilities falling outside the labor force.

Photo Source: multiplesclerosisnewstoday.com

With over 20 years of experience focused on disability employment opportunities, hosting an internet, talk-radio show on disability issues, Disability Matters, and traveling with the U.S. State Department to other countries to talk about disability employment issues, I have come to know one truth – stigma is what stands between people with disabilities and competitive employment. Stigma is an insidious thing that infiltrates even the most open-minded of people, when it is reinforced by years of being presented as ‘truth.’ It affects how family members and friends treat their loved ones, how societies interact with and communicate with their citizens, how educators and employers view their students’ and applicants’ potential, and often even how people with disabilities view themselves. Stigma creates a divide that touches everyone and mars the perception of people with disabilities.

This is true for people with visible and hidden disabilities. I am a woman living with epilepsy and a hearing loss. I have had people come up to me many times, to tell me how sorry they feel for me or assure me that they could never tell that I have ‘something wrong with me.’ It is stigma that causes these reactions of others when they learn I have a disability. In one of my trips with the State Department, a story was shared with me that I will never forget; in their country, not long ago, when a person with epilepsy had a seizure in public, the spot where they fell when experiencing convulsions would be outlined so that others in society would know that they should avoid stepping in that area, in case they might catch epilepsy. It is not true that a person can catch epilepsy from another, let alone do so by stepping where a person had a seizure; yet this myth was perpetuated in this culture by long standing actions of its people. While they no longer do this, the stigma surrounding epilepsy remains. People with epilepsy are not seen as equal to other members of society.

In the United States, we see similar legacies of stigma affect how we interact with our citizens with disabilities. Societal myths, long debunked through science about people with disabilities, still feed bias about how people with disabilities are viewed. Historically, people with disabilities have been viewed through a ‘medical model.’ This model of viewing people with disabilities is focused on diagnosis, symptoms, and cure of the disability and does not address ‘quality of life.’ It wasn’t until the 1900’s that a movement started to reevaluate that mode of thinking and began building a ‘social model’ that addresses how people with disabilities are viewed as a culture within our society. Even today though, many still cling to that medical model mentality, and miss the strengths, talents, and contributions of our citizens with disabilities.

For people with non-visible disabilities like me, including those who have mental health disabilities, people living with HIV, cancer survivors, people living with Crohn’s, individuals with neurodiverse backgrounds and people living with heart disease or diabetes, we are told to hide our disability and disassociate with the disability community. This advice, we are told, is to protect us, but it also silences us, removes our sense of community and isolates us. The behavior of society promotes feelings of shame and a lack of self-efficacy. I believe it is important to embrace those things that define us, to demonstrate through our actions and our character who we are and what it means to be a person with a disability. It is important to feel pride in our successes, persevere over those who wish to hold us back, and remain diligent in protecting our rights and the rights of others who share in our community.

There are things happening in America right now that I believe have the potential to change the trajectory for employment success for people with disabilities in our country. That change in mentality is one that I have been sharing with my customers and colleagues for years: hiring people with disabilities makes good business sense. Just like any other social group in our country, the disability community is filled with talents that have the potential to positively impact the bottom line of a company.

Due to leadership from Ted Kennedy, Jr., Disability:IN and AAPD, the Disability Equality Index (DEI) has already made strides toward educating employers on the benefits of accessing this talent pool. This survey allows a company to evaluate their disability inclusion practices and policies to determine success and areas of improvement. Studies on corporate participants of the DEI have shown that employers who have excellence in disability inclusion within their organization outperform and make more money than their counterparts who are not hiring people with disabilities. In response to this study, investors responsible for billions of dollars in the United States are asking companies what their plan is for inclusion of people with disabilities in the workforce.

The release of the DEI study by Accenture, on companies employing people with disabilities quickly followed announcements from OFCCP that for the first time disability inclusion and adherence to 503 would be a part of focused reviews that are even now being conducted in the United States. What do these 503 Focused Reviews mean? It means that companies who receive federal funding or hold contracts supporting or servicing federal agencies will be asked to account for their activities with regards to disability hiring affirmative action regulations. Failure to comply with Section 503 can mean loss of funding for federal contractors.

What does this mean for people with disabilities? It means that more and more companies are going to be looking to be inclusive of individuals with disabilities in the workforce as they understand the benefits of hiring people with disabilities as well as the potential revenue loss of not complying with OFCCP regulations. It means that disability hiring will be directly related to profit, with companies who are not hiring people with disabilities left behind.

For people with disabilities, now is the time to act in identifying disability friendly employers and opportunities for advancement for people with disabilities. Knowing how to identify employers with disability hiring programs and companies established success in hiring and inclusion of people with disabilities is the first step.

To get started, I recommend accessing the DEI’s list of Best Places to Work for Disability Inclusion. This list shows companies who received a score of 80 or higher on the DEI. Use this as a starting point to identify companies that are practicing excellence in disability inclusion. Take time to research these companies online to learn more about which companies fit with your personal beliefs and values and to learn more about what opportunities they have that may match with your personal career goals.

When researching the company and considering employment with the organization, ask questions that let you know more about the culture of the organization. Do they have a public diversity statement that includes disability? Do they have an employee resource network that includes resources that fit with your interests? Is there a disability group within that network? What philanthropic endeavors do they support? Are there opportunities to become involved in supporting those organizations or issues you are most passionate about? Is disability a part of this initiative? Does the company support supplier diversity, including certified disability-owned businesses?

It is important for people with disabilities to be aware of options available to them with regards to accommodations and workplace solutions some employers make available to their employees with disabilities, especially for employees with non-visible disabilities like HIV. When it comes to making accommodations, it falls to the employee to initiate these discussions in most organizations. Being knowledgeable about some of the industry best practices in this area can help an employee who has gained a disability or is looking to reenter the workforce to navigate these conversations successfully.

Some common accommodations that companies may consider that meet the needs of individuals living with HIV include:

Ergonomic Workspace
For individuals dealing with fatigue or whose disability has impacted their mobility or stamina may find an increase in productivity by ensuring their workspace allows for them to have extra supports. This could include a sit-stand desk, ergonomic mouse or keyboard, or a stand-lean stool.

Lighting & Magnification
Providing lighting that decreases eye strain is a common accommodation for people whose disability affects their vision. This could be providing access to more natural lighting, covers for fluorescent light tubes, blinds or shades that can be adjusted by the employee, glasses that block blue lights, or the ability to adjust screen lighting on computer or tablet screens.

Some amount of screen magnification is often built into computers. Working with technical support can optimize these functions for an employee. Additional tools and software can also be a resource for an employee who is experiencing vision loss.

Workspace Personalization
Many companies will allow some amount of workspace personalization to accommodate a variety of needs of their employees with disabilities. Some common items that employees have set up in their cubicles or office space have included small, personal refrigerators to store food items to meet specialized dietary needs and prevent cross-contamination with coworkers’ foods, space heaters, electric blankets or portable fans for individuals who are sensitive to temperature change, and air cleaners or purifiers for people who have respiratory considerations.

Job Sharing or Schedule Flexibility
Another practice that some employers are using is to allow employees to job share or work flexible schedules. In these instances, the employer will typically identify core hours of availability allowing for the opportunity to work the remainder on an adjustable schedule to meet the changing needs of their disability.

Remote Employment
As the world becomes more immersed in a digital environment that spans time zones and countries, many employees, both with and without disabilities, have been offered the opportunity to work some or all of their time remotely or from home.

The potential for people with disabilities to kick-start and accelerate their career is growing. I encourage anyone with a disability, visible or hidden, to take advantage of opportunities our current climate presents and to learn more about what accommodations may afford them the opportunity to remain in or reenter the workforce. By arming ourselves with information, we can have an open dialogue with employers who are increasingly looking for solutions to include the talents available in the disability community. For more information on possible accommodations that can meet your individual needs, I encourage you to visit the Job Accommodation Network (JAN).



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.

U=U – A Foundation for Ending the HIV Epidemic

By: Murray Penner, Executive Director, North America, Prevention Access Campaign

What many have thought for nearly 20 years is now an undeniable fact:  People living with HIV (PLWH) on effective treatment cannot transmit the virus to their sexual partners. This is the basis for Undetectable = Untransmittable, or U=U. You may know it, but in the United States, many PLWH, providers, policy makers, and the general public still don’t. This fact can transform lives and the field when communicated properly and represents a significant opportunity to help end the HIV epidemic.

There is an abundance of research supporting U=U, including PARTNER 1, in which both straight and gay couples had more than 58,000 condomless sex acts and PARTNER 2, in which gay male couples had more than 77,000 condomless sex acts. Both studies had zero linked HIV transmissions. Other research includes the Rakai, HPTN 052, and Opposites Attract studies, as well as the Swiss Statement that first published information about the risk of transmission being zero in 2008. This and other evidence is discussed in an online article at www.i-base.info/htb/32308.

Prevention Access Campaign (PAC) launched the U=U campaign through its consensus statement in July of 2016 and within three short years has achieved support from nearly 900 organizations in 98 countries. PAC is a community of people living with HIV, researchers, organizations, and other allies who share the common goals to end the dual epidemics of HIV and HIV-related stigma by empowering people with accurate and meaningful information.

Sharing the U=U message provides an unprecedented opportunity to improve the lives of people living with HIV and to dismantle HIV stigma. It has far-reaching public health implications for engagement across each stage of the treatment cascade and for expanding access to universal treatment and care to all people living with HIV so that they can benefit from viral suppression.
The basics rules of U=U are not complex.  It's about TLC:

1. Treatment – stay on Treatment as prescribed 
2. Labs – get Labs done regularly 
3. Connection – stay Connected to Care 

Words matter. In conveying the message that U=U, it is critical to be clear and definitive, which inspires confidence and doesn’t promote unnecessary doubts or fear. PAC recommends using easy to understand phrases such as “can’t pass it on,” “cannot transmit,” and “no risk." You can even say “zero risk.” Avoid phrases that may suggest even a slight risk like “nearly impossible,” “extremely low, “essentially no,” and “virtually impossible.” Any perceived window of risk, no matter how slight, may be considered “still a risk.” If you hear or see such ambiguous phrases being used, please speak out!

The U=U message is not copyrighted.  It belongs to everyone and is based on the science of treatment as prevention, pioneered in 2007 by Dr. Julio Montaner, who was also one of the earliest signatories to the U=U consensus statement. The phrase “Undetectable = Untransmittable (U=U)” was created by the community and researchers to easily convey the TasP science in a more definitive and empowering way.

As you create statements, videos, speeches, and/or newsletters, please keep in mind that millions of people don’t know about or believe U=U. Every communication is an opportunity for change. Make the information prominent so it has the best chance of being seen, not buried or near the end of a video where it could go unnoticed. U=U can be utilized in many messages:

• HIV stigma – U=U is the greatest opportunity we’ve had to dismantle it. 
• HIV treatment – U=U is an added incentive to start and adhere to treatment & to stay engaged in care. 
• Sexual and reproductive health – U=U means PLWH can have sex and conceive children without fear of transmission or alternative and expensive means of insemination. 
• Mental health – U=U reduces the fear and shame of transmission which has lifted people with HIV out of depression and social isolation. 
• HIV prevention – An undetectable HIV viral load only prevents HIV transmission to sexual partners. PrEP for HIV-negative individuals also prevents it. But these HIV-prevention tools do not prevent STIs and pregnancy. Using condoms helps prevent HIV transmission as well as other STIs and pregnancy. Choices for prevention methods may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners or is in a non-monogamous relationship, they might consider using condoms to prevent other STIs, while two individuals in a monogamous, sero-different relationship may choose U=U.
• Access to treatment and services – U=U is the public health argument for access. Everyone deserves to benefit from treatment. But people who do not achieve viral suppression must not be shamed or stigmatized either. Structural inequalities and social determinants of health make it difficult or impossible for far too many to reach viral suppression.   
• HIV criminalization – U=U is an important part of the modernization toolbox. 

Other items to keep in mind:

• Undetectable, synonymous with viral suppression, is under 200 copies/ml. 
• Achieving an undetectable viral load can take several months of ART. Once achieved, continued adherence is required. 
• U=U only applies to sexual transmission; there is not yet evidence about breastfeeding or needle sharing, although the U=U message should still be considered. 
• U=U may not exempt people with HIV from disclosure laws, which are unjust and bad for public health regardless of viral load. 

For more information on U=U or the Prevention Access Campaign, visit www.uequalsu.org.



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

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.