State Departments of Corrections Lack Focus on HIV Care for Former Inmates

By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

It has been nearly 40 years since the HIV/AIDS epidemic began showing up across the United States, and after all this time, with the amazing level of resources and support available for those living with the disease, it became clear that there was little information publicly available concerning incarcerated populations. To that end, all 50 states’ and the District of Columbia’s respective Departments of Correction (DOCs) were contacted by the ADAP Advocacy Association and Community Access National Network (CANN) to inquire about their procedures for preparing inmates living with HIV for reentry into the general population. Not surprisingly, our research re-confirmed the disparities that exist in serving former inmates.

A few of the disparities are highlighted in the findings presented earlier this week in an infographic, which was made available by the ADAP Advocacy Association as part of its ongoing Correctional Health Project. The infographic can be downloaded from their website.

HIV is currently a disease that requires lifelong treatment that must be adhered to regularly in order to achieve and maintain Viral Suppression – when the Viral Load (the number of HIV virus cells active in the body) measures below 40 copies per milliliter (aka – Undetectable). With new data showing that Undetectable = Untransmittable, it is more important than ever for people living with HIV to have access to their medications in order to both stay healthy, and to prevent transmission of the disease to others. Former inmates deserve the same access to care and treatment as the general population, especially upon their discharge from prison.

We found that 31.3% of state DOCs fail to disclose the amount of meds inmates are provided upon release, making it difficult to track or accurately report the circumstances inmates face upon reentering the general population. In addition, 27.4% of states provide NO policy information on their reentry programs, whatsoever.

Rhode Island’s DOC has perhaps the most comprehensive HIV care program in the U.S. justice system, both during and post-incarceration. The state contracts with the state university to provide care throughout the inmate’s stay at state facilities and ensures that continuity of care continues by keeping inmates with their same providers after they leave (should they stay in the state). Additionally, inmates are provided with an excellent comprehensive reentry program that integrates the state’s Ryan White program and assists with the Medicaid application process. They also look into accessing HOPWA (Housing Opportunities for Persons With AIDS) to help provide housing if they are returning without a reliable home.

New Hampshire's DOC was unaware of the Ryan White Program. We were able to provide them information about the program and connect them with the state's Ryan White Director. NH is currently determining whether or not to incorporate Ryan White as part of their Reentry Program for inmates living with HIV/AIDS who do not qualify for Medicaid.

The latter story should be considered a success story for the Correctional Health Project – introducing state DOC’s to resources for reentering inmates living with HIV that can help them to maintain continuity of care between incarceration and reintegration into the general population is one of the primary goals. Additional resources will be made available on this project continues to unfold this year.


Read our related blogs on this topic:

• Improving Access to Care Among Formerly Incarcerated Populations with HIV/AIDS under the AIDS Drug Assistance Program (October 27, 2017)
• Linkages to Care During Post-Incarceration (July 5, 2017)

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: Michael Zee Zalnasky

By: Michael Zee Zalnasky, Founder, The AIDS HIV Survivor Living Memorial

Only diagnosed with AIDS in August 2014, I quickly learned about the ramifications of revealing one's status. The first person who I revealed my status to was my Supervisor, and it cost me my job...my livelihood...along with my pride and integrity. Little did I know it would create a fight in me to stand up to any challenge, so I made a conscious decision to simply tell all. In doing so, I re-gained my self-confidence, my self-pride, and sharing my story released a courage that I didn’t know existed inside of me.

I quickly realized it was a life-changing decision that I could live with because it left me with nothing — absolutely nothing — to hide. Being public about my status wasn’t enough. I wanted others to feel the freedom associated with open disclosure and the benefits of being open about living with HIV/AIDS, such as less stress. Ironically, support came from every direction; even from people who I didn’t expect to give it.

I had lost a dear friend in the early eighties following her AIDS diagnosis. Shame led her to take her own life. After my diagnosis, I promised myself that I would never feel that same shame. I set out on a journey to change the way the world views HIV/AIDS. I decided to make it bright, bold, and beautiful! I’d make it colorful. Next, simple framed graphics designed to empower others to reveal their HIV status publicly. The journey led me to create The AIDS HIV Survivor Living Memorial on Facebook as Public Group. Better known as The Digital Living Quilt, it now has worldwide participation and it is slowly changing the face of HIV/AIDS.

For me, it has been a game changer, if you will, because there are so many requests to be part of the Digital Living Quilt. It is amazing what it has done to the for so many people living with HIV/AIDS. This life-changing, inspiring work is something that I could never be more proud off.

It has given our community a platform to say, “Look at me. I’m HIV+ and I don’t need to hide.” The Digital Living Quilt is creating a place where, together, we’re pushing back against HIV-related shame and stigma.

My work and dedication to helping others has led me to great opportunities, such as being awarded a scholarship to the 11th Annual ADAP Conference in September. It is an event I’m more than thankful to be attending with fellow advocates, and making new connections. The AIDS Drug Assistance Program is a much needed program for so many, including me as a person who’s benefited from it.

Our self-advocacy is needed because it is changing the way others see life living with HIV/AIDS. Eliminating HIV-related shame and stigma can only lead to better lives for all of us. I invite you to visit the Digital Living Quilt online.


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

An Inherent Value in Advocacy Partnerships

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

As we've witnessed our national dialogue boil over into "us versus them" or "red versus blue" or "urban versus rural" or the even more egregious "you're either with us or you're against us", it is important to remember there is an inherent value in advocacy partnerships. It is even more important for the HIV advocacy community to continue to leverage broad partnerships, rather than retreat into corners. Adopting the latter approach would surely result in less potent national and state-level advocacy, fewer programmatic outcomes, and far less access to care and treatment for the patients who need it.

The ADAP Advocacy Association has long boasted in its tag line that it "works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders." Yet, all too often, some question why one group or another is invited to sit our communal table. Unfortunately, it is happening more so in recent years. It is a troubling trend, no doubt.

Our organization's primary audience is the patient. One of our core value statements is that the voice of individuals living with HIV/AIDS shall always be at the table and the center of the discussion. All too often the patient voice is pushed aside, or not even included in important conversations because they're characterized as "bitching and moaning" rather than proposing solutions. But haven't patients earned that right, because after all they're the ones living with the damn disease? That said, such an narrow attitude under-estimates the valuable contributions made by patients every single day!

Likewise, state health department employees aren't the enemy. They are our partners and if state agencies are doing something counterintuitive to promoting greater access to care and treatment, then it is the advocacy community's and patient community's role to engage them. Joey Wynn, who serves as a board member to this organization, routinely engages state agencies in Florida...including when those same agencies are doing something the local advocacy community finds potentially harmful. Joey's approach has served people living with HIV/AIDS in South Florida rather well, too. In fact, I've personally witnessed the effectiveness behind his approach at a town hall meeting in Miami (as seen above when Joey invited me to speak), as well as his past leadership with the Florida HIV/AIDS Advocacy Network ("FHAAN").

Beating up on pharmaceutical companies is easy, and it most certainly is a popular thing to do. Yet, it is indeed possible to push back on the high cost of prescription drug prices while simultaneously working with these same partners to fight harmful public policy proposals, such as federal budget cuts, or the dangerous idea of drug importation.

Photo Source: Wikipedia

Nashville, Tennessee-based advocate and social media guru Josh Robbins is prime example! Josh has partnered with numerous private entities — such as medical diagnostic companies and pharmaceutical companies — and various public agencies — including health departments — to promote a litany of public health initiatives ranging from National HIV Testing Day, U=U, and access to PrEP. His groundbreaking work in Tennessee could not have been achieved operating from a silo.

Wanda Brendle-Moss, who also serves as a board member to this organization, recently reflected on her HIV advocacy journey. Wanda has demonstrated that collaboration is an effective advocacy tool in North Carolina, evidenced by her relationships with the North Carolina AIDS Action Network, North Carolina Harm Reduction Coalition ("NCHRC"), and the Rev. William Barber II's Moral Mondays (as seen in the photo above). Wanda would work with anyone who will answer her phone call, email, or text!

Speaking of North Carolina and NCHRC, under the leadership of the former executive director, Robert Childs, progressive harm reduction policies were adopted in a conservative state with an even more conservative General Assembly. Such legislative victories in the state included achieving syringe exchange programs, expanded Naloxone access, Good Samaritan protections, prescription drug monitoring programs, among other things. How? It was the advocacy partnerships developed by NCHRC, including with some VERY unlikely allies.

Nationally, efforts such as the ongoing U=U campaign ("Undetectable = Untransmittable") to reduce HIV-related stigma could not have happened without Bruce Richman's steady leadership. It isn't surprising that Bruce has assembled an extremely broad coalition of community partners, representing all stakeholder groups.

The most effective advocacy is rooted in advocacy partnerships, and not rivalries. With the current occupant residing at 1600 Pennsylvania Avenue being so unfriendly to our community, such advocacy partnerships are even more important now!

Award Honorees Embody Our Commitment to the Public Health Safety Net

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

The ADAP Advocacy Association announced earlier this week the honorees for its Annual ADAP Leadership Awards, which recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS — including under the AIDS Drug Assistance Program (ADAP). The 2017-2018 award honorees reflect the theme of the organization's 11th Annual ADAP Conference, “Mapping a New Course to Protect the Public Health Safety Net,” being held in next month in Washington, DC.

As in years past, it is always difficult selecting the honorees for the various awards because so much amazing work continues to be done fighting the HIV/AIDS epidemic. But some work always stands out and it deserves our recognition! It is our way of saying, thank you.

The following awards will be presented during the Annual ADAP Leadership Awards Dinner, which will be hosted on Friday, September 21st:

• ADAP Lifetime Achievement awarded posthumously to Gary R. Rose. As we noted earlier this year, Gary was One for the Roses.

• “William E. Arnold” ADAP Champion awarded to Evelyn Foust, Director of the North Carolina DHHS Communicable Diseases Branch. Evelyn has been instrumental in the implementation of the ADAP premium assistance in the state. 

• ADAP Emerging Leader awarded to Tori Cooper. Learn more about her groundbreaking work. Tori currently serves as a prevention specialist at Positive Impact Health Centers in Atlanta, GA.

• ADAP Corporate Partner awarded to Lambda Legal for their tireless work on behalf of so many people living with HIV/AIDS, including most recently with Harrison v. Mattis & Doe v. Mattis. 

• ADAP Lawmaker awarded to the Honorable John McCain, Arizona’s senior U.S. Senator, for his courageous thumbs down vote against repealing the Affordable Care Act. Sen. McCain's surprise vote ensured countless people living with HIV/AIDS continued to receive care. Former President Barack Obama even called McCain to thank him!

• ADAP Community Organization awarded to the Community Research Initiative ("CRI"), based in Boston, MA. CRI embodies the community-based focus that has long been associated with appropriate and timely access to care and treatment for people living with HIV/AIDS. Serving over 12,000 clients in the greater metropolitan area of Boston, CRI not only manages Massachusetts’ AIDS Drug Assistance Program, but it has also been on the front lines in fighting Hepatitis C, training service providers on culturally competent care, and advocating for successful prevention strategies, just to name a few. Learn more at https://crine.org. 

• ADAP Media awarded to Larisa Epatko with PBS News Hour for her "5 good news stories about the fight against HIV/AIDS," which was posted on June 13, 2018. 

• ADAP Grassroots Campaign awarded to Let’s Kick A$$ for their "Long-Term Survivors Stories Public Service Announcement," which features Long-Term Survivors sharing their personal stories what it means them to be a long-term survivor. 

• ADAP Social Media Campaign awarded to Jennifer Vaughan for her YouTube channel,"Jennifer’s Positive HIV Life,"with over 10,000 subscribers and with almost 2 million views on her 90+ videos about living with HIV/AIDS.

Information about the awards (including former honorees) is listed online at  www.adapadvocacyassociation.org/awards.html.

Tickets for the awards dinner can be purchased online. This year's awards dinner will be headlined by the one and only, Josh Robbins (who also happens to be a past award honoree).

Congratulations to the honorees of the 2017-2018 ADAP Leadership Awards!

Reflections from an HIV Advocate's Journey: Wanda Brendle-Moss

By: Wanda Brendle-Moss, Board Member, ADAP Advocacy Association

It amazes me when people praise me for “being so brave" for telling my story, or this one: "I can never do what you do!” But here is the truth; I was diagnosed with HIV in July 2002, with AIDS in May 2008 (and that’s another story to be shared later), yet my advocacy journey didn’t start until I became homeless in December 2009. It took me SEVEN years to find my bravery. My local AIDS Service Organization placed me in transitional housing and unknown to them, it gave me courage to start a new and exciting journey.

Photo Source: HIVPlus Magazine

Upon reflection, social media made it easier for me to find my footing in the advocacy world. I volunteered during AIDS 2012 after many months of joining in social media advocacy. Yet, even still I was still tentative in calling myself an advocate. I added my name to the email lists of all the top national HIV advocacy groups, including that of ADAP Advocacy Association (aaa+). This one was important to me personally because North Carolina was having all sorts of problems and it led to issues for those of us dependent on ADAP funding to receive our meds! At one time, North Carolina had one of the largest ADAP waiting lists, too.

In 2013, I attended my very first ADAP Conference after the ADAP Advocacy Association extended a scholarship to me. I was the ONLY attendee from my state! I felt so overwhelmed, yet at same time felt a tiny flicker of determination being born! Brandon Macsata, who I was in awe of because he ensured patients are front and center, offered me much encouragement to “spread my advocacy wings”, and to not be afraid to “just do it”! That encouragement started me on journey to the advocate many of you know today. Years later, Brandon was so impressed with my growth as a self advocate that he asked me to join the organization’s board of directors!

I’ve learned that advocacy cannot be dictated by anyone, or any organization. We are all different, and we have different ways of engaging in the fight to end the epidemic. It is troubling to see some organizations shut out the patient voice, while others use it to protect systems rather than people. Each of us living with or impacted by HIV must learn how to be advocates. Blogging may not be for you. Protesting might not be a good fit for you. Meeting one-on-one with lawmakers may intimidate you. And that is okay! There are still days when I wonder if I am a worthy advocate, and I reflect: YES I AM! 

All these words are simply meant to encourage you to take that leap of faith and believe in yourself, even through the setbacks! Get online and join listservs of organizations who do the work you’re passionate about! Take that first step and before you know it you will be telling your story!

I look forward to meeting you as our advocacy journeys cross paths!


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.