HIV Stakeholder Surveys

By: A. Toni Young, Executive Director, Community Education Group

Community Education Group (CEG), a nonprofit located in Washington, DC  that is dedicated to ending HIV and related health disparities. CEG has a commitment to changing the way the world tackles public health in underserved communities. My colleague, Dr. Tyriesa Howard Howell, and I (A. Toni Young)  are conducting disseminating two surveys study to evaluate how nonprofit organizations around the world are preparing to ensure their sustainability. One participant from each survey who completes the survey in its entirety will be randomly selected to win a $200 gift card that will be electronically delivered by December 1, 2018.

• Survey 1: Project Boundless

https://www.surveymonkey.com/r/RYB9MH6

BACKGROUND
Throughout the 30+ years of the fight against HIV, medical advancements such as antiretroviral therapy (ARV) and pre-exposure prophylaxis (PrEP) have shifted the ways in which nonprofits (including CEG) have evolved in an effort to maintain the community's presence and engagement in HIV treatment and prevention. As a part of our evolution, community organizations have embraced our roles in Red Carpet linkage-to-care networks, transitioned from traditional behavior modification approaches by navigating community members to PrEP, and have expanded other areas in the services we provide. On the dawn of a new day in HIV service delivery, that being HIV cure research, we would like to learn more about your organization's preparation for the next phase of the fight.

WHY WE'RE ASKING
The purpose of our study is to inform how to best establish a global dialogue among non-government and community organizations concerning the impact of biomedical HIV treatment and cure-related research. This research will also help us understand how finding an HIV cure may affect organizational sustainability.

WHO WE'RE ASKING
Participants 18 years and older that are affiliated with nongovernmental, nonprofit and community-based organizations are being asked to participate.

WHAT WE'RE ASKING
Please complete our survey and share it with other colleagues on the frontlines of community-based HIV prevention and treatment.

This study was approved by the New England Review Board (Protocol No. 120180166).

• Survey 2: The Equitable Access Survey

https://www.surveymonkey.com/r/TFCWTTX

BACKGROUND
The Equitable Access Coalition (EAC) seeks to mobilize a diverse group of individuals and organizations reflecting persons of color living in rural communities in the South. We want to influence policy change and provide access to education affecting policy change at the state and county levels.

WHY WE’RE ASKING
Our purpose is to:
1.   increase access to HIV prevention care and treatment with an emphasis on PrEP;
2.   increase access to HCV screening, education, and treatment; and
3.   increase access to family planning and health services for transgender men and transgender women.
4. identify local and state policy issues

We are interested in organizations located in the Southern United States:  including Washington, DC, Maryland, Virginia, West Virginia, Tennessee, Kentucky, Arkansas, North Carolina, South Carolina, Georgia, Alabama, Mississippi, New Orleans, Florida, and Texas.

WHO WE'RE ASKING
Organizations and persons representing these key populations: people living with HIV and/or HCV, injection drug users, formerly incarcerated, harm reduction specialist, gender nonconforming individuals, transgender men, transgender women, same gender loving persons, persons with substance use disorders, heterosexual men, and heterosexual women.

WHAT WE'RE ASKING
Please complete our survey and share it with other colleagues.


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.

3rd Annual National Monitoring Report on HIV/HCV Co-Infection

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

The Community Access National Network (CANN) will be hosting its 3rd Annual National Monitoring Report on HIV/HCV Co-Infection on Wednesday, September 19th, beginning at 2:00 p.m. EST. This annual report provides valuable information on the state of Hepatitis C (HCV) treatment coverage, harm reduction measures to prevent transmission of HIV and HCV, and, new to this year, a brief focus on HIV and HCV testing and treatment for individuals currently incarcerated and post-incarceration.

Returning this year are yours truly (as the Project Director for the HIV/HCV Co-Infection Watch and Medicaid Watch), and Amanda Bowes, Manager on the National Alliance for State and Territorial AIDS Directors’ (NASTAD) Health Care Access Team. New presenters for 2018 include Ayesha Azam, Senior Director of Medical Affairs at the Patient Access Network (PAN) Foundation, and Jack Rollins, Senior Policy Analyst at the National Association of Medicaid Directors.

At last year’s National Monitoring Report, I focused on the increase in coverage options for both the Ryan White and Medicaid programs, showing how treatment options have expanded across the country since 2015 (when the HIV/HCV Co-Infection Watch began). Mrs. Bowes provided more detailed information available about coverage, as well as NASTAD’s efforts to expand coverage for Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) within the nation’s AIDS Drug Assistance Programs (ADAPs).

This year’s event is sponsored by the ADAP Advocacy Association, Gilead Sciences, Merck, Quest Diagnostics, Walgreens, and the Pharmaceutical Research and Manufacturers of America (PhRMA).

The 3rdAnnual National Monitoring Report on HIV/HCV Co-Infection can be attended either in person at PhRMA Headquarters in Washington, DC, or remotely for non-DC residents. Registration is free and can be done online. While registration is free, there is limited seating for those attending in person and advanced registration is required to attend.

Learn more at http://www.tiicann.org/events.html#091918cr.


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.

Older Adults with HIV: The Forgotten Majority

By: Tez Anderson, Founder & Executive Director, Let’s Kick ASS—AIDS Survivor Syndrome

Older Adults with HIV make up 60 percent of all people living with the virus in the United States. But the majority cohort continues to overlooked and ignored by HIV/AIDS care, services and community-based organizations, international and national AIDS conferences, and governmental bodies.

The median age of the people living with HIV in America is 58. Approximately 660,000 of the estimated 1.1 million women, men and transgender people living with the virus over age 50. A proportion that in 2020 will increase to 70 percent.

As HIV activists, we hear a lot about “key populations,” disparities” and “bridging the gaps.” The conversation usually revolves around gender, gender expression, race and poverty and the roles they play in people with HIV lives.

But the topic of Aging and HIV isn’t brought up. Why is it that the largest key population—Older Adults with HIV—is never included in these gaps? Why do older people with HIV receive the least attention, funding, and focus?

It would be easy to point the finger at discrimination based on age, or ageism. While that is undoubtedly part of the problem, there is more to it.

For one, HIV has all but disappeared from the mainstream headlines in the U.S. It was once a fatal disease and is now a “chronic manageable disease,” ignoring the fact that without daily medications it is still deadly. Most long-term survivors scoff at the idea that it is easily managed. HIV/AIDS is no longer on most people’s mind.

For another, the HIV care community and conferences have overoptimistically focused a cure (which remains elusive) and being “AIDS-Free” by some arbitrary date. It was once in 2020, and now it is 2030.

The people and agencies providing our care are more focused on the future while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years are the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old.

Examples of the indifference include the U.S. Centers for Disease Control & Prevention ("CDC") is aging data from 2013, old statics which vastly under-represents the present-day reality. September 18 is National HIV/AIDS and Aging Awareness Day. But the folks that originated the day have all but abandoned it. The website has not been updated years. If there’s a theme for 2018, I can’t find it.

This ongoing in indifference has an impact on the health and well-being of older adults. Lost in the apathy are the complexities and nuances of HIV and aging. What about our lives right now?

For instance, the differences in quality of life for long-term survivors and those older adults who have acquired HIV more recently. These facets matter.

Polypharmacy is a big word for the number of medications we take for “non–HIV comorbidities.” We appear to be aging at an accentuated rate too. Older adults with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s. In other words, 60 is the new 70 for those living with HIV for decades.

I often wonder if part of the problem is the aim established by the CDC and UNAIDS which states the “ultimate goal is achieving viral suppression.” They don’t have a vision for what happens next. What is beyond viral suppression for a population aging with HIV?

What about those living with HIV who are who’ve been undetectable for years. Then what? It seems to be the end of a conversation not the start of another dialogue about. How about we focus on what it will take to change the narrative to what it will take for healthy aging with HIV? How does that look? Isn’t that a worthier goal?

Aging is not on the agenda. It is time to change this. It will take us demanding it and not put up with invisibility. We are the ones that changed the face of healthcare advocacy for all diseases. Are we up for doing the something to envision an agenda for aging with HIV?

Some communities around the country are taking matters into their own hands and holding dedicated HIV and Aging Conferences. I’ve spoken at some of these conferences, and they are incredible. But are we not worthy of an “aging track” or the spotlight on the main stage at expensive AIDS conferences?

The thing I hear most from older adults and long-term survivors is they feel forgotten and invisible. If this is how we treat our aging population what’s the message we are sending to young people living with HIV?

It seems the focus is on “ushering in an AIDS-Free generation” and a concerted effort to End AIDS by, first it was 2020, now it is 2030. What does “ending AIDS” mean to those of us living with AIDS for decades? Most of us finishing it “after I’m dead.”

I know we can walk and chew gum at the same time. We can envision an AIDS-free generation and ensure that our health care system and services are empowering the first generation to live meaningful and healthier lives.

Learn more about Let’s Kick ASS—AIDS Survivor Syndrome online at https://letskickass.hiv.

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.

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!