Thursday, August 16, 2018

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.

Rev. William Barber II at Moral Monday rally in North Carolina
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!

Friday, August 10, 2018

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.

aaa+ Leadership Awards

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

Thursday, August 2, 2018

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.

Wanda Brendle-Moss
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!