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!

How North Carolina Legalized Syringe Exchange Programs

By: Tessie Castillo, Communications and Advocacy Coordinator, North Carolina Harm Reduction Coalition (NCHRC)

In July 2016, North Carolina accomplished what many said could never be done – we legalized syringe exchange programs, which are proven to lower HIV and hepatitis C rates among people who inject drugs.

It took many years of planning and effort, as well as strategic partnerships with a variety of stakeholders to move the needle on this issue. We’d like to share a few of the strategies that worked well so that other advocates hoping to change hearts and minds on HIV prevention and harm reduction issues can use the lessons we have learned.

1. Craft a clear, concise message and choose the right messenger. The message around syringe exchange programs (SEPs) is pretty simple:

• SEPs lower HIV and hep C for the community;
• SEPs are a portal to treatment for people who are marginalized from health care and recovery programs; and
• SEPs lower needle-stick injury to LEOs by 66%.

We hammered home these three points in presentations, OpEds, media interviews, conversations with stakeholders, and everywhere else we could think of. Choosing the messenger required a bit more work. Since law enforcement had been the biggest opponent to syringe exchange programs in previous years, they were the perfect messengers.

We began setting up meetings with Chiefs of Police and Sheriffs, focusing primarily on those who had or wanted to start naloxone programs, since they seemed more sympathetic to nontraditional approaches to problems associated with drug use. After explaining our three points above, the majority (about 90%) of the law enforcement we talked to agreed that SEPs were a good idea. We asked them for a 2-3 sentence quote on why they supported SEPs and compiled all the quotes onto one page, which we presented during every meeting with every legislator over the next few months. This quote sheet was magic. MAGIC. It was the number one thing that took legislators from opposed or squeamish about syringe exchange programs to fully on board. It also neutralized opposition from law enforcement lobby groups, who had previously been vocally opposed to syringe exchange programs.

2. Choose the appropriate legislative sponsor. Legislative sponsors, the people who actually introduce your bill into the House or Senate, are very important. One of the ugly truths of politics is that so many bills go through the legislature per session, legislators don’t have time to read them all. Often, they just look at the bill sponsor. If it is someone they respect and usually agree with, they will vote for the bill. Knowing this, we carefully selected our bill sponsors as people who were from the majority party and trusted among their peers.

3. Create a list of target legislators and convince them to support the bill. Months before the start of session, we sat down with our primary bill sponsor and created a list of legislators who were likely to influence our bill because:

• They were the chairs of committees the bill would likely go through;
• They were well-known for legislation on drug/medical issues;
• They were likely to oppose the bill and others listen to them;
• They have a lot of influence at the legislature; and/or
• They have a medical/law enforcement background.

The goal was to have these legislators on our side, or at least not opposed to the bill, prior to the start of session. As mentioned above, legislators tend to follow the votes of other people they respect. If you can find and convince these few influential legislators, you have the votes of a lot of others as well.

After getting a list of target legislators (only about four) from our sponsor, we created strategies to seek their support for the bill. We flooded their newspapers with OpEds and articles in favor of syringe exchange. We sat down with the Chiefs of Police and Sheriffs in their district to get quotes for our quote sheet. We met with their health directors, heads of drug treatment centers and pastors from the larger churches. It was not until we had a robust group of influential constituent supporters that we reached out to the actual legislators. This process took months of work, but it was well worth the effort. We invited the targeted legislators to meetings attended by all the supporters we had cultivated in their districts so that they could hear from their own constituents why SEPs are a good idea. The outcome of the meeting was usually decided before the legislator even walked in the door.

4. After introducing the bill, don’t slack on the leg work. By the time the legislative session actually started, we were in pretty good shape. Our law enforcement quote sheet was growing and working wonders. We had also successfully convinced the majority of our target legislators to support the bill. Once the bill was actually introduced, the rest was leg work – we met with the legislators on every committee that the bill went through to ask them to vote for the bill. We created informational flyers that we passed out to all other legislators. We urged constituents through listserv emails to contact their legislators and ask for their vote. When problems came up and the bill stalled, as it did many times, we kept urging the legislators, especially the sponsors and key supporters, to keep trying and asked our listserv allies to keep making calls. (There is a fine line between being persistent and being pushy, but we tried not the cross that line).

Eventually, the work paid off. In July 2016, Governor McCrory signed the first law legalizing syringe exchange programs in North Carolina. In just two months, over a dozen syringe exchange programs have popped up all over the state and more organizations are coming forward expressing interest in starting one. Hopefully advocates in other states can learn from NC and succeed in their own campaigns to legalize syringe exchange programs.

That’s the bare bones explanation of how we legalized syringe exchange programs in North Carolina. Click here for a more narrative version of the process.

Fact sheets and other materials to help advocate for syringe exchange programs (including the law enforcement quote sheet) are available here: http://www.nchrc.org/syringe-exchange/factsheets-on-syringe-exchange/.

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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.