By: Marcus J. Hopkins, Blogger
This past week marked the ADAP Advocacy Association’s 8th Annual Conference, and I was privileged enough to attend and participate in the event entitled, “A National Conversation about the Ryan White CARE Act and the AIDS Drug Assistance Programs.” In years past, this conference has followed the traditional conference format, with group plenary sessions separated by breakout sessions featuring various topics and speakers, between which one had to choose which topic was of most interest to them. It has always been my belief that this format, while certain informative, leaves those who serve as the lone representative of their organization with the difficult choice of prioritizing one topic at the expense of another, thereby limiting their learning opportunities. In 2015, however, saw a much welcome and much needed change to the format.
In keeping with the theme, this year’s conference was set up much like a talk show – five chairs lined across a stage with a moderator in place to guide the conversation back on topic, should the guests veer too far afield. Each panel had a topic about which they served as experts, and each session allowed both them and the audience to passionately debate and discuss the various aspects of each facet of Ryan White. If every conference were held in this format, I might dread going to D.C. far less than I previously have.
The benefits of this format are myriad – personally, I’ve always felt that a more Socratic approach to educating and informing keeps audiences and students better engaged in the discussion. When experts, advocates, and “field operatives” – those who do work within the existing structure of any given field – are allowed to interject at any given point and respond, expand upon, or provide insight into a discussion, the conversations become more robust, and people hopefully leave with a better understanding of the topics at hand, rather than wondering what the hell it was they just spent an hour-and-a-half attending.
This has, for me, consistently been a problem. As much as I am a data-driven person, better at understanding the numbers that shape and inform healthcare and medical research, whenever it comes to enduring “stories,” I find myself more often than not wishing I had stayed out in the lobby to speak to someone about their research. Where other advocates find inspiration in hearing about the journeys of others, I tend to sit in the audience bored out of my mind, wondering why I gave up smoking.
While I am very adept at identifying, understanding, and working to dissolve barriers to healthcare services, it would be disingenuous of me to suggest that I am a “people person.” I have a very low tolerance for individuals whom, for whatever reason, seem entirely disinclined to take control of their situations and help themselves so that others can help them. Whenever I hear stories about HIV-positive individuals who aren’t adherent to their regimens out of negligence, rather than because they lack access, I find myself wanting to shake someone. Because healthcare is often a matter of life and death, I tend to be more black and white when it comes to discussions about adherence – you either take your meds, or you don’t; it’s a simple as that, for me. It’s this very lack of empathy on my part that makes me a very good researcher and consultant, but likely the last person you’d want to serve in any position advising patients.
My reasons behind this are deceptively simple, but stating this reason in public leaves many people wanting to strangle me in my sleep:
Advocates are very good about being very passionate, very driven, and very loud, but we are not always very good at coming to the table with actual evidence to back up our claims.
This, as it turns out, is a very unpopular opinion, because when it comes to HIV/AIDS, the first decade of the fight to gain attention and action for the disease was fueled almost entirely by passion, an endless supply of drive, and making a lot of noise. This is how HIV advocates cut their teeth, in the 80s, and those who are still around find it both troublesome and infuriating that younger audiences don’t share their enthusiasm. What they often don’t remember is that the fight for recognition and action had to rely upon these elements, because good, research-driven data was either entirely unavailable, or not sufficient for the purposes of bolstering another approach. People were (and still are) dying, and what we needed more than anything was for someone to stand up and pay attention to that fact.
It is safe to say that those attentions were received. Without the tireless and very vocal efforts of early AIDS activists, we might not be where we are, today. It should go without saying that the actions led by ACT UP in Times Square, the New York Stock Exchange, and at the FDA Headquarters in Rockville, Maryland, were instrumental in the fight to gain access to potentially life-saving treatments that were hampered by long trial and approval processes. Without these very passionate, very driven, and very loud activists, we may not have been able to capture the nation’s and the world’s attention, and we very likely might have continued to die in silence. At that point in time, having faces to attach to the disease was vitally important in the attempt to humanize us. But, we did get that attention; we didn’t stay silent; we gained access to treatment.
There are few people under the age of thirty-five who vividly remember how AIDS was portrayed in the 1980s; most of us are too young to remember watching news reports or reading articles accompanied by pictures of living skeletons essentially trapped behind isolation tents surrounded by doctors and nurses whom, out of fear, refused to treat us. We also don’t remember this because, as research efforts and science advanced, AIDS was finally able to undergo a facelift.
Newer technologies and scientific breakthroughs in medicine were finally able to begin addressing the virus in a way that no longer left patients to fester in soiled hospital beds, unable to hold down their meals, and looking like they were auditioning for a role in a George A. Romero zombie film. The HIV Patient of the 1990s was portrayed not as someone dying of AIDS, but as someone “living with HIV.” We could go to the gym, participate in outdoor activities, and yes, even go to work! HIV was effectively rebranded, repackaged, and resold to the public, effectively changing the way the advocacy game was played.
By the time the Aughts rolled around, HIV had largely lost some of its “sexiness.” Now that HIV was no longer a death sentence, it sort of fell off the national radar. When fiscal austerity became the popular spending priority, vocal and passionate activism began to serve less as a useful awareness tool, and more of an annoyance.
What we, as advocates, need to understand is that there is little appetite to increase spending, and just shouting loud enough isn’t enough to make it happen. While names and faces are still important components of an effective advocacy strategy, if we what to effect meaningful and long-lasting legislative change, we must approach these situations differently than we have, historically; simply “rising up” isn’t enough.
This reality is something that tends to “make waves” in the activism community, because this is the way we’ve always done things; the HIV community long struggled to gain not just recognition, but acceptance, and now that the treatment and stigma landscapes have changed (and are continuing to do so), many advocates struggle to keep up with the pace. As with every movement, evolution is a necessity if it wants to remain relevant and survive the changing climate.
Lest the reader think I’m lumping all advocates under the same tent, it must be acknowledged that many activists and advocates are very effective at defining, researching, collaborating, explaining, and achieving their goals as it relates to HIV and HCV policy. What rankles me, however, is the failure of others to recognize that, in order to accomplish great things, a multi-front plan of attack is needed.
The most prescient example of this arose during the panel on HIV criminalization and the impact it has on already marginalized communities. The arguments against the practice of HIV criminalization – that it is inherently discriminatory, that defendants often have few persuasive arguments to make in court to prove their innocence, and that the very nature of these bills criminalizes a virus by trumping up the charges to include bioterrorism – are all very compelling arguments, and they are ones that make sense. But, we cannot rely on arguments of Pathos, alone.
While I heard a lot of passion against criminalization, as well as a seemingly endless amount of handwringing, what I did not hear was a strategy to overturn these laws on the State and Federal levels. And so, I asked the following:
“While I think that we all can agree that HIV criminalization is a travesty, what are some steps that we can take, at the local and Federal level, to go about overturning these statutes and laws?”
What I heard in response was, sadly, nothing comprehensive; in fact, outside of “talk to your local legislators,” there was little functional advice from our panel of experts. Honestly, I think the question caught them largely off guard, as they had been fielding, rather than questions, longwinded stories and inspirational affirmations (Pathos). The gentleman from the American Civil Liberties Union (ACLU) did suggest that we should research our state’s laws on HIV criminalization, but beyond that, the well of suggestions seemed alarmingly dry.
I felt the same sense of incredulity during the post-election Proposition 8 arguments. For some reason, older activists seem to loathe getting litigious, believing that, after thirty-plus years of advancements for LGBT Americans, we still have an inherently unfair court system that is unsympathetic to these aims. In reality, what we had were arguments based on Pathos, and well-meaning, but not necessarily talented lawyers with little social science to back up their claims in court. I can’t even begin to count the number of argument I entered where a senescent survivor of the 80s told me that taking our fight to the courts was the worst thing we could do. Funny how those very same advocates who railed against Equality California’s (EQCA) decision to pursue the matter in the courts conveniently became “ardent supporters, from Day One!” …right after that first legal victory.
When it comes to HIV criminalization, if we continue to find our statehouses filled with social and religious conservative legislators who are unwilling to even entertain evidence-based arguments in favor of repealing these laws, we are going to have to take a page out of EQCA’s book, and pursue the matter in court. We cannot continue to rely upon the ACLU to fight our battles for us; we need to involve the big guns who will insist that we make reasoned, evidence-based, and passionate arguments in court.
This is how we need to begin reshaping our advocacy landscape – by including all types of advocacy into a united front that attacks from every front. We cannot continue to hope that identity politics and passion will be enough to convince our legislative foes that we are in the right; we must begin to strategize, and include people who are good with gathering research and evidence to back up our claims, alongside people who are willing to take our arguments out of the Legislative Branch, and into the judicial branch, and to do so successfully.
The sad truth, from this cynic’s perspective, is that the political system, as it stands, best serves the interests of the rich, the powerful, and the manipulative, and as such, when we go to these elected officials from the perspective of “this is who WE are; WE are the face of HIV,” they simply couldn’t care less. Our legislators, frankly, don’t care who we are, because we don’t fund their campaigns; we don’t line their pockets; we can’t do anything for them.
During the panel on which I sat related to Hepatitis C (HCV) in Appalachia and the effectiveness of harm reduction strategies (namely syringe exchange programs), one very passionate activist made the argument that “…drug users vote, too.” And this, sadly, is where I take issue.
Statistically speaking, drug users, particularly those who use or abuse opioid drugs, tend to fall into the lower end of the income brackets – the least likely bracket of people to vote in elections. The reality is that the poor, the disenfranchised, the minority population, and the young are less likely to vote, in no small part because they simply don’t see the point in participating in a system that seems to have nothing but enmity towards their kind of people.
So, rather than assuming that “…drug users vote, too,” we need to be realistic and assume that they are neither registered, nor interested in voting, and go about using our time and energy to mobilize these populations to go to the polls, even if they’re disinclined to vote in our favor. The first step is to get people registered and to the polls; if, along the way, you can discuss with them the issues that most impact their lives, and provide an impassioned, evidence-based argument to sway them over to your position, you will have won the day.
All things considered, I felt that the 8th Annual aaa+ Conference was a rousing success, even though I left feeling personally frustrated with the types of advocates who were in the audience. Regardless of my issues with the currently feckless state of HIV and HCV advocacy, I also left feeling, to some degree, inspired to take my argument back with me, and work at engaging and inspiring others to become not only advocates for others, but for themselves, as well.
Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.