Jen’s Half Cents: Industry Investment in Advocacy Must Look Beyond the Next Quarter

A reoccurring theme over my career in patient advocacy has been concern over the future. The discussion takes shape in different ways, mostly with looking thoughtfully into the different aspects of what we mean by “investment” and “resources” and how we define “success” in advocacy. These words tend to float around with some ambiguousness but for the purposes of this blog (and honestly the conversation at large), we do need to define them and contextualize this language before we dig into the meat of what it means to have a robust, well-supported patient advocacy ecosystem.

I’ll get straight to the point by defining the ways we use these terms:

“Investment”
Most commonly referred to mean financial commitments but these commitments, when used strategically, are built on the backs of dynamic relationships between the people involved and the representation of our various stakeholders. To this end, while investment” is tied to dollars and checks, we must be explicit about “investing” time and energy into one another, buying into avenues of trust and plutonic connection. I mean this honestly – lots of folks don’t want to talk about their personal lives and wish to keep work and home separate. While that may have been perfectly functional in the past, it’s not any longer. We must invest in one another, in our missions and purpose, our visions and analyses, and this investment must look beyond what bills are being passed into law or tallying up dollars spent.

”Resources”
As with investment, “resources” tends to refer just this side of explicitly to money. And money does indeed make advocacy a career as opposed to a hobby. I’ll frequently remind advocates and funders that we don’t get to have the luxury of being in these rooms talking with one another without being able to have the necessity of our lights on and bellies full being assuredly met. Money buys the resource of time and child care and transportation. Money also buys the resource of talent and training; it allows us to invest in the potential of community members who wish to participate beyond their scarce off-work hours. Resources are bodies and minds seeking solutions to complex problems and exploring the topography of politics and policy.

“Success”
This one requires nuance. For many funders and even board members of advocacy organizations, “success” is also financial but the word has other, programmatic and sometimes situational definitions. “Success” can be growing the interest of a community member to become an advocate. Success can be passing a bill into law or preventing one from becoming law. Success can be the number of patients linked to care or educated as to certain aspects of care. Success can be activating a patient base on particular political or policy issues. Success can be being able to trust that new relationship and giving them a call to discuss ideas. Success, however, is always tangible.

We must acknowledge that in all the ways we have previously succeeded and are currently lacking in success are directly tied to the investment of resources in patient advocacy.

Funders Concerned About AIDS has tracked a steady decrease in HIV-related funding and decrease in diversity of funders, over the last several years. Much like the social atmosphere in the South, funders are shifting their attention to other issues of Justice or health, and away from HIV as a singular, defining issue. The idea of HIV being “exceptional” is diminishing at one of the worst possible times for this phenomenon to happen. On the cusp of success or at a time when gains are being disrupted by yet another pandemic and the politics of the day, is not the time to pull away from the exceptional nature of HIV and patient advocacy as a whole.

The late-Bill Arnold used to tell me “We can’t look away. The Crisis is always right around the corner.” This was as much a pragmatic sentiment as it was an emotional one. The nature of infectious diseases, especially HIV, is they can run quietly in the background of our lives and society for an exceptional amount of time. And if we allow that to happen, as evidenced by lacking investments and flagging resources, only to come back at the moment of crisis or emergency, then we won’t ever succeed.

Much like public health, advocacy cannot succeed without continuous investment – yes, both dollars and relationships.

Our funders must maintain a commitment to funding patient advocacy now, more than ever, because the stagnation of domestic politics won’t last forever. We will face a moment in the future where we either move forward or we slide back and there won’t be enough resources to push us forward or guard against the slide back unless those investments are something advocates can rely upon.