Jen’s Half Cents: Fixing the Broken Patient Advocacy Pipeline
One of my first conversations with Bill Arnold was particularly memorable. I had just started hormone replacement therapy, my beard wasn’t nearly as strong as it is now, and I’m certain I looked like a 16-year-old. In a moment of career transition, I had also recently joined the board of directors for ADAP Advocacy Association (aaa+). The Washington, DC air was warm, indicating a cool evening ahead, and we were taking a break outside during the ADAP Annual Conference. Following a detailed but brief chat about the state of political play around the Affordable Care Act, we went back inside for the next session and ran into Brandon M. Macsata, aaa+ CEO. What ensued was a discussion of strategy to recruit and engage younger advocates in patient advocacy and in particular the space of HIV. I think, in no small part, because I was the youngest board member at the time and because I was one of the newest board members, this “getting to know you” opportunity was also an excellent opportunity to discuss various priorities in advocacy and the current state of the advocacy ecosystem.
It should come as no surprise we independently concluded the health of the patient advocacy ecosystem was weak, having surpassed the moment of crisis, interests in our needs were waning, especially with certain competing priorities, advancements in therapeutics to treat HIV, and chronic nature of the illness that brought us all together. To be honest, the time between then and now, much like the nature of any chronic illness, has not much changed and it certainly hasn’t advanced. Even with the heavy reliance on a variety of expertise from the field of HIV to address, mitigate, manage, and – with any hope – defeat COVID-19, HIV patient advocacy has suffered greatly in the last decade. Arguably longer.
I’ve often mulled this conversation and the complex realities impacting the health of our aging advocate community. The truth is, many of the survivors of the AIDS Crisis never expected to live this long. All that work, all that fight, transformed into one of three paths; death, patient, or industry. Many people who took up the mantle of HIV patient advocacy or care delivery with extraordinary efficacy. To date, given the enormous obstacles of funding, access, stigma, and systemic biases, debatably, few public health campaigns have been as effective as those associated with the prevention, testing, and treatment of HIV. However, despite all of our successes and advocacy, according to the Centers for Disease Control and Prevention, progress in combatting the domestic HIV epidemic has stagnated over the last decade.
Central to this issue, few states have expanded their HIV funding in the last decade (kudos to Georgia’s HIV advocates for the recent influx of state funding to their State AIDS Drug Assistance Program), onerous rules on how to funds may be spent have left federal funds on the table, unused until usurped by political ideologues to put kids in cages, service providers are experiencing an extraordinary rate of burnout, competition in advocacy space has discouraged younger talent from staying in the field, or problematic policies or personalities in legacy institutions have pushed these young advocates to start their own agencies with little in the way of support – further compounding the field of competition.
Our ideas have aged as much as our leadership has. At the 30-thousand-foot view, this is one of many of the core reasons we’ve failed to advance in our fight against HIV.
In order to meaningfully advance HIV patient advocacy and thus work toward a more equitable regulatory and funding landscape, private funders and foundation partners need to re-examine “leadership development” initiatives and projects. Currently, these so-called “leadership development” programs are often short-lived, focus on recruiting a specific demographic audience, may share some story-telling skills, and maybe offer some networking among audience members. The idea being to further engage highly affected populations which may not otherwise fit traditional requirements in hiring and promotion screening. Often, these funds go to large entities which may lack specific expertise or experience with the intended demographic audience. Deliverables for these programs do not require hiring or connecting to employment opportunities for attendees, nor do they include requirements to advance leadership opportunities with existing staff or external recruitment from target demographics or affected community. These “leadership” programs lack any substantial applied benefit for affected communities, target demographics, or the patient advocacy landscape at large.
Internally, funders and providers required to engage community advisory boards often suffer the same stagnation. Community advisory boards maintain the same membership for years and years, with limited power of influence over industry activities, and zero incentive to seek new voices or experiences, including lack of compensation for time spent. To be clear, for our pharmaceutical manufacturing partners and government agency partners: community advisory boards should be disease state or demographic identity specific and not generalized for chronic illnesses or general populations in order to meaningfully affect the health and wellness of these communities, ensure equitable clinical trial and programmatic designs, and prioritize the needs of the impacted communities as those communities define them.
The argument goes “We need the institutional knowledge or connections. We can’t afford to lose the investment already made into these members.” And whole host of other reasons that amount to “that’s too hard.”
In order to move forward or even maintain effective advocacy, funders, both public and private, commercial industry and non-profit industry, need to re-work the deliverables associated with advancing leadership and recruiting and fostering advocacy expertise.
In short, it’s time to fund the retirement of aging leadership that never thought they’d live this long.
This is not a flippant suggestion, nor is it intended to provoke overnight changes that ultimately weaken the human infrastructure of advocacy. Rather, in order to meaningfully invest in the patient advocacy pipeline – and ultimately ensure shared interests of communities and industry and public health are met – “leadership” and “development” programs should aim to require, at least, the following, as appropriate:
Recruit candidates on the basis of advancing their personal careers and career goals, in alignment with the entity’s mission, as opposed to existing skill sets (job skills can be taught and indeed most are taught on the job)
Develop and implement a leadership change plan (ex. Year 1: identify candidates, Year 2: Mentor candidates in role, function, and networking. Year 3: Shadow candidate in performance of duties, critique and advise)
Review and update human resources policies including but not limited to education requirements for positions (ie. lived experience in lieu of formal education requirements), compensation relative to private industry competitors and best practices, and staff demographics relative to client demographics (these should be relatively on par to each other)
For conference style programs: require job placement or work search assistance until placement is found for the candidate
For community advisory boards: term limits, industry standard consultant compensation for board members, demographics reflecting that of affected communities, and member transition and mentoring programs aimed at recruiting
Part of how we’ve lost our way in advocacy is focusing on “cause” to drive interest and, frankly, cause does not keep the lights on. As non-profit industry moves to better understand that “cause over compensation” is robbing us of our best and brightest minds, so must our funders. We cannot recruit and retain the most creative generation of talent by racing to the cheapest contract.
President Biden is oft cited as saying “Don't tell me what you value, show me your budget, and I'll tell you what you value.” Though the sentiment has long existed and touted by others. And it misses the point of implementation.
Your integrity is spending your money in a way that actualizes your values.
