Last week, Public Citizen hosted the “Affordable Medicines Now” conference at Georgetown Law in Washington, DC. The event, organized by Public Citizen’s Justin Mendoza (@JustinDMendoza), featured three days of speakers and panels in which activists, legislators, and experts addressed topics related to drug pricing. Here are seven themes that emerged from the conference:
1. There is no room for Pharma in patient advocacy.
Several speakers stressed that patient advocacy with industry ties is NOT patient advocacy. For this reason, Gregg Gonsalves (@gregggonsalves) says, advocates have a duty to “call out” friends who work for organizations that accept funding from Pharma.
This perspective was reinforced by Marina Tsaplina (@thebetesorg), Founder and CEO of THE BETES Organization, who described her own conflicts of interest while the recipient of funding from drug manufacturers. “There was no overlord watching over me, but I did think twice before posting something critical of the industry,” Tsaplina said. In other words, money does influence.
“Our opponents are putting people in cages. Why should we aim low when our opponents aim high?”
2. Advocates should set high goals.
Often, progressives and health justice advocates are told that they should settle for reasonable or “more realistic” goals. For instance, they are told to ask for states to eliminate “gag clauses,” which prohibit pharmacists from informing patients if a prescription is cheaper without insurance, instead of demanding lower list prices. Alec Lawson (@alaw202) contradicts this advice. “Our opponents are putting people in cages. Why should we aim low when our opponents aim high?”
Many other conference participants, including those participating virtually, echoed this idea, while nonetheless urging advocates to celebrate any effort that “moves the needle.” For instance, Erin Gilmer (@gilmerhealthlaw) tweeted in response to news that pharmaceutical industry leaders dropped a lawsuit challenging a drug price transparency law in Nevada, while also indicating that the industry may not fully comply with the public’s requests: “Fight for the big wins, but celebrate and thrive on the small wins.”
3. Advocacy and activism need to make every body visible.
It’s not a surprise that health and disability rights movements have historically been dominated by Whites. There are practical reasons for this. As panelist Ola Ojewumi (@OlaOjewumi) explained, “it’s safer for [White bodies] to be taken away in handcuffs.” White disabled bodies are perceived to be less threatening to the social order, which explains why they are sometimes used, rather insidiously, to speak for the culture that does not tolerate disability in the first place. See Robert McRuer’s discussion of how society celebrates wounded veterans to direct attention away from the horrific treatment of nearly all others living with disabilities or chronic conditions.
But this kind of advocacy is detrimental to health and social justice movements. Marginalized voices deserve more opportunities to speak. Ojewumi calls upon White advocates to, “Pass the mic. Pass the privilege.” Her co-panelist, Reginald Brown (@Kolonakumou), asked, “Who’s not in the room here? We need to get those folks on the margins in this room.” And Jane Dimnwaobi (@GlobalGiving) put it this way: “intersectionality is non-negotiable.”
4. Ableism pervades health advocacy.
Throughout the conference, it became increasingly evident that health movements have a lot of work to do to make activism more welcoming of those with disabilities. Panelists and participants commented on the unfriendliness of the venue, with its stepped entries and auditoriums, as well as the lack of conference resources. For instance, there were no translators, distributed materials were difficult to read, and panelists did not prepare notes to pre-circulate for those in need. Panelist Matt Cortland (@mattbc) identified some of these and other violations in a Twitter thread.
Others noted the ableist culture that prevails in certain patient and advocacy communities, such as the frequency with which events are organized around physical activities (walks or marches, for instance). Bottom line: health advocacy needs to be “cripped.”
5. Human rights are central to health advocacy.
Recently, a handful of progressive intellectuals have warned that human rights thinking and activism have serious limitations that deserve fuller attention. For instance, Samuel Mohn wonders why human rights movements “have been able to coexist so comfortably with neoliberal regimes,” while Stephanie DoGooyer and Alistair Hunt wonder if human rights have become so vague that they lack political import.
But numerous panelists at this conference emphasized the critical role that human rights rhetoric plays in health advocacy. For instance, Matthew Kavanagh (@kavanaghmm) stressed that human rights rhetoric catches the public’s attention, while also shifting focus from corporate stakeholders’ rights (to compete and make profits) to individuals’ rights. Elizabeth Rowley (@erpfiester) described how human rights connects advocates around the world under one rubric (in her case, the human right to access insulin).
6. Advocates need to take breaks.
Advocacy is exhausting, especially for those who are already managing a chronic condition and/or a full-time job. This idea was best-captured by Laura Marston (@Kidfears99), who compared managing her chronic illness (Type 1 diabetes), working a full-time job, and fighting to make insulin more affordable to “playing a never-ending game of Tetris.”
Elena Hung (@ElenaHung202) commented on the demands of advocacy from her perspective as a mother and primary caregiver of a child with complex medical needs: “I am tired of having to go out and convince people that my child deserves to live.” She encouraged fellow activists to take breaks when they need them and to rest assured that when they can’t show up, others will.
7. Civility is a privilege.
Responding to public calls for citizens of all stripes to be polite and to return to civil debate, advocates stressed that the stakes are simply too high to be delicate and tip toe around the issues. One conference attendant was overheard saying, “kumbaya politics is killing people.” Not to mention, anger has discursive potential, according to Stephanie Aines (@rightcarenow) and Cate Bonacini (@cbonac). It can lead to new insights, and it increases the urgency of action.
For more conference news and take-aways, check out the #AffordableMedsNow hashtag on Twitter.
 Crip Times (2018).