Dear Big Pharma,
You have caught on to the fact that health advocates are one of your most important resources. This is smart. We are indeed the ones who have the thumb on the pulse of patients’ unmet needs. We know what sort of tone they will appreciate and what will turn them off. We know what sort of basic information and support they need that cannot normally be found at a general practitioner’s or even a specialist’s office. We have endless ideas about how you might soothe, inform, and gain the trust of patients by actually helping them to access the right resources. We know how you can use your power and influence and money to do good. And after being offended by many a condescending and diminishing advertisement, perhaps most importantly, we know how you should NOT talk to patients.
So we are one of your most valuable resources, and yet, you ask us to work for free. How do you manage this?
Much of the work we do as advocates is unpaid. We often start out as volunteers, arriving at the hard work of challenging stigma and spreading information because we are patients ourselves, and are desperate for answers and better support. For us, the stakes are high. Some of us find purpose in advocacy work because we have been forced to leave other careers behind. Some of us are caregivers and hate to see our loved ones suffer. We do this work because it matters deeply to us.
But it is still work.
Because our society places such enormous value on productivity and earnings and health, we are already feeling devalued. We have to fight every day to see our own worth. (Fellow chronic illness patients and advocates: I see you. I see your worth.) In what other line of work will an experienced consultant fly across the country, devoting their time and energy to share specialized knowledge and experience with a massive for-profit corporation, and not expect compensation? When you reimburse us for the trip, or give us a measly little stipend, you are taking advantage of the societal paradigm that devalues our existence and our efforts.
In addition to the energy spent to show up, many of us will spend days or weeks recovering our health. This can amount to a long term loss of productivity and major financial losses.
You can probably continue to find advocates who will work for free, but please don’t. (And advocates, please don’t offer pharma companies free work.) [*EDIT: I understand that this is a controversial issue, and that there are many reasons why accepting money from pharmaceutical companies can be tricky, including the danger of being perceived by our audiences to condone big pharma’s unethical practices. While I believe personally that we should be compensated for our work, and hope other advocates will agree with me, I respect those who disagree for their own personal reasons or principles and am open to hearing about those perspectives.]
Pay us because we are valuable and worthy.
Pay us because your pockets are lined and ours are often empty.
Pay us because we are the ones who ultimately line your pockets.
Pay us because you can.
And while you’re at it, maybe you could take a look at reducing your own expenses in order to make life-saving drugs more affordable. What was that Capitalism? Nah? Okay, I tried.
p.s. Don’t worry about corrupting us with your crisp dollar bills; we’re a pretty skeptical bunch.