Dear Pharma: We’re Done Doing Your Dirty Work

Most of the time I feel like, as a whole, the healthcare sector lives inside a hyperbaric chamber, comfortably isolated from rational thought, devoid of common sense and naive to the basic appreciation for having a strategy with defined goals.

I recall in the original Toy Story film, Woody exclaims to Buzz that he wasn’t actually flying, rather, he was “falling with style.” And that, my friends, is my summary executive professional audit of our ever increasingly lethargic, myopic, fractured, over-regulated and hyper-fatigued healthcare (or should I say “sickcare”) system.

It has been my experience, both personally (as a young adult brain cancer survivor) and professionally (as Founder/CEO of Stupid Cancer), that this viscous morass of ineffective — yet somehow self ingratiating — reality is no better anthropomorphized than by the Pharmaceutical industry, specifically oncology.

With notable exceptions, to say they are their own worst enemy who couldn’t find their way out of a phone booth would be an understatement. As I have written about previously ad nauseam, the endless cornucopia of fancy buzzwords (patient-centric, patient-forward, patient reported outcomes, adverse events, ePatient, ePharma, Digital Pharma, etc.) spewing from the mouths of babes has become a veiled self-congratulatory tactic for industry to lay claim to being “innovative” and “disruptive.”

Quite the contrary, this self-flagellating hubris and back-patting couldn’t be further distant from the merits it claims to represent. When there is truly no “there there,” all we are left with is verisimilitude of strategy and effectiveness.

Case in point the myriad times Stupid Cancer, the largest patient community of adolescents and young adults, has been approached to engage with Pharma for the seemingly innocent intention of helping patients.

Stupid Cancer is always up for a partnership that identifies mutual challenges, structures shared goals, sets forth a plan to achieve those goals and ensures measurement of any outcomes from those plans. Be it awareness, navigation, community, direct support, resource literacy or other necessary services, patients — especially the newly diagnosed — are faced with unbridled fear when the world blurs and nothing makes sense. We are here to help.

Now herein lies the rub.

Pharma, by and large, does not understand that the nonprofit sector, specifically patient advocacy organizations, are businesses. We have income, operating expenses and, hopefully, margin for reinvestment and scalability. Partnerships means mutual ROI. Our time is worth just as much money as yours.

You are a grillion-dollar corporation with scores of employees. We are a $2M charity with six employees. You need our insights, our ideas and, more specifically, you need our patient community. And guess what? Our patient community needs you too; and they are emphatic to have that conversation. Your drug is for melanoma? We’ve got melanoma patients. Breast cancer? We’ve got them too. Your pipeline shows promise in lung cancer and renal cell carcinoma? Guess what…. we’ve got those patients too.

Oh, what’s that?

Your advocacy and marketing budgets were cut again? Poor thing. You want to pay a charity $10,000 for a service that for-profit businesses charge $100,000? Or, better yet, you think we should just do it for free because #reasons?

Have a nice day.

This is a pay to play game, people. Cost of going business. That’s right. Business. Not charity. You need something, you pay for it. We do not give away the farm for free and neither should anyone else. We are not your grinder monkey.

Stupid Cancer did not proudly become the valuable commodity it currently is without money. Money from incredible donors and select enlightened business partners who not only realize the social impact their contributions make, but who understand that “charity” is just a word. This is business.

So let this be a lesson to all nonprofit CEOs out there. You, your programs, assets and communities are a commodity. Assign a value to your worth and accept nothing less. Because there’s nothing better than a nonprofit saying “no.”

That is real innovation and disruption.

Dear Pharma — enjoy doing your own dirty work and watch as whatever perceived competitive advantage you may have evaporates.

That is all.