Regulatory Killed the Radio Star

In 2007, I founded Stupid Cancer, a 501(c)3 nonprofit organization whose mission was to empower young adults affected by cancer. It was to be the support community I wish I had when I was first diagnosed with brain cancer in 1996 at the age of 21.

In premeditated fashion, I ordained the charity to function as a consumer brand rather than a traditional cause. Why? It’s what I knew how to do after a 10-year career in the agency world. Stupid Cancer was designed to attract and mobilize Millennials at the nexus of youth culture, social media, online content sharing and digital health. Its DNA was fueled by a philosophy of collaboration, innovation and disruption.

Stupid Cancer wound up kick-starting a national social movement to end disparity and bring equity to hundreds of thousands of people affected by young adult cancer. To date, Stupid Cancer has raised over $3 million, generated five billion media impressions, welcomed 5,000 conference attendees, hosted 500 meetups, produced 295 radio broadcasts, sent literature to 2,500 clinics and hit 113,000 likes on Facebook.

Improving Patient Outcomes

Seven years later, the evidence for how it has fostered a radical and tangible shift in improved patient outcomes is overwhelming. This is a movement that can confidently boast that its efforts have ensured that a young adult diagnosed with cancer today is better off than in 2007. Two tangibles: 1) the American Society for Clinical Oncology now has added accredited young adult curricula to its 30,000 members and 2) the Society for Adolescent and Young Adult Oncology was formed as the first organized professional consortium of its kind to curate and publish clinical young adult research. There’s even a new cancer center in Seattle just for young adults (OK, that’s three).

My bottom line is that this is a patient population unlike anything else out there, the likes of which have not been seen since the early days of the AIDS movement when a small group of thoughtful, committed citizens changed the world. They are energized, mobilized and angry for change—not just because they are grossly underserved, but because they know they can actually make a difference for the next “them.”

They are hundreds of thousands strong and they are an audience you need to pay attention to. Why? Because if they can move the needle on outcomes like this without any direct engagement with the pharmaceutical industry (outside of unrestricted grants), think of the progress that could be made if there was actual communion.

Consumers As Influencers

As discussed in my previous article (It’s The Patient, Stupid), 21st century regulation was a good idea at the time it was conceived, the concept being to curb greed, egregious and unnecessary spending and unethical influence marketing. But in today’s interconnected world, the source of influence now emanates from the consumer side. I believe that the folks in charge of evolving the PhRMA guidelines (and their ever-encroaching restrictions and penalties) never anticipated this massive social change. This progress has painted regulatory into a corner because now it’s doing more harm than good.

Yes, I said it. Regulation is now a barrier to improved patient outcomes.

Specifically, it has fostered a neutered and risk-averse environment driven by panicked attorneys and shareholders. This passive-aggressive environment restricts innovation and has pretty much dismantled the bridge between patient advocacy organizations (PAOs) and the marketing goals of pharma.

In the age of social, mobile and digital, pharma’s inability to meaningfully engage with PAOs is a shame. There is no better example of this spayed environment than the hands-off, robot-driven unrestricted grant portal. Where is the B2C engagement? Hell, where is the B2B engagement? It’s not for lack of want.

Terrified lawyers and the perceived threat of influence marketing have transformed from a once-useful anti-corruption tactic to regulate an unethical industry to the very embodiment of bureaucratic encumbrance to innovate.

Enter “Meet The Patients” (MTP), The Latest Product Offering From Stupid Cancer

If my decade in the pharma agency world has taught me anything, it’s to build efficiencies and cut out the middleman.

Stupid Cancer is launching a business unit and getting into the Patient Ad Board business to directly facilitate these solutions. With immediate access to over 250,000 patients, survivors and caregivers, we have the breadth of scale, reputation and core competency to pretty much source any one with any cancer at any age anywhere in the U.S. across any targeted issue or need.

Our MTPs are actually the evolution of the traditional agency-driven patient advisory board. MTPs are a regulatory-compliant turnkey product that more directly, efficiently and meaningfully brokers dialogue and learning between patients, PAOs and the pharma marketers who need insights, feedback and opinions from their customers.

They are private, moderated direct-to-consumer engagements and may be organized around any number of agendas or oncology-driven subject matters. These may include disease-specific compliance/adherence issues, digital health/social media practices, caregiver needs and/or psychosocial and survivorship issues. MTPs may also take the form of consumer insight (focus) groups or advocacy training workshops.

Tangible benefits for Pharma

Stupid Cancer represents a highly vocal, influential and underserved healthcare market segment that is demanding their voices and opinions be heard and leveraged by industry. All ages, all diseases in oncology. Tangible benefits to pharma can include 1) stakeholder relationship cultivation, 2) needs assessment and market research feedback, 3) improvements to messaging, product development and communications strategies and 4) gaining key insights into the understanding of attitudes, behaviors and opinions on compliance, adherence, brand loyalty, engagement and retention.

Patients want to be participatory in progress and change. They want to feel acknowledged, valued and heard by industry; and they want this to happen through positive avenues so they are confident industry is actually listening. In doing so, they will, in turn deliver value back to industry.

Regulatory killed the radio star.

Stupid Cancer brought it back to life.

“They took the credit for your second symphony; re-written by machine and new technology; and now I understand the problems you can see.” – The Buggles

  • Matthew Zachary

    Concert pianist and cancer survivor Matthew Zachary is the Founder/CEO at Stupid Cancer, the nation’s dominant youth and young adult cancer brand. An agency veteran, he launched a social movement by innovating the nonprofit model through disruption and social entrepreneurship.

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