Mighty Casey Media: Comedy Health Analyst
Stop screaming. Laughing hurts less.
This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.
Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.
I had the great good fortune of being asked (by WEGO Health) to participate on a panel titled Social Media for Pharma: A Match Made in Heaven or Hell? at the ePharma Summit in New York (#epharma) earlier this week. When the opportunity presented itself, I asked to be registered for the whole event so I could do my fly-on-the-wall thing by attending some sessions and schmoozing in the exhibit hall.
What did I learn? I learned something I already knew: pharma, and healthcare in general, talks a good game at the corporate level about “engagement” when it comes to patients. However, their use of the word tends to run along engagement-as-shiny-object-syndrome lines; in other words, passive message consumption is the desired model, since two-way dialogues are problematic, with pharma afraid of FDA bitch-slaps in the form of warning letters and healthcare in general sweating bullets about the powerful bitch-slap known as the HIPAA violation, given the $1.5M fine potential.
I understand their aversion to drawing the gimlet eye, and the ire, of the feds when they’re considering how to communicate with their marketplace. Pharma is a conservative, slow-to-innovate business that’s focused on shareholder value and ROI for said investors, given that they can spend billions developing a new drug for market before they can sell the first pill of said wonder drug. At least, that’s what pharma balance sheets and annual reports tell us.
Pharma is anxious to open dialogues with its customers – the real customers, patients – but isn’t sure how to go about doing that without winding up in deep kimchee with federal regulators. That was the purpose of the panel I was on: to let pharma know what kind of conversation patients were looking for, and what we’d like to hear from the pharma industry. Our group members were:
We all said that we would welcome some real dialogue with pharma: not sales language, but human language. Stop telling us to “ask our doctors about” – which is useful, but only half of the conversation equation. Pharma should ask patients how and if they – pharma and its products – are actually helping. The snowflakes in the post title aren’t the snowflakes that flurried a bit in New York on Thursday, they’re from my exhortation from the podium (and everywhere else):
“If we’re all snowflakes, unique in our genomic makeup and completely different from any other human on the planet, where’s my snowflake medicine?”
I know that snowflake medicine is not only possible, it’s here: pharmacogenomics is a new science, but it’s in commercial use and has been for a few years. I’d like to know why it isn’t part of every single prescription decision, but I’m an impatient early adopter. I know that pharma is still operating on a population health model, but that is so 20th century, dudes. Real innovation is already happening, yet pharma’s business model is still in “find the blockbuster drug that works OK in 60-70% of the population with Disease X, and we’re in the money!” mode.
My prescription for pharma execs is to read Eric Topol‘s The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care – that will both scare them to death (no more population-based medicine) and show them the map to the future (agile development of targeted therapies). Give me and everyone else our snowflake medicine: some of us are literally dying to get hold of it.
My takeaway from #epharma? Patients are still seen as exotic creatures by pharma, but I sense that they’re anxious to learn more about us beyond our diagnoses. My recommendation: Look for influencer patients in the health communities that use your products. Open a one-on-one dialogue with them, ask them how your products are perceived. Explore opening up some private-channel community conversations (NOT on social media!) that can involve your clinical team, doctors who prescribe your products, and the patients that take them. Listen and learn.
If you need help wrangling internet and social rules for pharma out of the FDA, tell us – patients – what you want to accomplish, and let us storm the castle. Embrace the snowflakes. Avoid the bitch-slaps. Help create better global health. Patients are the only real blockbuster drug left in the 21st century.
Thanks for listening.
In its rigorous search for food & drug safety, the FDA added searching through the personal emails of agency employees who questioned FDA decisions.
That would be an oops – for both sides of that story.
Here’s the lowdown: on Sunday (Jan. 29, 2012) the Washington Post reported that the FDA was being sued by staffers – scientists and doctors charged with testing medical devices – for harassment and wrongful dismissal as a result of the agency’s surveillance of their personal email accounts. That email surveillance revealed that the FDA staffers were contacting Congressional staff with whistle-blower complaints about FDA approval of devices that the scientists and docs thought were a risk to patients.
Hue and cry! Bad FDA!
Actually, I agree that the snoopy surveilling of personal email accounts is creepy, even wrong.
However, here’s the rub: the FDA staffers were accessing their personal email using computers at work. At the FDA. Within the Federal government IT infrastructure. You know, the people that oversee other stuff like Echelon. And the Pentagon. Gee, FDA guys plotting whistle-blower campaigns on work computers – stupid much?
On the FDA side of the story, we have creepy fascist tactics deployed by an agency that should be all about making sure that no pharmaceutical, no medical device, no food product makes anyone sick. Or worse, dead.
The record there? Not so stellar. Can you say Vioxx?
On the outraged-former-employee side of the story, we have some folks who thought they were veryvery smart (scientists and MDs always think that, trust me), but who played veryvery stupid on the interwebz.
Accessing personal email on a computer that belongs to your employer is pretty dumb if you’re doing or saying anything that casts a shadow on the hand that feeds you. Yes, that means you become the bad dog, and that’s not a great role to play. Because “no-no-bad-dog!” translates to “your ass is fired” in this scenario.
Even if you’re on your own computer, and you’re using your employer’s network or VPN, you have no reasonable expectation of privacy.
It boils down to this: just like anything else on the web, don’t put anything on it/through it unless you’re willing to either have it on page 1, above the fold, of the WaPo or the New York Times. Or your boss’s desktop.
The saddest part of this story is that the FDA really does need a total tear-down. It’s become too obstructionist to what could really improve public health, and too easy-peasy for big-money players who want to make the system work for Citizen Corporate, not Mr./Ms. Every-patient.
This lawsuit could become quite the precedent-setter, if it gets past the lower courts with its plaintiffs intact.
Stay tuned for further developments. I sure will.
That’s my story, and I’m stickin’ to it …
I had the opportunity to speak at a digital pharma marketing conference – DTC Perspectives’ Marketing to the Digital Consumer – last week. “DTC” is Direct To Consumer, by the way. I was representing the patient voice, at the invitation of my friends at the health activist community WEGO Health.
It was terrific for several reasons – connecting with other healthcare social media peeps in pharma, meeting and mingling with some powerful voices in pharma leadership, learning more about the regulatory environment that pharma marketers work in – but the biggest “wow!” that day happened between my ears.
I realized that pharma – and healthcare in toto – is desperate for its own #arabspring. A complete re-alignment of the entire system, driven from the bottom up, that will benefit all players: pharma, health systems, clinicians, researchers, patients … people. All of us.
This epiphany arrived courtesy of a combination of factors.
First, I felt a little like a zoo animal, since I was the only one at the conference wearing an Official Patient sign. I found that amusing, since everyone in the room is a patient at some level, even if they’re only seeing a doc once a year for a check-up. I’m not even a pharma consumer who’s on a buffet of drugs, although I do take a fat handful of supplements every morning. Why are patients seen as exotic creatures by pharma, and by most of the healthcare industry?
Patients = people, people. Treat us like … people.
Second, since I also wear a PR/media/content-creator hat, I saw that they were making a real effort to understand how they could take advantage of social media as a direct-marketing tool. They were approaching this as an industry with a huge regulatory oversight burden, from the FDA to the US Patent & Trade Commission to the host of regulatory bodies in other countries where these companies sell pharma products to doctors or direct to consumers.
Some of the regulatory step-on they’re struggling with they brought on themselves with “me-too” drug formulation and disease-mongering (“restless leg syndrome”? Really?). In conversation with a couple of high-level folks from big pharma, I learned that they routinely hear “we’ll have to run this past sales” when they want to try a new approach to communicating with their market. Why does sales drive communication? If pharma wonders why they’re seen as a scrum of hucksters, look no further than “running it past sales” when it comes to new ideas.
That combination of being seen as an exotic because I was a patient, and recognizing that, as an industry, pharma is an inverted pyramid crushing itself under the weight of heavy regulation caused, and continued, by a run-it-by-sales communication model, led me to the idea that people (a/k/a “patients”) need to #arabspring this b*tch.
People – patients – need to examine their relationship(s) with healthcare, and pharma, and ask what value they are getting from those relationships. Tell those that help how they’re doing, and tell those that aren’t to either clean up their act or take a hike.
Don’t fall for disease-mongering.
Don’t settle for less-than-full disclosure from any of your healthcare providers – in other words, ask why your doctor is prescribing a name drug, if a generic is available.
Act as if your health is YOUR responsibility. Get off the couch, call a halt to drive-through nutrition, examine your habits and ditch what doesn’t serve you, and your health.
Engage with pharma companies who provide you or your family with drugs that work, and tell them so.
Rabble-rouse the FDA to stop standing on innovation, and to start freeing up both farm AND pharm to help us eat better, and help researchers bring new drugs that actually help to market.
Take to the the streets by visiting your local farmer’s market and buying/cooking local. Boycott processed cr*p disguised as food.
The presentation deck I used at the conference is linked here.
I welcome comments, arguments, suggestions.
I recommend that you read my buddy Phil Baumann’s take on “we are all patients”. (He’s right, BTW – which is why I say patients = PEOPLE, people.)
That’s my story, and I’m stickin’ to it …
