Angelina Jolie’s decision and beautiful healthcare marketing

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So rarely is healthcare marketing a beautiful thing.

The television commercials are boring, replete with mind-numbing lists of side effects. The social media efforts have as much resonance as teachers talking in a Charlie Brown comic. And the detail aids ramble on for 20 pages teasing out the minor differences between competitive medications.

But Angelina’s decision to have a double mastectomy shows healthcare marketing’s inner potential. By pairing the sexy science of genomic medicine with the breathtaking boldness of patient empowerment, Angelina has given us a glimpse into it’s beautiful potential. Like an ugly duckling, a beautiful swan awaits in the future.

That is, if the marketing focuses on bringing highly targeted medications to market in a way that patients can understand, act on and pay for.

Consider the science—it’s truly mind-boggling. Take for example, exon skipping and muscular dystrophy. Through genetic testing, we can identify which teeny tiny piece of a gene is missing, what impact it has on patient functioning and most importantly, devise a medication to bridge the gap. Beautiful healthcare marketing will focus on bringing this science to life versus bludgeoning the competition.

And then there’s the promise of true patient empowerment. Prodded by increasing responsibility for healthcare costs and enabled by technology and transparency, patients are taking charge. With efforts like Minnesota’s D5, Five Goals for Living Well with Diabetes, patients choose clinics that have the best record of treating their diabetes. With the recent revelations by Health and Human Services about the cost of common hospital inpatient services across the nation, patients vote with their pocketbooks. With the explosion of genomic testing, patients find out what diseases they are at risk for and take action. Beautiful healthcare marketing will provide the decision support needed patients sort through the options.

But not everyone faces life as fearlessly as Angelina Jolie. Nor do many patients as she notes in her amazing New York Times Op-Ed, My Medical Choice, have the resources to access it, in terms of both overcoming fear and financial limitations. Extended outreach, support and skill building will be necessary to make sure everyone benefits from the genomic revolution. And beautiful healthcare marketing can play an important role.

Thanks for letting us share.

Dorothy Wetzel

Orphan Lit: Patient perspective on the Risk Benefit Trade-off

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Continuing extrovertic’s interest in Orphan Drug Literature, I read an inspiring book, “Reaching Beyond the Clouds,” by Cindy L. Abbott. The book takes readers from Cindy’s diagnosis with the rare disease Wegener’s Granulomatosis through her successful ascent of Mount Everest. I thank the OrphanDruganaut post for introducing me to this riveting book. As rare as Wegener’s is (less than 3,000 people are diagnosed each year in the US), the number of American women who have summited Mt. Everest (45), is even smaller.1 Cindy managed to accomplish something even more rare than her disease.

Reaching Beyond The Clouds

In addition to being an inspirational read, the book provides perspective on how patients with rare and orphan diseases view risk benefit choices. As a consequence of her disease, Cindy had lost much of the sight in her left eye before she even embarked on her mountaineering path. With so little known about the disease progression of Wegener’s, it was a major risk for Cindy to scale any mountain, much less Everest. Would the high altitude conditions result in more vision loss? Would the relentless freezing conditions make her even more susceptible to the frostbite?

Weighing the well-known risks and rewards of summiting Everest, factoring in the additional unknowable risk that her disease posed, Cindy decided to go for it. As she says, “I wasn’t about to allow the disease to become the writer and director of The Life and Times of Cindy Abbott. I had a mountain to climb, and Everest was what I focused on.”

Cindy’s risk benefit trade-off is just an extreme version of the types of decisions parents of patients with rare and orphan diseases make on a daily basis. Do I let my daughter with cystic fibrosis swim in a murky lake with her friends where she could be exposed to potentially exacerbation causing mold? Or do I keep her home and make her feel even less like a normal teenager?

So it stands to reason that these patients and their family members are especially well equipped to consider the trade-off of a new therapy requires; e.g. is the benefit of the drug worth the risk of a potentially dangerous or life-threatening side effect?

The FDA recognizes rare and orphan disease patients may have a different perspective about risk benefit trade-offs than patients suffering from more common and less life-threatening diseases. In fact, the FDA has an entire initiative dedicated to infusing the voice of the patient into the approval process for drugs that treat rare and orphan diseases. The FDA initiative is called, “Patient-Focused Drug Development.”

As outlined in the FDA website, the rational for this effort is that “drug development and FDA’s review process could benefit from a more systematic and expansive approach to obtaining the patient perspective on disease severity and current available options in a therapeutic area.” A key component of this initiative is a series of patient meetings in 20 different therapeutic classes over the course of 2013-14.

The implication for marketers is that if the FDA is stepping up their efforts to get the voice of the patient into their approval process, shouldn’t industry be doing the same? It is a fairly common practice to hold patient advisory boards 1-2 times a year. The larger challenge is incorporating a continual drumbeat of the patient voice into your drug and communications development. Here are two suggestions:

  1. Meet regularly with individual patients. Make it a practice to bring a patient into your office once a month or at the very least, once a quarter. Set up a series of small meetings with your colleagues and agency partners. Have the patient tell his or her story. One of my clients did this regularly, every time she met a particularly articulate patient. It gave the entire organization an incredible empathy for patients and made it easier to secure funding for patient programs.
  2. Analyze online patient conversations. With the right tools, the patient journey can be mapped out using online patient conversations. Patient needs and emotional states can be pinpointed for each stage of the journey. And the results can be obtained more quickly and economically than traditional research.

Of course, there are risks involved anytime the pharmaceutical industry interacts with a patient. Are you inadvertently giving away confidential market-moving information? Are you raising false hopes?  But the benefit of delivering a drug or piece of education that truly meets the needs of the patient surely outweighs the risk.

1. According to “Reaching Beyond the Clouds” as of 2010 45 American females have summited Mt. Everest

Superhero “Pharmers”

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At the beginning of the year, I wrote about superhero family members of patients suffering from rare and orphan diseases. These individuals amazed me with what they could accomplish. Everything from garnering major media attention to finding cures to diseases suffered by their loved ones.

Now I find myself in awe of another group-current or former Big “Pharmers” who take it upon themselves to tackle significant unmet patient needs, either by changing careers or in their spare time! Consider the two superhero “Pharmers” I ran into at the 3rd Annual World Orphan Drug Conference last week.

  1. Jason Fisher, a former Pfizer colleague of mine, who left Pfizer to form Mico Bio, a company dedicated to helping defeat tuberculosis (TB) by developing an inhalable vaccine. While most people think of TB as a third world problem, it is increasingly making its way to the first world according to a recent article in the Wall Street Journal. Jason bootstrapped his company for several years and then got funding both from the NIH and investors. Last month, Jason received a patent on his vaccine. And he did all this with just one employee, using technology to stitch together the financing, R&D and legal help needed to prove his concept.
  2. Marisa Dolled-Filhart,Phd,  who labors in a Big Pharma lab by day and volunteers for Rare Genomics Institute(RGI) by night. Founded by geneticist Jimmy Lin, RGI is a non-profit organization that combines personalized genomics research and innovative funding mechanisms to better understand and treat rare diseases. Patients register with RGI, confer with a patient advocate and get referred to a geneticist /researcher team who ultimately oversees their genetic sequencing. The costs of the genetic sequencing are raised via a crowd-sourcing mechanism where people can donate money to individual patients. RGI received significant press coverage when their efforts led to the discovery of a new disease in a young child named Maya.

Both Jason and Marisa are great examples how passion, fueled by technological innovation and a willingness to do things differently, can empower individuals to make major strides towards addressing unmet medical needs.

Correction 04-24-13: The original April 17th version of this blog post may have seemed to imply that the Mico Bio’s vaccine was primarily focused on multidrug-resistant (MDR) TB. While Mico Bio will target inclusively MDR TB, data on the vaccine’s effect on MDR TB specifically is not yet available.

Three Lessons from the Frontline of Patient Engagement

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Last month I had the pleasure of attending the 6th Annual Consumer Directed Healthcare Forum in Washington D.C. The goal of the conference was to provide the latest updates on the consumer directed health plans (CDHP) which are a benefit design that combines a high deductible health plan (HDHP) with either a health savings account (HSA) or health reimbursement account (HRA).

These accounts were introduced in 2003 as a way to control skyrocketing healthcare costs. Since costs for routine care were coming out of the consumers’ pocket, the theory was that they would be driven to seek the most cost-effective healthcare options. And according to two studies, the 9th annual Aetna HealthFund® study and the 2012 RAND Health study these plans do indeed produce significant savings.

As we approach the implementation of the Affordable Care Act (ACA) and the advent of the public healthcare exchanges, the experience with the CDHPs provides lessons for driving patient engagement. Increased patient engagement is critical not only for health plans seeking to control costs but also for pharmaceutical companies seeking to drive diagnosis, treatment and adherence.

Here are three key lessons to be learned from health plan marketers on the cutting edge of patient engagement:

1. Free isn’t free enough. Many of these CDHPs provide routine preventive care free of charge. But just because something is free, it doesn’t mean consumers will “buy” it. In fact the RAND study found that usage of preventative care was down overall in the CDHP plans they studied.

However, some plans, such as the Aetna CDHP, were able to decrease costs and increase usage of preventative care services. According to one of the conference speakers, Mildred Washington, Product Manager of consumer directed plans for Aetna, “The success of your CDHP strategy relies on consistent, ongoing communication and education throughout the year.” Aetna saw increased use of preventative services and educational tools because they employed a comprehensive communication program throughout the consumer’s journey, supporting them from pre to post-enrollment.

So whether you are product manager of an insurance product or a pharmaceutical brand, designing an effective preventative care or adherence program is only the first step. Even the best program won’t be adopted without considerable promotion.

2. Language counts.  If you are trying to drive patient engagement, the first step is ensuring that the consumer understands what you are saying. According to Kristin Conley, VP Digital Solutions, Health Care Service Corporation (HCSC), some of the surprising misconceptions patients had were, for instance that the words:

  • policy meant a set of rules rather than an insurance policy
  • agent evoked FBI rather than insurance agent

So in designing their digital solutions, HCSC made sure to use consumer friendly language such as “Find a Doctor” versus “Provider Finder.”  With the individual health plan market poised for growth, it is critical that Health Plans make health literacy an important part of their outreach strategy as they morph from B-to-B into B-to-C organizations.

3. Leverage the familiar to create new behaviors. A core component of healthcare reform is encouraging smart shopping. Depending on the facility a patient chooses, the cost for the same medical in the same town can cost as much as 683% more.

So how do you get patients to shop for healthcare services? By mimicking the experiences they have shopping for other goods and services. For example, when HCSC designed their online health portal, they sought to mimic traditional online shopping portals like Amazon.com.

Some health plans such as Blue Cross Blue Shield, Human and Aetna are going so far as to build a physical retail experience. This ranges from Aetna’s store-within-a-store concept with COSTCO to full-blown outlets in strip malls by Florida Blue Cross Blue Shield. Kevin Riley, former Chief Innovation Officer for Florida Blue says these stores won’t be big profit makers but will represent a competitive advantage as consumers are thrust into health care exchanges for their health insurance needs. I also believe a physical presence could be a competitive advantage for pharmaceutical brands too! It certainly is a testable proposition.

So as we move closer to the implementation of the ACA, a mere 9 months away, the frontline of patient engagement is now at every healthcare marketer’s doorstep. What are you doing to get ready?

How Pepsi Can Be A Model For Patient Engagement

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In the last few posts, I wrote about superhero patients in the orphan drug space, a new group of empowered people and their families with the ability to turn molecules into marketed drugs. These people raise awareness, fundraise, lobby government, and fill up clinical trials—feats that used to be the sole province of large pharmaceutical companies.

So clearly, engaging these superstar heroes requires something different from traditional patient marketing. One possible model is Pepsi’s arrangement with a superstar of a different sort, Beyoncé. She recently inked a $50 million dollar deal with Pepsi that, according the New York Times, is “a hybrid project … that will include standard advertising like commercials as well as a multimillion-dollar fund to support the singer’s chosen creative projects.”

Pepsi sees this deal as a “a shift in the way we think about deals with artists, [moving] from a transactional deal to a mutually beneficial collaboration,” according to Brad Jakeman, president of PepsiCo’s global beverage group. According to a statement from Beyoncé, the new deal “allows me to work with a lifestyle brand with no compromise and without sacrificing my creativity.”

Why the new model for Pepsi? The company says it is responding to the changing expectations of its consumer base. According to Jakeman, this shift responds to young consumers’ desires for “a much greater authenticity in marketing from the brands they love.” The traditional approach of concert sponsorship is still important, but insufficient, to reach savvy, young consumers, according to Jakeman.

To me, the parallels between Pepsi’s approach and orphan drug marketing are like a brick to the forehead. Working with the Beyoncés of the bio-pharma world, the patient advocates, and their organizations, engagement has to be highly collaborative with significant “no-strings attached” elements, such as unrestricted grants and access to trial results and scientists.

In terms of an ROI, Pepsi is seeking “to enhance its reputation with consumers by acting as something of an artistic patron instead of simply paying for celebrity endorsements.” For bio-pharma, the rewards of this new patronage model seem even greater. Because, despite her enormous talent, Beyoncé can’t actually put a can of Pepsi on the grocery store shelf. But patient advocates can help put a product on the pharmacy shelf.

So in planning patient outreach and engagement, think about using Pepsi’s new patronage approach. It just might help you bring products to market faster than the traditional approach.

Thanks for letting us share.

Dorothy