Empowered patients are a driving force behind the development of therapies for rare disease, which is analogous to the future of healthcare as we move toward personalized medicine with the focus on the patient at the center
On February 9, I had the opportunity to speak at The Economist Pharma Summit 2012 in London. I was invited to join a panel discussion, “Putting the Patient at the Center,” along with Theresa Heggie from Shire HGT, Patrick Flochel from Ernst & Young, and Dominique Limet with ViiV Healthcare. The session was moderated by The Economist Science Editor Geoffrey Carr.
Billed as the strategic event for the pharmaceutical industry, each year the Pharma Summit brings together industry experts and thought leaders to identify trends that have the potential to transform the industry, and to hear from established players and new entrants who are completely changing the game. Keynote speakers at this year’s event included C-suite leaders from AstraZeneca, GlaxoSmithKline, Takeda Pharmaceuticals International and the UK’s National Institute for Health and Clinical Excellence (NICE). PharmaPhorum recapped the event with some highlights in a recent blog post.
Transformation of Big Pharma
From my perspective, I saw the Pharma Summit as testament to the monumental shift that’s taking place in the pharmaceutical industry. To a large degree, the business model that facilitated the growth of pharma for nearly 100 years has run its course. The approach that proved successful in the past relied on discovering an antibiotic or protein to treat a specific disease. Once discovered, pharma mined every possible application for the drug; and at this point, most of these avenues have been “mined out.”
This, along with other factors, is contributing to the current state of flux in the industry. One can only hope that industry response aligns with the approach outlined in the keynote address delivered by Simon Dingemans, chief financial officer with GlaxoSmithKline. He discussed the commitment at GSK to focus not on selling “products” but on addressing healthcare outcomes. This is a major shift in culture that will affect all levels of the pharmaceutical industry as it plays out—from incentives for the sales force to selection of the therapies chosen for commercialization, and the interaction of pharmaceutical companies with the other stakeholders. There’s a real opportunity for companies to take up the challenge. But pharma will need to ENGAGE and collaborate with patients, and start to earn back patient trust, which has been on the decline over the past few decades.
There’s also the need to identify different markets—both geographical locations, such as third-world countries, and different disease-states, including rare disorders. The traditional, conservative pharma business model is a mismatch for developing and marketing therapies to increasingly segregated and specialized segments. Rare disease therapy research is much more unpredictable than what we have “mined” in the past and will require a corporate mantra of high-risk and high-reward, which is more in synch with biotechs. Consequently, progress in the rare disease space will increasingly be under the purview of entrepreneurial biopharmaceutical companies to develop the therapies and sell them to big pharma for commercialization.
Innovation happens at the margins
Pharma must provide value by listening and anticipating the customer’s needs and wants. These are important considerations for the future as we move down the road toward personalized medicine. Biotech companies that are successfully marketing therapies for highly segmented populations can provide examples of best practices. They’ve had to adapt their model to engage patients and foster collaboration among all stakeholders. Additional marketing challenges confronting pharma vary from one country to another.
Laws for pharma marketing in the US and EU are very different. In the US, direct-to-consumer push marketing often results in patient distrust. But pharma also has the option of providing relevant content that addresses the unmet needs of patients as the basis for effective engagement marketing. Plus, a patient can contact medical affairs at a US pharma company to get answers to specific questions about a drug interaction. In Europe, all direct-to-consumer advertising is illegal. This makes providing valuable disease awareness information all that more essential.
So what’s happening in rare disease?
Although my expertise is specific to rare diseases and ePharma marketing, it also proved to be very relevant to the pharma industry attendees at the summit. Empowered patients are a driving force behind the development of therapies for rare disease, which is analogous to the future of healthcare as we move toward personalized medicine with the focus on the patient at the center. With ongoing research providing a greater understanding of genetics, diagnosis and treatment will become more tailored to each patient’s genetic makeup to optimize medical care and outcomes.
During my discussion I shared the six insights for rare disease patients, caregivers and HCPs that we’ve identified during the 10 years Siren Interactive has focused exclusively on marketing rare disease therapies:
- Rare disease patients and caregivers feel alone and isolated.
- They seek a connection with others like them.
- They use the internet to educate and support each other.
- Physicians don’t have the bandwidth to research every disease or therapy, which they may never see in their practice.
- Patient and caregivers are frequently the primary drivers of diagnosis and treatment; the roles of stakeholders surrounding patients have changed.
- They want pharma to participate, if pharma can add value authentically.
Knowledge is power
The internet, along with social media, has empowered patients; and no one has a more highly-vested interest in the outcome of the patient than the patient and caregiver.
- Deborah Kogan was giving her four year-old son, Leo, amoxicillin to treat strep throat. After three days and worsening symptoms, she posted photos of him on her Facebook page. Three friends immediately suggested he be tested for Kawasaki disease. They caught it early before any serious liver damage was done.
- John Crowley has two children with Pompe disease. It’s what got him into the biotech field, where he started Amicus Therapeutics and facilitated the development of a drug in the pipeline to treat the disease.
- Matt and Lori Sames organized a symposium for 22 scientists from around the world to develop a therapy for giant axonal neuropathy after their daughter was diagnosed with the rare disorder without a treatment or cure. They’re now on track to begin clinical trials for a therapy this year.
- E-patient Dave was diagnosed with stage-four kidney cancer and told to go home and get comfortable. After 20 minutes on the website for the Association of Cancer Online Resources (ACOR), he learned of a Novartis drug that could potentially save his life. He’s now traveling the world five years later talking about patient empowerment.
Where do we go from here?
The genie is out of the bottle. No matter where we live, technology has changed how we live and how we manage our healthcare. Gathering dust next to the old model for marketing blockbuster drugs is the communication model that confines the distribution of information from pharma primarily to physicians and largely ignores patients and caregivers. While we must respect the laws that govern healthcare in various countries, we need to recognize that no longer is patient access to information constrained. To thrive, pharma needs to leverage opportunities to engage patients for more effective research, clinical trials, and patient outcomes.
(Image courtesy of The Economist Pharma Summit 2012.)