Rare disease brand check-up

Sir Luke Fildes, The Doctor, 1891, © Tate CC-BY-NC-ND 3.0

For people with a rare disease, there is a lot to worry about. There is the disease itself, of course. Mortality, morbidity, disability, pain, stigma, and social exclusion--these can be the everyday reality for people like these. Too often, these factors affect those with common diseases as well. But people with a rare disease face even more challenges. Their conditions often go misdiagnosed and under-treated for years. Existing therapies can be as rare as the diseases themselves. And research to support new therapies can be even rarer. As a result, hopelessness can be the cruelest symptom these patients have to deal with.

I mention all this to make the following point: brand marketers in the rare disease space have a special responsibility to get it right. Yes, your companies need you to get it right. But in a very real way, so do the patients who can benefit from your brand. They are your ultimate stakeholders. And the medicine you market may be their last best chance at better health and greater hope.

In that spirit, I'd like to share some of what we've learned over the years. Our company, a brand consultancy that does a lot of work with big pharmaceutical companies, has developed seven rare disease insights. Here are three of them.

Consider all domains of life

Traditionally, drug companies do extensive research into the patient journey. That is, they develop a detailed understanding of how patients interact with healthcare professionals, healthcare institutions, and healthcare systems. They come to understand the hand-offs, the decisions points, the care gaps--all of which can provide important opportunities for their brands to create value for various stakeholders along the journey. But the classical patient journey may prove too narrow, especially in the context of rare disease. After all, we're dealing with people, not patients. People who date, who ride the subway, who have

Brands need to understand the wider ecosystem of relationships and experiences that patients live in.

a FaceBook page, who write letters to the editor. How does their medical status impact their experience outside of the healthcare system? To answer that question, brands need to understand the wider ecosystem of relationships and experiences that patients live in. They need to understand cultural contexts, digital behavior, work and school settings, and other life domains. For example, understanding the cultural legacy of the Tuskegee Syphilis Study may help a drug manufacturer more effectively enroll African-American patients into clinical trials for Sickle Cell Disease.

Advocate for Advocates

People with a rare disease often have to struggle with the problem of invisibility. Their needs can be invisible to healthcare providers, to the society at large, even to caregivers. That's why patient advocacy groups or community-based organizations (CBOs) play such a crucial role in rare diseases. CBOs exist to make their constituents visible. In some cases, CBOs are highly professional organizations with significant funding, a vast armamentarium of resources and best practices, and well established networks of influence. But in many cases, it's exactly the opposite. CBOs, especially in the context of rare diseases, are often tiny volunteer organizations run by activist patients or concerned family members. Obviously, this limits their ability to advocate effectively on behalf of the patient community. Here, the support of interested drug companies can make all the difference. Brands can serve patients' interests as well as their own by helping CBOs become more effective. Often, a modest investment on the part of a drug company can bring about important returns. Helping young CBOs to set clear, measurable goals, to fundraise more effectively, and to better articulate their story can produce win-win results. It can help CBOs communicate about clinical trials, promote positive patient engagement with providers, and raise the overall profile of the disease state. Everyone's agenda gets advanced.

Bi-modal Education

As a species, we are comfortable with the familiar. Conversely, the unfamiliar intimidates us. That's a fundamental problem in rare disease. By definition, rare diseases are...well, rare. So they're unfamiliar to most physicians who are not Key Opinion Leaders (KOLs). Consequently, community-based healthcare professionals (HCPs) often shy away from them. I don't mean primary care physicians. I mean specialists. Your average hematologist will have received cursory training in the diagnosis and treatment of thrombotic thrombocytopenia purpura (TTP), but, after many years in practice, may have never

In the rare disease space, brands always have to educate.
But they also have to motivate.

encountered an actual case. When a patient finally does come along, referring her to a KOL isn't always a practical option, for example, in a rural setting. So a major challenge in the treatment of TTP--or any rare disease--to to develop the competence and confidence to treat among non-KOLs. Rising to this challenge may require a two-pronged approach. First, there is a need to deliver rigorous scientific information. In the rare disease space, brands always have to educate. But they also have to motivate. To overcome the barrier of unfamiliarity, it's often necessary to evoke the empathy of the HCP. This means developing educational materials appropriate for professionals that deliver on both the clinical and human levels. Getting treaters to understand the human burden of an unfamiliar disease is just as important as getting them to understand your brand's efficacy data. You have to do both. Here, multimedia content can help. For example, create literature enhanced with augmented reality. The print format delivers detailed information that endures for later reference. But by activating embedded triggers with a smart phone, that same printed artifact can deliver compelling video of the real-world experience of actual patients. That's just the kind of one-two punch so often needed to activate non-KOL treaters in rare disease.

The stakes are high

If you are a product manager working in the rare disease space, ask yourself these questions. How well do we understand the impact of the condition on patient life domains beyond the healthcare system? How can we help our allies in the patient advocacy community become more effective at pursuing our shared goals? How well are we telling both the scientific and the human story? Thinking about questions like these can help your brand get it right. And getting it right in rare disease really matters. It matters to you professionally. It matters to the company you work for. And it matters to patients often underserved and overlooked by the commercially-driven healthcare systems we all depend on today.