The more we understand rare disease patients, the more the pharmaceutical and life sciences community can do to support the “hidden” 25 to 30 million Americans affected.
In D2C marketing, we often struggle to find the right approach to identify patients and provide them with the right messaging at the right time. More publicly understood and discussed diseases, such as breast cancer, autoimmune diseases, and diabetes get the right kind of attention. Health systems, pharmaceutical companies, advocacy groups, and patients all contribute to the wealth of information and insights that new patients—or those who may not yet have been diagnosed—can turn to when in need. However, for lesser known or rare diseases, patient education and the path to diagnosis can be much more challenging.
To start with, the journey towards a rare disease diagnosis is often described as a long rollercoaster due to the years of ups, downs, twists, and turns that patients experience from the onset of symptoms to finally getting the right diagnosis.
During this time, patients face a lack of guidance, awareness, and education. Fortunately, the more we understand these patients, the more the pharmaceutical and life sciences community can do to support the “hidden” 25 to 30 million Americans affected by rare diseases.1 By adopting a strategy that speaks specifically to these patients, marketing can deliver them the right resources, speed their diagnosis, and potentially improve overall outcomes.
Unique Conditions with a Familiar Story
Rare disease patients often consult multiple doctors, including primary care physicians and specialists over a number of years before receiving the right diagnosis. They live with symptoms but no answers—seeking second or third (and maybe even more) opinions, before finally being diagnosed with a rare and often difficult-to-treat disease. By then, considerable damage may have already been done, with many diseases progressing over time and causing irreversible harm. The process to get to this point can be incredibly lengthy. The average wait time for rare disease patients to receive an accurate diagnosis is 6.3 years.2 That’s years of trying to manage symptoms of an unknown illness while navigating a complex healthcare system looking for a real answer. Then, there is the physical and emotional toll of the disease and treatments—if treatment is available. Nearly all (95 percent) of the 7,000 known rare diseases have no treatment, so patients rely on “offlabel” treatments.1 This reliance often creates insurance reimbursement issues, adding to other barriers to care, including prior authorizations, step-up therapies, and overall cost of care.
Still worse, many people living with rare diseases remain undiagnosed, unaware they have a condition that could be better managed or treated until significant time has passed. This makes educating and engaging with these patients impossible until their conditions worsen, forcing a late start to their search for information and delayed disease management.
Managing the Unknown
Undiagnosed rare disease patients are on high alert, especially as symptoms progress, searching for information to help them understand what they’re experiencing. Unfortunately, finally reaching a diagnosis is only the beginning of their information seeking journey.
Patients turn to the internet, using sites that are often limited, confusing, or wrong. Some are lucky enough to find a patient advocacy group that can help guide them, but they’ve usually and print, typically show low ROI. In contrast, newer digital marketing strategies tend to either preach to the choir (i.e., the patient is already searching for the disease name, so they’re far along in their diagnostic journey) or fail to adequately target the right group. Research shows that demographic-based targeting leads to only 33% relevancy. At the same time, pharma marketers are fighting against misinformation and too much information available to patients online and via social media that can lead them down the wrong path.
Harnessing Technology to Bridge the Gap
Fortunately, pharma organizations—specifically pharma marketers—now have access to more innovative tools to overcome challenges of targeting and reaching rare disease patients. These tools can help provide timely resources and support for patients experiencing emotionally and physically stressful periods.
Technology advancements, especially artificial intelligence (AI) applications paired with large data sets, enable pharma companies to connect more effectively with diagnosed and undiagnosed patients.3
For instance, an undiagnosed patient may turn to an AI-powered symptom checker—ideally one that analyzes real patient data and is supervised by medical experts. This tool can provide accurate, relevant information about their condition, enabling the patient to arrive at their doctor’s appointment better informed and prepared with pertinent questions. Pharmaceutical marketers can also leverage such symptom checkers to disseminate appropriate information about potential diseases and treatment options, based on the results. This reduces the time patients spend searching for information about their symptoms and facilitates a more informed and engaging dialogue with healthcare providers, potentially expediting the diagnosis process.
With technology platforms that make targeting, interactivity, and personalization possible, rare disease patients can be better engaged and guided through the proper channels, especially the ones patients already use. This is how pharma organizations can more easily identify undiagnosed and undertreated patients, ensuring they understand and receive the correct information at the right time.
Establishing a patient-pharma connection sooner also provides an opportunity for pharma organizations to serve as the bridge to different groups and communities that can help patients
and their families manage the difficult, complex process of a rare disease diagnosis and connect them with vital resources so they feel empowered when navigating their condition.
Better Together
Pharmaceutical organizations focused on closing care gaps and expediting time-todiagnosis have new tools and channels available to them to start making an impact for patient populations in dire need of greater support—rare disease patients in particular. These patients are not hiding—they are waiting to be found.
By using technology to better reach people with specific diseases and forging strategic partnerships between pharma organizations and patientcentric channels and platforms, we can more easily and quickly find and help these patients. Together, we can ensure they feel more supported and informed throughout their health journey rather than alone and anxious, significantly improve time to treatment, and build a brighter future for those living with rare diseases.
