The Impact of Advertising for Rare Disease Treatments Post Pandemic

Despite their name, rare diseases are not that rare at all. In fact, the National Institutes of Health (NIH) estimates that up to 30 million Americans—or about one in 10 people—suffer from a rare disease.

These include more well-known conditions such as Sickle Cell Anemia, Cystic Fibrosis, Hemophilia, and many less-common forms of cancer, including those in children. Bottom line: Even if your life has not been personally touched by a so-called “rare disease,” you probably know someone who has.

Finding patients who may benefit from timely information about rare disease treatment is not easy, but it is important. Rare diseases often have a genetic component, or are serious and potentially life-threatening, with those afflicted frequently finding themselves navigating a sea of unknowns to discover treatment options. Their journey may begin with misdiagnosis for more common conditions that present similarly. When treatment fails, they may feel lonely or afraid that they may never find relief.

Those feelings are lessened when members of their community, family, friends, and healthcare providers can explain what to expect and how to treat their conditions appropriately. However, too often, treatments for rare diseases are not as well-known as more common conditions that benefit from better-funded, mass-marketed brands, further complicating patient journeys and prolonging potentially life-saving measures.

That said, every single lead may be critical to a patient’s success and recovery. Marketers can tackle this challenge by leveraging relevant data in a privacy-safe way and utilizing emerging technology, such as artificial intelligence (AI), to design and execute targeted and timely campaigns.

Leveraging Data to Design and Execute Rare Disease Campaigns

The sheer volume of data that’s become available over the past several years has provided new opportunities for healthcare to improve its impact, from developing new ways to reach patents with their message to improving the efficacy of treatments. Today, approximately 30% of the world’s data volume is generated by the healthcare industry. By 2025, the compound annual growth rate (CAGR) of data for healthcare will reach 36%.

Traditionally, pharma marketers have used data to identify HCPs who treat rare diseases and which medications they prescribe and connect with them via sales representatives. This process has become less popular, particularly in the wake of the pandemic, as person-to-person contact became scarce and new methods of communication began to replace old ones. With new methods came new ways of tapping into data, allowing marketers to better design their campaigns from the ground up.

Data allows marketers to understand their audience on a deeper level, and when it comes to marketing to rare disease patients, this couldn’t be more necessary. A specific example: Hereditary angioedema (HAE) can cause swelling in any part of the body, including the patient’s face. It’s a little-known condition from which only one in 66,000 people suffers. A dataset may exclude HAE patients for no other reason than the disease’s level of rarity.

That doesn’t make the dataset useless, per se, but it does change how the data should be used. At best, this results in misinformed campaigns with unrealistic insights. At worst, it inhibits the ability of patients to receive important, potentially life-saving, information about treatment options and clinical trials.

The simple economics of advertising makes advertising rare diseases on a national basis impossible. Now, patients—particularly those confronting a rare disease—can be reached through ads relevant to them and ones that could influence the next step in their journey to recovery while reducing the number of people reached for whom the message is not relevant.  Let there be no uncertainty: patients should never be targeted based on their individual health information.

Instead, marketers must utilize technology that allows for the creation of custom clinically relevant audiences modeled on the demographics and behaviors of real-world patients while respecting privacy laws like HIPAA. AI and machine learning have been instrumental in achieving this goal over the past several years, opening new doors in timely marketing of rare disease treatments.

The Long- and Short-term Impact on Rare Disease Patients

Reaching relevant rare disease patients could, quite literally, be the difference between life and death. These campaigns’ short- and long-term impacts have numerous benefits including, but not limited to, garnering attention for specific treatments and medications that might otherwise go unnoticed and empowering patients to play a more active role in their health journeys by feeling more informed about their treatment options.

When a patient living with a rare disease sees an ad for a drug or therapy that is relevant to them, they are more likely to pursue it, which gives them a better chance of recovery and survival. A recent case study found that patients reached this way were more likely to take an active role in their health journeys. Namely, by leveraging eligibility data, a pharmaceutical company was able to successfully maximize patient brand awareness of relevant therapies and prescription drug treatment in the weeks before they met with doctors while suffering from HAE. This resulted in the company achieving tangible results of patient targeting and engagement via their free app aimed at encouraging patients to track, manage, and share their experiences with HCPs. As a result, they exceeded their goal of app downloads by 45%, offering a model for similar brands seeking to increase awareness of their treatments.

At the end of the day, the term “rare diseases” is a misnomer. They happen to all too many of us, yet they are harder to market treatments for, given their lack of awareness and smaller audiences. Still, the sufferers of these conditions do not want to wait for more people to face these conditions and remain in the dark, and thankfully we do not have to. That is what makes healthcare marketing today much more rewarding and incredibly impactful—knowing we are reaching the right person at a pivotal moment in their health journey.

  • John Mangano

    John Mangano is SVP, Analytics at DeepIntent. For the last 15 years, John has been driving innovation in how the healthcare industry understands the impact of media and marketing technologies on patients and their health outcomes. He leads the Marketing Sciences and Analytics team at DeepIntent where he calls on his vast experience to help DeepIntent become the industry-leading DSP in planning, activating, measuring, and optimizing healthcare campaigns.


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