The purpose of rare disease marketing in the pharmaceutical industry is to provide patients, caregivers and HCPs (health care professionals) with the support, resources and information they need to better care for, treat, or understand a rare disease.

Marketing for rare diseases and rare disease drug launches requires strategy to effectively communicate available resources for HCPs, caregivers and patients. Pharmaceutical companies need to deploy uniquely-targeted paid marketing campaigns to drive awareness around the signs and symptoms of rare diseases.

Rare diseases and rare disorders have small patient populations, which means the affected patients don’t necessarily receive the attention and support they need from the healthcare system.

For a disease to be considered rare, it must affect fewer than 200,000 people in the nation at once. Although there are currently more than 7,000 known rare diseases, only about 5% of these diseases have an FDA-approved treatment or therapy available.

Marketing for rare diseases requires a different approach than marketing for a common disease or advertising for a commonly-prescribed treatment. Effective rare disease marketing requires an ethical, human-centric approach, with special focus on patient and caregiver support and treatment adherence.

Traditional methods of pharmaceutical marketing aren’t as effective for rare disease marketing for a number of reasons. The patient pool for rare disease is considerably smaller, which means finding patients who have been diagnosed with a rare disease can be a complicated process. Many people who have a rare disease don’t realize they have the disease, and many caregivers and HCPs don’t have past experience diagnosing the disease.

Launching a rare disease drug requires additional planning and preparation than launching a drug used by a considerably-sized population. An effective rare disease drug launch strategy requires forward thinking, thoughtfulness, progressive ideation, a patient-centric focus, and consideration for every detail.

Pharma companies that don’t have access to the tools, search data and media targeting technology necessary to identify patients and uncover valuable insights are presented with a substantial challenge.

This is where expert rare disease marketing takes a front seat. The general population needs to know about rare diseases, the symptoms, and the available treatment or therapy options. They need to be presented with this information and offered the right resources on platforms when and where they’re most receptive.

But how do you reach people who have a rare disease if they don’t realize they have the disease yet? What platforms should you use to find eligible patients for a rare disease drug launch? How do you reach caregivers or HCPs who may not have any experience diagnosing, managing, or treating the disease?

To offer patients the support and solutions they need, marketers must appeal to the rare disease community by understanding the patients’ met and unmet needs without inundating them with thoughtless communications and advertisements.

While empathy is critical for marketing in all industries and arenas, it’s especially critical in rare disease marketing. Cultivating meaningful relationships with patients, caregivers and HCPs in the rare disease realm is key to successful marketing.

rare disease support

Understanding the Patient Perspective in Rare Disease Healthcare

To understand the challenges of rare disease marketing and rare disease drug launch marketing, we have to understand the challenging journey a patient with a rare disease faces when seeking treatment or therapy.

Receiving an accurate diagnosis of a rare disease can be a lengthy, arduous process. When a disease is rare, knowledge of the symptoms are rare too. Healthcare providers may not be aware of the signs associated with the rare disease, and may not realize the disease is present in a patient.

If and when a diagnosis is made, the patient needs to be connected with a healthcare specialist who has the experience and expertise necessary to treat the rare disease. Availability of an experienced healthcare professional is often very limited, and some rare diseases (known as orphan diseases) don’t even have a treatment option available yet.

Orphan diseases are a subgroup of rare diseases that don’t have any FDA-approved treatments or therapies available on the market. Because so few patients are diagnosed with orphan diseases, pharmaceutical companies don’t necessarily have the incentive to manufacture new drugs to treat these diseases.

Not only do HCPs require information to diagnose, monitor, and potentially treat rare disorders and diseases, but caregivers need this information too. This information is sometimes not easily-accessible for HCPs and caregivers, because there may be minimal research performed or too few clinical trials conducted. Information can be limited and difficult to find.

Fortunately, there’s hope. There’s been a recent improvement in global awareness around rare disease treatments. Due to modern advancements in technology and successful marketing during rare disease drug launches, there are now 503 approved therapies for rare diseases.

The Process of Launching Rare Disease Drugs

To boost the incentive for pharmaceutical companies to research rare diseases, perform clinical trials and manufacture FDA-approved rare disease therapies, the government started offering financial incentive. These incentives were highly effective and were responsible for drastic increases in orphan drug development over the course of a few years.

The Orphan Drug Act (ODA) was a government incentive act, implemented in 1983, to encourage rare disease drug development from pharmaceutical and biotech companies. This initiative offered manufacturing companies tax incentives, exclusive rights in the rare disease market, patent protection during clinical development and subsidies for clinical research. Within two decades of the Orphan Drug Act implementation, drug designations skyrocketed, and 11 million new patients were provided with treatment.

Technological advancements—specifically search engines and social media platforms—have made it easier to reach rare disease patients. The rare disease community is connected; patients can discuss their experiences, share knowledge of their symptoms, and research therapy options by simply opening their laptops or searching on their mobile device.

Technology presents opportunity for patient communities, but it also hones in on the ethicality and morality of pharmaceutical marketing efforts. Big pharma brands can easily jeopardize their reputation and their position in the rare disease community if they aren’t strategic.

Platforms for Disease Awareness and Disease Education

Social media campaigns, community-organized campaigns, digital campaigns, and informational events—each is incredibly valuable for raising disease awareness, disseminating disease education, and marketing therapies soon to be launched.

Campaign messaging may be targeted toward educating HCPs, caregivers, or potential patients on the signs, symptoms and treatments available for a rare disease. The ALS Ice Bucket Challenge is a great example of a highly-effective rare disease marketing campaign. This campaign spanned across multiple social media platforms (Facebook, Instagram and Twitter) and connected people all over the world, bringing awareness to ALS (also known as Lou Gehrig’s disease).

platforms for disease awareness

Identifying Patients Who Need Treatment

It’s not easy to find patients who are eligible for a rare disease drug or treatment. Marketing teams need to extend their reach, digitally and traditionally, through advocacy groups, events, and digital campaigns to educate HCPs and spark awareness of the rare disease.

To find patients who are in need of rare disease treatment, who may be misdiagnosed with another disease, or who may be unaware that their symptoms are indicative of a rare disease, pharmaceutical companies must develop trusted relationships with well-known advocacy groups and treatment centers.

The company needs to connect with individual healthcare professionals who treat commonly misdiagnosed diseases with similar symptoms. They need to host events to supply free diagnostic tests, and provide resources and information to educate various providers and patient groups.

The unique journey of rare disease patients must be understood to offer them the support they need. Finding health care providers who treat the disease, or diseases with similar symptoms, and identifying available treatment centers, where a number of patients may be diagnosed with the rare disease, are key to finding eligible patients.

It’s us. We’re your expert marketing solution. We’ve been doing this since 2008, and our understanding of pharmaceutical regulations allows us to be innovators who’ve implemented multiple pharmaceutical industry firsts.

Supporting Patients and Caregivers and Promoting Adherence

Supporting patients and caregivers is critical. The rare disease community does not receive the same support from the healthcare system that other disease communities do. Companies need to know what’s currently available to rare disease patients and help to facilitate patient support and communication within the rare disease community. Developing social media platforms or applications that empower patients and caregivers to share their experiences can build trust between the company and community. These platforms also present opportunities to educate patients, HCPs, and caregivers about the disease and about upcoming drug launches. 

Treatment or therapy for rare diseases is often discontinued due to various factors, such as side effects, lack of patient support from physicians, and cost of treatment. To ensure patients adhere to treatment and to prevent discontinuation, rare disease patients need plenty of support in all forms. Physicians or nurses at treatment centers need to be educated on the side effects of the drug and how to manage them, and patients need to be well-informed about their disease and their treatment.

To provide patient and caregiver support, companies can facilitate helplines, live chats, support programs, multi-channel resources and tools to spread information. Methods of support also need to evolve throughout the caregiver or patient journey. Companies need to be conscious of how far along the patient or caregiver is in their treatment plan to be able to meet their exact needs and provide the right type of support at the right time.

Pharma and biotech companies can also support disease advocacy groups, directly and indirectly. Building trusted relationships with advocacy groups and individuals within advocacy groups can provide companies with valuable insights into the realities of the patient experience. These insights can help to drive and refine campaign messaging to speak specifically to a rare disease population.

Ensuring Patient Access to Rare Disease Therapy

Rare disease drugs and therapies come at a considerably high price. More often than not, large portions of these treatments costs are due upfront at the beginning of treatment. These costs can be crippling for patients. Take the drug SPINRAZA™ (used to treat spinal muscular atrophy) as an example; the cost for the first year of treatment with this drug is an estimated $750,000, and about $350,000 each year after that.

Many patients simply don’t have the money to pay for treatment, which limits their access to treatment. Companies need to offer their eligible patients solutions to ensure market access, through early patient access programs that provide patients with free therapy for a few years before the treatment is approved to hit the market, assistance and support throughout the process of patients applying for insurance coverage, and financial assistance through the government or third-party donors.

Rare Disease Launch Team

The rare disease launch team has a number of critical responsibilities throughout the launch. From the initial clinical development of the drug and the identification of eligible patients, to the ongoing support needed for patients and caregivers during treatment, the launch team has an essential role from beginning to end. 

Before the launch, team members need to gain a genuine understanding of the patient journey and the common pain points and challenges patients may face throughout the treatment process. This step is essential for anticipating and solving problems before they arise, and planning ahead to maximize patient access to treatment. 
Because rare disease launches require a careful approach with a strategy tailored specifically to the disease circumstances, launch teams must rely on the collective experience of the team to learn from past launches. The results, successes, and challenges of past launches will be used to refine future launch strategies to improve efficiencies for greater results.

The Challenges of Launching Rare Disease Drugs

First and foremost, rare diseases and rare disorders are personal. Rare diseases are often life-threatening, and access to treatment can directly impact a person’s life. The person’s caregiver, family members, friends, and healthcare providers are also affected by the disease. For every person with a rare disease, there’s a support network of loved ones who are also impacted and personally invested in the patient’s wellbeing.

People can’t be treated as numbers or sales. Rare disease marketing communications need to be strategic, thoughtful, and empathetic. The process of finding eligible patients is a sensitive one. Biotech and pharma companies that are hasty, careless and overwhelming toward the rare disease community will be written off and unsuccessful in marketing their treatment. 

The patient populations of rare disease are difficult to identify, because many people who have rare diseases don’t know they have the disease, don’t know the disease exists, or are currently misdiagnosed with another disease that has similar symptoms. If healthcare providers don’t have past experience diagnosing or treating the disease, they may not be aware of the signs that indicate this disease either. 

It’s not uncommon for rare disease patients to be distrustful of the healthcare system, as many of them have been misdiagnosed with another disease more than once.

Identifying the affected patient population is like finding a needle in a haystack, then honing in on it—all the while, remaining cautious of not flooding the haystack in the process. 

Most patients who are identified are also in need of support services. Financial support, patient-assistance programs, disease education, and adherence support are all fundamental needs of rare disease patients. 
Rare disease treatment can be costly. Many patients don’t have the financial resources that enable them to begin treatment, and those who do pay to begin treatment often find themselves needing financial assistance to continue treatment. High prices of treatment, misinformation about therapy side effects, and limited knowledge from the HCP can lead to discontinuation of treatment. Pharma companies can expect to provide sufficient resources—informational and financial—as well as emotional and psychological support resources to ensure adherence from patients.

How Good Apple Can Help

The challenges, limitations and unique circumstances of the rare disease market can render drug launches an overwhelming endeavor for pharmaceutical companies. That’s why we’re here. 

Marketing for rare diseases requires genuine empathy and understanding of the patient journey. The focus needs to be on the patients and caregivers affected by the disease, and the HCPs diagnosing and treating the disease. You need a launch team that has access to data, tools and analytics that aid the process of identifying patients, educating HCPs, and supporting both sides along the way.

We use modern advancements in media targeting technology to find rare disease patient audiences with increased efficiency. The third-party data tools we use enable us to draw insights from media consumption habits and competitive advertising activity to narrow our reach and stay one step ahead of your competition at all times.

To find rare disease patients and reach the HCPs who diagnose and treat them, you need a uniquely-targeted approach. Your strategy requires disease awareness initiatives, focused on helping speciality HCPs to better understand and recognize rare diseases and disorders. Your marketing communications need to be personalized to speak to your specific audience, and they need to reach patients and HCPs where they’re already present. 

We develop strategic digital and traditional paid marketing campaigns to help pharma companies:

  • Target lists and key clinical behaviors to ensure marketing communications are reaching the right specialist
  • Uncover insights about the rare disease community and develop messages that resonate with patients
  • Educate HCPs and caregivers on rare disease diagnosis and treatment
  • Educate potential patients on signs, symptoms, available resources and new therapies or treatments for rare diseases
  • Connect patients, caregivers and HCPs to resources to help improve patient access, retention, and adherence
  • Support patients virtually through digital tools, such as telehealth and helplines, and traditionally through events, advocacy groups, and patient support programs and groups

Companies that lack the necessary human connection in their marketing campaigns will see this shortcoming reflected in their sales numbers, adherence rates, clinical trial recruitment rates, and in the level of trust built between their brand and the rare disease community.  

Pharma companies require expert marketing solutions to support patients from the very beginning, to disseminate valuable disease information across multiple channels, and to communicate compassion for the populations affected by the disease. 

It’s us. We’re your expert marketing solution. We’ve been doing this since 2008, and our understanding of pharmaceutical regulations allows us to be innovators who’ve implemented multiple pharmaceutical industry firsts.
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