Optimize Access and Adherence with the Right CRM for Rare Diseases

Rare disease treatment in the biopharma world is a complex and fast-growing area. While the Orphan Drug Act classifies rare diseases as those affecting fewer than 200,000 people, the reality is that over 30 million Americans are living with one of 7,000 recognized rare conditions—each with its own set of challenges, unmet needs and impact on patient outcomes.

Only a fraction of these diseases—around 10%—have treatments approved by the FDA. Specialty medicines, including innovative therapies like cell and gene therapies, are receiving increasing attention, including from key opinion leaders, for their potential to treat rare diseases and chronic conditions. 

However, as drug and treatment costs climb and pathways to market grow more complicated, these treatments often face significant challenges in terms of market access. Simply put, biopharma companies today need powerful, integrated, digital-first solutions to orchestrate a patient journey with unrivaled complexity.

Fortunately, patient-focused customer relationship management (CRM) systems specifically designed for biopharma are available to provide critical visibility and streamline these patient journeys.

Understanding the Unique Challenges of Market Access for Rare Disease Specialty Therapies 

Treating and caring for patients with rare diseases is inherently complex and specialized. Educating everyone involved in the specialty patient journey—from healthcare professionals and insurance companies to patients and loved ones—about the intricacies of specialty medicines requires a high-touch approach to ensure understanding and compliance. 

Additionally, the regulatory landscape for these therapies is strict and evolving, with requirements designed to protect patients adding further complexity to the market access equation.

The patient journey for specialty medicines that treat rare and chronic conditions often includes:

• Long, arduous patient pathways to diagnosis
• High-touch approaches to patient care 
• Clinical education requirements such as injection training or titration support during therapy initiation
• Complex prior authorization processes that require education for healthcare providers and office staff, including varying payer criteria for coverage  
• Additional mental and emotional support services for patients and caregivers
• Proactive communication efforts with patients and healthcare teams to monitor adverse side effects and ensure desired health outcomes 

Biopharma companies working to bring a specialty drug to market face obstacles all along the commercialization journey, including pre-approval and pre-launch. Stringent regulatory requirements for rare disease therapies—put in place to mitigate adverse effects from sometimes high-risk treatment efforts—are known for complicating drugs’ pathways to the marketplace. Though these regulations are designed to protect patients and ensure the efficacy of therapies, they add complexity to the process. 

These aspects (not to mention other hardships, depending on the disease state and the patient’s circumstances) emphasize the need for holistic, tailored support services to guide patients through their journeys. 

Courier Health is the first and only patient-focused CRM designed to meet these needs. It empowers small biotechs launching their first specialty treatment to large market specialty companies with data-driven, actionable insights and purpose-built technology to improve patient services, experiences, and outcomes.

The Role of CRM in Overcoming These Challenges

CRM systems are vital tools in the biopharma sector, where relationship management and “bedside manner” have long been priorities. They function both as communication tools and as sophisticated information technologies. 

These dual functions are invaluable: the right CRM systems streamline relationship management and engagement while offering enhanced capabilities to track, store, record, and utilize critical patient information.

And with more digitally-savvy consumers and higher patient empowerment than ever before, CRMs are indispensable for managing the complex patient journeys associated with rare diseases and treatments, offering support in three key areas:

Data Management

Getting a patient to start and stay on treatment for rare conditions involves effectively managing and applying multiple data sources—from contact information and insurance coverage to prescriptions and fulfillment data. 

Rare disease patient journeys are routinely characterized by a dizzying amount of information-heavy exchanges, including:

• Various care centers and healthcare providers administering care
• Frequent medication or dosing changes
• Ongoing patient status changes, including side effects
• Insurance difficulties and other barriers to access

By integrating multiple data sources into a single CRM command center, biopharma can achieve a comprehensive 360° view of each patient's journey. 

The right patient-focused CRM solutions centralizes patient and related information into a single system, providing diverse stakeholders with the same level of visibility and enabling care teams to track patient progress, pinpoint hurdles, and ensure they receive support when they most need it.

Predictive analytics further enhance this capability by using connected data to proactively identify at-risk patients early, or alert them to other issues, allowing for timely interventions.

What’s more, on the more clerical side, the right CRM also provides document management and storage—a resource library of sorts—to securely manage documents related to a patient, whether that’s consent forms, appeal letters, insurance cards, or more. 

Stakeholder Communication

CRMs aren’t simply data warehouses. They’re also built to facilitate communications, further streamlining patient management and ensuring key information is disseminated to individuals and their care teams in an efficient, personalized manner. 

For instance, a rare disease biotech company specializing in a rare neuromuscular disorder implemented a patient-focused CRM to streamline communication and data management across their clinical, regulatory, and commercial teams. This CRM enabled real-time data sharing, improved patient onboarding, and automated regulatory documentation processes. 

As a result, the company achieved a 67% reduction in time-to-start within 60 days, significantly accelerating patient access to potentially life-saving treatments. This faster access to treatment improved patient outcomes and enhanced the overall patient experience by reducing the time patients spent waiting for critical care. 

CRM systems can be used to:

• Track patient, healthcare provider or organization interactions
• Monitor treatment compliance and adherence
• Provide real-time updates to healthcare teams, as well as patients and caregivers

When you consider that 50% of rare disease patients are children, easing informational pathways and keeping patient data current to improve patient relationships and effectively execute care is of the utmost importance.

Patient Engagement

Engaged patients are more likely to benefit from their treatment. CRMs enhance patient support and adherence programs by facilitating personalized communication, providing educational resources, and helping to automate patient pathways. In rare disease contexts, where patient programs tend to be high-touch, CRMs have proven to be powerful tools in improving outcomes and patient satisfaction.

The challenges of initiating and staying on rare disease treatment demand a specialized approach, and specialized, patient-focused CRMs are uniquely equipped to address these challenges. Companies that invest in the right CRM technology, coupled with the right internal people and processes, are better positioned to overcome the hurdles of market access, increase patient satisfaction, and deliver more effective care.

How the Proper CRM Accelerates Access to Rare Disease Treatments

Understandably, biotech and pharmaceutical companies may be wary of transitioning to a CRM solution, especially if they’ve been working in a particular way for decades. The reality is, however, that in today’s competitive market with increased patient expectations, biopharma companies can’t afford not to invest. What’s more, expertly designed and purpose-built CRM systems are more flexible and configurable than ever before, providing remarkable returns for companies, care teams, and patients alike. 

Enhanced Data Management

While traditional record-keeping provides a limited, two-dimensional view of patient journeys, CRMs enable biopharma companies to gain a comprehensive, 360º view of their patients' journeys in real-time. 

Unlike healthcare providers, who may rely on electronic health records (EHRs) for patient information, biopharma teams use CRMs to integrate data across multiple departments, streamline workflows, and enhance collaboration, ultimately improving patient outcomes.

Moreover, advanced CRMs put that connected data to work, providing:

• Risk scoring, which can give a sense of a patient’s probability of falling off track
• Predictive analytics, which can help crunch data on behaviors and trends to identify potential issues before they escalate (e.g., a healthcare provider with an abnormally low PA first-time submission rate)

With this kind of visibility—actual and predictive—program leadership, Field Access, Patient Services, and more help keep patients on track.

Improved Patient Engagement and Support

When communications are regular and personalized, patients stay more engaged with their treatment.

CRMs can leverage omnichannel communication functionality with offerings like:

• Automated reminders in care (e.g. text message around an upcoming injection training)
• Post-appointment summaries
• Regular education t around managing their condition and maximizing their treatment

By prioritizing enhanced communications and patient education, CRMs can help create conditions for manufacturer and patient population relationships to flourish throughout the treatment life cycle.

Streamlined Collaboration With Stakeholders

It takes a village to bring a specialty medicine for rare and chronic conditions to market and then to coordinate access, affordability, care, and ongoing adherence.  

Patient-focused CRMs make coordination efforts more fluid by centralizing communications and data in one place. This keeps everyone on the same page and working towards the same goals, which has unexpected benefits such as informing new business development efforts. 

That could be something like additional areas for research and development or educational resources and events that the patient population or healthcare providers are engaging with or requesting. With streamlined informational flows, organizations can begin to identify and optimize treatment patterns to improve outcomes for rare disease management.

Regulatory Compliance and Reporting

Compliance with healthcare regulations is crucial and is often complicated by the nuances of rare or ultra-rare diseases.

A key advantage of using a CRM is a comprehensive audit trail, documenting every interaction, appointment, and communication. This automation speeds up compliance and reporting efforts, reducing the manual burden on teams to stay compliant. This means that Access, Support, Marketing, and other field-based teams can spend less time on paperwork or jumping between systems and more time on valuable, strategic interactions with patients and providers.

Choose the Right CRM for Managing the Rare Disease Patient Journey

Successfully treating rare and chronic conditions demands a specialized solution. 

Biopharma organizations that adopt Courier Health’s patient-focused CRM now stand to gain the most in the future. Learn more about how Courier Health can transform your organization by requesting a consultation today.