Rare Disease Market in Denmark: Key Players and Market Dynamics

By: | Published on: Jul 16, 2024

In July of 2024, I visited Denmark and Italy to research their health systems as it pertains to rare diseases. In Denmark, I visited Copenhagen University and met with Oncology professionals to understand their views on rare diseases and rare blood disorders. I also sat through a PhD dissertation defense to better understand the academic process at the University.

The rare disease market in Denmark represents a crucial frontier, showcasing a complex interplay of medical innovation, patient access, and specialized care. Despite the challenges posed by the inherent scarcity of each condition, this sector encompasses vital opportunities for advancing treatments and improving lives.  Within this context, Denmark has emerged as a pivotal player, particularly due to its commitment to genetic testing, development of orphan drugs, and the establishment of centers of excellence dedicated to rare diseases.

These efforts not only underscore the country’s dedication to addressing the unique needs of this patient population but also highlight the significance of collaborative approaches in overcoming the hurdles associated with diagnosis, treatment, and patient support.

This article will delve into the dynamics of the rare disease market in Denmark, beginning with an overview of rare diseases within the Danish healthcare landscape, followed by an exploration of the major players shaping the sector—ranging from biopharmaceutical companies to research institutions and patient advocacy groups.The discussion will extend to the influential market trends,including advancements in genetic testing, the crucial role of patient access schemes, and the impact of regulatory frameworks on the availability of orphan drugs. Throughout, the focus will remain on outlining the mechanisms through which Denmark is enhancing its standing in the global rare disease market, by providing valuable insights into the ongoing efforts to address the complex challenges faced by patients and healthcare providers alike.

 

Understanding Rare Diseases in Denmark

Rare diseases in Denmark are defined in alignment with theEuropean Commission’s criteria for Orphan Medicinal Products,characterized by conditions that are usually congenital,hereditary, complex, and serious, necessitating highly specialized knowledge and skills for effective management. These diseases occur with a prevalence of approximately 1-2 per 10,000 individuals, impacting up to 1,000 people across the country [1].The European Union delineates rare diseases as those affecting fewer than 5 per 10,000 persons, underscoring the challenges posed by these conditions in ensuring accurate diagnosis and effective treatment [2].

 

Current Treatment Options

Denmark has established specialized centers, such as the Centre for Rare Diseases in Copenhagen and Aarhus, which focus on highly specialized diagnosis, treatment, monitoring, and control of rare diseases. These centers coordinate patient-care programs and maintain treatment protocols and databases, ensuring that each patient receives a tailored and comprehensive care plan [1]. Additionally, Denmark is adapting its assessment systems to better accommodate Advanced Therapy Medicinal Products (ATMPs) and orphan drugs, acknowledging the unique challenges these treatments present in terms of evidence criteria and long-term benefit uncertainties [3].

 

Role of Healthcare Providers

Healthcare providers in Denmark are integral to the management of rare diseases, requiring a multidisciplinary approach that includes specialists from various fields such as genetics, nursing, and physiotherapy. Despite the high level of care available, there remains a need for continuous education and training among healthcare professionals to improve their understanding of rare diseases and enhance their ability to offer effective patient support [2]. This is critical as the complexity of rare diseases often leads to misdiagnosis or delayed treatment, significantly affecting patient outcomes.

 

Top Pharmaceutical Companies

Novo Nordisk stands out as a dominant force in Denmark’s rare disease market, with significant contributions across various segments. In 2022, the company reported a notable 26% growth in sales, reaching $25.4 billion, driven largely by its diabetes care products [4].Additionally, Novo Nordisk’s rare disease portfolio saw a 7% increase, totaling $3 billion, bolstered by strategic acquisitions such as the purchase of Forma Therapeutics, which specializes in sickle cell disease and other rare blood disorders [4].

 

Key Research Institutions

 

Denmark’s commitment to research in the life sciences sector is exemplified by its substantial investment in biotech, with $434 million allocated in 2021 alone. The Danish National Research Foundation plays a crucial role, distributing approximately $70 million annually, with a significant focus on life sciences [4]. This investment strategy has positioned Denmark as a leader in high- quality biological sciences research, ranking 16th globally in 2022 [4].

 

Influential Healthcare Organizations

The healthcare landscape in Denmark is overseen by several key organizations, each playing a pivotal role in managing rare diseases. The Ministry of the Interior and Health ensures comprehensive healthcare coverage, while regional entities like the Capital Region of Denmark and the Region of Southern Denmark focus on delivering specialized healthcare services [4]. Additionally, the Danish Centre for Rare Diseases and Disabilities provides essential support and information services, enhancing care for those affected by rare conditions [5].

 

Emerging Trends

In the Nordic rare disease market, there is a notable trend towards enhancing the assessment processes for rare disease treatments (RDTs). These improvements aim to incorporate all relevant criteria consistently, including the integration of disease-specific expertise and patient perspectives in decision-making frameworks [6]. Additionally, Denmark is adapting to the challenges presented by Advanced Therapy Medicinal Products (ATMPs) by planning changes in assessment processes to better accommodate the uncertainties inherent in the evidence for these treatments [3].

Challenges and Barriers

Despite recognition of the sparse evidence often accompanying RDTs, Denmark and other Nordic countries face challenges due to a lack of formal distinction between RDT and non-RDT assessments [6]. This issue extends to ATMPs, where evidence criteria challenges and the high costs associated with these treatments pose significant barriers to patient access [3].

Furthermore, the responsibility of funding these treatments often falls on individual hospitals, adding financial strain and complicating the delivery of specialized care [3].

Regulatory Changes and Effects

Denmark is poised to implement regulatory changes aimed at making the assessment process for ATMPs more realistic and conducive to the nature of these innovative products [3]. These anticipated changes are expected to address many of the existing challenges, potentially improving access to these crucial treatments. The efforts include better documentation of decision- making processes and more formalized consideration of RDT-specific criteria [6].

Conclusion

Through the course of this article, we have navigated the intricate landscape of Denmark’s rare disease market, encapsulating the significant strides made toward medical innovation, enhanced patient care, and the development of orphan drugs. It is evident that Denmark, with its dedicated genetic testing initiatives, establishment of specialty care centers, and a robust framework for advancing treatment opportunities, is at the forefront of addressing the unique challenges posed by rare diseases. Highlighting thecollaborative efforts of biopharmaceutical companies, research institutions, and healthcare providers, the discussion underlines Denmark’s commitment to improving the quality of life for individuals affected by these conditions.

Looking ahead, the implications of Denmark’s actions in the rare disease sector hold promising potential for the broader realm of healthcare, setting benchmarks for patient care, treatment accessibility, and the integration of patient perspectives in healthcare decision-making processes. The ongoing efforts to refine assessment processes for rare disease treatments and adapt to the nuances of advanced therapies underscore a forward-thinking approach that other nations might well consider emulating. It is clear that while challenges remain, the pathways forged by Denmark offer insightful lessons and hope for the global community in the quest to conquer the complexities of rare diseases.

FAQs

What are the main factors driving the growth of the rare disease market?

The growth of the rare disease market is influenced by several key factors. These include increased awareness and understanding of rare diseases among healthcare professionals, policymakers, and the general public, which collectively contribute to the market’s expansion.

What is the expected growth of the global rare disease treatment market?

The global market for rare disease treatments was valued at USD 134.91 billion in 2022. It is expected to increase to USD 152.18 billion in 2023 and further grow to USD 398.87 billion by 2031, with a compound annual growth rate (CAGR) of 12.8% during the forecast period from 2024 to 2031.

What strategies are effective in marketing for rare diseases?

Marketing for rare diseases should adopt a human-centric approach, emphasizing support for patients and caregivers and ensuring treatment adherence. It is crucial to tailor the marketing message and engage with the audience in a manner that addresses the uniqueness of each rare disease.

What is the size of the European market for rare disease diagnostics?

In 2023, the European market for rare disease diagnostics was valued at USD 10,402.81 million. It is projected to grow to USD 11,332.14 million in 2024 and reach USD 22,767.23 million by 2032, with a CAGR of 9.1% during the forecast period.

References

 

This article was researched and co-written with Corinne McSpedon.