CTCL Global Care Collaborative Pioneers Consensus for Improving Diagnosis and Care in Cutaneous T-Cell Lymphoma (CTCL)

Tokyo, 14 May 2024 – Kyowa Kirin, Inc. a wholly owned subsidiary of Kyowa Kirin Co. Ltd, today announced the publication of a patient-focused global consensus statement – ‘Time to Act: A Global Patient-Focused Consensus for Improving the Care of Cutaneous T-Cell Lymphoma (CTCL)’ – developed in collaboration with patient advocacy groups.

The statement calls on healthcare authorities, hospitals, and clinicians to undertake 12 specific actions to enhance awareness, diagnosis, care, and support for people impacted by CTCL, which encompasses several types of rare blood cancer that primarily manifest in the skin.^1,2

The consensus statement is the inaugural output of the CTCL Global Care Collaborative, a newly established group united by a shared mission to reduce the time to an accurate diagnosis and improve the quality of care and support for people living with CTCL. Kyowa Kirin organizes and funds the group.

The Collaborative is focused on driving long-term change in four priority areas – improving awareness of CTCL amongst healthcare professionals (HCPs); improving time to diagnosis and awareness of disease staging; ensuring all patients have access to appropriate care; and empowering patients with the information they need to make informed decisions. The insights informing the group’s work reflect global perspectives, the unique needs of the patient community, and international nuances.

CTCL can have debilitating physical, emotional, and social challenges. These are difficult enough to contend with, but their burden may be compounded by issues in testing, diagnosis, and care. Notably, in its most prominent subtype of mycosis fungoides (MF), the average time to diagnosis is 3-4 years.3,4 Like many rare diseases, issues in diagnosis may come from limited awareness and symptoms being mistaken for more common conditions. Once diagnosed, further health system issues, such as inaccurate disease staging and inequitable access to care, represent additional barriers for some patients. The Collaborative is dedicated to addressing these unmet needs globally.

"We are honoured to work hand in hand with the global CTCL community to launch this important initiative.” said Takeyoshi Yamashita, Ph.D., Director of the Board, Senior Managing Executive Officer, Chief Medical Officer of Kyowa Kirin. “Our shared goal is to enhance disease awareness, improve patient care, and provide the support needed in CTCL. We are hopeful that the Time to Act Global Consensus Statement will significantly raise awareness of CTCL and contribute to addressing the unmet needs faced by people living with CTCL.”

To learn more about CTCL, the Global Care Collaborative, and the 12 recommendations, visit
https://www.kyowakirin.com/stories/20240513/pdf/e20240513.pdf

The Collaborative is organized and funded by Kyowa Kirin, a co-founder of the group.

The Collaborative is comprised of global patient organizations – the Cutaneous Lymphoma Foundation and Lymphoma Coalition; national patient organizations – Lymphoma Action (UK), the Portuguese Association against Leukemia and Lymphoma – APCL (Portugal), the Spanish Association of People Affected by Lymphoma, Myeloma and Leukemia – AEAL (Spain), Stichting Huid Lymfoom (the Netherlands) and Haukrebs-Netzwerk Deutschland e.V. (Germany); Selbsthilfe Kutane Lymphome (Germany), Korea Blood Disease and Cancer Association (South Korea), and House086 (China); and Kyowa Kirin, a Japan based Global Specialty Pharmaceutical Company.

The physical and psychosocial burdens of CTCL can have a profound impact on those living with the disease. However, these burdens may be compounded by problems with testing, diagnosis, and care. This is why the Collaborative’s mission is to drive reform of healthcare systems globally and resolve the unmet needs that have persisted for those living with CTCL.

CTCL encompasses T-cell lymphomas affecting the skin.² CTCL is a rare subset of non-Hodgkin lymphomas.⁵

The best studied subtype of CTCL is MF, which accounts for 60% of CTCL cases.¹ Beyond MF, there are various other subtypes of CTCL, including Sézary syndrome, lymphomatoid papulosis, primary cutaneous anaplastic large cell lymphoma, and pagetoid reticulosis.⁶

CTCL can manifest as persistent skin patches and / or raised, scaly plaques, often with constant itching.⁷ More pronounced lesions can also occur.⁸ In MF, these symptoms and signs can frequently be mistaken for more common, benign conditions like psoriasis or eczema.³ As a result in MF, it can take 3-4 years on average for patients to receive a confirmed diagnosis.^3,4

CTCL is characterised by cancerous white blood cells (T-cells) primarily manifesting in the skin.² For some patients, the disease may evolve to also affect the blood, lymph nodes, and internal organs.⁹ CTCL is treatable, but not generally considered to be curable.²

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