Kyowa Kirin, Inc. announced the publication of a patient-focused global consensus statement developed in collaboration with patient advocacy groups, calling on all healthcare authorities, hospitals, and clinicians to undertake 12 specific actions to enhance awareness, diagnosis, care, and support for people impacted by Cutaneous T-Cell Lymphoma (CTCL), which encompasses several types of rare blood cancer that primarily manifest in the skin.

“Time to Act: A Global Patient-Focused Consensus for Improving the Care of Cutaneous T-Cell Lymphoma (CTCL)” 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.

“The consensus statement highlights the primary needs of CTCL patients,” consensus co-author Lara Rodriguez, a psycho-oncologist and patient advocate, said in a statement to Practical Dermatology. “All clinicians caring for those living with CTCL should be aware of the recommendations in the statement and work toward their implementation. By doing so, they can significantly improve quality of life for patients and help healthcare systems to deal with CTCL more effectively and efficiently.”

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 to 4 years. 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.

Dallas Pounds, Director of Services for Lymphoma Action UK, a patient organization in the Collaborative, said: “I’ve witnessed the debilitating challenges of misdiagnoses, delayed treatment, and unequal access to care for those living with CTCL. The consensus statement is an important publication for the global CTCL community, addressing the issues in disease awareness, access to care, and patient communication. It’s a vital milestone for those living with CTCL, and I’m proud that patient organizations have united from across the world to drive change in healthcare systems for the benefit of those struggling with this debilitating disease.”