CTCL Global Care Collaborative Pioneers Consensus for Improving Diagnosis and Care in Cutaneous T-Cell Lymphoma (CTCL)
14 Mayo 2024 - 6:30AM
Business Wire
- Patient advocacy groups form global collaborative to address
unmet needs in CTCL, with support from Kyowa Kirin
- Consensus statement highlights 12 recommendations for
healthcare authorities, hospitals, and clinicians to drive positive
change for the global CTCL patient community
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.
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.
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.”
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. 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.
Jeremy Morgan, President, Kyowa Kirin International, commented:
“At Kyowa Kirin, one of our core values is Commitment to Life,
ensuring the patient perspective is at the heart of everything we
do. Testament to this value is our role as one of the founding
partners of the CTCL Global Care Collaborative. We’re honoured to
be working with the CTCL community to help address long-standing
issues in diagnosis, care, and support. These are unmet needs that
have persisted in CTCL, and together I am confident we can drive
transformational change in healthcare systems globally.”
To learn more about CTCL, the Global Care Collaborative, and the
12 recommendations, click here.
About the CTCL Global Care Collaborative
The CTCL Global Care Collaborative aims to address the unmet
needs faced by people living with CTCL, which encompasses several
types of rare blood cancer that primarily manifest in the skin.
The Collaborative is organized and funded by Kyowa Kirin, a
co-founder of the group.
It 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.
To read the full press release, click here.
KKI/INT/MOG/1078 Date of preparation: May 2024
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Stacey Minton Stacey.Minton@kyowakirin.com