- Kyowa Kirin partners with patient advocacy groups to form
global collaborative to address unmet needs
in CTCL
- Consensus statement highlights 12 recommendations for
healthcare authorities, policymakers, hospitals, and clinicians to
drive positive change for the global CTCL patient
community
PRINCETON, N.J., May 14, 2024
/PRNewswire/ -- 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)'.
The statement calls on healthcare authorities,
policymakers, hospitals, and clinicians worldwide 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 provided funding to help the group organize and
advance its goals.
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.
"As a patient organization that interacts with people from
around the world, we see firsthand the challenges that our patient
community members face navigating their disease," says Susan Thornton, CEO of the Cutaneous Lymphoma
Foundation. "We are proud to join arms with our global patient
advocacy colleagues to call attention to changes that we believe
will improve lives of people impacted by cutaneous lymphoma,
wherever they live."
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.
"Every day, our teams see the impact that CTCL has on patients
and their families across our region," says Greg Palko, Vice President, North America
Regional Franchise Head, Oncology. "We are hopeful that the
systemic changes suggested in this Consensus Statement will
increase awareness and help address the unmet needs of this patient
community that we care deeply about."
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.1,2
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.
About Cutaneous T-Cell Lymphoma (CTCL)
CTCL can
have debilitating physical, emotional, and social impacts. These
are difficult enough to contend with, but their burden may be
compounded by issues in testing, diagnosis, and
management.
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.7,8 More
pronounced lesions can also occur.9 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 characterized 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.10 CTCL is treatable, but not generally
considered to be curable.2
About Kyowa Kirin
Kyowa Kirin aims to discover
and deliver novel medicines and treatments with life-changing
value. As a Japan-based Global
Specialty Pharmaceutical Company, we have invested in drug
discovery and biotechnology innovation for more than 70 years and
are currently working to engineer the next generation of antibodies
and cell and gene therapies with the potential to help patients
with high unmet medical needs, focusing on bone & mineral,
intractable hematological diseases/hemato oncology,
and rare diseases. A shared commitment to our values, to
sustainable growth, and to making people smile unites us across the
globe. You can learn more about the business of Kyowa
Kirin at:
www.kkna.kyowakirin.com
References
1 Willemze R, et al. The 2018 update of the
WHO-EORTC classification for primary cutaneous lymphomas. Blood.
2019;133(16):1703-1714.
2 Cleveland Clinic. Cutaneous T-Cell Lymphoma.
Available from
https://my.clevelandclinic.org/health/diseases/17940-cutaneous-t-cell-lymphoma.
Last Accessed: May 2024.
3 Wilcox RA. Cutaneous T-cell lymphoma: 2016 update
on diagnosis, risk-stratification, and management. Am J Hematol.
2016;91(1):151-65.
4 Scarisbrick J, et al. The PROCLIPI international
registry of early-stage mycosis fungoides identifies substantial
diagnostic delay in most patients. Br J Dermatol.
2019;181(20):350-357.
5 Trautinger F, et al. European Organisation for
Research and Treatment of Cancer consensus recommendations for the
treatment of mycosis fungoides/Sézary syndrome - Update 2017. Euro
J Cancer. 2017;77:57-74.
6 Girardi M, et al. The Pathogenesis of Mycosis
Fungoides. New Eng J Med. 2004;350(19):1978-88.
7 Demierre M-F, et al. Significant impact of
cutaneous T-cell lymphoma on patients' quality of life. Cancer.
2006;107(10):2504-2511.
8 Ni X, et al. Reduction of regulatory T cells by
Mogamulizumab, a defucosylated anti-CC chemokine receptor 4
antibody, in patients with aggressive/refractory mycosis fungoides
and Sézary syndrome. Clin Cancer
Res. 2014;21(2):274-85.
9 Bagherani, N, et al. An Overview of Cutaneous
T-Cell Lymphomas. F1000 Research. 2016;5:F1000 Faculty
Rev-1882.
10 Olsen E, et al. Revisions to the staging and
classification of mycosis fungoides and Sezary syndrome: a proposal
of the International Society for Cutaneous Lymphomas (ISCL) and the
cutaneous lymphoma task force of the European Organization of
Research and Treatment of Cancer (EORTC). Blood.
2007;110(6):1713-22.
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