New treatment now available through PBS for cutaneous T-cell lymphoma patients

Sunday November 1, 2020

The Leukaemia Foundation has welcomed news that a new specialised treatment will begin being available to some lymphoma patients through the Pharmaceutical Benefits Scheme (PBS) starting today.

The Federal Minister for Health, The Hon. Greg Hunt MP, has announced that Australians diagnosed with erythrodermic cutaneous T-cell lymphoma who have not responded to other treatments can now access the medication methoxsalen as part of treatment with extracorporeal photopheresis.

Minister Hunt said an estimated 75 patients may benefit from this listing each year.

The ECP treatment involves attaching a patient to a machine that removes some of their blood, separates the white blood cells and returns the red blood cells and platelets to the body. The white blood cells are mixed with methoxsalen, exposed to ultraviolet light, then administered to the patient, which can activate their immune system to fight the blood cancer.

Cutaneous T-cell lymphoma (CTCL) is a rare type of non-Hodgkin lymphoma that affects the skin and causes an accumulation of malignant T-cells in the skin, resulting in raised, rash-like or itchy patches of skin, skin lumps or ulcers and swollen lymph nodes. It can also involve the blood and other internal organs. Mycosis fungoides and Sézary syndrome are the two most common types of CTCL.

Leukaemia Foundation General Manager of People Living with Blood Cancer Kathryn Huntley said the Leukaemia Foundation is committed to empowering Australians living with lymphoma with access to the best information, support, treatment and care so they can manage its impacts and live well with their blood cancer.

“People living with blood cancer who are diagnosed with rare blood cancers like CTCL face significant hurdles in accessing new treatments in a timely manner and have significant treatment needs that are often unmet,” she said.

“The Leukaemia Foundation is grateful this medication and treatment will now be more readily accessible and affordable for Australians living with this specific rare lymphoma.”

The Leukaemia Foundation has been advocating for improved treatment options for CTCL, including for a PBS listing of mogamulizumab to treat relapsed or refractory CTCL – a medication which has been shown to prolong progression-free survival and reduce symptoms. The organisation also continues to advocate for access to ECP for blood cancer patients experiencing Graft Versus Host Disease.

“The Leukaemia Foundation is proud to stand beside Australians living with blood cancer to be their voice and fight to get them access to the best therapies to treat their specific disease, wherever they live, as we work towards our vision to see zero lives lost to blood cancer by 2035,” Ms Huntley said.

Late last year the Leukaemia Foundation released the State of the Nation: Blood Cancer in Australia report, which led to Minister Hunt supporting the Leukaemia Foundation to establish a Blood Cancer Taskforce.

The Blood Cancer Taskforce is a unique collaboration of Australia’s leading haematologists, researchers, patients and members of the blood cancer community who have spent the past year working with the Leukaemia Foundation to develop Australia’s first National Strategic Action Plan for Blood Cancer.

Last month the Minister announced the release of the National Action Plan, which provides a blueprint to tackle key issues facing people affected by blood cancer today and into the future, and maps the path to achieve zero lives lost to blood cancer by 2035.

Ms Huntley said the release of the National Action Plan marked a major milestone for the blood cancer community which will set the national agenda around blood cancer for many years to come and ultimately improve outcomes for patients with rare blood cancers like CTCL.

“Enabling access to novel and specialised therapies, including breaking down roadblocks to patient access to these therapies, is a key priority of the National Action Plan,” Ms Huntley said.

“This announcement by the Minister is a step in the right direction to remove these roadblocks for some Australians living with blood cancer, and we look forward to seeing further progress in this area into the future as the National Action Plan is implemented.”

The Leukaemia Foundation provides free practical, emotional and educational support to Australians diagnosed with a blood cancer including CTCL and other lymphomas. The Leukaemia Foundation produces a series of disease specific newsletters including Lymphoma News, and invites all Australians living with the disease to subscribe to ongoing information here.

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