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Lymphoma patients suffer highest financial stress

Photo: Lymphoma patients stress 'worst in world'
Lymphoma Australia has welcomed the government's decision to fast-track new cancer drugs from Europe and the US, as patient stress levels reach a global high.

Australians battling the common blood cancer lymphoma experience the highest financial and emotional stress of patients worldwide, an international study says.

A survey of more than 4000 patients in 72 countries also found Australians with lymphoma scored significantly worse than the global average in terms of employment, self-esteem, depression and isolation.

Lymphoma Australia chief executive Sharon Winton said some patients had to fork out up to $120,000 for their treatments.

Patient stress levels were amplified by the complicated nature of the cancer that has more than 50 subtypes.
"Lymphoma doesn't just have chemotherapy and radiation, it has immunotherapy and transplants as well, which is when someone gets told they need an autologous (stem cell) transplant or an allogeneic (bone marrow) transplant," she said.

"Their whole world just crashes because they don't even know what it is.

"You're isolated and again this financial stress of the lymphoma patient is that 'you're going to be in hospital and you're going to be in a bubble'."
Ms Winton said there was a general lack of understanding through the community about lymphoma despite more than 5000 Australians being diagnosed each year, or one every two hours.

The immune system cancer is more common in Australia than leukaemia and has a higher death rate than skin cancer.

To help patients deal with the cost of treatment, Ms Winton urged the federal government to fast-track the Pharmaceutical Benefits Scheme (PBS) listing of new medicines from overseas.

"We're still receiving the 'approved' drugs as opposed to the 'best in the world' ones," she said.

Some patients spend up to $120,000 to access drugs not listed on the PBS, including Brentuximab Vedotin which treats the Hodgkin's strain.
"I've been with a patient in a hospital and you walk out thinking 'this is bad, they're going to die' and then they get on one of these drugs and you go 'oh my gosh, look at them now'," she said.

"I think that's where it becomes hard for the families and the patients because they want to make sure that they have done everything."
Health Minister Sussan Ley on Thursday announced changes to the national regulation of medicines across the next two years, including the potential fast-tracked availability of new cancer drugs from Europe and the US.

"It is a common complaint that certain high profile medicines are not brought to Australia", Ms Ley said, citing the government's $4.5 billion worth of new medicines added to the PBS since being elected.

Cancer Council chief executive Sanchia Aranda praised the decision as "an important step in the right direction".

However, Ms Winton said: "If the government is going to be paying for a patient's treatment, why not pay for the best?"


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