'After all our life helping in the health system... We need help now'
The community in west Cavan is rallying around a popular retired local GP in a bid to help pay for specialist cancer therapy abroad.
Already, over €145,000 has been raised for Dr Susan Cosnett for her treatment in Amsterdam but she received a blow in recent weeks when it emerged that her health insurance policy does not cover any aspects of the care.
She is now facing an increased cost for her Tumour Infiltrating Lymphocytes (TIL) treatment. The higher rate applies because she is not covered by her insurance provider or the HSE, as the treatment has not been approved by the European Medicines Agency (EMA). The retired doctor feels this is “just an excuse” and believes more should be done for people with her type of cancer.
The mum of three has a rare form of Acral Malignant Melanoma and is seeking help to go to Holland for treatment.
The cancer started as a small pink line under the nail of her left big toe but grew.
The 62 year old initially set up a fundraiser to raise €150,000 to receive the TIL treatment. However she has since had to revise this target to €173,000.
The hospital charge has increased as Susan is not covered by her insurance company, LAYA healthcare, or the HSE to receive the treatment.
She’s frustrated by the lost time in confirming the position on cover.”They kept me weeks waiting, I didn’t know we’d be doing GoFund me until the end of July,” said Susan.
Asked for comment LAYA explained that the treatment sought by Susan “is currently not approved” by the EMA (European Medicines Agency), ESMO (European Society for Medical Oncology) or NICE (National Institute for Health and Care Excellence).
LAYA said that, without approval from these bodies, TIL therapy is “not recognised as a standard treatment and as such is this treatment is deemed to be experimental and clinically unproven”.
A spokesperson added: “As a result, this treatment is not eligible for benefit in accordance with our scheme rules,” adding that they “have been in touch with this member to advise on this.”
Susan said: “I signed up for that therapy with them believing the health insurance would help me.”
The doctor feels cancer treatments in Ireland are inadequate and wants to highlight these issues to benefit people like her in future.
“And I’m sad,” she added of LAYA’s response, explaining that she “can’t even get the travel abroad scheme”, which would cover flight and accommodation expenses.
Grateful
Susan outlined that she has also been writing to the HSE and has been left with “no hope.”
“That’s why I’m so grateful for the funding [donations],” she said.
“I appeal to people to reach out and help me, I’m the first person in Ireland to have TIL therapy.
“It’s very hard to be accepted for it for a start. You have to be fit enough, well enough, the tumor has to be stable enough.”
“It’s taken half a year now to access it, I feel I was delayed by the fact I thought I would be covered by my health insurance company.”
The hospital “almost didn’t” take Susan for treatment without insurance, which would cover any “unexpected events” that may arise during the treatment.”I don’t have the built-in funds ready to pay for the unexpected emergency care,” she explained.
Susan set up a fundraiser at the end of July to receive the TIL therapy in Amsterdam, which is now nearing the €138,000 mark.
The mother of three will be required to stay near the hospital for one month after the 10-week procedure concludes.
“It’s not cheap, everything is dear,” she expressed.
“We’re going ahead with the GoFundMe as best we can,” she said.
Susan is hopeful that she will receive screening in mid-October but she will not receive any treatment until “the money is upfront”.
“I’ve got a young family who need me,” she said, adding that she is “full of life.”
Both Susan and her husband Greg who is also a retired GP appealed to the public for help.
“After all our life helping in the health system... We need help now,” Susan pleaded.
“We have to get up and fight everyday, which is really hard, it’s bad enough having cancer.”
EMA approval outstanding
In response to a query on TIL therapy being licensed in Ireland in the future, a HSE spokesperson said:
“The FDA granted Lifileucel (TIL) therapy accelerated approval within the US on 16 February this year for treatment of relapsed melanoma.”
They said that on June 28, 2024 Iovance Biotheraputics submitted an application to the European Medicines Agency (EMA) for approval of Lifileucel, however “as yet it is still in the regulatory process in the EU”.
“Under European and Irish legislation, medicines must be authorised before being marketed,” they said, adding that “the EMA approval process is in place to ensure safety and efficacy of medicines and continuously monitors and supervises the safety of medicines which have been authorised in the EU”.
They added: “Reimbursement or funding is not authorised until this process is completed and approval is formally granted.”
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