‘Fighting for all Kiwis’

As Alain Jorion deteriorated, he ‘decided to fight back’

As Alain Jorion deteriorated, he ‘decided to fight back’

A face of the fight for Keytruda: Alain Jorion (left), newly appointed as an ambassador for Lung Foundation New Zealand (LFNZ), says he will campaign for all New Zealanders for a new cancer agency, Pharmac reform and public funding of immunotherapy drug Keytruda for people with lung cancer. He is with LFNZ chief executive Philip Hope, who said Mr Jorion was “standing shoulder-to-shoulder” with other lung cancer patients. Mr Jorion will appear in a media campaign for LFNZ, with August 1 being World Lung Cancer Day. Picture by Liam Clayton
CEO Lung Foundation Philip Hope, Alain Jorion
CEO Lung Foundation Philip Hope, Alain Jorion
Alain Jorion, CEO Lung Foundation Philip Hope

The prominent fisherman, author and former New Zealand Fisherman of the Year is battling lung cancer, despite — like one in five people with lung cancer — having never been a smoker.

He and wife Rachel Jorion are selling assets to fund his Keytruda treatment, while knowing the immunotherapy drug is funded in many other countries.

Mr Jorion will receive his fourth cycle of treatment in Tauranga this week which has cost him more than $32,000 in total.

A subsidy paid by drug manufacturer Merek, Sharp and Dohme takes effect only from the 13th cycle, reducing the cost to about $150 per treatment.

There are still travel and accommodation expenses and other costs.

This week Mr Jorion faces possibly having to travel to Tauranga via Taupo because of the Waioeka Gorge closure.

Mr Jorion said Keytruda was funded for patients with advanced melanoma.

“It costs them nothing.

“I am not different from them but I am penalised by having to go privately, way out of town.

Mr Jorion joined forces with LFNZ to campaign for the public funding of Keytruda before he was invited last week to be one of the organisation’s ambassadors. He did not hesitate to accept the offer.

“I agreed to be on TV fighting for all Kiwis, not just me.”

Philip Hope, chief executive of LFNZ, said Mr Jorion’s situation highlighted “the many inequalities that exist for New Zealand’s biggest cancer killer”.

“Alain has been standing with us shoulder-to-shoulder advocating in support of patients getting access to Keytruda.”

Mr Jorion will join forces with other well-informed lung cancer patients to seek reform of Pharmac and to advocate for a new cancer agency to oversee the supply of complex treatments that lung cancer patients and other cancer patients need to stay alive.

Mr Jorion was diagnosed with lung cancer eight years ago.

His lower left lung lobe was removed but he was informed only days later that surgeons might not have removed all of the cancer.

Facing a choice of radiation or having his left lung out, Alain opted to have his lung removed.

Over the ensuing four years, he has lived a full life, only to be diagnosed a second time with stage four lung cancer in his remaining lung.

Despite the advanced lung cancer diagnosis in his remaining lung, Mr Jorion felt in reasonably good health.

He was “really floored” to be given a pamphlet saying “prepare for end of life.”

This past year, with support from Rachel and friends, Mr Jorion has continued to live as best he can — all the while suffering slowly deteriorating health and bouts of depression.

In April, with a worsening cough, fluid in his lung, and having lost considerable weight and strength, he decided to fight back.

“Knowing the public health system offers only chemotherapy as the standard care for my type of lung cancer, given the many adverse side-effects, I decided to take the steps necessary to get access to Keytruda,’’ he said.

“Keytruda gives me the best opportunity to stay well longer, with fewer adverse side effects.”

Mr Jorion travels to Tauranga to a private clinic called Canopy Cancer Care, where he has committed to doing four treatments of Keytruda.

This requires Alain and Rachel to be away from home for three days — that means a day either side of treatment to drive, which is tiring and causes additional stress.

His first treatments have seen immediate improvements in his health and quality of life.

The fluid in his lung has disappeared.

The persistent cough and shortness of breath has all but gone, he has more energy and his weight is increasing.

Mrs Jorion is much happier.

“Since beginning treatment, Alain has become much more positive,’’ she said.

“It is great to see him in better spirits and able to be more active at home — even to return to some of his hobbies.”

World Lung Cancer Day is observed on August 1. LFNZ will use the day to highlight the inequalities that exist in New Zealand for lung cancer, which kills more than 1800 patients every year or five people every day.

The prominent fisherman, author and former New Zealand Fisherman of the Year is battling lung cancer, despite — like one in five people with lung cancer — having never been a smoker.

He and wife Rachel Jorion are selling assets to fund his Keytruda treatment, while knowing the immunotherapy drug is funded in many other countries.

Mr Jorion will receive his fourth cycle of treatment in Tauranga this week which has cost him more than $32,000 in total.

A subsidy paid by drug manufacturer Merek, Sharp and Dohme takes effect only from the 13th cycle, reducing the cost to about $150 per treatment.

There are still travel and accommodation expenses and other costs.

This week Mr Jorion faces possibly having to travel to Tauranga via Taupo because of the Waioeka Gorge closure.

Mr Jorion said Keytruda was funded for patients with advanced melanoma.

“It costs them nothing.

“I am not different from them but I am penalised by having to go privately, way out of town.

Mr Jorion joined forces with LFNZ to campaign for the public funding of Keytruda before he was invited last week to be one of the organisation’s ambassadors. He did not hesitate to accept the offer.

“I agreed to be on TV fighting for all Kiwis, not just me.”

Philip Hope, chief executive of LFNZ, said Mr Jorion’s situation highlighted “the many inequalities that exist for New Zealand’s biggest cancer killer”.

“Alain has been standing with us shoulder-to-shoulder advocating in support of patients getting access to Keytruda.”

Mr Jorion will join forces with other well-informed lung cancer patients to seek reform of Pharmac and to advocate for a new cancer agency to oversee the supply of complex treatments that lung cancer patients and other cancer patients need to stay alive.

Mr Jorion was diagnosed with lung cancer eight years ago.

His lower left lung lobe was removed but he was informed only days later that surgeons might not have removed all of the cancer.

Facing a choice of radiation or having his left lung out, Alain opted to have his lung removed.

Over the ensuing four years, he has lived a full life, only to be diagnosed a second time with stage four lung cancer in his remaining lung.

Despite the advanced lung cancer diagnosis in his remaining lung, Mr Jorion felt in reasonably good health.

He was “really floored” to be given a pamphlet saying “prepare for end of life.”

This past year, with support from Rachel and friends, Mr Jorion has continued to live as best he can — all the while suffering slowly deteriorating health and bouts of depression.

In April, with a worsening cough, fluid in his lung, and having lost considerable weight and strength, he decided to fight back.

“Knowing the public health system offers only chemotherapy as the standard care for my type of lung cancer, given the many adverse side-effects, I decided to take the steps necessary to get access to Keytruda,’’ he said.

“Keytruda gives me the best opportunity to stay well longer, with fewer adverse side effects.”

Mr Jorion travels to Tauranga to a private clinic called Canopy Cancer Care, where he has committed to doing four treatments of Keytruda.

This requires Alain and Rachel to be away from home for three days — that means a day either side of treatment to drive, which is tiring and causes additional stress.

His first treatments have seen immediate improvements in his health and quality of life.

The fluid in his lung has disappeared.

The persistent cough and shortness of breath has all but gone, he has more energy and his weight is increasing.

Mrs Jorion is much happier.

“Since beginning treatment, Alain has become much more positive,’’ she said.

“It is great to see him in better spirits and able to be more active at home — even to return to some of his hobbies.”

World Lung Cancer Day is observed on August 1. LFNZ will use the day to highlight the inequalities that exist in New Zealand for lung cancer, which kills more than 1800 patients every year or five people every day.

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