Government fails to fund PNH treatment

NEWSREADER: The Federal Government is under pressure to provide funding for Soliris, a treatment for an ultra-rare blood disease which is putting people’s lives at risk. It’s predicted one in three people living with the PNH condition will die within five years of being diagnosed if they don’t have access to the right treatment

PNH Support Association(*) president Linda Charlton(*) says sufferers depend on the Government to help them out.

LINDA CHARLTON: The Government’s decision not to fund Soliris means that there’s – patients who are currently receiving treatment through compassionate use scheme, that’s now under question in the long term, and also those patients who desperately need this lifesaving drug now and don’t have access to it.

7 news

Funding needed for rare diseases: group

A group of Australians living with an ultra-rare disease have been stripped of hope following last week’s federal budget announcement, a support group says.

The government’s decision not to fund treatment for a life-threatening condition – Paroxysmal Nocturnal Haemoglobinuria (PNH) – will cost lives, the PNH Support Association of Australia (PNHSSA) says.

PNH, which is believed to affect just 70 Australians, causes red blood cells to explode causing a variety of major health problems, such as the formation of blood clots, high blood pressure and damage or failure of the organs, such as the brain, liver and kidneys.

Soliris (eculizumab) is the only treatment for PNH that reduces the destruction of red blood cells caused by a person’s own immune system.

Royal Melbourne Hospital director of the Department of Clinical Haematology and Bone Marrow Transplant Service, Professor Jeffrey Szer, said one in three people living with PNH will die within five years of diagnosis if they do not have access to effective treatment.

“If PNH struck Australians at the same rate diabetes or heart disease do, the government would not hesitate to open its wallet and fund the necessary medical care,” Prof Szer said in a statement.

“I see no reason for people living with a rare disease to be ignored, simply because there are so few of them.”

Canberra Times

Drug not funded

Sufferers of a rare blood disease are devastated the Federal Government failed to fund a potentially life-saving medication in the budget. About 70 Australians suffer from paroxysmal nocturnal haemoglobinuria, or PNH, which causes the immune system to attack red blood cells.

One-third of sufferers die within five years of diagnosis. In March, the Pharmaceutical Benefits Advisory Committee found a medication called Eculizumab, marketed as Soliris, was suitable for listing on the Government’s Life Saving Drugs Program for treatment of PNH, but that specific criteria for initiation and treatment would need to be developed by independent experts.

thewest

Funding needed for rare diseases: group

A group of Australians living with an ultra-rare disease have been stripped of hope following last week’s federal budget announcement, a support group says.

The government’s decision not to fund treatment for a life-threatening condition – Paroxysmal Nocturnal Haemoglobinuria (PNH) – will cost lives, the PNH Support Association of Australia (PNHSSA) says.

PNH, which is believed to affect just 70 Australians, causes red blood cells to explode causing a variety of major health problems, such as the formation of blood clots, high blood pressure and damage or failure of the organs, such as the brain, liver and kidneys.

Soliris (eculizumab) is the only treatment for PNH that reduces the destruction of red blood cells caused by a person’s own immune system.

Royal Melbourne Hospital director of the Department of Clinical Haematology and Bone Marrow Transplant Service, Professor Jeffrey Szer, said one in three people living with PNH will die within five years of diagnosis if they do not have access to effective treatment.

“If PNH struck Australians at the same rate diabetes or heart disease do, the government would not hesitate to open its wallet and fund the necessary medical care,” Prof Szer said in a statement.

“I see no reason for people living with a rare disease to be ignored, simply because there are so few of them.”

WAtoday

Funding needed for rare diseases: group

A group of Australians living with an ultra-rare disease have been stripped of hope following last week’s federal budget announcement, a support group says.

The government’s decision not to fund treatment for a life-threatening condition – Paroxysmal Nocturnal Haemoglobinuria (PNH) – will cost lives, the PNH Support Association of Australia (PNHSSA) says.

PNH, which is believed to affect just 70 Australians, causes red blood cells to explode causing a variety of major health problems, such as the formation of blood clots, high blood pressure and damage or failure of the organs, such as the brain, liver and kidneys.

Soliris (eculizumab) is the only treatment for PNH that reduces the destruction of red blood cells caused by a person’s own immune system.

Royal Melbourne Hospital director of the Department of Clinical Haematology and Bone Marrow Transplant Service, Professor Jeffrey Szer, said one in three people living with PNH will die within five years of diagnosis if they do not have access to effective treatment.

“If PNH struck Australians at the same rate diabetes or heart disease do, the government would not hesitate to open its wallet and fund the necessary medical care,” Prof Szer said in a statement.

“I see no reason for people living with a rare disease to be ignored, simply because there are so few of them.”

BigPond News

Rare disease funding needed

A group of Australians living with an ultra-rare disease have been stripped of hope following last week’s federal budget announcement, a support group says.

The government’s decision not to fund treatment for a life-threatening condition – Paroxysmal Nocturnal Haemoglobinuria (PNH) – will cost lives, the PNH Support Association of Australia (PNHSSA) says.

PNH, which is believed to affect just 70 Australians, causes red blood cells to explode causing a variety of major health problems, such as the formation of blood clots, high blood pressure and damage or failure of the organs, such as the brain, liver and kidneys.

Soliris (eculizumab) is the only treatment for PNH that reduces the destruction of red blood cells caused by a person’s own immune system.

Royal Melbourne Hospital director of the Department of Clinical Haematology and Bone Marrow Transplant Service, Professor Jeffrey Szer, said one in three people living with PNH will die within five years of diagnosis if they do not have access to effective treatment.

‘If PNH struck Australians at the same rate diabetes or heart disease do, the government would not hesitate to open its wallet and fund the necessary medical care,’ Prof Szer said in a statement.

‘I see no reason for people living with a rare disease to be ignored, simply because there are so few of them.’

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