Hypopara patients deserve better quality of life - make it easier for Hypopara patients to access Forteo
To the members of the House of Representatives and the Senate of the Australian Parliament.
Hypoparathyroidism is a rare disorder that is poorly understood by the medical profession and the community at large. In essence, hypoparathyroidism – hypopara for short – is a condition where the parathyroid glands are non-existent or barely work. This means the body cannot regulate levels of calcium appropriately. This means that individuals will experience a range of symptoms such as fatigue, tetany, ‘brain fog’ to name a few.
Hypopara is so poorly understood that advanced treatments such as a parathyroid hormone replacement called Forteo is not available to all at an affordable rate even through it is on the Pharmaceutical Benefits Scheme. Forteo is used by some individuals with hypopara to help enhance their quality of life.
Forteo costs $500 a month for those individuals that wish to use it. In other words an annual supply of this essential medication for a person with hypopara would cost around $6,000.
It is unfair on those with this disorder that they are not only misunderstood by family, friends, work colleagues and other members of the community – they are forced to pay a premium for a medication that can help make their days, weeks, months and years more bearable. It should be cheaper for them to be able to do so.
This Rare Disease Day – 29 February 2016 - we ask that you take a moment to help those of us with hypopara enjoy a greater quality of life with some government support.
We, the undersigned, respectfully ask that access to Forteo be made cheaper as soon as possible.
Updates
February 28, 2016
I am currently drafting formal letters to the Pharmaceutical Benefits Advisory Committee to highlight the financial toll this cost places on patients. Call your local member of parliament today to demand they address the accessibility of Forteo. We need to force this cost issue into the public record.
February 28, 2016
The momentum behind this petition is proving that the medical community can no longer ignore the struggles of Hypopara patients. Post the link to your Facebook feed right now and email your local representative to demand they review the cost of Forteo.
Reached 100 supporters
February 28, 2016
70 Comments
Forteo has changed my sons life. His calcium/ phosphorus improved and also his urine calcium excretion improved as well. He took his doses divided into 3 times a day and has a very dedicated endocrinologist & nephrology team. Everyone should have the chance to the same access of medical care & medication around the world especially with rare diseases.
My wife has hypopara and has pth injections daily. Her life is hugely improved by this. Although it's expensive, it's far cheaper than bi weekly blood tests at hospital!
My son was born last year with idiopathic Hypopara and will in the future require forteo. Any drug that will give him a normal life is a must for us. Any help with the cost will help a lot.
Hypoparathyroidism is the last endocrine deficiency disease to receive a functional treatment. There are two drugs, in the world, that treat the hormone deficiency. - Forteo by Eli Lilly and NATPARA by Shire. Please make these drugs available to those who suffer from this rare and challenging disease.
I take this medication for Surgically Induced Hypoparathyroidism. Without it I would be constantly in ED... This drug keeps me alive, yet I am $ 500 out of pocket every 4 weeks.... We need it to be on the PBS
Yes its far too expensive for the average me especially since I am 77 years old and on a service pension
This medication is way too expensive. Also after being on it 6 months I am now diabetic
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Hypopara patients deserve better quality of life - make it easier for Hypopara patients to access Forteo
To the members of the House of Representatives and the Senate of the Australian Parliament.
Hypoparathyroidism is a rare disorder that is poorly understood by the medical profession and the community at large. In essence, hypoparathyroidism – hypopara for short – is a condition where the parathyroid glands are non-existent or barely work. This means the body cannot regulate levels of calcium appropriately. This means that individuals will experience a range of symptoms such as fatigue, tetany, ‘brain fog’ to name a few.
Hypopara is so poorly understood that advanced treatments such as a parathyroid hormone replacement called Forteo is not available to all at an affordable rate even through it is on the Pharmaceutical Benefits Scheme. Forteo is used by some individuals with hypopara to help enhance their quality of life.
Forteo costs $500 a month for those individuals that wish to use it. In other words an annual supply of this essential medication for a person with hypopara would cost around $6,000.
It is unfair on those with this disorder that they are not only misunderstood by family, friends, work colleagues and other members of the community – they are forced to pay a premium for a medication that can help make their days, weeks, months and years more bearable. It should be cheaper for them to be able to do so.
This Rare Disease Day – 29 February 2016 - we ask that you take a moment to help those of us with hypopara enjoy a greater quality of life with some government support.
We, the undersigned, respectfully ask that access to Forteo be made cheaper as soon as possible.
Updates
February 28, 2016
I am currently drafting formal letters to the Pharmaceutical Benefits Advisory Committee to highlight the financial toll this cost places on patients. Call your local member of parliament today to demand they address the accessibility of Forteo. We need to force this cost issue into the public record.
February 28, 2016
The momentum behind this petition is proving that the medical community can no longer ignore the struggles of Hypopara patients. Post the link to your Facebook feed right now and email your local representative to demand they review the cost of Forteo.
Reached 100 supporters
February 28, 2016
70 Comments
I worked with a clinical nurse, who has had to give up her profession because of this condition, please listen to the pleas and assist with the funding and help these suffering this condition to have some quality
Forteo has changed my sons life. His calcium/ phosphorus improved and also his urine calcium excretion improved as well. He took his doses divided into 3 times a day and has a very dedicated endocrinologist & nephrology team. Everyone should have the chance to the same access of medical care & medication around the world especially with rare diseases.
My wife has hypopara and has pth injections daily. Her life is hugely improved by this. Although it's expensive, it's far cheaper than bi weekly blood tests at hospital!
My son was born last year with idiopathic Hypopara and will in the future require forteo. Any drug that will give him a normal life is a must for us. Any help with the cost will help a lot.
Hypoparathyroidism is the last endocrine deficiency disease to receive a functional treatment. There are two drugs, in the world, that treat the hormone deficiency. - Forteo by Eli Lilly and NATPARA by Shire. Please make these drugs available to those who suffer from this rare and challenging disease.
I take this medication for Surgically Induced Hypoparathyroidism. Without it I would be constantly in ED... This drug keeps me alive, yet I am $ 500 out of pocket every 4 weeks.... We need it to be on the PBS
Yes its far too expensive for the average me especially since I am 77 years old and on a service pension
This medication is way too expensive. Also after being on it 6 months I am now diabetic
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I worked with a clinical nurse, who has had to give up her profession because of this condition, please listen to the pleas and assist with the funding and help these suffering this condition to have some quality