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Hypopara patients deserve better quality of life - make it easier for Hypopara patients to access Forteo

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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.

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