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Petition Tag - rare disease
This petition calls on all Australians to demand reform to the Better Start for Children with Disability (Better Start) initiative.
Better Start aims to increase access to early intervention for children with developmental disabilities and comes into place on 1 July 2011.
Under the scheme, children up to the age of 6 may access up to $12,000 for treatments, while Medicare rebates will be available to older children.
The Better Start initiative excludes thousands of Australian children with developmental disabilities as eligibility is limited to five diagnoses only; sight and hearing impairments, Cerebral Palsy, Down’s Syndrome and Fragile X Syndrome. Children with Autism are already able to access a similar level of support through the Helping Children with Autism program.
Children excluded from Better Start comprise those with rare conditions, genetic syndromes and chromosomal abnormalities, acquired brain injuries and other physical disabilities, and those without a diagnosis. These children have comparable early intervention needs and many are able to prove the beneficial impact of such treatment. Already among the most marginalised in Australia with poorer access to treatments, research and support, these children will miss out on the help they critically need in the early years of development.
This petition calls on the Federal Government to remove the inequalities of the Better Start policy by adopting a needs-based model. Eligibility for Better Start should be determined by the functional aspects of the child’s disability, the level of impairment and how the impairment affects the child. This approach complies with recommendations contained in the Draft Productivity Commission Report on Disability Care and Support.
The Australian Government must give all Australian children with developmental disabilities a Better Start to life, not just a select few.
2. In Support of Canadian Rare Disease Plan and Orphan Drug Policy 
Canada is the only developed country in the world that does not have a Federal Healthcare policy for persons with rare disorders.
With 1 in 12 Canadians suffering from 1 of over 7,000 different rare diseases, it is time our country stepped up and addressed this glaring inequality, and created a policy that encourages research, and provides funding for existing therapies.
3. Demand Funding for Life-Saving Treatment of PNH
AUSTRALIAN CITIZENS ONLY PLEASE
Paroxysmal Nocturnal Haemoglobinuria is a very rare, devastating and often fatal disease, affecting 70 Australians. There is only 1 effective treatment in the world, Soliris® (Eculizumab), which is available in over 30 countries but NOT Australia.
We are urging the Federal Government to take urgent action to allow Australian PNH patients access to Soliris.
4. Establish a body to support Rare conditions in Australia
A condition (disease, syndrome or disorder) is classed as rare if it affects less than 1 in 2000 people.
There are approximately 8000 known rare diseases, collectively affecting 6-10% of the population. Rare diseases have the following common features;
* Most begin in childhood (usually diagnosed in children aged < 2years) and continue throughout life
* Obtaining a definitive diagnosis is often difficult and delayed creating great stress for those involved
* Many rare diseases have no cure and some can be prevented
* Neurological & intellectual disabilities occur in about 1/2 of all cases
* Families experience isolation, psychological and financial stress
* Health professionals have inadequate access to information, education and resources
* 35% of deaths in children aged < 1 year are due to rare diseases
* ~10% of deaths in children aged between 1 and 15 are due to rare diseases
Research, awareness & money are understandably directed at more common diseases & disorders. Collectively, rare diseases are as common as diabetes- which has been described as a National Epidemic!
Belgium, Denmark, Europe, France, Germany, Greece, The United States, Italy, Netherlands, Canada, New Zealand, Spain, Sweden, Taiwan all have National bodies to support rare diseases.
The United States have just announced new initiatives that put Australia even further behind! See - http://www.genome.gov/27531962 (New Program to Develop Therapeutics for Rare and Neglected Diseases).
Research into rare diseases can be virtually non existent, support groups are the same.
To set up a Not for Profit organisation requires committed parents who are by law required to have regular meetings and maintain a constitution - how do you do this if your numbers are limited?
Development of a therapeutic for a rare condition is not a priority for a pharmaceutical company - who would buy it? where would the profits come from?
A recent email from the Australian minister from health says:
"At present some members of the Human Genetics Society of Australasia (HGSA), in collaboration with support groups, are looking at a strategy for developing a rare disorders organisation as well as policy around this matter. These members are trying to establish a group to engage at a Federal level and look at provision for rare disorders but I believe this is only at an early stage. It has nevertheless been flagged as a service gap."
Is identifying this as a service gap good enough?
