- The Hon Sussan Ley MPMinister for Health
Stop Huntington's Disease
Have PGD recognised and funded under Medicare for those with Huntington's Disease
About Huntington's Disease
Every one of us carries the Huntington gene. For some of us, it is faulty, leading to Huntington’s disease (HD) – a fatal, neurological genetic condition affecting 10 out of 100,000 people in Australia. While this devastating disease might not be well known within the wider community, it is not rare. It could affect someone you know.
From the onset of symptoms, HD leads to total incapacitation and eventual death within 15 to 20 years. Those carrying the Huntington’s gene can become symptomatic from as early as 20 years of age. Each child born to a parent with Huntington’s disease has a 50% chance of inheriting the faulty gene. There is no cure for HD, however, through Preimplantation Genetic Diagnosis (PGD) we can stop HD being passed on to future generations.
Right now people impacted by HD can go through the IVF process to access PGD. PGD enables geneticists to screen for this deadly disease. This ensures that the next generation of children from a HD family has no risk of inheriting this disease, effectively wiping it out for all future generations.
We need your help
The PGD process is currently prohibitively expensive as the Australian Medicare system does not recognise or provide financial assistance to HD families.
It is unjust that due to the financial expense, PGD remains out of reach of Australian HD families who need it the most. This barrier forces them into the heartbreaking decision to choose between not having children or having children and hoping that their children do not inherit the faulty gene.
Please support the Huntington’s Victoria campaign to “Stop HD through PGD” by signing this petition to let our Government know that as a community, we believe access to affordable PGD through our existing Medicare system is a right for those affected by HD.
For more information on Huntington's disease and/or Huntington's Victoria services, please visit www.huntingtonsvic.org.au. Please share far and wide and let's #stopHDthroughPGD.
- Minister for Health
The Hon Sussan Ley MP
Stop Huntington's disease with PGD
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