Sept 2009 Push ~ No Australian Child Left Behind
We need you to email/fax/write AGAIN (this September) to:
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your state health minister
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your federal health minister and parliamentary secretary
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the Clinical Technical Principal Committee (CTEPC) of the Australian Health Minister's Advisory Council.
It is important that we do this and DF wouldn't ask you again, if it were not crucial to point out that what we want, what our geneticists want, is exactly what is needed now in Australia. We aim to demonstrate that the National Registry proposal before them, is precisely what is needed and crucial to our sons' futures.
How? By downloading one or both of the two media releases from Prosensa and AVI-BioPharma below, prefacing them with a few lines pointing out the relevant sections (which we have drafted for you), and forwarding the press release and your email to our health department leaders (listed below - just click on a name to launch an email template)
Step 1: Click on the person below to address the email : (NB Please choose your state minister and the parliamentary secretary and the chair of the CTEPC committee)
Kevin Rudd (PM - send an email from his website)
Nicola Roxon (Federal Health Minister)
Mark Butler (Parliamentary Secretary for Health)
Dr David Ashbridge (Chair CTEPC Committee via Judith Mills, Secretary)
Paul Lucas (Qld Minister for Health)
Katy Gallagher (ACT Minister for Health)
John Della Bosca (NSW Minister for Health)
Lara Giddings (TAS Minister for Health)
Dr Kim Hames (WA Minister for Health)
John Hill (SA Minister for Health)
Konstantine Vatskalis (NT Minister for Health)
Daniel Andrews - (VIC Health Minister)
Step 2: Edit the subject line if you wish
Step 3: Paste this short intro/grab after your greeting (or compose your own intro)
Dear XXXX
Australian kids may miss out - Australia is considering a proposal to establish a national Registry for DMD, under a proposal before the Clinical Technical Principal Committee (CTEPC) of the Australian Health Minister's Advisory Council. Over 20 other nations have already established such Registries to facilitate enrolment of children affected with DMD into international trials for new therapies.
Without a National Registry for DMD that collates clinical and genetic data on affected Australian children, many boys will not be evaluated for their suitability for the next round of these international clinical trials. Many parents are asking what do we need to do to have access to the same opportunities as boys born with DMD in America and Europe?
In the past week 4 major biomedical companies have issued press releases concerning large scale recruitment of candidates for human trials: Prosensa, AVI BioPharma and Santhera. Following is a timely reminder that we need a national registry, snipped from a recent media release seeking recruitment of persons with DMD:
<snip>
Prosensa recently completed a phase I/II clinical trial for PRO-051, its lead compound for the treatment of Duchenne Muscular Dystrophy (DMD), and the company anticipates starting a phase II/III clinical study early next year. PRO-051 is directed to a specific mutation in the dystrophin gene that occurs in approximately 13% of the DMD patient population. In order to set up the pivotal study, patients with a genetic mutation amenable to exon skipping by PRO-051 need to be selected.
TREAT-NMD has developed a global database that contains precise genetic and clinical information from patients with DMD, including age, ambulation status and medication use. Using the TREAT-NMD Global Database for DMD, Prosensa has identified around 300 patients from 21 countries who meet the inclusion criteria for the upcoming trial. The TREAT-NMD database holds up-to-date information about all these patients that will allow them to be contacted for trial recruitment purposes through the national registries. These patients were matched to 50 potential trial sites and selected patients and sites will be contacted for participation in the upcoming clinical trial.
<end snip>
Please endorse the recommendations of the registry working party and leave no child behind by making Australia the 22nd country in the global Duchenne registry.
Yours very truly
[Insert your name or signature file]
Step 4: Attach one or both of the following media releases to the email.
Prosensa
AVI BioPharma
In addition, follow this link to a press release about a large recruitment call from Santhera & Tadaka.
