Senate Community Affairs Legislation Committee [Part 2], , 1:58:37 to 2:04:06
The committee reviews the progress of expanding newborn bloodspot screening to 80 conditions, with specific focus on the MSAC recommendation regarding Pompe disease.
Topics: Health, Child safety
Speakers: Senator Anne Ruston, Dr Liz Develin, Paul McBride, Unknown Speaker
>> in the main. So I said there's a rebate audit to make look at more make sure that the insurers are correcting the right information so the right information is processed but in terms of working out
>> that's what your your agency does.
>> So there's a a rebate audit that services Australia run annually on their audit processing system but most of the reconciliation to make sure people have claimed the right rebate is done by the
>> Okay. Well, we'll look forward to seeing whether we get greater transparency next time around um with this. So thank you very much. Um, could I ask the questions I always ask um about newborn blood So I'm just checking um as we sit here today, Dr. Develin. Um how many conditions are currently intentionally screened for um part of the newborn screening program?
>> Uh good evening, Senator. Um and I did want to alert you that the department has established a new web page >> to be able to provide you this information uh rather than you asking us each time we get to see each other.
>> I'm hoping you're going to tell me 80 one day, but how many? [gasps] Uh
Senator, so I did just want to alert you that there has been a web page established that breaks down all the numbers that we have talked about uh over over many months. So there are 59 being detected or under implementation. 34 35 of those are target four more targeted uh agreed and under implementation and 20 non-target agreed.
>> Okay. So just coming back to being very specific to my question, how many conditions are currently intentionally screened? Is that the 59 or the 35?
>> That is the 35 target and there are four more to come.
>> Four more to come. So 35 to hopefully be 39 at some stage or another. When is the expectation that we'll be in a position to reach the 80 targeted conditions as promised by the prime
we uh there are 80 either being screened under implementation being considered or agreed not for inclusion. So that is how we get to the 80 of numbers of 59 five under consideration and the 16 not recommended. That gets to the 80
the prime minister and I can't I've I've read this into every estimate since then said that there will he will increase the number of conditions screened to 80 um and refers to them intentionally So the 80 you're talking about are not intentionally screened. A number of those um are picked up through the process of the intentional screening. Is that correct?
>> So we there are 20 non-target.
>> So 20 non-target. So that takes us down
>> and then as I said there are the 35 target which are currently being screened. There are four more agreed to be implemented. Five under consideration and 16 not recommended.
>> Not recommended. So the 16 that are not recommended is one of those Pompei's disease.
>> Yes, Senator, that is correct. So that was MSAC's recommendation and health ministers agreed with that recommendation from MSAC not to proceed with Pompei.
>> So can you tell us for the record what was the condition that the baby that the prime minister held up in the leadup to the 2022 election? What condition did that baby have when he promised that child's mother that there would be blood spot screening for the condition that baby had? What was the condition of that baby?
>> Senator, I'm aware of media reports that that baby had Pompei.
so does World's Practice um include screening for Pompei disease?
uh [clears throat] it varies internationally as we have described before Australia's decision-making framework included using MSAC as the body to provide advice recognizing their expertise. We have considered the conditions that are screened overseas. We've also recently done a further public call where academics, experts, members of the public can provide further suggestions for conditions that would go through the decision-making
>> so did you want to finish? There are