ME/CFS - background to the drug list contained in the 2024 TAB document
Dear National Disability Insurance Agency,
I am seeking information on the drugs that Australians with ME/CFS are expected to consider prior to gaining access to the NDIS.
The 2024 TAB document found at the link below lists a number of drugs that to the best of my knowledge are NOT generally available in Australia for treating or managing ME/CFS.
Given that the NDIA has advised that it has not information other than its TAB document I am now seeking information/correspondence/notes on how the drug list was determined.
https://www.righttoknow.org.au/request/t...
Yours faithfully,
Julie Keys
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Kind regards
Freedom of Information Team
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [11][NDIA request email]
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
References
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1. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
2. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
3. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
4. https://www.ndis.gov.au/participants/usi...
https://www.ndis.gov.au/participants/usi...
5. https://www.ndis.gov.au/providers/workin...
https://www.ndis.gov.au/providers/workin...
6. https://data.ndis.gov.au/
https://data.ndis.gov.au/
7. mailto:[NDIA request email]
mailto:[NDIA request email]
8. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
9. mailto:[email address]
mailto:[email address]
10. https://www.ndis.gov.au/
https://www.ndis.gov.au/
11. mailto:[NDIA request email]
Dear Julie Keys
Freedom of Information Request: Acknowledgement
Thank you for your request of 7 November 2024, made under the Freedom of
Information Act 1982 (FOI Act), for documents held by the National
Disability Insurance Agency (NDIA).
Scope of your Request
You have requested access to:
“…I am seeking information on the drugs that Australians with ME/CFS are
expected to consider prior to gaining access to the NDIS…”
Irrelevant Information
Section 22 of the FOI Act allows an Agency to redact information from
documents if that information would reasonably be regarded as irrelevant
to a request for access.
Given the nature of your request, it does not seem that NDIA staff
members’ surnames and contact details would be relevant to you. Can you
please send me a reply email confirming that such details are irrelevant
to your request for access?
Processing Timeframes
In accordance with section 15(5)(b) of the FOI Act, a 30-day statutory
period for processing your request commenced from 8 November 2024. This
30-day period expires on 8 December 2024.
The 30-day period can be extended in a number of ways, including with your
agreement.
Unfortunately, it is currently taking us a little longer than 30 days to
process non-personal FOI requests due to a very high volume. I am
therefore seeking your agreement to a 15-day extension of time under
section 15AA of the FOI Act. If you agree to this extension, the new due
date for us to decide on your request will be 22 December 2024.
If you do not agree and we are unable to process your request within the
30-day period expiring on 8 November 2024, we will be deemed to have
refused your request and you will not have a right to seek internal review
of that decision. You will, however, retain your right to external review
by the Australian Information Commissioner.
Please let us know if you agree by Monday 25 November 2024.
Disclosure Log
Subject to certain exceptions, documents released under the FOI Act will
be published on the NDIA’s disclosure log located on our website.
If you have any concerns about the publication of the documents you have
requested, please contact me.
Next steps
Your request will be allocated to an authorised FOI decision-maker. The
decision-maker may need to contact you to discuss a range of matters,
including refining the scope of your request.
We will contact you using the email address you have provided. Please
advise if you would prefer us to use an alternative means of contact.
In the meantime, if you have any questions or need help, please contact us
at [1][NDIA request email].
Regards
Cindy – CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [2][NDIA request email]
[3]NDIA logo
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[5]Aboriginal and Torres Strait Islander flags graphic
From: Julie Keys <[FOI #12302 email]>
Sent on: Wednesday, November 6, 2024 10:39:11 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - ME/CFS - background to the drug
list contained in the 2024 TAB document
[You don't often get email from
[FOI #12302 email]. Learn why this is important
at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
I am seeking information on the drugs that Australians with ME/CFS are
expected to consider prior to gaining access to the NDIS.
The 2024 TAB document found at the link below lists a number of drugs that
to the best of my knowledge are NOT generally available in Australia for
treating or managing ME/CFS.
Given that the NDIA has advised that it has not information other than its
TAB document I am now seeking information/correspondence/notes on how the
drug list was determined.
https://aus01.safelinks.protection.outlo...
Yours faithfully,
Julie Keys
References
Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]
Dear Julie Keys
Apologies for my error in the previous email – I didn’t include the FOI
reference number in the subject.
Freedom of Information Request: Acknowledgement
Thank you for your request of 7 November 2024, made under the Freedom of
Information Act 1982 (FOI Act), for documents held by the National
Disability Insurance Agency (NDIA).
Scope of your Request
You have requested access to:
“…I am seeking information on the drugs that Australians with ME/CFS are
expected to consider prior to gaining access to the NDIS…”
Irrelevant Information
Section 22 of the FOI Act allows an Agency to redact information from
documents if that information would reasonably be regarded as irrelevant
to a request for access.
Given the nature of your request, it does not seem that NDIA staff
members’ surnames and contact details would be relevant to you. Can you
please send me a reply email confirming that such details are irrelevant
to your request for access?
Processing Timeframes
In accordance with section 15(5)(b) of the FOI Act, a 30-day statutory
period for processing your request commenced from 8 November 2024. This
30-day period expires on 8 December 2024.
The 30-day period can be extended in a number of ways, including with your
agreement.
Unfortunately, it is currently taking us a little longer than 30 days to
process non-personal FOI requests due to a very high volume. I am
therefore seeking your agreement to a 15-day extension of time under
section 15AA of the FOI Act. If you agree to this extension, the new due
date for us to decide on your request will be 22 December 2024.
If you do not agree and we are unable to process your request within the
30-day period expiring on 8 November 2024, we will be deemed to have
refused your request and you will not have a right to seek internal review
of that decision. You will, however, retain your right to external review
by the Australian Information Commissioner.
Please let us know if you agree by Monday 25 November 2024.
Disclosure Log
Subject to certain exceptions, documents released under the FOI Act will
be published on the NDIA’s disclosure log located on our website.
If you have any concerns about the publication of the documents you have
requested, please contact me.
Next steps
Your request will be allocated to an authorised FOI decision-maker. The
decision-maker may need to contact you to discuss a range of matters,
including refining the scope of your request.
We will contact you using the email address you have provided. Please
advise if you would prefer us to use an alternative means of contact.
In the meantime, if you have any questions or need help, please contact us
at [1][NDIA request email].
Regards
Cindy – CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [2][NDIA request email]
[3]NDIA logo
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[5]Aboriginal and Torres Strait Islander flags graphic
From: Julie Keys <[6][FOI #12302 email]>
Sent on: Wednesday, November 6, 2024 10:39:11 PM
To: foi <[7][NDIA request email]>
Subject: Freedom of Information request - ME/CFS - background to the drug
list contained in the 2024 TAB document
[You don't often get email from
[8][FOI #12302 email]. Learn why this is
important at [9]https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
I am seeking information on the drugs that Australians with ME/CFS are
expected to consider prior to gaining access to the NDIS.
The 2024 TAB document found at the link below lists a number of drugs that
to the best of my knowledge are NOT generally available in Australia for
treating or managing ME/CFS.
Given that the NDIA has advised that it has not information other than its
TAB document I am now seeking information/correspondence/notes on how the
drug list was determined.
[10]https://aus01.safelinks.protection.outlo...
Yours faithfully,
Julie Keys
References
Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]
6. mailto:[FOI #12302 email]
7. mailto:[NDIA request email]
8. mailto:[FOI #12302 email]
9. https://aka.ms/LearnAboutSenderIdentific...
10. https://www.righttoknow.org.au/request/t...
Dear foi,
I'm just writing to find out when the agency will be able to respond to my request for correspondence on the "drugs that Australians with ME/CFS are expected to consider prior to gaining access to the NDIS…”
Yours sincerely,
Julie Keys
Dear Julie
Thank you for your email.
I acknowledge the 30-day statutory period for processing my request, which
commenced on 7 November 2024 and ends on 7 December 2024.
Given our current workload and the recent allocation of your matter, I
advise that I require additional time to process your request as it is
unlikely that I will meet the legislative due date.
So that your internal review rights are not impacted, could you please
confirm your agreement to a 30-day extension of time under section 15AA of
the FOI Act by responding to this email.
I advise that if you agree, the new due date for us to make a decision on
your request will be 6 January 2024.
Can I please ask that you respond this extension of time by 11:59pm
Saturday 7 December 2024.
If you have any questions or concerns, then please do not hesitate to
contact me at [1][NDIA request email].
Kind regards
Wendy (WNN633)
Senior Freedom of Information Officer
Complaints Management and FOI Branch
General Counsel Division
National Disability Insurance Agency
E: [2][NDIA request email]
[3]Title: NDIS delivered by the National Disability Insurance Agency
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[5]Aboriginal and Torres Strait Islander flags graphic
Dear Julie
Thank you for agreeing to the request for an extension of time under s15AA
of the FOI Act.
So that I can accurately process your request and attempt to locate
relevant documents, can you please confirm that you are seeking the
following:
Internal communication referencing the Table 1 Symptom Management
strategies contained within the TAB document ‘Myalgic encephalomyelitis /
Chronic fatigue syndrome’ (page 5-6 of the attached document).
Can I please ask that you respond to this email at your earliest
convenience, or by 5pm Friday 20 December 2024.
Warmest regards,
Wendy (WNN633)
Senior Freedom of Information Officer
Complaints Management and FOI Branch
General Counsel Division
National Disability Insurance Agency
E: [1][NDIA request email]
[2]Title: NDIS delivered by the National Disability Insurance Agency
[3]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[4]Aboriginal and Torres Strait Islander flags graphic
Dear foi,
I confirm that I am seeking the following information:
Internal communication referencing the Table 1 Symptom Management
strategies contained within the 2024 TAB document ‘Myalgic encephalomyelitis /
Chronic fatigue syndrome’.
This document lists a number of drugs and I am seeking information on the source of each of these recommendations for the various drugs that are listed.
Yours sincerely,
Julie Keys