In April 2023, TANZI was advised by the Ministry of Health they were unable to progress work on the Health Select Committee petition recommendations at this time
"I am extremely appreciative of our previous engagements in regard to Manatū Hauora’s role in facilitating recommendations made by the Select Committee in response to your petition on the inclusion of the use of T3 in the management of hypothyroid disease. I am writing to update you on the discussions that have since been held and to regrettably inform you we are unable to progress this work at this time." Ministry of Health (3 April 2023)
READ THE 3 APRIL 2023 LETTER FROM THE MINISTRY OF HEALTH HERE
TANZI will continue to look for opportunities to progress the aims of our petition
While the news from the Ministry of Health is deeply disappointing, our petition has sent a strong message to NZ's professional bodies who develop thyroid guidelines i.e. "significant improvement is needed in key areas". Representatives from TANZI are continuing to look for opportunities to progress these improvements.
In the last decade there have been many petitions run by overseas thyroid patient groups, calling for change. What these petitions have done is woken up a significant number of influential endocrinologists in other countries who develop diagnosis and treatment guidelines. In the UK, USA and Europe we are seeing diagnostic and treatment guidelines begin to move in a better direction for patients. Our efforts here have centered around bringing these changes to the attention of organizations like PHARMAC and BPAC (who develop NZ diagnosis and treatment guidelines for GPs). These organizations base NZ guidelines, medical training programmes and lab testing policies on what occurs overseas. Things changing for the better in other countries, is likely to eventually happen here.
What you can continue to do
In the meantime:
- SIGN TTHE NZ HEALTH RESTAILERS PETITION OPPOSING THE GOVERNMENT'S THERAPEUTIC PRODUCTS BILL.
This bill was passed in to legislation in June and is likely to make it harder for thyroid patients to access and afford supplements like vitamin D, C, B12, iron tablets and medications containing T3. TANZI opposed this bill in a written submission to the Ministry of Health in 2019. - Continue to read and learn about thyroid disease.
- Support the work of international thyroid patient support groups, endocrinologists and doctors who like TANZI are calling for change.
- Continue to share the HEALTH SELECT COMMITTEE'S FINAL REPORT on our petition with your doctor/endocrinologist, friends and family. The final report supports our position that change is needed to NZ guidelines and medical training.
- If you haven't read it yet: Rethinking Hypothyroidism by Antonio C Bianco MD, is a great book to give your doctor/endocrinologist. Dr Antonio is the ex-President of the American Thyroid Association and well respected worldwide amongst endocrinologists. He is making good headway in speaking to endocrinologists and doctors worldwide about the importance of listening to patients, using thyroid blood tests alongside the TSH test and prescribing medications containing T3 for hypothyroidism, where it is clinically indicated. CLICK HERE TO READ MORE ABOUT HIS BOOK, RETHINKING HYPOTHYRODISM His book is available in several formats and available on Trade Me, Amazon and a range of other book retailers.
This petition update was posted on 19th August 2023
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In 2022, TANZI and the Ministry of Health agreed to establish a working group to facilitate incorporate the Health Select Committee recommendations of the
The Ministry of Health and TANZi jointly agreed to establish a working group comprising:
- Patient representatives from TANZi
- 2-3 NZ doctors who are successfully diagnosis and treating patients with hypothyroidism, and
- 2-3 representatives from the NZ Royal Colleges of General Practitioners and Physicians. These organizations represent GPs and endocrinologists.
A Terms of Reference was drafted by the Ministry of Health. The initial focus would be on developing new guidelines for doctors and endocrinologists for those NZ hypothyroid patients who benefit from medications containing the active thyroid hormone triiodothyronine (T3 for short).
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In August 2021, the Health Select Committee ruled in TANZi's favour
“We acknowledge the courage of all the people who shared their story with us through this petition, and thank them for doing so. We also thank the petitioner and the Thyroid Association of New Zealand for their advocacy for patients affected by thyroid disease.
We encourage the Ministry of Health to facilitate discussions between the Thyroid Association of New Zealand and the Royal Australasian College of Physicians about the diagnosis and treatment of thyroid disease with a view to ensuring that:
- guidelines and position statements on thyroid function testing and the management of thyroid disease are kept up to date and aligned with international best practice
- the lived experience of those with thyroid disease is respected and taken into account in clinical decision-making processes
- ongoing professional development is available so that health practitioners are aware of the current best practice in this area.”
READ THE FINAL REPORT HEALTH SELECT COMMITTEE HERE
This petition update was posted on 12th August 2023
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In May 2020, TANZi’s oral submission to the Health Select Committee was well received
Belinda, Ann, Louise and Isabel address the Health Select Committee (May 2021) on Facebook.
Click here and start the video at 1hr, 7mins ( 5 May 2021): https://www.facebook.com/watch/live/?ref=watch_permalink&v=4226878167331840
OR, click here to read the transcript of the hearing called the HANSARD REPORT.
Photo provided by: Copyright @ Thyroid Patients Canada (2022).
This petition update was posted on 12th August 2023
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In April 2020, TANZi delivered a written submission to parliament
In 2020, Louisa Wall, Chair Health Select Committee invited TANZi to provide a written submission to our petition, so the committee could understand why the petition was necessary. Our submission comprised two documents which have been split by Parliament across 4 hyperlinks on their website:
- Hyperlinks 1 and 2 below – are part 1 and 2 of the written submission, and
- Hyperlinks 3 and 4 below – is an appendix of supporting clinical studies.
Document 1 – written submission part 1, pages 1 – 92:
Document 2 – written submission part 2, pages 91 – 175:
Document 3 – Abstracts of clinical studies supporting our petition part 1, pages 1 – 90:
Document 4 – Abstracts of clinical studies supporting our petition part 2, pages 91 – 168:
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TANZi’s petition was delivered to parliament in March 2020
12 March, 2020, thanks to many, many hours of invaluable work by Belinda Hodson, our petition made it to Parliament. Belinda and lsabel Bennett meet with Greg O'Connor, Labour MP for Ohariu and Marja Lubeck, a Labour list MP.
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From early 2019 to March 2020, TANZi ran a public petition gathering 3000+ signatures
Here is the photo andwording from our 2019-2020 petition:
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“Help NZ Thyroid Patients Get Treatment That Works
We call upon the NZ Parliament to hold an official Inquiry into the diagnosis and treatment of patients with signs and symptoms of thyroid disease. We ask the Inquiry to consider:
- increased access to the full range of thyroid blood tests;
- funding for treatments containing the active thyroid hormone T3;
- to provide up to date education for all doctors and endocrinologists on thyroid diagnosis and treatment; and
- to promote positive open dialogue between doctors and patients.
Why is this important?
Thyroid disease is more common than diabetes and heart disease. The World Health Organisation puts the world’s population of diagnosed thyroid patients at >750 million. New Zealand’s diagnosed population is >146,233. Many more are misdiagnosed or experience mismanaged care. Common symptoms include debilitating unexplained fatigue, unexpected weight gain/loss, depression, miscarriage, cold/heat intolerance and brain fog. Left untreated thyroid disease influences the onset of other diseases such as cancer, heart disease, and dementia; and in some cases early death.
In the 1940s and 1950s doctors and endocrinologists diagnosed on signs and symptoms, prescribing treatments that worked. Then came the arrival of the TSH blood test and a synthetic drug called Levothyroxine which changed the way many doctors and endocrinologists diagnose and treat patients. As a result there is a large number of patients for whom these diagnostic and treatment approaches do not work. For example, all too often:
- Doctors and endocrinologists miss altogether or misdiagnose thyroid disease in patients because they don’t recognise the signs and symptoms. Patients are often tested unnecessarily for other illnesses imposing cost on them and District Health Boards.
- Patients who are prescribed Levothyroxine often experience ongoing symptoms. Alternative thyroid treatments containing a thyroid hormone called T3 work better for many of these patients. Most are never offered this treatment even though it is available, safe and effective.
It is now difficult to find a NZ doctor or endocrinologist with the right knowledge to help thyroid patients. Those NZ doctors who are successfully diagnosing and treating thyroid disease need greater support; and the other doctors and endocrinologists need further education.”
By signing this petition you can help us change this. Each signature represents a patient, or a person who loves a patient who has been misdiagnosed, mistreated or dismissed by their endocrinologist or doctor.”
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From 2015 to 2019, TANZi wrote to NZ’s medical institutions to raise awareness of issues for patients
Despite numerous attempts to get engagement from a number of medical institutions, no endocrinologists would meet with us to discuss our concerns.
TANZi also lodged a funding application with PHARMAC for medications containing the active thyroid hormone T3. This is needed for the 10,000+ NZ patients with hypothyroidism who remain symptomatic on the standard treatment called Levothyroxine. Despite sending PHARMAC a very long list of clinical publications and international guidelines recommending the prescribing of T3 medications for these patients, PHARMAC have yet to fund any form of T3.
In 2018, TANZi decided to take our concerns to parliament and found an MP who would support us to do this.
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References
Thyroid Patients Canada (2022). Thyroid Patients Canada website. Retrieved on 19th August 2023 from: https://thyroidpatients.ca/2021/09/05/new-zealand-thyroid-patients-petition/?fbclid=IwAR0d9to3w_sug9bRK_wMQ9h7eVnMZAGfJMNP4cmBiYVfH6kigTKgMkF8y0Q
About TANZI
Thyroid Association of New Zealand is a patient-to-patient support group, started in July 2008. We are a voluntary organisation, whose founding members came together when Glaxo Smith Kline changed their Eltroxin formulation, causing adverse reactions among users. For more information about the thyroid or help finding a doctor who can help, visit us at: http://www.thyroidnz.org or Facebook at: https://www.facebook.com/groups/thyroidnz/.