Collected Responses to Give more funding for thyroid research and patients after price hike Petition

[helvella]

The petition launched by Pete Taylor has received a response, and there have now been numerous posts referencing that. And replies on each of them.

This it is getting spread and some will be missed, there will be much repetition, etc.

For that reason, this new post is intended to collect everything together.

To emphasise - no-one has done anything wrong. It is just how things happen.

And very important: Please take this as encouragement to keep going. Keep signing. Keep encouraging others to do so. Keep contacting relevant people and bodies - e.g. MPs.

The petition page including the response:

Petition Give more funding for thyroid research and patients after price hike

A fine of £84 million has been levied for the price hike in liothyronine (T3), which had a significant impact on patients. We request that an amount equivalent to a proportion of the fine (1-5%) is made available for thyroid research and support for patients with hypothyroidism.

10,976 signatures

100,000

Government responded

This response was given on 25 January 2024

The Government is funding a broad range of research on thyroid disorders through its funding organisations and is facilitating patient support through locally commissioned services.

The Government is aware of and sympathises with the hardships faced by those who experience severe symptoms from conditions such as hypothyroidism and other thyroid disorders. The Department of Health and Social Care takes excessive drug pricing very seriously. It is for the Competition and Markets Authority (CMA) to investigate concerns about abuses of competition law. Where companies are found by the CMA to be in breach of the legislation, the Department considers seeking damages. People with myxoedema (that is, hypothyroidism requiring thyroid hormone replacement) can apply for a medical exemption certificate which provides all their prescriptions free of charge.

The Government funds research on health and social care through the National Institute for Health Research (NIHR). NIHR funds and supports research into hyperthyroidism through its research infrastructure and research programmes. This includes research on the broad range of conditions that may affect the function of the thyroid gland, including hypo- and hyper-thyroidism, thyroid cancer and thyroid removal following surgery.

A current example of NIHR research is a study investigating the risks of developing obesity, cardio-metabolic conditions and risk of death in a cohort of 25,000 newly diagnosed patients with hyperthyroidism, and to compare the risks of these outcomes between all three modalities used to treat hyperthyroidism.

NIHR research funding applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. It is not usual practice for the NIHR to ring fence funds for particular topics or conditions.

The NIHR welcomes funding applications for research into any aspect of human health including hypothyroidism. Additionally, the NIHR engages and involves patients, carers and the public in all the processes by which research is identified, prioritised, designed, conducted, evaluated and disseminated to improve the reach, quality and impact of the funded research.

Health services for people with hypothyroidism are commissioned locally by integrated care boards (ICBs), which are best placed to make decisions regarding the provision of health services to their local population subject to local prioritisation and funding. In doing so, we expect ICBs to have due regard to relevant National Institute for Health and Care Excellence and other guidance when commissioning services.

Department of Health and Social Care

Created by Peter Taylor

Deadline 4 March 2024

petition.parliament.uk/peti...

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ukgov petition response re. thyroid research

joydot

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DandyButch

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Government reaction to petition

FrostyKnickers

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Milkyway88

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If I have missed any, please let me know and I will add them.

[joydot]

😭😭😭

[arTistapple]

Thanks helvella I liked your own replies with the notes in your previous post. They are ‘collectively’ brilliant although you could not have had too much time to respond. Can you transfer them to this post so everyone can see them?

whoops wrong petition. I meant comments on the Peter Taylor petition.

[helvella in reply to arTistapple]

Did you mean these?

Full response with some quick comments intertwined:

The Government has responded to the petition you signed – “Give more funding for thyroid research and patients after price hike”.

Government responded:

The Government is funding a broad range of research on thyroid disorders through its funding organisations and is facilitating patient support through locally commissioned services.

The Government is aware of and sympathises with the hardships faced by those who experience severe symptoms from conditions such as hypothyroidism and other thyroid disorders. The Department of Health and Social Care takes excessive drug pricing very seriously. It is for the Competition and Markets Authority (CMA) to investigate concerns about abuses of competition law. Where companies are found by the CMA to be in breach of the legislation, the Department considers seeking damages.

❖ Did they not READ the petition which is a direct reference to the CMA breach which has been proved?

People with myxoedema (that is, hypothyroidism requiring thyroid hormone replacement) can apply for a medical exemption certificate which provides all their prescriptions free of charge.

❖ Do they not realise this applies only in England?

❖ And what sort of a reply is that? The petition was not about what individual patients have too pay for medicines supplied through the NHS.

The Government funds research on health and social care through the National Institute for Health Research (NIHR). NIHR funds and supports research into hyperthyroidism through its research infrastructure and research programmes. This includes research on the broad range of conditions that may affect the function of the thyroid gland, including hypo- and hyper-thyroidism, thyroid cancer and thyroid removal following surgery.

❖ No-one says there isn’t any research at all.

A current example of NIHR research is a study investigating the risks of developing obesity, cardio-metabolic conditions and risk of death in a cohort of 25,000 newly diagnosed patients with hyperthyroidism, and to compare the risks of these outcomes between all three modalities used to treat hyperthyroidism.

❖ The petition expressly referred to hypothyroidism. So why all this about hyperthyroidism?

NIHR research funding applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. It is not usual practice for the NIHR to ring fence funds for particular topics or conditions.

❖ Those who signed are also aware it is not usual to see the sole supplier of a drug increase prices so dramatically and then get found guilty by the CMA.

“Not usual” is NOT a reasonable or rational argument in these unusual circumstances.

The NIHR welcomes funding applications for research into any aspect of human health including hypothyroidism. Additionally, the NIHR engages and involves patients, carers and the public in all the processes by which research is identified, prioritised, designed, conducted, evaluated and disseminated to improve the reach, quality and impact of the funded research.

❖ The petition was created by a senior consultant and researcher who is well aware of how to apply. This is patronising drivel.

Health services for people with hypothyroidism are commissioned locally by integrated care boards (ICBs), which are best placed to make decisions regarding the provision of health services to their local population subject to local prioritisation and funding. In doing so, we expect ICBs to have due regard to relevant National Institute for Health and Care Excellence and other guidance when commissioning services.

Department of Health and Social Care

Nothing in the response appears to see that the argument is so many patients suffered, there were offences, and some degree of restitution to those who suffered appears reasonable. All the money going into general funds means there is absolutely no restitutive component whatsoever. Yet that is a fundamental basis of the legal system.

The response is about as poor, showing lack of critical thinking, actually, any thinking, other than to turn it down without using the language of politicians' WhatsApp.

[arTistapple in reply to helvella]

Yes! They are really good points and hopefully more people will see them now.

[Charlie-Farley in reply to helvella]

It is answering questions not asked.

Interestingly this study was cited in a letter I received (having flagged with a local MP).

A current example of NIHR research is a study investigating the risks of developing obesity, cardio-metabolic conditions and risk of death in a cohort of 25,000 newly diagnosed patients with hyperthyroidism, and to compare the risks of these outcomes between all three modalities used to treat hyperthyroidism.

I was surprised that people with hyperthyroidism were battling with obesity. Have you been able to track down any information on the research currently underway?

I’m trying to find mention on internet but I haven’t discovered anything yet.

Except the genes study - I’m thinking this might be where the mistake stems from.

leicesterbrc.nihr.ac.uk/pio...

[helvella]

The reference to NIHR research finished in 2022!

Weight changes, cardio-metabolic risks and mortality in patients with hyperthyroidism; all-cohort natural history and comparison of treatment effects in a CPRD-HES linked study

Plain English Summary:

Patients with an overactive thyroid gland (hyperthyroidism) usually lose a significant amount of weight. Leaving the condition untreated can lead to serious diseases including irregular heartbeat (atrial fibrillation) and stroke. At onset of the disease, patients most commonly lose weight and they gain considerable amounts of weight during the treatment. Whether this weight gain represents simple return to the weight before the illness or whether it continues, thereby resulting in excess weight (weight overshoot), is not clear. These weight changes may put patients at increased risk of becoming overweight or developing obesity which in turn increases the risk of developing diabetes and heart disease. The current treatments for hyperthyroidism include either surgery, radioiodine or medication. Recent studies showed that there are significant differences in mortality between those treatments. However, not much is known about any other risks, despite the common use of all three treatments. We recently held a patient discussion evening and patients told us that weight gain and associated cardio-metabolic risks were important issues as part of decision-making in which treatment to choose. They were disappointed that there was not much information available and that there was no ongoing research in that field. They felt strongly about the need to warn patients of potential risk of excessive weight gain, if such exists, and about the need to prevent the excess weight gain that many of them had experienced when they were treated. In this research proposal, we aim: (i) to establish if patients gain weight during or after the treatment for hyperthyroidism and compare their post-treatment weight to the average sex and age comparable weight in England; (ii) to compare which of the three treatments available is linked to the most weight gain; (iii) to establish if after treatment patients overshoot their weight before onset of hyperthyroidism; (iv) to see which of the three treatments is associated with the biggest risk of a patient getting diabetes, heart disease or death. We will achieve these aims by analysing data from a large national general practise (GP) database called the Clinical Practice Research Datalink (CPRD). The database includes information on over 10% of UK GP practices. We would like to link information on individual patients to their hospital records. We will identify patients who have been treated for hyperthyroidism from this large database and look at the therapy they received. Based on the results of this work we aim to produce high quality information for doctors and patients about the risks of different treatment options. This will mean patients can make more informed choices about their treatment. If our study shows excessive weight gain following treatment for hyperthyroidism, we will develop a plan to prevent this.

Start Date:

February 2021

End Date:

August 2022

fundingawards.nihr.ac.uk/aw...

That is apparently the ONLY recent thyroid research through NIHR. So the reply was a lie.

[Charlie-Farley in reply to helvella]

AH! So not current at all......... Worthy of some feedback! I hate playing catch up - could get worse this month - upgrades to utilities will lead to power cuts! I'll be chasing my tail by March! 😜

[helvella]

In case you have not noticed, there is a Feedback option at the bottom of the petition page.

Screenshot of feedback option

[RedApple in reply to helvella]

In case you are puzzled, the feedback link that helvella refers to, is at the very bottom of the petition page, and is a general feedback form (i.e. does not specifically relate to this or any other petition). petition.parliament.uk/peti...

feedback link

[FrostyKnickers]

The amount of cr@p we have to put up with from those idiots is both demoralising, patronising and annoying. They don't even know the difference between hypo and hyper and clearly couldn't be bothered to research it!I am reasonably healthy and take no meds apart from my T3 but why should I have to buy my own meds when I'm entitled to free prescriptions because of my disease and my age? I spend a fortune on vitamin supplements too but obviously wouldn't expect the NHS to stump up for them too.

[Zephyrbear]

Who wrote this??? How many times has hypothyroidism ever been referred to as “myxoedema”? I have never been diagnosed with it, only “underactive thyroid”, “hypothyroid” or “Hashimoto’s hypothyroidism”… I’ve never even been told I had “Ord’s” since I never had a goitre, but it was never referred to as myxoedema! I’m surprised they didn’t go for “dropsy”!

[helvella in reply to Zephyrbear]

And if you take myxoedema literally as the oedema cause by hypothyroidism, then that should resolve with adequate treatment. At which point the exemption would lapse! Leaving someone to bounce between having myxoedema, getting exemption, not having myxoedema, losing exemption (and medicine if they cannot afford it) and repeat.

Myxoedema is a very poor choice of wording to mean hypothyroidism.

[RedApple in reply to Zephyrbear]

Ditto! My GP did say it was autoimmune because I had jaw dropping levels of antibodies.

[crabapple in reply to Zephyrbear]

I seem to recall that it is the wording on the exemption application. I had ticked that box but since I'd never heard of myxoedem had to double check with receptionist that it was the correct box.

[helvella in reply to crabapple]

It is that wording - you are right.

[TaraJR]

I'd urge everyone to use their feedback form.

I've also found this - the Petitions Committee members...

Screenshot of text

[helvella in reply to TaraJR]

The feedback isn't likely to be directly helpful. They will reply saying:

The response to this petition was provided by the Government, and specifically the Department of Health and Social Care.

I work for the House of Commons Petitions Committee as part of a small team who check petitions and oversee the petitions website.

The Petitions Committee will look at this petition and the Government's response at its next meeting on Tuesday 30th January.

All of the decisions taken by the Committee are published on our website committees.parliament.uk/co... shortly after the meeting.

If you would like to share your views on the Government's response you can find contact details for the Department of Health and Social Care on the .gov.uk website.

Regards,

[ redacted name ]

The Petitions Team

Petitions Committee

[helvella]

Unfortunately not an encouraging response from government. I have had the toughest week of my adult life so I need a bit of time to reflect on this setback. Not giving up though. Thanks to all who signed and supported. Campaign won’t end here I promise.

twitter.com/DrPeteTaylor/st...

Screenshot from Twitter of Pete Taylor reaction to the petition response

[TaraJR in reply to helvella]

Yes I saw that. So sorry for Pete - it sounds a really bad time for him. Patient groups will be behind him when he's ready to do more.

[helvella]

On another petition, the Petitions Committee has requested a revised response from the government.

I hope that this will be done on this petition.

Other parliamentary business

Petitions Committee requests a revised response from the Government

The Petitions Committee (the group of MPs who oversee the petitions system) have considered the Government’s response to this petition. They felt that the response did not directly address the request of petition and have therefore written back to the Government to ask them to provide a revised response.

When the Committee have received a revised response from the Government, this will be published on the website and you will receive an email. If you would not like to receive further updates about this petition, you can unsubscribe below.

petition.parliament.uk/peti...

I am am unclear as to how to express our views to the committee as we are usually expected to communicate through our own MPs. Will try to find out.

Screenshot of the other petition

[Musicmonkey]

I am disappointed but not surprised by the response to the petition. Those responsible for the reply have shown how inept they are by the irrelevance of their reasoning. This is what thyroid patients are dealing with day to day. When will it change?

[helvella in reply to Musicmonkey]

Very disappointed - it is truly dreadful.

[1tuppence in reply to helvella]

I just wonder if a health/news reporter might find the ineptitude of the response interesting?

[helvella in reply to 1tuppence]

Might be worth a go. Obviously pretty much every journalist has an email address...

Time for everyone to get writing!