Petition update 01: Testimonials, and our petition in context

A few days ago, on March 25, we launched a public petition on a social media site and posted the research-based rationale on our website titled “Petition: Include thyroid disease in Canada’s chronic diseases list.”

At the time of posting, only 5 days later, we already have:

  • 272 Supporters
  • 108 Shares

If this rate keeps up, we might reach 5,400 in 100 days.

This global social media petition on such a big topic deserves much more support, but we’ve only just begun.

In this petition update, you’ll find:

  • A petition summary
  • Links
  • Testimonials: Some reasons given by supporters
  • Our petition in context
  • The challenges we face
  • The cost of a failed petition
  • What you can do.

A petition summary

This petition is the first step of a larger campaign vision for 2022 to build our capacity for advocacy.

We plan to petition the federal government’s ministers of health and the administrators of the Public Health Agency of Canada to add thyroid diseases to the list of chronic diseases within the “Canadian Chronic Diseases Surveillance System” (CCDSS).

Currently, only thyroid cancer is monitored through separate cancer monitoring programs beyond the CCDSS. Within that cancer-focused program, there is no recognition that their treatment often involves replacing one thyroid disease with another, severe hypothyroidism, and that treatment for that disease is not always as effective as treatment for the cancer.

Thyroid diseases are diverse. Although thyroid cancer rates are growing, it’s likely (based on non-Canadian statistics) that people with chronic hyper- and hypothyroidism from other causes (mostly autoimmune) far outnumber the people who are being treated for thyroid cancer. Central and congenital forms of hypothyroidism as well as multinodular goiter and toxic nodules are often left out because their diseases are in the statistical minority. But they share the same pharmaceutical treatments as people who are hypothyroid for other reasons. Some thyroid conditions at first diagnosed as transient or mild can end up becoming chronic and severe.

Because no one is tracking the vast majority of thyroid diseases Canada-wide, we lack information we need about our nation’s thyroid health.

  • No one knows the mortality or comorbidity statistics for Canadians with thyroid disease diagnoses.
  • We have no idea which thyroid diseases are more prevalent in certain provinces or territories, or whether it’s striking one particular demographic group more than another.
  • Thyroid hormone metabolism is a major factor in body temperature, but none knows how certain Canadian regions’ colder winters and hotter summers affect health outcomes in thyroid disease.

Until we track this disease and its outcomes, no one can adequately assess the true cost-benefit ratios of our country’s current provincial policies on thyroid testing and treatment.

See the extended rationale, with references: “Petition: Include thyroid disease in Canada’s chronic diseases list.”

The social media petition is located on Change.org at https://www.change.org/p/include-thyroid-diseases-in-canada-s-chronic-diseases-list

Change.org gives signers the option of publicly posting reasons for signing. Many of them include personal testimonials about how thyroid disease affects their lives. Some have said that it explains

  • the medical ignorance they have discovered, or
  • poor treatment they have suffered, or
  • the poor patient education they received at diagnosis regarding lifelong treatment, which is so often portrayed as easy.

In response to our petition, some patients with thyroid disease have been quite puzzled or pained to learn that their disease has not been under national surveillance. (Names of commenters can be found with the social media petition.)

“Thyroid disease, and its treatment, should be monitored. The success or otherwise of thyroid treatment should be tracked. No evidence is collected currently, so value for money is not assessed, and patients’ health is not known.”

  • “I have been chronically ill with thyroid cancer and hypothyroidism causing me to have to give up my career. It’s time to add hypo and hyperthyroidism to the list of chronic diseases.”
  • “Thyroid disease robbed me of my quality of life. I had to give up my job because of it. It should be monitored with other chronic diseases so that thyroid patients get the best treatment possible.”
  • “I have struggled for 50 plus years trying to manage my thyroid issues. Most doctors do not know very much about the thyroid, and due to provincial testing constraints my thyroid issues have not been managed properly.”
  • “They tell you treating thyroid cancer is easy, but they don’t tell you you’ll be treating it FOR LIFE.”

“I am unhappy that a disorder that affects mostly women is so ignored by the medical system and governmental agencies.”

  • “I am hyperthyroid. It has significantly changed my life. Medication for life.”
  • “My son, who just turned 19, has Hashimoto’s Disease. We found it looking for something else but it is a contributor to the state we are trying to explain and therefore hopefully be able to treat.”
  • “…I have Type 2 diabetes. No one mentioned Hashimoto’s as a possible comorbidity. Why not? Is it possible there are more contributory factors to mental health and physical health issues related to energy levels, fatigue, and depression? If thyroid conditions are not monitored in our population how will we know what Canadians need?”

“I have suffered for over 40yrs with Thyroid Hashimoto’s now at 60 my heart is affected my kidneys and many other organs.”

  • “I’m signing because thyroid disease is sadly overlooked as a major disability for those who are not adequately treated by use of a very small number of medications. Most doctors do not consider the severe adverse consequences to quality of life endured by many thyroid patients when treatment doesn’t solve the problem. More research needs to be done and a one size fits all mentality needs to be dispensed with in favour of a wellness mentality.”

Our petition in context

This is the first stage of a broader 2022 Thyroid Patients Canada campaign involving more than just a petition.

Our campaign this year is a larger-scale drive to build our capacity as a Canadian nonprofit that engages in evidence-based advocacy. We believe in the power of public science-based education, and the voice of science-informed thyroid patients, to improve thyroid diagnosis and therapy.

As part of this campaign, we are planning to launch a formal federal petition to the Public Health Agency of Canada (PHAC) to add thyroid disease to its list of 20 diseases under surveillance by the Canadian Chronic Disease Surveillance System (CCDSS).

One challenge we will face is that official petitions to the Canadian House of Commons are very constrained. We’ve been through this exercise before. When first filing a petition as a citizen, one requires a Member of Parliament to agree to present it. In addition, all petitions are

  • limited to a 250-word rationale,
  • limited to 3 months to gain signatures, and
  • limited to Canadian signatories only.

In contrast, social media petitions aren’t limited by word length or time, and citizens of any country can sign to show their moral support.

The downside is that social media petitions aren’t part of the official mechanism of government. They are more like open public surveys.

Therefore, we are using a social media petition to precede and parallel our formal petition. Before and during the course of the federal petition, this social media petition may help to further boost donations, momentum and awareness.

When we have enough finances and resources to support a well-rounded campaign that goes beyond a petition and website, we will be able to launch our petition to the Minister of Health and the administrators of the Public Health Agency, listed on the Government of Canada’s PHAC website.

As we launch the official petition, we will announce that and link it to our social media petition so that Canadians can be encouraged to sign.

The challenges we face

We know it might not be easy to raise the profile of thyroid diseases as a public health issue in Canada.

There is a longstanding precedent of ignorance. Few countries track thyroid diseases at a national level. Why? Let’s brainstorm.

Who has benefitted, and who really continues to benefit from thyroid disease remaining off the list, while many diseases with far lower prevalence rates are being monitored? Who who suffers the least from ignorance of population-wide mortality rates and comorbidity rates during thyroid therapy?

  • Some endocrinologists may have a professional stake in reassuring the public and patients that they have thyroid disease very much under control, and that thyroid treatment is simple and easy.
  • Several other diseases bask in almost all of the public attention and professional expertise. Diabetes retains the status of an unresolved public health problem. Many endocrinologists specialize in diabetes, but few endocrinologists specialize in thyroid diseases other than thyroid cancer.
  • Some health care system administrators might be hesitant to collect evidence about thyroid diseases. Given the climate of worry about over-testing and over-treatment of thyroid disease, some might think that maintaining ignorance is cheaper than gathering knowledge.
  • On the international scene, even the World Health Organization rarely mentions thyroid disease as a global health issue in its “non-communicable disease” category. Based on that precedent, many nations may feel they can get away with ignoring it too.
  • Pharmaceutical companies may feel content with the marketing of prescriptions, given the large number of prescriptions issued and the lifelong duration of many treatments. It seems they have largely shifted their attention toward other therapies that are more lucrative, such as bioidenticals like Humira, which are being prescribed for many other diseases under surveillance.

The cost of a failed petition

If thyroid patients’ and citizens’ voices, and the voice of scientists and concerned physicians, can’t speak loud enough, what will happen?

  • Canadian policies for diagnosis and treatment of thyroid diseases will continue to be based on guesswork while looking at other countries’ statistics and challenges.
  • Canadian patients with thyroid diseases will continue to face a lack of accountability for the improvement of basic health outcomes like reduced mortality rates and comorbidity rates.
  • Canadians who struggle with the effectiveness of their thyroid treatment may continue to have their symptoms and health problems blamed on other diseases, or their gender, age, or lifestyle factors, especially when their TSH is “normalized.”

This uncollected data is an international loss. The rich data that such a large, diverse country like Canada can provide to thyroid scientists worldwide will never be collected. Thyroid patients in every nation are impoverished by each other nation’s choice to ignore the tracking of this disease.

What you can do

  1. Sign and share it with your friends and with health care oriented groups. Show how strongly you feel about this petition.
  2. Learn. Read and share the extended version of our petition rationale. Driving people to our website will help more learn from our blogs about thyroid science and our public education efforts.
  3. Consider regular donations to build our organizational capacity. We are a new, patient-led registered nonprofit that wants to do so much more than host and moderate a vibrant Facebook support group and a science-based website.
    • Note: Change.org will ask petition signers for donations, but donations to them do not come to us. Some of the money goes towards boosting the petition within the Change.org network. Some goes toward funding Change.org itself — it is part of their business model. If you want to support us directly, please direct your dollars to us.

Sincerely,

Tania S. Smith, Ph.D,
President of Thyroid Patients Canada

Thyroid patient and thyroid science analyst
(Learn more about Tania)



Categories: Petitions

2 replies

  1. I would gladly sign the petition, but I am an American not Canadian. I recently found out that I have an atrofied thyroid. Over the years, I saw many endocrinologists and they all blew me off. No wonder my thyroid is in such bad shape now. Good luck with your petition. What an important cause it is!!

    • Thanks so much for your comment, Nora. My thyroid is also atrophied, as you may know from reading our website. I hope you’ve found our site informative on the topic of atrophic thyroiditis — I mention it often.

      Good news about this petition — As an American, YES you can sign this petition on Change.org because it’s a social-media international petition — it’s more like a survey asking the world, “who stands with us?” Later, when we launch the Govt of Canada petition, non-Canadians can’t sign that one.

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