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).

Our first step is to test the waters with this Change.org petition!

Currently, the majority of thyroid diseases other than thyroid cancer are not included in Canada's official list of chronic diseases and are not being monitored.  

In other countries that track prevalence rates of thyroid diseases, the combined rate is between 5 and 10% of the population (Reyes Domingo et al, 2019; Crafa et al, 2021).

Several groups of thyroid diseases have much higher prevalence rates among women and older people.

• Globally, rates of autoimmune hypothyroidism are 4 to 10 times higher in women than men, reaching up to 15% of women in countries like Italy (Crafa et al), and peak incidence occurs between the ages of 30 and 50 (Chiovato et al, 2019).
• Diseases involving thyroid dysfunction (hyper- and hypothyroidism) affect up to 25% of persons 65 and older (Diab et al, 2019).

Research outside of Canada reveals that thyroid diseases are a significant comorbidity in several other major chronic diseases, such as diabetes, kidney disease, and heart failure (Khassawneh et al, 2020; Anderson et al, 2020). Despite this fact, Canada’s government publications on the major chronic diseases cannot give statistics on thyroid disease comorbidity rates.

Prevalence rates across the globe or another country can’t tell Canada’s story. Canada should not have to estimate its rates for Nova Scotia or Nunavut by extrapolating from international rates and fragmentary surveys. 

What is the purpose of chronic disease surveillance?  

In short, "to support public health action."

According to the Government's website, "The CCDSS enhances the scope of data on chronic diseases in Canada and supports the planning of health resources and the development of health policies and programs." 

It fits within the broader portfolio of The Public Health Agency of Canada, which includes:

• "preventing disease and injuries,
• responding to public health threats,
• promoting good physical and mental health, and
• providing information to support informed decision making." (PHAC website)

The social burden of thyroid diseases include infertility and pregnancy complications, delayed childhood development, decreased quality of life, and economic impacts (Chiovato et al, 2019).

Wise action begins with data collection. We could begin to reduce the financial cost and human burden of suffering from chronic disease in Canada by adding thyroid disease to the CCDSS.

How does Canada monitor chronic diseases?

Many chronic diseases are tracked by the Canadian Chronic Disease Surveillance System (CCDSS) by using diagnostic codes based on the International Classification of Diseases (ICD).

The CCDSS "collects data on all residents who are eligible for provincial or territorial health insurance. It can generate national estimates and trends over time for over 20 chronic diseases and conditions, and other selected health outcomes." (Government of Canada, n.d.)

On the website of Canada's Public Health Agency of Canada, the CCDSS fact sheet shows that our government's CCDSS monitors the 20 diseases in six categories:

• 4 Cardiovascular diseases,
• 2 Chronic respiratory diseases,
• 3 Mental illnesses,
• Diabetes,
• 6 Muscoskeletal disorders, and
• 4 Neurological conditions.

In addition to age, sex, province, and disease status data, CCDSS collects useful data regarding each disease:

• Incidence and prevalence;
• All-cause mortality (death due to any cause);
• Health care utilization, such as hospitalizations and physician visits; and
• Multimorbidity and comorbidity (having multiple chronic diseases).

If these factors were tracked for thyroid diseases, it could better inform healthy discussions of the net cost-benefit ratio of screening for, treating, and monitoring thyroid diseases in Canada.

Most thyroid diseases are not included.

Thyroid cancers are monitored through different systems because it is a type of cancer and it is the only subcategory of thyroid disease that our government does monitor.

However, after a thyroidectomy for thyroid cancer, people living with the resultant hypothyroidism are not under surveillance. As the rates of thyroid cancer climbs, so will the rates of lifelong chronic non-autoimmune hypothyroidism.

The Government of Canada does not monitor any of the following thyroid conditions:

• Hypothyroidism, autoimmune and non-autoimmune
• Hyperthyroidism, autoimmune and non-autoimmune
• Congenital thyroid disorders,
• Pituitary TSH secretion disorders, including central hypothyroidism
• Toxic and nontoxic nodules and goiter
• Infectious and bacterial thyroiditis
• "Euthyroid sick syndrome," an illness-induced secondary thyroid hormone metabolism dysregulation, also called "low T3 syndrome" and "nonthyroidal illness syndrome" (NTIS).

All of the above have ICD-11 diagnostic codes that enable them to be monitored through the CCDSS.

Naturally, thyroid belongs in an “endocrine disorders” category alongside its sister disease, which currently stands alone.

• Diabetes and thyroid disease are both endocrine disorders with metabolic manifestations in many organs and tissues.
• Diabetes and thyroid diseases both have significant subpopulations with glandular autoimmunity.
• In pregnancy, we have both gestational diabetes and gestational thyroid disease complications, but thyroid disease incidence spills over into the post-partum phase.
• Research informs us that “thyroid disorders remain the most frequent autoimmune disorders associated with type 1 diabetes” (Hage et al, 2011)
• Both diagnosed and undiagnosed thyroid dysfunction is also highly associated with type 2 diabetes (Khassawneh et al, 2020).

But Canadian statistics on diabetes do not address this significant overlap between the two most prevalent endocrine disorders. That’s because one is on the list and the other is not.

As mentioned above, global prevalence rates are estimated at 5-10% for thyroid diseases (excluding cancer and isolated thyroid nodules). In contrast, according to the CCDSS data tool, as of 2017, these were some of the lower incidence rates of conditions on Canada’s list:

• acute myocardial infarction (<3%)
• stroke (<3%),
• rheumatoid arthritis (<1.5%)
• gout (<1.5%),
• epilepsy (<1%)
• schizophrenia (<1%),
• Parkinsonism (<0.6%), and
• multiple sclerosis (<0.3%)

All-cause “hypothyroidism” alone has high prevalence in the U.S., where it “affects an estimated 4% of women aged 18–24 years and 21% of women older than 74 years; respective values in men are 3% and 16%” (Chiovato et al, 2019). Rates of diseases so prevalent in women past childbearing age should be of concern to Canadians, as they are our mothers, grandmothers, professionals, and community leaders.

How do thyroid diseases and thyroid hormones affect public health?

Thyroid hormones have powerful effects on all organs and tissues in the human body. Scientists have not yet identified a tissue or organ that lacks thyroid hormone transporters or thyroid hormone receptors.

Most physicians should already be aware that thyroid disorders may increase risk in osteoporosis, heart diseases, mental health disorders, infertility, sexual health, and pregnancy. But those conditions are tip of an iceberg.

Thyroid autoimmunity is the most prevalent among autoimmune diseases, surpassing type 1 diabetes (Caturegli et al, 2013). It has a strong genetic component, but we can mitigate its harm. A correct and timely autoimmune thyroid diagnosis in one family member can assist in the correct and timely diagnosis of another family member. A strong family history of thyroid autoimmunity may justify screening before pregnancy and appropriate vigilance regarding congenital or childhood thyroid disorders.

When thyroid diseases are undiagnosed or poorly managed, it increases risk to human health in many chronic diseases and acute illnesses. Conversely, illnesses can be secondary causes of dysregulation in thyroid hormone secretion and metabolism in people with or without a thyroid disease diagnosis.

Read the longer version of this petition on our website (link below) to find out how recent research has discovered high prevalence rates of chronic diseases and COVID-19 with isolated low T3 and thyroid diseases.

Are thyroid diseases “easy” to manage and “cure”?

It’s a common belief that thyroid diseases are “easy” to diagnose and manage. But like type 1 diabetes and rheumatoid arthritis, many types of thyroid diseases are never truly “cured,” and they are not always easy to manage.

As researchers have found in other countries like Korea, treated hypothyroidism has a significant influence on comorbidity rates and death rates, elevating risk to human health in all age and sex groups (Sohn et al, 2021).

Thyroid diseases like thyroid cancer, multinodular goiter, and Graves’ hyperthyroidism are often treated by replacing them with another chronic disease, hypothyroidism, and that’s not a true cure.

Read the extended version of this petition on our website to discover some of the variables that can make thyroid therapy challenging.

End Canada’s thyroid ignorance; begin surveillance.

In conclusion, thyroid diseases represent a significant disease burden and cost to our society and its health care systems. We can’t fathom just how deeply thyroid diseases affect our communities and how well we are managing them if we don’t perform basic surveillance.

Canadians already living with thyroid diseases, regardless of age, sex, and healthcare region, deserve the best quality of life possible. 

Fortunately, many risk factors of thyroid disease are what the Public Health Agency of Canada can classify as “modifiable,” such as the risks of substitution of iodized salt with sea salt.

Collecting population data is a foundational way to support researchers, clinicians, health care administrators, and the public at large.

Public health programs and heightened medical awareness can make a difference.

* * * 

See the extended petition on our website, including the reference list.
https://thyroidpatients.ca/2022/02/25/petition-include-thyroid-ccdss/ 

Note that Change dot org will ask supporters for a donation. This boosts the petition's distribution within the Change dot org community. It is part of their business model.  

Please consider donating directly to our patient-led nonprofit organization. Help us make Thyroid Patients Canada sustainable so we can do more! 
https://thyroidpatients.ca/donate-and-support-thyroid-patients-canada/