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.

Hypothyroidism is one of the commonest conditions in the UK. However 10-15% of patients despite levothyroxine treatment have persistent ill health, although some find their symptoms improve dramatically with liothyronine (another thyroid hormone). Despite being a common problem hypothyroidism has not attracted research funding and there have been no new treatments in decades. More funding for research and patient support might revolutionise the treatment and lives of many patients.

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.