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Press

04 Dec 2016


Joint statement from the Society for Endocrinology and the Pituitary Foundation on PrEP funding decision


The Society for Endocrinology and Pituitary Foundation welcome the news that NHS England will routinely fund three critically important endocrine drugs: 

  • Pegvisomant, the third line treatment for acromegaly
  • Pasireotide for Cushing’s Disease
  • Tolvaptan for hyponatraemia secondary to the Syndrome of Inappropriate Antidiuretic Hormone (SIADH) for patients who require cancer chemotherapy

Between 2,500 and 8,300 UK patients suffer from acromegaly, a condition caused by excess levels of growth hormone. Symptoms include joint pain, protruding hands and jaw, fatigue, headaches and in children and teenagers excessive height (gigantism).

Continuing to prescribe pegvisomant will ensure patients have access to an important medication that directly blocks the effects of growth hormone and improves symptoms.

Professor John Wass, spokesperson for the Society for Endocrinology said:

“Pegvisomant is an important medical treatment for acromegaly, a disease which greatly shortens life expectancy and has significant morbidities if inadequately treated. We are very pleased that pegvisomant and two other critical endocrine drugs can now be routinely prescribed”.

A campaign spokesperson for the Pituitary Foundation added: “We’re delighted to learn that NHS England will routinely commission pegvisomant and pasireotide.

“These treatments give hope to those patients who are unable to control their condition through any other means. Uncontrollable acromegaly has a high mortality rate and Pegvisomant users we spoke to reported significant improvements to their health and wellbeing and energy levels, with some describing the drug as ‘life changing’,” they said.

Cushing's syndrome is a collection of symptoms caused by very high levels of a hormone called cortisol in the body. Pasireotide is an important new medicine that gives patients for whom surgery is not a viable option an alternative treatment.


Notes for editors

 

The Society for Endocrinology is a UK-based membership organisation representing a global community of scientists, clinicians and nurses who work with hormones. Together we aim to improve public health by advancing endocrine education and research, and engaging wider audiences with the science of hormones www.endocrinology.org

The Pituitary Foundation helps the UK’s 70,000 pituitary patients through helplines, publications and a national network of support groups. Conditions of the pituitary gland like acromegaly, Cushing's, prolactinoma, diabetes insipidus and hypopituitarism can be hidden yet debilitating. The Foundation has grown over 20 years to become a vital source of expert information, awareness campaigning and support for people with these rare illnesses.

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