Hipoparathyroidism is a rare disease, with 22 cases per 100,000 inhabitants, chronic and very limiting in which the parathyroid glands do not produce enough parathyroid hormone (PTH). Between 70 and 80 percent of cases are due to thyroid surgery, either for benign nodules or cancer, as stated by AECAT.
Therefore, on the occasion of World Hypoparathyroidism Day, commemorated this Sunday, the association has demanded the creation of units with expert surgeons and adequate technology to help prevent damage to the parathyroid glands; as well as the inclusion of this condition in medical training and the dissemination of clear protocols for its treatment, along with the commitment to guarantee specialized follow-up for patients after surgery.
AECAT has launched the campaign ‘Hipoparathyroidism: an invisible burden’, with the support of Alexion and Ascendis Pharma, to raise awareness about the disease and the demands of patients. On this occasion, the campaign is marked by a hopeful moment for those affected thanks to PTH replacement treatments, which represent the beginning of a new stage after years without therapeutic options beyond calcium and vitamin D supplements.
As explained, Spain approved one of these innovative treatments a few months ago and it is expected that more alternatives will soon be available. However, there is uncertainty about the real conditions of access, prescription criteria, and territorial equity. In this sense, it has been demanded that the evaluation of these therapies not be limited only to pharmaceutical cost.
«It is essential that health authorities, and especially the Ministry of Health, consider access to therapeutic innovation as a strategic investment in public health: it improves the quality of life, reduces healthcare pressure, and avoids costs derived from clinical deterioration,» said the president of AECAT, Arantxa Sáez.
Finally, the association has advocated for the recognition of the real cost of this disease, not only in clinical terms but also emotional, work-related, and economic, due to loss of productivity, functional limitations, frequent medical visits, and profound impact on daily life.
In this line, they have called for listening to the patient, taking their opinion into account in decisions, and promoting studies on quality of life, disease progression, and innovative treatments to improve the well-being of those affected.