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NICE decision on secondary hyperparathyroidism boosts patient choice

28 June 2017

Following input from Kidney Research UK’s patient survey, the National Institute for Health and Care Excellence (NICE) has today published guidance recommending etelcalcetide as an option for treating secondary hyperparathyroidism in adults with chronic kidney disease on haemodialysis.

The NICE guidance states:

“Etelcalcetide is recommended as an option for treating secondary hyperparathyroidism in adults with chronic kidney disease on haemodialysis, only if:

  • treatment with a calcimimetic is indicated but cinacalcet is not suitable and
  • the company provides etelcalcetide with the discount agreed in the patient access scheme.”

Hyperparathyroidism occurs in almost all patients on long-term dialysis. The parathyroid glands control the amount of calcium in our blood and bones by releasing parathyroid hormone (PTH) when blood calcium levels are too low.

When your kidney function declines, you are unable to get rid of excess phosphate. This builds up in your body and binds to calcium thereby lowering your calcium levels. Hyperparathyroidism occurs when the parathyroid glands are overproducing PTH in an attempt to increase the amount of calcium in the blood.

Symptoms include bone deformities, fractures, and swollen joints. In rare cases, when the condition goes untreated for too long, the gland remains overactive all the time. Calcification of blood vessels can occur as the phosphate and calcium bind together.

Treatments for secondary hyperparathyroidism include dietary modifications controlling the intake of phosphates, the use of tablets including phosphate binders and vitamin D supplements and surgery to remove the glands. Calcimimetics – drugs that mimic the action of calcium on tissues and help suppress the production of PTH – can also be an effective treatment.

A survey conducted by Kidney Research UK and completed by 185 patients on treatment preferences was used as evidence by the NICE appraisal committee.

“This is a great decision that has taken into account patient opinion and choice,” says Sarah Harwood, Patient Involvement Coordinator at Kidney Research UK. “We are proud to have provided patient representation during this consultation to highlight the patient experience and the importance of patients having choice in their treatment and would like to thank all the people who took part in our survey.”

Find out more information on hyperparathyroidism.

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