NICE recommends Metreleptin be made available for Lipodystrophy patients

NICE recommends Metreleptin be made available for Lipodystrophy patients

Posted Wednesday 20th Jan 2021 News

We are delighted to announce that after 3 years of hard work and dedication, NICE, the National Institute for Health and Care Excellence has recommended that Metreleptin be made available for all people with Lipodystrophy who fit the treatment guidelines. This is a major success for the Lipodystrophy community. Metreleptin saves lives and is currently the only Lipodystrophy specific drug available.

What is Metreleptin and what does it do?

Metreleptin is a hormone replacement therapy. It replaces the hormone leptin, which can be deficient or absent in people with Lipodystrophy. Metreleptin can help Lipodystrophy patients by:

  • Improving diabetes control
  • Reduce fat stored in organs, such as the liver
  • Reduce triglyceride levels
  • Lessen the severity of insulin resistance
  • Improve extreme hunger levels
  • Regain control over severe illness and organ damage. Metreleptin saves lives.

What is Leptin, and why can Lipodystrophy cause a deficiency?

Leptin is a hormone that is released from fat cells in our adipose tissues. It’s prime focus is to maintain our body weight, by helping to regulate food intake and energy expenditure, but that’s not it’s only purpose. Leptin can also help to regulate our immune response, facilitate lipid uptake, increase our glucose uptake in our skeletal muscles, prevent lipotoxicity in organs such as our liver by increasing lipid uptake in adipose tissue, regulate gonadotropins (sex hormones) and regulate bone remodelling.

As leptin is released from fat cells, the amount of leptin we have is connected to the amount of body fat we have. If we gain weight, our leptin levels will increase. If we lose weight, our leptin levels will decrease. Patients with Lipodystrophy typically have a complete or partial loss of adipose tissue, thus resulting in low to absent levels of leptin.

How do I know if I fit the treatment guidelines for Metreleptin?

In order to qualify for Metreleptin treatment, you need to meet the following guidelines:

We would like to send heart felt thanks to everyone who has helped make Metreleptin a reality for UK Lipodystrophy patients. Thank you to NICE, the National Severe Insulin Resistance Service at Addenbrookes hospital in Cambridge, Amryt pharma and previously Aegerion for working tirelessly and believing that our rare community is worth fighting for.



Created by: Rebecca Sanders

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