Growth hormone for adults living with PWS

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Growth hormone for adults living with PWS

Jan 25, 2024

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Introduction

Both children and adults in Australia that are living with PWS can apply for Government subsidised growth hormone (GH) under the Pharmaceutical Benefits Scheme (PBS). Conditions apply. Many individuals may have received GH treatment as children. For more information about GH treatment for children please read the article ‘Growth hormone therapy for children living with PWS’ on the PWSA website.

The following points are extracted from a blog by Foundation for Prader Willi Research:

  • Both children and adults who have been diagnosed with PWS will show symptoms of growth hormone deficiency including low muscle mass and poor cognitive development. Human growth hormone therapy for PWS is used in children and adults to improve physical, mental, and social development. Prescribing human growth hormone for adults with PWS has enabled many individuals to lead more fulfilling, better lives.
  • Decreased Cardiovascular Risk. Growth hormone deficiency has been shown to increase cardiovascular risk, especially in adults. Growth hormone therapy in adults increases the cardiac mass, while it decreases the size of the left heart ventricle of the PWS patient. Both result in an improved heart metabolism, and in an overall decreased cardiovascular risk.
  • Cognitive Benefits. Cognitive benefits of human growth hormone for PWS are evidenced in adults as well as children. Adults treated with human growth hormone show improvement in mental speed, flexibility and motor performance.
  • When going through growth hormone stimulation tests, adult patients are taken off their regular dosing for a month. The goal of the stimulation test is to measure the body’s natural ability to produce growth hormone. When the test is done, patients seem to be partially impaired in both physical and social skills.
  • When they’re put back on growth hormone therapy, there’s noticeable improvement in self-control, vitality and in an overall quality of life. Some patients have expressed that when resuming human growth hormone treatment, they just feel better, they feel normal again.
  • People using hGH therapy usually show an increase of around 10% of white brain matter over the course of a yearIn one case, an adult who started growth hormone therapy had to be taken off for a year during recovery; this is a much longer period off than in stimulation tests. After this period, a posterior MRI test showed that his brain white matter had decreased 20%.
  • There is an increased atrophy in brains of adults with PWS who are non-growth-hormone treated, which might lead to degenerative diseases of the brain, including the risk of Alzheimer’s.
  • Overall, human growth hormone for adults with PWS is very valuable treatment which provides numerous benefits and an improved quality of life.

Securing growth hormone treatment for adults living with PWS in Australia

The Department of Health and Aged Care, Pharmaceutical Benefits Scheme (PBS) issued guidance in ‘Frequently Asked Questions ‘Growth Hormone Program – Somatropin Only’.

Some extracts from that guidance, as at 1 October 2022 are:

  • The Australian Government provides subsidised access to growth hormone for eligible paediatric and adult patients through the Pharmaceutical Benefits Scheme (PBS) Growth Hormone Program established under section 100 of the National Health Act 1953.
  • On 1 January 2020, the PBS listing of somatropin for adult patients was amended to improve clarity and access for patients with childhood onset growth hormone deficiency (CO-GHD) due to a congenital, genetic or structural cause. These changes allow patients with CO-GHD due to a congenital, genetic or structural cause to be eligible for access to adult-use somatropin—if they meet the relevant PBS restriction criteria—once they no longer meet the PBS restriction criteria for paediatric growth hormone treatment.
  • Patients with Prader-Willi Syndrome are eligible for access to adult-use somatropin at the age of 18 years or over.
  • Prescribers can lodge authority applications and receive ‘real-time’ responses. Further information on obtaining authority approval via the OPA system is available on the Services Australia website. The forms and strengths, brands and restriction criteria for the PBS supply of somatropin are available on the PBS website.

Families must consult with an endocrinologist to access and monitor growth hormone treatment. PWSA is finding that various endocrinologists are applying differing interpretations in relation to whether individuals living with PWS qualify for the PBS subsidy.

PWSA is of the opinion that most adults living with PWS in Australia should qualify for ongoing PBS subsidised GH should they chose to apply, however, you will need to make your own enquiries to confirm suitability and eligibility.

Note: PWSA makes no recommendations regarding growth hormone. Your treating endocrinologist, who prescribes human growth hormone dosing for PWS should, above all, be interested in the overall health of the patient. That’s why they look at the whole picture, not just hormone levels or height, and adjust accordingly. You should be aware that there is no set dose for all patients; every patient is different.

The end goal is for the patient to obtain the maximum benefit from the treatment for a better, fuller life.

Additional resources

Benefits of growth hormone for adults with PWS’, (video) Dr Jennifer Miller, Foundation Prader Willi Syndrome Conference 2009 https://www.youtube.com/watch?v=JsVdh1bn6NU

‘Growth hormone for PWS’, Foundation for Prader Willi Research https://www.youtube.com/watch?v=hZAar20QOeE (video)

Human growth hormone for adults with PWS’, (blog) Foundation Prader Willi Research https://www.fpwr.org/blog/human-growth-hormone-for-adults-with-pws

‘Human Growth Hormone Dosing for PWS’, Blog FPWR, Dr. Miller describes human growth hormone dosing for PWS, including the common dosages for children and adults as well as considerations for adjusting dosage. https://www.fpwr.org/blog/human-growth-hormone-dosing-for-pws

Thank you …

to the Foundation for Prader Willi Syndrome and Dr Jennifer Millar for the original source material.

 

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