There is evidence that for people with PWS it is beneficial to continue treatment with growth hormone therapy even after they have reached their final height. To learn more about growth hormone treatment for teens and adults with PWS, visit our GH page where there is a useful video from Dr Jennifer Miller and a summary of the current research. However, treatment is not funded for adults and teenagers aged 14+ girls / 16+ boys.
After our application to widen access for teens and adults was declined in 2017, we have continued to lobby Pharmac. We met with Pharmac last year and asked them to clarify the basis for their decision to decline – it’s still not clear! We have also recently made an official information act request in order to try to get some clarity. Pharmac are under pressure from NZORD and others to develop a policy that considers equity in funding and to clearly separate the clinical assessment of a drugs performance from the financial impact and funding assessment.
The good news is that the price of growth hormone has come down and while it varies from pharmacy to pharmacy, the cost of a daily maintenance dose of 0.2mg is likely to range between $62 – $85 per month, but some teens will require a higher dose initially. This reduced price makes self-funding a more feasible option and it may be possible to claim this cost through WINZ.
Adults and those children exiting the funded growth hormone treatment program can be tested for growth hormone deficiency as GH is funded for adults with deficiency. Unfortunately, many people with PWS will fall just below the threshold to get funded treatment this way.
If you would like to continue growth hormone for your teen or start growth hormone for an adult with PWS – please let us know! Pharmac has recently stated it believes there is a lack of interest in treatment and uptake would be minimal. Please also forward any useful information if your teen / adult son or daughter is already receiving GHT. Information from families is helpful for our future submissions, and it is also useful to share experiences around dosage and to help others access adult endocrinologists with expertise in PWS. For future submissions, in addition to knowing the number of families self-funding, any of the following data could be useful:
a.) if your child has stopped GHT and you have observed effects on energy level, body composition, weight gain, mood or overall quality of life;
b.) if your child later resumed treatment and you observed benefits;
c.) if your child resumed treatment at a lower dose and this was not effective enough;
d.) if your child started treatment as a teenager or adult and you observed benefits.