What does the PWSA Vic advocacy look like:

• Completing submissions on behalf of the PWS community about various areas of the NDIS  

The NDIS via their Have a Say page on their website has the opportunity to submit submissions about proposed changes to the NDIS and how they will affect the PWS community Over the last two years we have submitted many submissions either on behalf of PWSA Vic or as a private submission as a member of the PWS community, on a wide range of topics:

• Supported Independent Living
• Disability Employment Support
• Home and living -Supported Disability Accommodation /Independent Living options.
• Access and Eligibility Policy with Independent assessments

The recent submissions made during the most recent NDIS consultation are now published by NDIS and can be accessed via Have a Say page of the NDIS website.

In some cases, these submissions have also been accepted by the Senate’s Joint Standing Committee for the National Disability Insurance Scheme, for consideration.

• Participation on consultations and collaborations with other Disability Support organizations, Allied Health Peak bodies and Emergency Services
• ECSNP (Exceptionally Complex Special Needs Program)
• Dietitians Australia Webinar Collaborative Support Teams Project.
• Victoria Police Voluntary Disclosure Program -a part of the First Response Kit which we will hear more about next year.

All the above are examples of PWS advocacy as a collective voice.

It’s important that all PWSA Vic members have a chance to let their voices be heard about issues that affect them and their families.

Many of you do raise concerns about issues when you contact us on the PWSA Vic phone support line. This feedback provides us with important information about what issues are concerning our PWS community. It is often off the back of these conversations that trigger many of the submissions.

Going forward please do not hesitate to contact us at info@pwsavic.org.au  or ring us on 0451797284 to let us know about issues that are important to you.

Or better still go to the NDIS Have- a- say page on the NDIS website

https://www.ndis.gov.au/community/have-your-say  and provide feedback or submit a private submission.

Remember many voices are louder than one voice alone.

The post In the PWS Advocacy Space appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Due to the low incidence of PWS in the general population it is unlikely that many members of our emergency services will have heard of PWS. But we also know that when the members of the emergency services have some understanding of Prader-Willi Syndrome and its complex behaviors, it can have a positive effect on outcomes.

The first stage for developing the Kit involves producing online educational resources for use by First Responders as well as for support providers, schools, and parents.  For the second part of the Kit we are collaborating with Monash Uni IT to produce a ‘First Responders technological solution/app’.

We have made a start on collecting the information and resources we will need for the Kit.  I would like to say a big thank you to the PWSA VIC members who have already completed their zoom interviews and contributed ideas and insights.  I would also like to thank the Disability Providers, Disability Support Staff, Allied Health Professionals and First Responders who have also taken part in this process. However, the Monash IT team is still looking for parents of children with PWS who have had interactions with emergency services, both in metropolitan and regional areas, to be interviewed about their experiences.  Anyone in the PWS community who would like to take part in the project via interview or written contributions, or for more information on the project please get in touch via email at training@pwsavic.org.au. 

The post Update on the NDIS ILC “PWS First Responders Kit” Project appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

As per the PBS site summary, the changes noted were as follows:
“Adult growth hormone replacement was recently approved for use in Australia for adults with poor quality of life. Approval requires documentation of biochemical evidence of growth hormone deficiency and poor quality of life that improves with growth hormone replacement. Quality of life is assessed using the AGHDA-QOL questionnaire.”

To ensure that we were providing the correct information to our community, we decided to seek clarification of the new changes from the following organisations:

• The Endocrine Society of Australia
• The Pharmaceutical Benefits Branch- Services Australia (PBS)
• Australian Government Department of Health – Highly Specialised Drug Program

Each of the responses we received provided similar information. Communication from the Pharmaceutical Benefits Branch advised the following:
“Before prescribing PBS subsidised somatropin, prescribers must satisfy themselves that their patients meet the eligibility criteria as outlined in the Schedule of Pharmaceutical Benefits and request authority approval from Services Australia. Authority application forms can be found on the Services Australia website here.”

The change to the PBS is indeed a great win for all adults with Prader-Willi Syndrome who have received PBS subsidised GH treatment as children in the past, but not for the older adults with PWS.

The scenario for adults with Prader-Willi Syndrome is very similar, as was the case with the children with PWS between 2000 and 2008 when only a few qualified under the stringent criteria of 2 stimulation tests. Yet, irrespective of the stimulation tests, all children with PWS benefitted as the results of studies done on the children with PWS in Australia since 2008 showed

What are the details of the changes to the PBS regarding Growth Hormone 

“On 1 January 2020, the adult listing will be amended to improve clarity and access for patients with childhood onset growth hormone deficiency (CO-GHD) due to congenital, genetic or structural cause. This means that children may continue to access PBS subsidised growth hormone treatment as adults if they meet the PBS restriction criteria.

Patients with CO-GHD due to a congenital, genetic or structural cause will be eligible to access somatropin as adults once skeletal maturity is reached. Additionally, CO-GHD patients due to a congenital, genetic or structural cause who have previously received PBS-subsidised therapy as children will no longer be required to provide provocation tests to meet the eligibility criteria for adult use somatropin.

Somatropin is currently listed on the PBS for the treatment of adult and paediatric growth hormone deficiency conditions. The restriction criteria for the supply under the PBS of the pharmaceutical benefit somatropin (growth hormone) for paediatric and adult use is available at www.pbs.gov.au.”

FAQ about these changes as per PBS information :

Who is eligible to prescribe growth hormone?
For initial treatment in adults, the pharmaceutical benefit (somatropin) must be prescribed by an endocrinologist.

What results are required to support the authority application for growth hormone for adults?
The restriction criteria outlines the testing requirements necessary to support an authority application. Provocation tests include:

1. current or historical evidence of an insulin tolerance test with maximum serum growth hormone (GH) less than 2.5 micrograms per litre;
2. current or historical evidence of an arginine infusion test with maximum serum GH less than 0.4 micrograms per litre; orc)current or historical evidence of a glucagon provocation test with maximum serum GH less than 3 micrograms per litre. 

But patients who have previously received PBS-subsidised therapy as children are no longer required to provide provocation tests to meet the eligibility criteria for adult use somatropin as evidence of growth hormone deficiency was provided in childhood.

What if the person with PWS has previously received non-PBS subsidised treatment with somatropin as an adult? 
The listing includes provisions to grandfather patients who have previously received non-PBS subsidised treatment with somatropin prior to 1 December 2018. Patients in this category must demonstrate that they met all the initial restriction criteria prior to initiating their non-PBS subsidised treatment. A grandfathered patient may qualify for PBS-subsidised treatment under this restriction once only. For continuing PBS-subsidised treatment, a grandfathered patient must qualify under the criteria for continuing treatment.

We interpret this to mean that children/teenagers with Prader-Willi Syndrome who have been accessing Growth Hormones on the PBS paediatric program will be able to continue to access Growth Hormones on PBS without further assessment as an adult.

However, those who were not on the PBS paediatric Growth Hormone program must satisfy the eligibility criteria for adult use somatropin (growth hormone).

We encourage you to discuss these changes to PBS with your endocrinologists to better understand what the changes will mean for your son/daughter

Do the 1 January 2020 changes affect access to growth hormone for paediatric use? 
No. The amendments to adult-use growth hormone do not change the existing listing of and access to growth hormone for children. Patient criteria and prescriber eligibility for paediatric growth hormone remain unchanged. On 1 February 2019, the eligibility criteria was broadened for improved access to PBS-subsidised growth hormone for paediatric patients in special clinical circumstances. A Quick Reference Guide for Prescribers is available at www.pbs.gov.au/info/general/changes-to-certain-s100-programs

Click here for more information the PBS Growth Hormone Program.

This is indeed a huge win for people living with Prader-Willi Syndrome.

The post Update on PBS Growth Hormone Program for PWS appeared first on Prader-Willi Syndrome Association of Victoria, Australia.