Success in changing the PBS for ADHD medications

Over the past few months, we have asked the ADHD community to support us in changing the way ADHD medications are made availability under the Pharmaceutical Benefits Scheme (PBS).

ADHD Australia would like to thank all those who wrote supporting statements, both last year and earlier this year, to the Pharmaceutical Benefits Advisory Committee (PBAC). Our long-term strategy of maintaining pressure to have changes made in the supply and availability of ADHD medications is finally paying off.

The PBS is being changed in two significant ways and these changes will take between six to nine months for the government to finally legislate on. It must be noted that this is a usual time from PBAC recommendations being made to those recommendations finally being legislated within the PBS.

Firstly in March 2020 “PBAC recommended extending the listing of lisdexamfetamine [used in Vyvanse®] for the treatment of ADHD to include patients who are diagnosed after the age of 18…for there to be equitable access to treatment regardless of age of diagnosis.”

And secondly in July of 2019 “PBAC recommended…listings for three new strengths of lisdexamfetamine [used in Vyvanse®] for the treatment of patients with ADHD…The new strengths of lisdexamfetamine will provide greater dosing flexibility [for doctors] to achieve optimal efficacy and tolerability for patients.”

ADHD Australia looks for positive and systemic change which sometimes takes a longer-term approach to getting the job done. We would like to mention that in the earlier PBAC submission in July 2019 ADHD Australia planted the seed for removing the discriminatory practice of excluding those diagnosed with ADHD as adults. While we knew we could not change the PBS then we knew that planting the seeds early with government is a way of having it noted for the future. In the July outcomes “PBAC noted a number of consumer comments regarding the current age of diagnosis criterion for ADHD. The PBAC considered that this was outside the scope of the submission’s request, and that a minor submission including financial impacts would be required for the PBAC to review the age of diagnosis in the restriction”. It’s doing things like this in the background that we feel can make the biggest long-term positive impact for the benefit of the whole ADHD community.

It has been a long time in coming and over the years there has been many attempts to have, what the ADHD community sees as discriminatory practices by successive governments, changed. There is still between six to nine months of the standard government process (which is unlikely to be hastened under our current Covid-19 crisis) to go before the PBS legislation changes finally happen on the two items listed above, but it will happen.

We at ADHD Australia feel that this is only the first step in a longer marathon to have ADHD recognised and treated equally like other health conditions. ADHD Australia will be asking more of the ADHD community to place specific pressure to have more legislation changed in the future. So please keep a look out for future emails which ask for your assistance in these types of community actions.

If you would like to take a look at the separate recommendations for the PBS changes then please go to the PBAC website by following the links below. Scroll down the list in the column in the document titled “DRUG TYPE OR USE” and find the one which mentions ADHD specifically.

Once again ADHD Australia would like to thank all those who wrote supporting submissions and as further opportunities arise to have community support in this important area, we will communicate these to the ADHD community.

Yours sincerely,
Len Russell
ADHD Australia
April 2020

Special Note:
If viewing on a mobile does not take you directly to the PBS meeting outcomes then please follow the tabs and links in this order to find the documents. On the PBS website, click the Desktop Site, then the Industry tab, then the PBAC Meeting link, then the PBAC Outcomes link. Finally click on the July 2019 and then the March 2020 links to see the documents mentioned above.