The recent news about Fiasp insulin being removed from the Australian Government’s Pharmaceutical Benefits Scheme (PBS) from April has seen many people in the community ask “Why is Diabetes Australia not saying anything?”
The grapevine says that media releases will happen on March 1st (tomorrow). There will at least be a line item hidden in the monthly PBS Website Update where it lists which medications are being added/removed from PBS.
But that will be a statement by the government of what will happen, and discussions/debate about it would have been held earlier. It’s obviously going to be harder to get the government to undo a mistake like this than to discuss with them beforehand why they should not do it. And it’s affecting a lot of people. The Change.org petition I linked to already has 3350 names on it and it’s steadily climbing.
Diabetes Australia has traditionally billed itself as a “peak body” representing Australians with diabetes. It may turn out that they are preparing something and are going to step up and advocate for the people who rely on Fiasp insulin, but at this point it doesn’t feel likely. In recent years its voice has often been hard to hear.
Of course, DA is not the only “peak body” out there. Others like JDRF also exist. While JDRF for years never seemed to have any relevancy for me as a non-Juvenile, they have moved to bring adults with diabetes into their focus even though their name still has “Juvenile Diabetes” in it. It’s not as though we remain juveniles forever, but the archaic name for Type 1 Diabetes is unfortunate: children are a minority of the Type 1 population.
Muffled by law?
One theory has been that DA has been hamstrung by the fact that it receives lots of federal funding, and changes to the Electoral Act under the previous government meant that charities that receive government funding cannot lobby the Government on related issues.
DA definitely does receive federal funding. For example amongst other things it still administers the NDSS (although it no longer actually supplies the products since the Pharmacy Guild won the contract for that). Just to be clear: NDSS is not involved in the supply of Fiasp. Supply of medicines is a PBS thing in the Health Department. I’m sure DA also gets federal funding on lots of other projects. On a related note, JDRF also administers the Federal Government’s Insulin Pump Program.
However, it turns out things may not be as clear-cut as this. The Australian Charities and Not-for-profits Commission has interesting things to say about the topic. Now I am not a lawyer or expert in this, but my understanding is that there is still scope for lobbying governments for change in relation to the actual reason the charity exists. It would fall under the “advancing debate” category.
It is a messy situation and there seems to be a lot of confusion about what is and isn’t allowed in the charity sector. One explanation I was given was that a lot of media coverage around the changes in the Electoral Act was instigated by churches who were fined for trying to influence their parishioners into voting only for parties that did not support LGBTIQA+ marriage/conversion/etc issues. The media then confused that into articles stating that charities had been blocked from lobbying the Government. Which is apparently wrong.
The fundamental reason for organisations like DA to exist is to support the people they represent, and that should be hard to ignore.
Please, if you or a loved one has been relying on Fiasp insulin in their diabetes management, please add your voice to the petition.
And don’t feel shy about contacting organisations like Diabetes Australia and JDRF directly at the same time to make your concerns heard. The Federal Health Minister (Mark Butler) can be a relevant contact too.
I’m sure this will not be the only topic that we need to lobby the government over this year. Hopefully our “representative” advocacy bodies can have an impact.