Advocacy groups that don’t advocate?

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 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 act

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.

7 thoughts on “Advocacy groups that don’t advocate?”

  1. I have approached DA a number of time for help with shortages of CGM sensors and CGM transmitters. At the end of each conversation (all of which have resulted in no help) I asked that they send out some sort of notification to the diabetic community just stating there are shortages. No notifications were ever issued. As I said to them, it just helps those of us who rely on these things to better plan our lives. One time i got off the phone crying as I didn’t know who else to turn to.

  2. I am a consumer of Fiasp, have signed the petition and contacted all relevant parties about my concerns. The only peak body who reached out to me today was JDRF and within an hour of receiving my email to acknowledge receipt of my email and were very helpful and supportive. I wouldn’t dismiss the hard work done in the background to support and help our T1 community.

    1. Yes, lots of work is being done in advocacy. Some of it not immediately visible. Unfortunately many people have lost trust that some of these organisations actually care about them, as pleas for action have sometimes gone unanswered. This article was mainly exploring the issue of whether the organisations were actually able to help. I trust that at least some of them are.

      Regarding the Fiasp issue I am happy to hear of activity at JDRF. Thanks for the update.

  3. Trent Reschny

    I’m in Canada, where our medications are first covered by insurance first and then depending on circumstances, government second. We have seen recent additions of CGM and pump technology being added to what is covered at both levels. Seeing Fiasp disappear from coverage, despite how well it can complement CGM’s and pumps, would be a huge step backwards. Thankfully that has not happened, but I appreciate the warning signal it sends. I can only think that there is a lack of understanding and need for continuing conversation to fill the gaps where they exist. So much of what has been happening in the DIY-APS scene is still largely unknown, despite the incredible impacts it is having for those who are taking part. Thanks for engaging in the dialogue with researchers who are working to make better known the amazing work that is happening in this scene, and with advocacy groups and government officials. Also speaking to pharma companies who have their own paid lobbyists on staff is worth considering. I called our Eli Lilly office in Toronto recently who have chosen to not sell / distribute Lyumjev in Canada, despite it being government approved almost two years ago. I told her I would be calling again to plead for them to change their mind, and that the post prandial glucose levels of diabetics across our country could be improved if they were to simply change their minds, not to mention it would be very good for them as a company. Time to call again…

    1. True. Unfortunately here in Australia Eli Lilly are legally bound to not discuss Lyumjev as it’s not approved as a medication.
      Of course we can always talk to them about it, we just can’t expect specific responses until it is TGA-approved.

  4. Trent Reschny

    A follow up note after just speaking again to a sympathetic CSR at Eli Lilly… She mentioned that if I write an email and request a response within a (reasonable) set time period, their policy is to always abide by that request. It’s possible that many of the government arms and advocacy groups also have similar policies. If that’s true, it makes legitimate expressed concerns harder to ignore when they are forced to respond. At the end of the call I asked her if the policy she shared was applicable to phone calls too, and she said “yes”. So I asked her to please give me a call back within 7 days to update me on my concerns, whereby she told me she would be calling me by next Tuesday. Good trick, so I thought I’d share…

  5. Craig Pennifold

    I contacted Diabetes Australia a few days ago about the impending FIASP decision. A DA representative called me back to advise she had no information she could provide and could not comment on any discussions DA might be having on this topic. It was a very specific and studied non-response. I’ve been a DA member for decades but this non-action has caused me to rethink whether DA deserve my ongoing support. I find most of what they produce is targeted at T2 diabetes so their publications etc are of limited relevance to me as a T1.

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