An update in my quest …

[LemonZest11]

Hi All, I have had a letter back from the State Health Department regarding my endeavours to get an extension to my allocation of tocilizumab. Thing is, it’s a Federal decision so I haven’t given up, but not overly optimistic either. I have attached the letter.

[DorsetLady PMRGCAuk volunteer]

Hi,

What you expected probably, but no doubt disappointing, but can I just suggest you repost picture covering your email address - for security reasons. This part of forum can be seen by general public…..

[LemonZest11 in reply to DorsetLady]

Yes, thanks, I will do that now.

[LemonZest11 in reply to DorsetLady]

It's not the response I was hoping for, and it came so promptly that I knew what the likely reply was. However, this letter looks generic, with just the finer details adjusted. I doubt that this has gone any further than our State Health Department which has no power re this issue. I have asked them to please reach out to the Federal Health Minister, on my behalf. It's worth a try, if for no other reason than to draw attention to the situation. I need to discuss the options offered with my Rheumy.

[Rugger]

I'm sorry that this response hasn't been more positive, but wish you well for the next stage.

It will be interesting to find out about the ''....clinical trials of new medicines to treat giant cell arteritis....'' Your Rheumy should be able to give you details!

All the best.

[LemonZest11]

Thanks Rugger, yes, she'll be on top of the trials. The suggestion of TCZ through outpatients is also worth discussing. All the best to you on the next chapter of your journey.

[SheffieldJane]

Hats off to you LemonZest11! Keep plugging away! 👏👏👏👏👏👏👏

[LemonZest11 in reply to SheffieldJane]

Thank you Jane, I will keep plugging but I am aware of the unlikely possibility of success. I will become a flea in their ears 😁

[SheffieldJane in reply to LemonZest11]

If you were a horse I’d back you. 😙

[LemonZest11 in reply to SheffieldJane]

Haha, wish I could run like a horse 🐎 😘

[LemonZest11]

Well I have written several, they vary slightly depending on to whom. I began with my local State MP, that was long and detailed, to give him background because I needed him to alert my local Federal MP. But then a neighbour who just happens to be a retired state Health Minister told me I need to write to everyone, making it short, sharp and urgent so as to gain attention. The response I received is from our state Health Minister's man. Now they have no power or authority to grant an exemption so I need her to reach out to our federal Minister for Health. Letters basically cover a brief history, the fact that TCZ is working for me, the fact that I do not wish to add another drug into the mix with the inherent side effects that come with that. I offered links to research and papers given to me on here, and finally my Rheumy's letter which, frankly, is not really of any help. Now I need to follow up on all of these. Apparently I need to become very annoying which was not my preferred approach. 🤷‍♂️