Response 697489946

Back to Response listing

About you

3. Which of the following best describes you?

Please select one item
(Required)
Radio button: Unticked Medicine sponsor/manufacturer/wholesaler representative organisation
Radio button: Unticked Health professional representative organisation
Radio button: Unticked Consumer representative organisation
Radio button: Unticked Government agency
Radio button: Unticked Research/academia/media
Radio button: Unticked Individual sponsor/manufacturer/wholesaler/retailer
Radio button: Unticked Individual health professional, please specify type
Radio button: Ticked Individual consumer/general public/community member
Radio button: Unticked Other, please specify

6. Have you been affected by a medicine shortage or discontinuation in the last 12 months?

Please select one item
Radio button: Ticked Yes
Radio button: Unticked No
Radio button: Unticked Unsure

7. If yes, please list which medicine shortage(s) and/or discontinuation(s).

Which shortage
Questran Lite

Planning for medicine shortages and discontinuations

8. What do you do to plan proactively for a medicine shortage or discontinuation? Select all that apply.

Please select all that apply
Checkbox: Unticked Monitor medicine availability (supply, demand)
Checkbox: Unticked Seek out information about shortages and discontinuations
Checkbox: Ticked Manage stock levels
Checkbox: Unticked Plan for alternative treatments in case of shortage
Checkbox: Unticked Change the way medicine is prescribed/dispensed/taken (e.g. rationing)
Checkbox: Unticked Other

9. Please explain in more detail how you plan proactively for a medicine shortage or discontinuation, including any barriers or challenges you experience.

Prepare: elaborate
When my stock runs low, I start contacting every pharmacy in the state with sometimes having to drive 2 hours to collect my medication as it is the only one available. It is very frustrating as overseas there are other alternatives of Cholestyramine medication, however in Australia we have only one option. A couple of years ago there was an emergency alternative of Jamp, which I had to privately order and it was not subsidised by the PBS which cost me 10 times the amount I would normally pay! But I was desperate.

Responding to medicine shortages and discontinuations

11. Please outline how you respond to a medicine shortage or discontinuation, including any barriers or challenges you experience.

Responding: response
I have had to drive 2 hours to collect my medication as it was the only one available in the state.
My prescription has now expired without all repeats being filled (as I just can't source the medication), so now I have to return to the GP to get a new script, but don't even know if I will be able to access my medication. This costs me personally a lot of money. The script should NOT expire until it is completely filled!

It is very frustrating as overseas there are other alternatives of Cholestyramine medication, however in Australia we have only one option. A couple of years ago there was an emergency alternative of Jamp, which I had to privately order and it was not subsidised by the PBS which cost me 10 times the amount I would normally pay! But I was desperate.

12. Please describe in detail where any of the following have helped you to respond to a medicine shortage or discontinuation:

Responding: helpful
None of this has helped! I have had to ring the TGA to find out more information, including if I can purchase overseas and bring the medication back into the country. Other times I have to start calling multiple pharmacies which takes a lot of time.

Communicating about medicine shortages and discontinuations

13. Where do you get information about a medicine shortage or discontinuation? Select all that apply.

Please select all that apply
Checkbox: Unticked Health professional organisations
Checkbox: Unticked Patient organisations
Checkbox: Unticked Industry organisations
Checkbox: Unticked The TGA and other federal government agencies
Checkbox: Unticked State and territory government agencies
Checkbox: Unticked The media, including social media
Checkbox: Ticked Other sources, please specify
Communicating: information source: other
Pharmacists

14. What information or updates about a medicine shortage or discontinuation do you find most helpful and from where?

Communicating: information most helpful
Subscribe to an email alert with valid options or alternatives. Pharmacies being able to post the medication if located in another state.

15. What challenges do you face when receiving information about medicine shortages or discontinuations?

Communicating: challenges when receiving information
Frustration!

17. What do you think about the information on the TGA website about medicine shortages and discontinuations?

Communicating: TGA website
It is of no help to me.

18. Do you have any suggestions to improve the TGA’s communication of this information?

Communicating: TGA suggestions
Subscribe to email alerts about my specific medication.

Impact of medicine shortages and discontinuations

19. Over the past 12 months, how much time did you spend on medicine shortages or discontinuations? What activities took the most time?

Impact: time
Phoning pharmacies and driving for hours to collect my medication. Plus time to return to the GP to get another script as it had expired before being completely filled. Plus when I run out of medication I am not able to leave home, as I require a toilet urgently, which is debilitating.

20. What were the most challenging activities and why?

Impact: most challenging
Time and stress!

21. Tell us about the health-related impacts of medicine shortages or discontinuations.

Impact: health-related
When I run out of medication I am not able to leave home, as I require a toilet urgently and frequently. Bile acid malabsorption is classed as as an invisible disability.

22. Are there other impacts of medicine shortages and discontinuations that you would like to mention?

Impact: other
I find it very frustrating that only drug companies can afford to apply for TGA approval and will do so only when it is profitable for them. There are other Cholestyramine alternatives overseas that are not accessible here in Australia. These alternatives should be considered for TGA approval and PBS subsidies also.

Improvement opportunities

23. What is the biggest problem within the following areas that you want fixed, and why?

Opportunities: biggest problem
Allow easier access for alternatives that do not cost more money than the original option.

24. What do you think of the current TGA regulatory framework around medicine shortages and discontinuations?

Improvement: TGA regulatory framework
It is reactive and doe not appear to be proactive to protect the national interests. Simply undating a website saying that there are shortages doesn't go far enough to actively resolve the issue or find/source alternatives in a timely, cost efficient way.

25. Do you have any suggestions about how to improve medicine shortages and discontinuations in Australia (i.e., what does good management of medicine shortages and discontinuations look like for you)?

Opportunities: suggestions
We need to be less reliant on overseas supply chain issues, surely COVID-19 taught us this lesson. Invest in Australian production and maintain adequate supply amounts.

26. Do you have any further comments about medicine shortages and discontinuations in Australia?

Opportunities: further comments
Be more flexible and adapt to new alternatives in-house. Do not rely on pharmacy companies to have to apply for emergency approvals, actively do this internally. Be on the front foot!

Consent

27. I consent to the collection, use or disclosure of my personal information as set out in the privacy notice and select the following option regarding the publication of my submission:

Please select one item
(Required)
Radio button: Unticked Publish my response, including both my name and organisation's name
Radio button: Unticked Publish my response, without my name but including my organisation's name
Radio button: Ticked Publish my response, without my name or my organisation's name (anonymously)
Radio button: Unticked Do not publish my response