Welcome to the second edition of our 
CF Adult and Family Newsletter...

60 per cent of our community feel under financial pressure to a considerable or great extent due to their cystic fibrosis.

There are a number of income support options you may be eligible for such as social services, concessions and superannuation. We have pulled these together to help you start to explore your options.

The key to accessing these supports is discussing your individual situation with the Social Worker at your CF Clinic.

The Social Worker uses specialist knowledge of key support services to enable advocacy on issues such as income support and concession card eligibility, reinstatement of cancelled income support payments and access to travel and accommodation subsidies associated with travel to the CF center. - Dominic Fitzgerald, The Cystic Fibrosis Passport.

 Edition 2: Income Support -
Social Services, Concessions and Superannuation

Hints & Tips - Commonwealth Income Support

1. Request with your CNC to meet your CF Clinic Social Worker (if they are not regularly available).

2. Submit an intent to claim - online (but you must get all forms completed and sent in within 14 days.) **Why do this? As when you claim is successful you payment will be backdated to when you submitted your intent.

3. Claim forms: organise an appointment before you start your claim with your GP or Clinic Nurse Coordinator so they can complete the medical report part of the form.
   **Does it matter who you go to?  Yes as your success is determined by your Medical Report - choose the Treating Health Professional who has a better understanding of the patient’s CF history.

4. Proof of Identify: you will require a commencement of identity in Australia (e.g. Birth certificate or passport) and use of identity (e.g. driver’s license, student id card, Medicare card, utility account/bill.)

5. When submitting a claim: the best option is to go into your local office, you can use post but it is less timely and less reliable. Not all payments can be processed online, nor can all documents be received through the online portal. 

6. Always keep your own copy: for your record, but also to form a base for appeals or future applications.

7. Rejected claim: If your application is rejected you can appeal. If your appeal is also rejected, this does not mean you will never be eligible. If your circumstances change you can apply again.

8. Already receiving payments? You may not have to provide as much information, but you should have everything with you when submitting a claim.

Hints & Tips - PBS Safety Net

1. You can combine your family’s PBS amounts to reach the threshold sooner if you are, a couple legally married or in a defacto relationship (with or without children) or, a single person with dependent child (under 16 or a full time student under 25)
2. It helps to use the same community pharmacist as much as you can, to assist in maintaining records for when you hit the threshold.
3. The Hospital Pharmacist and Community Pharmacist have different drugs that can qualify towards the threshold. This means it may be better to purchase some items from the hospital (for example; anti-histamines, Vitamin C, VitABDECK, Paracetamol, Salt tablets and Glucolyte) instead of from the community pharmacist so you can reach the threshold sooner. Ask your Hospital Pharmacist which of your scripts apply.
4. Once you hit the threshold discuss your prescription needs with your CF team and reasonably stock up on your medications (wait 20 days before putting next script in) to reduce your costs, especially over Christmas.
5. If you go over the threshold before you get your card you can request a refund using this form. 

General Business

Advocacy - Okambi Update

CFA has been invited to meet with the Pharmaceutical Benefits Advisory Committee prior to their meeting this March.

Thank you to everyone who submitted a comment on the PBAC’s consumer portal. Over 600 people lodged their comments in support of Orkambi. Also 13,000+ signed CFA's Change.org petition, and shared personal stories. These will add heart and soul to our meeting with the PBAC.

We will share the outcome with you when it is made public. For now keep fingers and toes crossed. For all updates on the Okambi debate so far (being led by CF Australia) visit the website

Please feel free to forward where appropriate to your extended family and friends. 

If you would like more information on any of the above, please contact Heidi Prowse or discuss with your CF Clinic Team.

Our next topic is: Social & Emotional Well-being

e. heidi@cfact.org.au || m. 0437 485 454

Disclaimer: The information contained herein is provided in good faith. However accuracy of any statements is not guaranteed by Cystic Fibrosis ACT. We provide the information on the understanding that persons take responsibility for assessing relevance and accuracy. Individuals are encouraged to discuss their health needs with a health practitioner.