Dear The Hon Mark Butler MP, The Hon Timothy Nicholls MP, Mr Terry Young MP, Ms Ariana Doolan MP, 

I am writing as a constituent and as a patient living with scleritis, a painful and potentially sight limiting autoimmune inflammatory eye disease. I have been managing this condition for 7-8 years with the support of my Opthamologist and health team, with the primary goal of preventing permanent vision loss.

Scleritis is recognised in medical literature as causing exquisite pain and carries a real risk of irreversible damage to the eye if not adequately treated. For several years, my condition required high-dose oral prednisone and multiple immunosuppressive medications, including methotrexate, infusions and biologic therapy. During this time, I was clinically immunocompromised, which made the COVID-19 pandemic and subsequent flu seasons particularly challenging.

I am grateful that my disease is now relatively stable although my eye, as I write this email, is currently flaring and painful. I have been asked by my Ophamologist to use Maxidex every 2 hours for the next 3 days. I am no longer on systemic immunosuppressants and am currently managing my condition with:

• 2 mg of oral prednisone daily
• daily meloxicam (Mobic)
• and multiple prescribed eye drops, used 10-15 times per day

One of these eye drops is Maxidex (dexamethasone ophthalmic) which comes in a mL bottle. This medication is critical to controlling inflammation in my eyes and preventing disease flare-ups that could lead to vision loss. Importantly, Maxidex is the only remaining effective topical anti-inflammatory eye drop available for my condition, following the withdrawal of Flarex from the Australian market.

Another eye drop that I use once a day in both eyes is called Ilevro which comes in a 3mL bottle. I describe this as liquid gold as it costs $45 a bottle as it’s on a private script.

I also use Hylofort which costs $30 a bottle and lasts me about 10 days, as I use it every few hours. I buy it on special at Woolies for $22. That’s the cheapest I can get it. It’s not on the PBS.

An eyedrop that I use daily that helps to counter the side effects of Maxidex costs $25, as it’s not subsidised by the PBS either.

I am also meant to use a serum eye drop made using my own donor blood, but that opportunity has recently been completely removed from government offerings, apparently due to cost savings. I will instead soon be using serum eye drops made with someone else’s donor blood. I recently lost all my own supply of serum eye drops during the recent and sudden storm on Bribie Island as I was without power for 4 days. These eye drops are not considered “life or death” so I am not eligible for a generator.

These are the stories! Now to the point!

Until recently, Maxidex was subsidised through the Pharmaceutical Benefits Scheme (PBS), costing approximately $23 per bottle. It has now been removed from PBS subsidy and is now apparently only available as a private script, increasing the cost to approximately $43-$48 per bottle. I require a new bottle roughly every two weeks, amounting to around $90 per month for this medication alone, in addition to other ongoing medical costs.

Maxidex is not optional or discretionary. It is preventative treatment – treatment that helps ensure I do not lose my vision.

Vision loss has profound consequences not only for individuals, but also for the wider community, including increased reliance on healthcare services, disability support, and reduced workforce participation. From both a human and economic perspective, ensuring access to essential ophthalmic medications should be a clear public health priority.

I am deeply concerned that the removal of Maxidex from the PBS appears to have occurred without adequate consultation with ophthalmologists or patients who rely on this medication. I am seeking clear answers to the following:
1. What was the rationale for removing Maxidex eye drops from the PBS?
2. Was advice sought from ophthalmology specialists regarding the lack of effective alternatives?
3. How are patients with inflammatory eye diseases expected to manage the increased financial burden of essential, sight-preserving medications?
4. Is there a pathway for Maxidex to be reconsidered for PBS listing, particularly for patients with conditions such as scleritis?

Eyesight is one of our most valuable senses. Policies that limit access to essential eye medications risk preventable vision loss and long-term disability. I respectfully urge you to raise this issue with the relevant decision-makers and advocate for the reinstatement of Maxidex on the PBS, or for an equivalent subsidy pathway for patients with serious inflammatory eye disease.

I am contacting both my state and federal representatives because the prevention of permanent disability is a shared responsibility across all levels of government. While PBS decisions sit at a federal level, state governments have a critical role in advocating on behalf of patients and clinicians when access to essential medications is compromised. I urge my state and federal representatives to work together to ensure that constituents with serious eye disease are not placed at risk due to gaps in policy, funding, or consultation.

I would greatly appreciate a response outlining the reasons for this decision and any steps being taken to address its impact on patients.

Thank you for your time and consideration.

Yours sincerely,
Elissa Jenkins