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The Association conducts campaigns in a number of areas to assist members better manage their keratoconus.

Eye Rubbing

Vigorous eye rubbing has long been identified as a serious risk factor for either triggering keratoconus or worsening progression in existing keratoconus. However many members contacting us for support are surprised to hear about the link between eye rubbing and progression in keratoconus. Some corneal surgeons point to anecdotal evidence of progression halting once vigorous eye rubbing is stopped.

In June 2015, the Association and Save Sight Institute (SSI) agreed to tackle the problem by launching an information campaign to alert patients and eye carers (optometrists and ophthalmologists) of the dangers of eye rubbing, which can exacerbate other serious eye diseases including glaucoma and myopia. It also can cause infections from dirty hands and should be avoided after any eye operation such as a corneal transplant or crosslinking, LASIK, cataract or other surgery.

The joint SSI-KA campaign entitled Hands Off Your Eyes also won the support of the Royal Australian and New Zealand College of Ophthalmologists.

In launching the campaign, Keratoconus Australia said it believed that publicizing the effects of eye rubbing could be a simple but significant step in the fight to minimize the impact of keratoconus in the community. "Eye-carers and allergists have a responsibility to inform their patients of the impact of eye rubbing and offer effective treatments for itchy eyes," the Association said in the media release.

An information poster explaining the impact of eye rubbing is included in the kit sent to all new members and is being made available to eye-carers on request. Contact the Association if you would like a copy. The Association is also collecting information on its registration form about patients' eye rubbing history to assist in research.

Anyone interested in assisting with this work should contact the Association.

Contact Lenses: Getting a Fairer Deal

People with keratoconus get a rotten deal on contact lenses that are generally the only means for them to regain normal vision.

Spectacles and soft lenses provide little improvement in vision for most people due to the high degree of irregularity in the cornea caused by keratoconus. Contact lenses - usually rigid gas permeables - essentially provide a new, regular front surface for the eye, eliminating the distortions caused by the keratoconus.

The complex contact lenses required to correct vision loss from keratoconus are usually very expensive: ranging from about $150 to over $1,200 each.

Over the years, the Association has made submissions to the Australian Government, the Optometrist Association, Vision 2020 Australia and the private health funds for assistance in reducing the cost to patients of these critical devices for our vision. All our pleas have fallen on deaf ears.

In the absence of lower prices or higher rebates on contact lenses for keratoconus, Keratoconus Australia notes that members can access cheaper lenses in a number of ways.

We are pleased to report, however, that our discussions with Professor Stephanie Watson of SSI have raised interest in SSI opening a contact lenses clinic at the Sydney Eye Hospital. We have facilitated meetings between Dr Laura Downie who oversees the keratoconus clinic at the University of Melbourne's Eyecare practice and Professor Watson and we hope to see a new contact lens clinic emerge in the new future to offer another alternative for patients to access cheap contact lenses.

We have established an agreement with the University of Melbourne's Eyecare practice that offers a range of lenses for keratoconus at a 50% discount. The Eye and Ear Hospital in East Melbourne has also opened a keratoconus clinic which is offering contact lenses and crosslinking at minimal cost to patients.

Similar services can be obtained through the Sydney Eye Hospital for crosslinking and the University of NSW eye clinic for contact lenses (although this is not a specialised service for keratoconus).

In Brisbane, patients referred to the corneal clinic at Mater Hospital with a visual acuity of less than 6/12, can receive a script for contact lenses to be fitted by one of the local keratoconus specialists and billed to Mater.

These are just some of the options available to patients experiencing financial difficulty in purchasing contact lenses (and crosslinking) for keratoconus.

Patients can also request bulk billing of optometrist services when experiencing financial hardship. Many optometrists have told us they can provide significant discounts on contact lenses in special cases or deferred payment plans.

It never hurts to ask.

Finally all patients are urged to put pressure on their private health funds to recognize the special nature of contact lenses for keratoconus and to provide higher rebates on claims for these specialized and indispensable lenses. With the assistance of the US Keratoconus Foundation, we have prepared a letter, which members can download and print, to send along with their contact lens claims to their private health fund.

Please send this letter to your health fund EVERY TIME you submit a claim for a rebate on your new contact lenses. The letter to request a higher rebate from your health fund can be downloaded in pdf format off our website here.