Matt Vaughan

Keratoconus Australia committee member

Report presented to information seminar held on 23 October 2002

I will first discuss the research I have been doing as part of the Keratoconus Australia committee in regard to rebates for Keratoconus contact lenses from Private Health Insurers. I will also discuss the Medicare benefits for consultations by optometrists and how they could be improved for Keratoconus patients.

I will then talk about my experience as a patient having a corneal graft and what changes I would make if and when I have to have another graft.

- I will begin by looking at my research into the Private Health Insurance rebates for Keratoconus patients contact lenses. The research is in the preliminary stages at the moment so any findings are reasonably tentative. This research was initially launched because of complaints about the inadequate rebates given by private health insurers to Keratoconus patients for contact lenses. I am now also looking at the benefits for consultations with optometrists and how this system does not adequately cater for post graft, and very severely effected Keratoconus patients.

- As part of my university degree I am writing a report laying out some of the issues and problems encountered by Keratoconus patients.

- The report will include a background of Keratoconus, information about Keratoconus Australia and preliminary findings relating the Private Health Insurers and Medicare item number which is relevant to Keratoconus.

- The report will lead to a survey of Keratoconus patients in order to establish what are their most significant problems. The lack of realistic rebates for contact lenses is one the main issues the survey will look to expose. Hopefully this can lead to changes that make the disease more financially manageable for those severely affected.

- The rebates given by private health insurers to Keratoconus patients are relevant to the cost of glasses rather than contact lenses. The fact that many patients can only gain workable vision with hard contact lenses is not recognised by these organizations, which are subsidised by the government. The system should allow for people who have to wear lenses to see and do not have the option of wearing glasses.

- Getting in contact with the Private Health Insurance organizations about this has been very difficult. Once the needs of patients are better established, through the survey, and I have better established what is possible, I plan to approach the insurers again. One initial thought is proposing the setting up of an ancillary package similar to that provided for amputees.

- When a corneal graft is done, it is assumed that the patient is fixed after the procedure. In reality most patients still require the use of hard contact lenses to see in the same way an amputee would need a prosthetic limb to walk. It should be assumed that Keratoconus patients who need to wear RGP contact lenses to see are disabled without their lenses. Why are Keratoconus patients not given the opportunity to access packages like this within the Private Health Care system.

- This is simply an idea at the moment and much more work needs to be done. It is difficult to know how the companies will react to such a proposal within the current economic climate.

- Once Keratoconus is better recognised by the Medicare system this can hopefully be achieved.

- The problems I have had fitting lenses and the costs I have encountered after my successful graft have been disappointing. The research into the private health insurance rebates has actually exposed a more pressing problem.

- Item number 10924 within the Medicare benefits for consultations by optometrists is the definition under which Keratoconus patients fall. It states that vision can be improved more so with contact lenses than with glasses and allocates a certain amount of time and money for each consultation an optometrist has with patients that come under this category.

- This means that Keratoconus patients are allowed more time than those who suffer from severe myopia for example.

- The definition does not mention the use of hard or soft lenses and does not adequately cover the varying degrees of Keratoconus.

As a patient this translates into the following situation;

-After I had my graft I had problems with the fitting of my left lens.

- My left lens cost $330 and took over 1 hr to properly fit.

- My right lens only cost $200 because it could be easily fitted.

The problem is that the optometrist has to alter the prices he is charging for lenses to compensate for the losses he or she is making on their consultation times. Because it took so long to fit my left lens, the optometrist does not make any money with the standard mark up on the lens.

- It is not the fault of the optometrist as they are running small businesses and need to cover costs. The schedule fee of $175.85 does not accurately measure what it is costing the optometrist, especially in severe cases of keratoconus, so they must compensate by pushing up the prices of their lenses. This is reflected in some patients paying up to $400 for lenses that are only worth $100.

- What is much more problematic than this situation is optometrists who are simply not putting the time required into fitting lenses. If the optometrist is only using the time they have allocated, based on the current schedule fee, then patients will be end up with badly fitted lenses. This will lead to lost lenses, more fitting and the potential for corneal damage.

- The item number 10924 needs to better defined in order to cater for Keratoconus patients at different stages or phases of their disease.

- One preliminary recommendation may be to alter the definition of 10924 within the Medicare benefits for consultations to include varying degrees of severity including post graft definitions of Keratoconus, which would include post graft symptoms, and allow extra time for lens fitting consultations. This would adequately compensate optometrists and lens prices could be kept at a more reasonable level.

- Once the initial report has been finalised and the survey of KA patients completed, I will be able to further my research in a more specific direction. Although I have made contact with various organizations regarding these issues, such as the Private Health Insurance ombudsman, I am still in the preliminary stages of my research. The private health funds especially, need to be further assessed for as to how relevant and feasible some of our preliminary findings in regard to them are.

The project has actually turned out to be much larger than I first expected so it may take quite some time before we are at the stage of any lobbying of the Private Health Insurance organizations or the Medicare system.

- Preliminary findings however do show that there is definitely an avenue for reform in the treatment of Keratoconus patients.

- Please take the time to fill out the surveys when they are posted, and to if possible pass copies on to any other Keratoconus patients you are aware of. The size of the survey will be significant in persuading the government of any change. If we can get large enough percentage of the supposed total number of Keratoconus patients in Australia, then we will have a more solid argument as to the problems associated with the costs and demands of the disease.

- Once we have figures representative of all patients, we can better establish exactly what needs to be done and for whom.

- I assume and hope this is of some interest to you and other Keratoconus patients. A copy of the report I am going to write will be available through Keratoconus Australia.

GRAFT

I will now talk about my corneal graft and how I might do some things differently with the knowledge I now have about the procedure.

- I had a corneal graft in my left eye in May 2001.

- I had experienced significant problems with the eye leading up to the graft.

- A lens could not be fitted that stayed in the eye or gave me workable vision, so the decision to have the graft was quite an easy one to make.

- As a member of the committee for KA, I felt I was well informed about the procedure and had access to plenty of information.

- The process of getting the transplant cornea, and having the operation, went smoothly.

- I have now had the stitches out of the left eye and am wearing lenses again, with good vision.

- With the prospect of having a graft in my right eye in the not to distant future, there some things I will do differently this time around.

-I would like to discuss how the information I have as a patient would affect some of the things I would do if I had to have another transplant.

- The personal experience I have means I can much better prepare for a graft the second time round and I can have more realistic expectations about the possible outcomes. The better informed patients are, the less uncertain the experience is.

- The experience I have from going through the initial operation means I know what to expect from a patients point of view. The surgeon can tell you what to expect but you can only truly know what it is like once you have been on the receiving end of the knife.

- The first point I will make is that for my graft I was given the option of having a local or general anaesthetic. On the doctors advice I went for a local, as he said it would be the better option. Although a local is preferred by doctors for good reason, I believe as patient it was not the most effective treatment for me personally.

- If I do have to have another graft I will opt for a general anaesthetic.

- One of the main issues in my early recovery was the psychological impact of being conscious during the operation. I didn't feel any pain but was aware of what was going on and found it very unpleasant, more so after the procedure than during.

- In the initial few days after the operation I felt this was one of the hardest parts of my recovery, but from the doctors perspective it meant little. I had received no information about this aspect of the recovery and felt it was one area I did not handle as well as I could of.

- The information given to me as patient about this part of the operation was from the perspective of the doctor. Although the procedure was successful, it will be more successful from my perspective, as a patient, if I have a general rather than local anaesthetic next time.

The information patients can give each other about these procedures is invaluable. The information doctors can receive from patients in order to improve their methodology is also important.

- After I had gone through the post graft procedures and had the stitches out of my eye, the doctor declared what a success the operation had been.

- The success of the operation is the next point I want to bring up.

- The success rate of corneal transplant operations is said to be around 95%.

- This information can be misleading to patients. And can add to uncertainty during the recovery phase, as it does not consider quality of vision in its definition.

- All patients must be made aware that a graft is not a miracle cure and is designed to allow you to gain workable vision, rather than act as a cure for Keratoconus.

-For the recovery of my graft, I felt my main objective of success was my vision, whereas, I felt the doctors main objective was that the graft didn't reject. The success of the graft for me was relevant to several issues including;

- Wanting to be able to wear glasses, not contacts;

- If I had to wear contacts them possibly being soft lenses;

- If I had to wear hard lenses that I would maintain the times I could previously wear them;

- That the lenses could be easily fitted with a minimum of contact with my optometrist;

- and that this would reduce the cost of having Keratoconus.

-I wouldn't rate my graft as successful in achieving any of these objectives. That is not to say anybody is to blame for this or that I was led to believe that these outcomes were assured.

-From my perspective as patient and a member of Keratoconus Australia the opthamologist needs to be made aware that the patients priorities can be different to theirs.

- If the opthamologist can have a better understanding of the patients expectations then they can once again make the experience less uncertain and give them, the patients, a greater feeling of control.

The outcomes of a graft in terms of vision, lens comfort and fitting, and the threat of rejection, can be very different for every patient. This needs to be reflected in the doctors trying to understand and treat different patients needs on an individual basis.

- The 95% success rate of corneal grafts needs to be reflected in both the patient and surgeons opinion, otherwise it needs to be reviewed.

- The fact that one patient can be a success and have massively improved vision without lenses, and another patient may be considered the same success but has to go on wearing hard lenses to gain workable vision, leads to confusion surrounding the procedure.

- It is also problematic for the optometrist who must fit lenses after the graft.

- The experience of having the graft and the financial burdens of having Keratoconus as a student, led to my research into the way Keratoconus is being dealt with by the Medicare system and Private Health Insurers. The cost of the disease represents one of the most pressing issues.

- Finally

- Could anybody who has worked in the area I am doing my report on or has any inside knowledge of the Private Health Insurance or Medicare systems, could you contact me through the web site, as any extra information or assistance would be greatly appreciated.

Thank you.

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