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.
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
- 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
As a patient this translates into the following
-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
- 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
- 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
- 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.
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
- 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
- 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
- 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
-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
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
- 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
- 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.
- 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