A woman who has multiple sclerosis (MS) is fighting to have CommInsure recognise her condition, calling into question the various definitions life insurers use.

ClaimRight founder William Johns was assisting a client with MS in accessing the insurance she held through several super funds when he realised that, thanks to CommInsure's definition of MS in its group policies, the client would not be eligible.

That client was Mary (who prefers not to have her last name published) who was surprised to find she was unable access a total and permanent disability (TPD) claim with CommInsure.

When she had first gone to Johns she didn't know what TPD was at all, let alone that she was eligible for it, but it turned out she had three super funds and was paying for insurance through each of them.

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A TAL policy from her time working at Telstra paid her a TPD claim and a BT policy from her time working at St George Bank also paid out a claim.

But, the largest TPD claim amount Mary should have been able to access was through CommInsure via a super fund account she still had from her time working at the Commonwealth Bank.

Once Johns realised Mary did not meet CommInsure's definition of MS, he was forced to refer her to Shine Lawyers for further assistance. That was in 2017 and Mary is still waiting.

The definition CommInsure was upholding states that MS must be characterised by "demyelination in the brain and spinal cord". Demyelination refers to the lesions or white matter that occur in the central nervous system of MS patients.

Mary only has lesions in her brain. They affect her vision and balance and cause fatigue and concentration issues.

"My neurologist was quite upset to hear what CommInsure is claiming is the definition," she said.

"My specialist spoke to CommInsure, wrote to them, sent them documents and tried to tell them the definition of MS and how it is diagnosed. You don't necessarily need lesions on the brain and the spine."

Shine Lawyers solicitor Katryn Strong is representing Mary. She described someone with MS finding out that they don't meet an insurer's definition of the illness as a "ridiculous" situation.

"If someone has diagnosed MS they have MS, there is no grey area with this awful disease. Mary should be paid her total and permanent disability payment, no questions asked," Strong said.

"Mary has intensifying symptoms, her deterioration is challenging enough to cope with. The last thing she needs is an insurer denying her a payment she rightly deserves."

Strong added that the CommInsure definition applied to Mary's claim is outdated.

"CommInsure is trying to argue that because Mary doesn't have demyelination in the brain and spinal cord she doesn't fit their definition of having MS. A definition that was obviously written years ago and not in line with modern medicine," she said

"MS patients deteriorate in different ways at different rates. Mary is a very unwell lady, you would hope that common sense prevails and this very valid claim is paid. This claim should never have required an appeal."

Mary herself is very confused as to why so many other organisations have recognised her MS but one insurer has not.

"I have NDIS help, I'm on a disability pension but CommInsure are arguing whether I have MS? They want to see lesions in the spine and the brain? It doesn't make sense. I guess that's what insurers do, they keep their money for as long as they can," Mary said.

"People with MS have to suffer to get what they should get in the first place. They get put through the mill. They have anxiety and depression and are trying to work out where the next income is coming from."

CommInsure responded to Financial Standard's enquiries about the definition of MS applied to Mary by pointing out that last month CommInsure updated its definition of MS for retail policies.

The new definition removes any reference to demyelination or where it should be found. Instead it says: "The diagnoses of multiple sclerosis as certified by a relevant medical specialist and evidenced my magnetic resonance imaging (MRI) or other investigations acceptable to us..."

CommInsure said it is currently in the process of offering this updated definition to group insured members but it does not currently apply to those - like Mary - who only hold insurance through their super fund.

Mary's story brings into question the definitions of medical conditions that life insurers use. Complicating the issue is a lack of transparency on how insurers apply these definitions.

"In employer policies in superannuation, TPD claims are typically assessed on whether the member has been absent from work for a period of time and is unlikely to be able to work ever again. Some policies also include a 'Day 1' TPD definition for defined medical conditions, which pays out on diagnosis without requiring an absence from work," a spokesperson for CommInsure clarified.

"The policy in question contains a Day 1 TPD definition which covers multiple sclerosis (MS). If a member does not meet the definition for their condition to trigger a 'Day 1' payment, they will still be assessed against the standard TPD definition that looks at their capacity to work ever again."

CommInsure isn't the only insurer to use a definition of MS that MS patients, neurologists, lawyers and MS Australia disagree with.

Integrity Life, NobleOak, Zurich, MLC Life and ClearView all use definitions of MS that refer to lesions, demyelination or white matter as needing to be identified on the brain and spinal cord.

TAL and NEOS Life refer to demyelination as needing to be identified in the brain and/or spinal cord. OnePath's definition says neurological investigations should find evidence of lesions in the central nervous system. Mary would have met these definitions.

Reviewing a list of the MS definitions used by 14 life insurers in Australia, MS Australia national policy officer Andrew Giles found the vast majority to be "too specific" and not in line with current medical thinking.

AIA got a positive mention from Giles, as its definition only requires MS to be diagnosed by a neurologist. BT's definition is similar, requiring diagnosis by an appropriate medical professional and a history of at least one episode.

A definition from NobleOak (from a PDS branded Australian Unity) was particularly problematic to Giles. It requires MS to be diagnosed by two neurologists and for white matter to be identified in the optic nerves, brain stem and spinal cord.

Requiring an MS patient to see a second neurologist was nonsensical, Giles said, pointing out that patients often face long waiting lists just to see one neurologist and appointments with neurologists are expensive.

"Post-diagnosis people are lucky to get 10 minutes a year with a neurologist and it's expensive," Giles said.

"Why do you need to go to two? One neurologist can look at an MRI and if they're happy to write a report confirming a diagnosis of MS, why would you have to go to a second neurologist?"

Giles was surprised to see that Asteron Life was the only life insurer Financial Standard found which made reference to the McDonald criteria in its definition of MS.

The McDonald criteria is the most up to date criteria for the diagnosis of MS, revised as recently as 2017. It refers to clinical evidence of two or more lesions or clinical evidence of one lesion together with reasonable historical evidence of a previous relapse of MS symptoms. There is no reference to the areas where these lesions need to be identified.

Many of the insurers also refer to specific testing they expect to see as evidence of MS - lumbar punctures and MRIs in particular.

What insurers might not think of, Giles said, is the physical and psychological toll these tests take on MS patients. He's concerned some might be sent for a second or third round of testing that is not medically necessary in an attempt to meet the definitions used by insurance companies.

"A lumbar puncture is awful. It's a huge needle going into your spine and sucking out fluid. You have to have painkillers and go to hospital for it. It is awful," Giles said.

"An MRI is pretty awful for a lot of people too. You get on the little table and you're stuck in this tunnel - a lot of people need some Valium to get through it because it's like being pushed into a coffin. Then these huge magnets spin around the outside and make this huge noise at about 120 decibels. For some people, it takes counselling to have an MRI."

Financial Standard reached out to MLC Life, Zurich, Integrity Life, NobleOak and ClearView to ask why they used definitions of MS that refer to lesions in the brain and spinal cord.

Integrity Life head of retail product William Rogers said: "Our definitions for both Multiple Sclerosis and Severe Multiple Sclerosis are already being assessed as we continually review our medical definitions ahead of each PDS update - this is more frequent than the 3-year requirement set out by the Life Insurance Code of Practice. At Integrity, when we update a definition and the update is more favourable to policy holders, we automatically upgrade policies with this new definition. It's part of our 'guaranteed upgrade' feature. However, in the event of a claim, if the policy holder believes the definitions are less favourable, we will assess the claim against the previous terms of the client's policy. We are in the business of paying claims and that means being open, transparent and flexible in our approach."

A spokesperson for ClearView said: "We have well over 50 medical condition definitions. So as a further protection for ClearView policyholders, there is an overarching clause introducing the trauma definitions on page 91 of the current PDS stating that 'if the method for diagnosing the relevant trauma condition, detailed below, is inconclusive, impractical to apply or has been superseded, we will consider other appropriate and medically recognised methods that conclusively diagnose the specified trauma condition with at least the same severity'.... The information provided on multiple sclerosis is welcome feedback we will certainly look into it and seek advice. In the event we are able to improve the definition, it will be passed back to existing policyholders under our guarantee of upgrade."

MLC Life, Zurich and NobleOak did not respond at time of publication.

MLC Life provided this statement after publication: "MLC Life Insurance regularly reviews all medical definitions, including that of multiple sclerosis, to ensure they meet industry standards and expectations. We would welcome discussion with any treating specialist or medical professional with expertise in multiple sclerosis, about any view they may have about the fairness of the definition."