A life sentence as high-risk

Insurance: Hilary Freeman has multiple sclerosis. Companies have tunnel-vision

This is the story of how I discovered I might have an incurable condition, not from my GP or neurologist, but from an insurance company. Two years ago, I developed blurred vision in my right eye. I put it down to eye-strain. The eye hospital diagnosed "optic neuritis" and sent me home with the advice, "It will go away on its own." It did.

When, a few months later, I applied for life insurance cover for a mortgage, I was turned down flat. Frantic calls to my GP revealed that optic neuritis is often associated with multiple sclerosis, though not in all cases. A neurologist said I did not have MS; the insurance company did not waiver. I wrote rude letters threatening publicity. I got life cover.

As it happens, I have since gone on to develop MS. Aside from a few initial sensory symptoms, I am outwardly healthy and active and able to go about my business as normal. But to the world of insurance, I am now a "high risk". When I was diagnosed with MS, I learned an unexpected lesson - the disease may not kill me, but the premiums will.

Ruth Carlyle, manager of the MS Society's education and information services, says underwriters' reliance on rigid "mortality tables" means people with MS may have difficulty getting life cover and are likely to be charged high premiums for travel and motor insurance. It it almost impossible to buy permanent health insurance.

The science of underwriting does not allow for individual exceptions to the rule, and yet MS - and many other conditions - are characterised by their very individual and unpredictable nature.

Mention MS, and most people will think of high-profile, severe cases, such as Jacqueline du Pre, the cellist who was crippled and eventually killed by the condition. But the majority of MS sufferers have the "relapsing- remitting" type, which is characterised by attacks followed by long periods of remission, when they have no symptoms at all.

Of the estimated 85,000 people in the UK with MS, approximately 20 per cent have a "benign" form which involves only one or two mild initial attacks, followed by complete recovery. Although neurologists are unable to foretell how MS will affect a particular patient, underwriters assume the worst possible scenario and load premiums for all sufferers accordingly.

The tunnel-visioned approach of underwriters affects sufferers of other conditions, such as cancer, coronary heart disease and diabetes. Roger Smythe, managing director of Mencap City Insurance Services, which specialises in providing insurance for charities and individuals, illustrates this with the case of a businessman with cerebral palsy: "The businessman was refused a discount on a holiday because he was turned down for the travel insurance that you had to buy with the holiday.

"The travel agent told the insurance company that the businessman `could hardly speak,' so the underwriter assumed he was unfit to travel. If the underwriter had asked more questions, he would have discovered the businessman was highly intelligent and used to travelling abroad."

The Disability Discrimination Act, which came into force in December, does not prevent insurance companies from charging higher premiums for people with medical conditions and disabilities, but they are now required to justify them with statistical evidence, such as medical reports or research.

Mr Smythe advises that if you suspect you are the victim of unfair discrimination, you should ask your insurance broker or the Insurance Ombudsman to challenge the decision. The discrimination may be reversed by a more senior underwriter, or you may have to take your case to court.

It's not all bad news. Several insurers - AGF, Churchill and Commercial Union, among them - are reviewing their policy wordings and ratings systems in the light of the Disability Discrimination Act. And there are a growing number of companies and financial advisers which specialise in providing insurance for people in high risk groups.

Flexibility is not a matter of political correctness. It is a necessity. With the advent of genetic testing, many more people face of the prospect of being labelled a "high risk". One may have the condition for life, but it doesn't have to be a life sentence.

The MS Society produces a free 13-page fact-sheet on "Insurance and MS," including information on policies and a list of "more approachable"' companies. Write to: MS Society, 25 Effie Road, Fulham, London, SW6 1EE. Helpline No: 0171 371 8000. Mencap City Insurance Services: 0121 233 2722. British Association of Cancer United Patients (BACUP): 0800 181199 - information for people with cancer, including on insurance matters.