The information on insurance which I can give you is limited by law as I am not registered with the Financial Services Authority to give advice on the subject, says Don Tendell, Treasurer of the Gauchers Association. 'I must recommend you to take advice from a registered person before you enter into any contract with insurers or pension providers.'
There are four areas of insurance where people with Gaucher disease and their families may be interested:
The vast majority of insurers are registered trading companies. Their purpose is to make a profit by taking a risk but this risk is reduced by defining the possibility of loss through statistical analysis and more importantly by not accepting what looks like bad risk business. At the moment there are too few sufferers of Gaucher disease for insurance companies to define how much of a risk they are, especially as there is now evidence that treatment works. I am talking here about Type 1 Gaucher Disease and not Types 2 and 3.
Life Insurance
Here insurers are interested in the person who is likely to live throughout the length of the insured term, that means collecting the premiums with no payout.
Insurers will, as a norm, ask about your current health, life style and some information on family history eg parents, grandparents, uncles, aunts, brothers and sisters. How far they go into this depends on age, amount of insurance cover required and the term (length) of the insurance.
The family history and life style are important in assessing risk and some believe this is as far as the inves-tigation should go. All these factors are taken into account and may be extended by requesting that the person to be insured should undertake a medical examination by a selected doctor.
Under a five year moratorium from November 2001 to November 2006 insurers may only require a genetic test if Huntingdons disease is present within your family.
You must be honest when completing the proposal form for failure to do so will invalidate the policy. Ignorance of Gaucher disease is usually the biggest problem so don't be afraid to inform those who are helping you to obtain the insurance about it and certainly expect insurers to ask for a doctor's medical report.
Remember the most knowledgeable doctors in the country on the condition are treating us (if they are at one the national Gauchers Centres) and their opinion will help you. Some insurers, particularly those carrying out direct sales, have designed their products to be cheap for a particular market and will not take business that has any risk or needs investigation. Don't worry if such insurers reject you, it's not personal.
Travel Insurance
Cheap and cheerful is the catch phrase here. The insurer probably receives only 50p to a £1 a day for your holiday insurance. Everyone is pooled for this type of insurance and considering the amount received the insurer will not wish to make inquiries or carry out medical examinations. However, the insurer usually protects itself with the magic words: 'We shall not make payment in respect of a claim arising from a pre-existing medical condition'.
An insurer cannot be expected to cover you for the treatment of Gaucher disease itself or for treatment received as a direct result of Gaucher disease whilst on holiday. But, we would expect our holiday insurer to meet the costs of other unexpected and unrelated problems. To avoid problems, read the small print of the policy.
Travel agents tend to want you to tick their insurance box and provide the wording of the policy later. This is no good to people with Gaucher disease. You must read the policy, contact your insurer, disclose any problems in order to request cover. Cover will be provided by some insurers if they receive a letter from your GP stating the you or your child are fit to travel, in other cases a form completed by your doctor may be required.
Even suggest to the insurer that you are prepared to provide such a report or letter if necessary. Don't go to Tesco, Sainsbury etc to purchase travel insurance the day before you leave and expect cover. Allow time to sort out any problems. Think about an annual policy beforehand, organise cover, and then go to the travel agent or online to book your holiday. Insurance first, holiday second: otherwise you may find yourself in trouble. It is not just Gauchers patients that suffer in this way.
My own GP put up a notice recently about a patient who went on holiday failing to disclose a problem. The patient now has a £5,000 debt with the insurer refusing to pay.
Pensions
Pensions are usually a little bit easier. Why? You have the pot of gold and insurers believe they can keep it because you have a medical condition! I realise it is not as straightforward as that but remember I am a bit cynical. I have a personal pension plan, my life insurance cover is limited because they don't think I am going to live very long. Will they pay me an enhanced pension? No, you may have a normal life span! Believe me, I am going to collect my pension forever and a day.
Long-term Care Insurance
Long-term care insurance is new and expensive. It provides cover for when you are unable to care for yourself and will pay your nursing home care costs. It is designed to protect your wealth from being used up through long term care. It is paid for by way of a large lump sum depending on age but as it is new with only a general pool calculation, no particular reference to the individual's circumstances are made.
Forum for Genetics and Insurance
I represent the Gauchers Association as a committee member on the UK Forum for Genetics and Insurance and as a panel member for the Human Genetics Commission. At a recent meeting of the UK Forum, a view was given by a guest speaker to the approach in Australia where medical insurance tends to be common rated, that is they take the population pool as a whole with less discrimination to specific groups.
Where we are going in the future is still up for grabs but I am hopeful that a fair compromise is reached because insurance is a key part of our life and becoming more and more significant as the government wishes us to provide for our own future in an environment where life expectancy continues to rise
Source: Gauchers News March 2004.
© Copyright
Gauchers Association 2004.