Insurance and legal matters

Any serious health condition or disability can affect you in terms of certain types of insurance, so it makes sense to find out the facts and make sure you are adequately covered. There are also legal matters to consider if you have Huntington’s disease or are caring for someone who has it.


The insurance industry is based on risk. It aims to offer a fair service based on the risk level of any applicant. The amount you pay for insurance is affected by many factors such as your age, whether you smoke and any other known risk factors, including your family history.

When applying for insurance, all questions need to be answered honestly, otherwise a claim will not be valid in the future. While insurers do ask about family history, there are rules in relation to asking about genetics.

In 2019 the Association of British Insurers issued a new code which insurance companies have to follow in relation to genetics and insurance.

The key obligations of insurance companies during the moratorium are that no insurer will request an applicant to take a genetic test in order to take out insurance and, in relation to Huntington’s disease, they can only ask for a test result if you are applying for:

  • Life insurance in excess of £500,000
  • Critical illness in excess of £300,000
  • Income protection in excess of £30,000 per annum. 

Very few people wish to take out insurance at these high rates.

This means that people who have a family history of Huntington’s are likely to have to pay higher premiums than someone who doesn’t. If someone has a positive test, the rates will continue to be high but if they have a negative test they will be able to take out a new policy and benefit from the lower premiums. If you have had the test you do not have to tell your insurers this – they only need to know your situation when you took out the policy.

In relation to mortgages, while some providers may recommend that people take out life cover when taking out a mortgage, this is not usually a compulsory requirement.

Travel insurance

If you have a heath condition or a disability – a ‘pre-existing condition’ – you need to take particular care when shopping around for travel insurance.

If you don’t tell your insurers about having Huntington’s when asked if you have any ‘pre-existing condition’, your insurance could be invalid.

You should also check that the policy covers any equipment you need to take with you.

More information on this issue and other aspects of purchasing insurance if you are ill or disabled is available from the Money Advice Service.

Legal matters and power of attorney

One day it may not be possible to manage your own financial or welfare matters without help from someone else.

If you have Huntington’s and are beginning to find it difficult to manage your financial or legal affairs you can appoint someone you trust to help you. For example, for benefits help you could ask the relevant benefit department to let you have a named person act as your ‘appointee’. This person will then liaise with that department on your behalf.

If you are able to manage things for now, you may still want to put something in place for the future, so that someone you trust can make certain decisions for you. This is called granting Lasting Power of Attorney (LPA).

There are two types of LPA – Power of Attorney for Property and Financial Affairs and Power of Attorney for Health and Welfare. The government guide on how to set these up is available here.

  • Power of Attorney for Property and Financial Affairs
    If you want to, you can ask someone to start taking over your property and financial affairs while you still have capacity. They can then continue to use this power to manage your affairs, should you be unable to in future.
  • Power of Attorney for Health and Welfare
    This is only used if someone has lost capacity to manage their own health and welfare. It enables someone to make decisions affecting your care, for example about different kinds of treatments you might have, or whether you might need residential care.

The Office of the Public Guardian (OPG) protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance and you can find out more about this here.