What is Huntington's disease?

Huntington's disease is an inherited condition that damages certain nerve cells in the brain.

This brain damage gets progressively worse over time and can affect movement, cognition (perception, awareness, thinking, judgement) and behaviour.
Early features can include personality changes, mood swings, fidgety movements, irritability and altered behaviour, although these are often overlooked and attributed to something else.

Both men and women with a family history of Huntington's disease can inherit the condition. Symptoms usually start to appear during adulthood.

Arranging protection with a family history of Huntington's disease

We are increasingly being approached by people asking us if they are able to secure life insurance and, if possible, critical illness insurance, given that they have a family history of Huntington's disease. Many had made an application themselves, but were either declined or the premiums they were offered were unaffordable.

As independent an adviser, we understand that each person's situation is unique. We discuss each customer's background and that of their family member who has been diagnosed with Huntington's disease.

We always complete thorough research to assess which options are available to them (and which options are not) and, where possible, we will provide a clear indication of the final (underwritten premium). This information will allow a client to decide whether to apply in the first place, and therefore help to avoid wasting time and avoiding any unwelcome surprises.

We assess each person on their own merits and it will depend upon their age and the age (of diagnosis) of their family member who has been diagnosed with Huntington's disease.

Case studies provided by Future Proof Insurance

Case Study 1: A 35-year-old male, mother diagnosed aged 52

We were approached by a 35-year-old man who was hoping to arrange life and critical illness cover. His mother was diagnosed with Huntington's disease when she was 52. He said he had already made an application with an insurer who we also have access to, but his application had been declined.

Our adviser undertook thorough research of the market and helped our customer secure life insurance. The basic premium was loaded by 250%, because he wanted cover over a term longer than 18 years (the loading would be 150% if the insurance term is less than ten years).

This meant he was able to obtain £160,000 of cover over a term of 34 years for a premium of about £40-£42 per month.
Not every insurer would offer these terms (this was the best offer available).

Some would increase the premium by more and others may even decline an application.

In this case he was not able to obtain critical illness cover (until he reaches the age of 50), unless he had undertaken a genetic test and was prepared to volunteer the results of that test with the insurer (insurers are not allowed to request this information even if it is available).

Case Study 2: A 40-year-old female, father diagnosed aged 50

Our customer has two dependent children plus a mortgage that has 22 years left on the term. With this in mind, she wanted to ensure that a policy is in place to offer financial security to her family should she pass away. Our client had decided not to take the genetic test to see whether she is predisposed to suffering the medical condition herself.

She had tried to obtain a policy by searching the internet but found that problems occurred as soon as she disclosed that her father was diagnosed with Huntington's disease when he was aged 50: the premium that had been quoted was well outside her budget.

We explained that all insurance companies will add a ‘loading' on top of the quoted premium due to her family medical history. When searching the internet herself, the lowest premium was £17.20. However, having made the disclosure of her family history of Huntington's disease the insurer increased the premium by an additional 300%, resulting in a monthly premium of £68.80.

We recommended an insurer who offered a slightly higher quoted premium of £18.70 but with a smaller loading of 150% resulting in a final premium of £43.00. Our advice resulted in a saving of £6,800 over the term of the policy.

Case Study 3: A 36-year-old female, father diagnosed aged 61

Our customer was interested in life insurance, critical illness cover and income protection. Her father had been diagnosed with Huntington's disease five years previously (when he was 61 years old), and she was struggling to find an insurance provider to meet her needs.

We discussed her situation with several insurance companies and found that some would offer life insurance only and would increase the premium by an additional 300%. However, after additional discussions and research we were able to find two providers who would offer the full cover on standard terms. We then provided our client with detailed reports so that she could make an informed choice between companies to ensure that she obtained the most comprehensive critical illness cover within her budget.

We arranged a level term life and critical illness policy with a sum assured of £250,000 which will provide cover over a term of 24 years (until she is 60) for £77.24 a month. We have also arranged an IP policy with the same insurer with a monthly benefit of £2,741 (after a waiting period of six months) which will provide index-linked cover until she reaches the age of 60 for a monthly premium of £37.24.

Huntington's disease facts *

• It was previously thought that four to six people in a population of 100,000 were affected by Huntington's disease. However, UK research carried out in 2012 found the actual figure for those affected by the condition to be about 12 people per 100,000.
• It is thought that the number of people who have the Huntington's gene and are not yet affected is about twice that of those who have symptoms.
• Juvenile (children's) Huntington's disease develops before the age of 20. Only 5%-10% of people with Huntington's disease develop it at a very young age, and the pattern of features may be different.

* According to the NHS website