Life Insurance. What you need to know about. Mucopolysaccharide and related diseases including Fabry disease

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1 Society for Mucopolysaccharide Diseases MPS House, Repton Place White Lion Road, Amersham Buckinghamshire, HP7 9LP, UK Mucopolysaccharide and related diseases including Fabry disease What you need to know about Life Insurance Registered Charity No Registered as a Charity in Scotland No. SCO41012 Registered as a Company limited by guarantee in England & Wales No

2 Introduction This information sheet has been produced by The Society for Mucopolysaccharide and Related Diseases (MPS Society) as a guide to obtaining life insurance. It is intended that this information sheet will be relevant to those with a variety of MPS and related diseases, including Fabry disease, as well as any professionals supporting individuals with obtaining life insurance. Where there is a difference between any of the diseases these sections will have a separate entry. This information was correct at the time of going to print and is intended as a guide only. It does not replace the need for individuals to seek independent expert advice. Acknowledgement This information sheet has been peer reviewed by the Association of British Insurers and the Genetic Alliance UK to whom we acknowledge our thanks for their support. Contents Section 1 Inheritance 1.1 Autosomal Recessive Inheritance 1.2 Sex-linked Inheritance Section 2 Genetic Testing and Insurance Section 3 What are genetic tests? 3.1 MPS diseases 3.2 Fabry disease Section 4 Do I have to take a genetic test? 4.1 MPS diseases 4.2 Fabry disease Section 5 Section 6 Section 7 Section 8 Section 9 How are the results of genetic tests interpreted? What if I am receiving treatment? What if I am not receiving treatment? What if I feel I have been treated unfairly? How do I complain Contact details

3 Mucopolysaccharide and Related Diseases What you need to know about life insurance 1. Inheritance 1.1 Autosomal Recessive Inheritance All MPS and Related Diseases (apart from Hunter and Fabry) result from a defective gene found on one of the autosomal chromosomes (one of the 22 chromosomes which is not sex linked). A child can only be affected if both parents are carriers. With each pregnancy the chances of having an affected child are as follows: a 25% chance of having a child (of either sex) who is unaffected and is not a carrier a 25% chance of having a child (of either sex) who is affected a 50% chance of having a child (of either sex) who is a carrier Each pregnancy will have the same statistical chance. 1.2 Sex-linked Inheritance MPS II Hunter disease and Fabry disease are genetically inherited conditions and are linked to the X-chromosome. Females have two X-chromosomes in their cells Males have one X-chromosome and one Y-chromosome In Fabry Disease the faulty gene is on the X-chromosome. A woman with Fabry disease on average will therefore pass the affected gene onto half of her children. Fathers on the other hand, can only pass the affected gene onto their daughters, all of whom will be affected. Hunter Disease is an X-linked recessive disease (also called sex linked) like haemophilia. Females may be carriers, but except in very rare cases, only males will be affected. If a woman is a carrier for Hunter disease, there is a 50% risk that any male born to her will have the disorder. MPS and related diseases are diagnosed by means of a genetic test. If an individual has received a positive diagnosis following a genetic test, other members of their family may also be at risk of having inherited or inheriting the disease or passing it on to an unborn child. 2. Genetic testing and insurance The Government and the Association of British Insurers have agreed a Concordat (high level agreement) on the use of genetics in insurance underwriting and Moratorium (voluntary ban). This agreement ensures fair rights of access To insurance for consumers by allowing people to take out substantial amounts of cover without having to disclose the results of predictive genetic tests To relevant information for insurance companies to enable fair assessment and risk pricing in the interests of all past, present and future customers. The Moratorium allows customers who have taken a predictive genetic test to obtain significant levels of cover without disclosing the results of that test. Insurers are only allowed to take into account predictive genetic test results for certain types of insurance

4 policy, and only those tests which have been approved by Government. At the present time the only test approved is for Huntington s Disease for life insurance cover of more than 500,000. (This is not an MPS or Related Disease) For all types of life and health insurance, whether or not you get cover, and the terms you are offered, will depend on: Your health and medical history (including diagnostic genetic test results) Your family history Your lifestyle for example, whether you smoke and your occupation. By giving the insurer a full medical history of yourself and your family this does not mean that you will automatically be turned down or charged a higher premium Each case must be judged on its own merits taking into consideration all available information including medical history What is still unclear, however, is how important genetic tests will be in establishing actuarial risk : Insurance is worked out by calculating risk. In order to stay in business the insurer needs to balance the premium against the chance of an individual making a claim In principle, the higher the chance of you making a claim the higher your premium will be 3. What are genetic tests? There are two different types of genetic test. Predictive genetic tests: If a particular disease runs in the family and you are offered a test before you show any symptoms, this is a predictive genetic test Diagnostic genetic tests: If you are showing symptoms of a particular disease and you are offered a test to confirm that you have a condition, this is a diagnostic genetic test 3.1 MPS diseases With most MPS diseases a positive result to a diagnostic genetic test means that an individual is symptomatic but is not an indication as to how severely that person will be affected. Where there is a spectrum of severity, such as with MPS II, a diagnostic test in itself cannot indicate how severely an individual will be affected. Should an individual reach adulthood and life insurance becomes more of an issue, it will be clearer how severely affected the individual is. This will help the insurer to reach a fairer decision. 3.2 Fabry disease A positive result to a predictive test means that an individual has the mutation for the Fabry gene but it is not an indicator as to whether or not symptoms will develop. A diagnostic test in a symptomatic individual itself cannot indicate whether or not that individual will develop further symptoms, or how severely they will be affected. The insurer should take into consideration all factors including age, severity of current symptoms and any information from a medical specialist before making a decision.

5 4. Do I have to take a genetic test? No. Insurers cannot ask you to take a predictive genetic test for the purposes of taking out insurance. You also don t need to disclose that you have had a predictive genetic test for MPS or Fabry disease. This is because only Government approved tests can be used, and there are currently no approved tests for MPS or Fabry diseases. If asked, you will have to disclose the results of a diagnostic genetic test and any relevant family history and medical treatment that you are receiving as a result. If you have any test results showing that you do not have the genes for MPS or related diseases, you may wish to voluntarily disclose this information to your insurer. That is up to you to decide. You also do not have to disclose the predictive genetic test result of another person, such as a blood relative. You do however have to disclose family history that you know if you are asked. 4.1 MPS diseases An individual cannot be asked to take a genetic test for an MPS or related disease BUT You must be honest about the diagnosis you have, including from a diagnostic genetic test, and the likely progression of your condition 4.2 Fabry disease An individual cannot be asked to take a genetic test for Fabry disease and, at present, the results of any predictive genetic test for Fabry disease do not have to be declared BUT You must declare any family history and be honest about the likelihood of inheritance if you are asked about it. If you have any test results that show you do not have the mutation and therefore will not develop Fabry disease, you may choose to declare them, as this might be in your favour With regard to existing life insurance policies held, the insurer does not need to know if an individual has had a genetic test as long as the cover stays in force. Read the small print! Check your existing policy for details or contact your insurer for advice. 5. How are the results of genetic tests interpreted? Interpreting genetic tests is difficult as there are numerous genetic conditions and varieties of inheritance. As a positive result may not be indicative of how severely an individual will be affected it is important to explain this to the insurer. It is likely that without this information insurers will see the test results as simply positive or negative (100% or 0%) and therefore may treat all positive diagnoses the same.

6 Therefore it is up to you, with the support of your specialist, to explain the reality of your condition to the insurer. Without all the information, the insurer cannot make a balanced decision Different insurance companies have different risk appetites, and therefore may be more or less likely to provide you with cover. If you need help identifying an appropriate insurance company, you can talk with an independent financial adviser (IFA) please see the Association of Independent Financial Advisers ( for more information about IFAs and how to get in touch with one. It is possible that your insurer will not have come across MPS diseases before and their initial reaction may be uncertain If you feel they are being too cautious you may ask for your situation be discussed with a specialist senior underwriter with responsibility for genetics before getting too involved in the process Asking a medical specialist for support may offer further reassurance to your insurer 6. What if I am receiving treatment? Explaining current treatment is essential as, it shows the condition is treatable. If an individual is receiving treatment, such as Enzyme Replacement Therapy, this should be included in any information given to the insurer, and they may ask for a letter from a medical specialist for further information on the treatment and its efficacy. 7. What if I am not receiving treatment? If an individual is symptomatic and not receiving any treatment this does not mean insurance will automatically be refused. The insurer should take all aspects of the individual s situation into consideration, including their age, severity of symptoms and medical history, and should offer alternative options, such as shorter-term life insurance or an increased premium. 8. What if I feel I have been treated unfairly? If an individual feels that they have been treated unfairly, for example, they have been refused insurance completely or had their premiums increased for no apparent reason, they are entitled to ask for a detailed explanation. For a refusal based on a misunderstanding of the implications of a rare condition, you can ask a medical specialist to explain the condition and the efficacy of any treatment being used Insurance companies should provide written reasons for any higher than standard premium or rejection of an application on request. They should not ask your GP to explain their actuarial or underwriting decisions. They may ask your GP to explain certain medical issues.

7 Remember You should always receive a full explanation for the decision and should normally be offered an alternative option 9. How do I complain? If you have a complaint, first contact your insurer who will try to sort it out. The Key Facts or Key Features leaflet you get when you take out insurance has details of the insurance company s complaints process. Otherwise, ask them about their complaints process. If, after you ve followed that process, you remain dissatisfied, you can: Take complaints about the operation of the Concordat and Moratorium on Genetics and Insurances to the Independent Arbitration Service. This Service is administered by the Chartered Institute of Arbitrators and free to complainants IDRS, Chartered Institute of Arbitrators, 24 Angel Gate, City Road, London EC1V 2PT. T: info@idrs.ltd.uk Website: IRS Genetics Complain to the Financial Ombudsman Service if you have a complaint about a contract that has been concluded. The Service is free to complainants. Take legal action against the insurer. If you feel that you have grounds for a complaint and would like to follow the complaints procedure, this is explained in a free leaflet from the ABI. For details on how to obtain this information please see Contact Details If you require support in writing your complaint please contact the Advocacy Support Team at the MPS Society. CONTACT DETAILS The Association of British Insurers (ABI) Tel (Publications) Tel (Protection Team) Government s Genetics and Insurance Committee Genetic Alliance UK Tel contactus@geneticalliance.org.uk