Helping patients with genetic disorders to access life insurance products fairly

The Genetic Interest Group (GIG), the UK alliance organisation for all people affected by genetic disorders, has been working in collaboration on a pilot project to help those affected by rare conditions to access life insurance products in a fair and equitable manner.

GIG has been working with the insurance industry for a number of years to try and establish common ground and to work out how we can help patients with genetic conditions to obtain the cover they need without having to pay disproportionate premiums. People have highlighted the difficulties and obstacles that they face in obtaining insurance and they are keen to try and find a more consistent and reliable approach.

Clearly some patients affected by some genetic disorders will not be eligible for insurance for various reasons; however there are many others who, due to their treatment programmes, have their condition well managed and under control. The Insurance Template Pilot Project is one of the outcomes of these discussions.

Helping to Provide Tailored, Summarised and Needed Information

 One of the difficulties that GIG often hears is that insurance companies do not have any prior knowledge of the genetic condition the patient is affected by, consequently it can take a long time as further evidence is required by the insurance companies to enable them to make a decision as to whether or not insurance can be granted. This leads to frustration on all sides and also in time wasted, gathering information on the potential client that may not be relevant to the insurance they are requesting.

We knew there had to be a way to streamline the information that was being sent to and fro and that this would benefit both the patient and the underwriter, saving money and time for both parties.

Working with four patient support groups where we knew that patients should gain insurance - even if, in some cases, at a slightly increased premium (Cystic Fibrosis, Haemochromatosis, Endocrine Neoplasia Disorder (type 2a), and Gauchers Disease (type 1) alongside medical professionals and insurance underwriters, GIG developed a template document that could be used to accompany an application for life insurance.

This document is two pages and contains general information about the condition for example, potential complications and prognosis that can't be amended by the applicant; as well as specific information, prognosis of applicant, recent interventions, and potential complications for this person. The form needs to be signed by a relevant health professional who cares for the patient and by the patient themselves.

Ensuring that the wording was acceptable to both patients and professionals took some time. We needed to strike the right balance of providing enough information to avoid large medical files being requested and also provide standard information that patient groups and insurers would be happy with. We then carried out an internal pilot with underwriters from Swiss Re and following this made some final adjustments to the templates.

We then piloted two completed mystery shopper templates from each condition with insurance companies to see how they would work in practice. This work was completed with the help of the Direct Office Underwriting Group who kindly asked their staff to use the forms. We have had some very useful feedback in the last few weeks, including:

- 'The usefulness from an underwriting perspective is very good, but will this type of information always be present?'

- 'If I was satisfied with the source of the information provided for these particular case studies, then I think we had enough information with which to underwrite.'

- 'I like the idea of a description of the condition with potential complications and further information sources'

-'The specific questions were sufficient to make a decision on the cases provided.'

As well as some food for thought on what we could do next and how we could improve the templates:

- 'How do we know whether the form has been completed by the client and then signed by the GP/client or completed by the GP or a combination of both??'

- '[I] would incorporate date of diagnosis/date of first symptoms from section 1 into section 3 to keep all medical questions together.

- '[It] would probably be fairer to change this question to ask for current complications (rather than potential complications) only.'

Next Steps

 So what next? How can we get the templates into every day use? We intend to seek endorsement of the template from organisations such as the Association of British Insurers (ABI) to encourage insurers who belong to the ABI to make use of the information provided within the template. We are conscious that more work is also needed, as this pilot project has only addressed some of the needs for life insurance and we know that those affected by genetic disorders have issues with other areas of insurance, such as travel insurance.

A New Project

 GIG is now seeking further funding for the next phase of the Template Project. We would like to carry out an action research project to work on a more formal evaluation of how patients with genetic conditions interact with the insurance industry and what their experiences of this are. For our new project we would like to look at other insurance products including travel and critical illness to see how the use of templates, or other methods can help patients to access these products. As many products are now sold online, we will need to work with both the insurance companies and the companies who provide their online application services. GIG plans to carry out a survey of all its members and host workshops with patients, health professionals and insurance staff. We will then produce patient friendly information on insurance and genetics. GIG will work with an academic unit to help ground the work in the relevant theoretical framework. The project would also have an active Steering Group.

I would like to say many thanks to the working group for the template project who put in so much effort and time to the creation of the Insurance Templates. Jerry Brown (Swiss Re), Kit Farrow (Haemochromatosis Society), Teresa Glen (RPS), Tessa Homfray (St George's Hospital), Amy Hunter (London IDEAS Genetic Knowledge Park - and now at GIG), Maggie Ponder (GIG), Cathy Toomey (Kiln Plc), Richard Walsh (previously of the ABI) and of course to the four patient groups who also helped a great deal. AMEND - the charity for patients with multiple endocrine neoplasia disorders, The Cystic Fibrosis Trust, The Haemochromatosis Society, and The Gauchers Association.