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Until the penny drops

Colleagues from the Huntington’s Disease Association of England and Wales and I attended Parliament on 21st February, to meet Treasury Minister John Glen to discuss the difficult issues around access to insurance for people with a genetic risk for HD.

I know it’s an issue which provokes strong feelings in the HD community; getting life insurance is just one more battle in your personal war with the disease.

The Insurance Industry works, not on the basis of rights, but on the assessment of risk and it’s driven by the decisions of actuaries who spend their working lives calculating the statistical probability of you or I developing a given health condition. The decisions are inevitably weighted in favour of insurance companies; they are, after all, in the business of making money. Trust me when I say HD is not alone in experiencing the blunt end of this process.

Fifteen years ago my partner Raymond and I applied for joint life insurance and because we are both gay men, the process demanded we took an HIV test. It was an intrusive, embarrassing and unnecessarily clumsy piece of bureaucracy which failed to recognise a simple truth: membership of a particular group does not reliably predict individual risk. Neither Raymond nor I were any more at risk of contracting HIV than anyone else in the general population. By treating gay men differently than everyone else, insurers were guilty of discrimination. Fortunately, and largely because of the efforts of HIV charities, this practice has now stopped.

I believe people living with HD are also being treated differently than everyone else. I have to put my money on the table and state, this isn’t because insurers won’t insure people who have HD or demand higher premiums for those with the genetic risk willing to brave the potential rejection of the insurance market. Anyone with a health condition faces those challenges. What is crucially different for people who have HD is that they are not being offered the possibility of insurance against other health conditions like cancer or heart disease or diabetes and unfortunately having HD does not preclude you from developing any of those.

The insurance industry seems muddled in its understanding of the genetic risk of HD. We were contacted just this week by a young woman whose mother has HD. She hasn’t been tested and wants to put in place life insurance; several applications later she has not been accepted by a single insurer. Yet the simple fact is she is a healthy young woman who has only a statistical probability of having the HD gene and could easily be offered some level of insurance; even if she has to pay higher premiums, providing they are affordable, the resulting peace of mind is worth its weight in gold.

The solutions to this unacceptable state of affairs are varied. The insurance market itself could create more suitable insurance products and as I suggested earlier, they might limit cover to conditions other than HD. Products which cap the level of cover, even if at a higher cost, as long as they remain affordable would also make a difference. What might really help is if insurers invested time engaging with people living with HD and make an effort to understand the nuances of this complex condition so they are better able to make decisions. SHA and HDA think that the current moratorium on genetic conditions provides no meaningful protection and it hasn’t been reviewed since 2012. Undertaking a review in the light of what we have learned about the HD gene in the last six years would be a very positive step.

Is that enough? That largely depends on the response of the insurers and I think there is a more profound issue. The UK’s equalities law is a potent piece of legislation. Under it there is currently no protection for those with a genetic risk for HD. There is a legitimate debate about whether genetic status should be treated as a protected characteristic because insurance is only one area where people potentially face discrimination, but that’s another conversation. Meanwhile, for people with symptoms of HD there is protection, and the Equalities Act (2010) says, ‘You must not treat someone unfavourably because of something connected to their disability where you cannot show what you are doing is objectively justified.’ I am certain this would be a complex legal debate, but I think there is a testable legal principle. It is common for insurers to specify they will not cover suicide in people with depression and the same approach is applied to other health conditions, so why not apply the same principle in HD? I suspect it is because insurers have such a poor understanding of the condition they would rather simply be conservative.

The legality of their approach could be tested in two main ways. The Human Rights Commission could be invited to examine the issue and if they shared this view, could consider a test case. A private, civil action could be brought against an insurer who was deemed to have breached the equalities legislation, but neither route is straight forward.

Our best option now remains to engage with insurers and try to find a win win solution which results in better and fairer treatment of people with HD and in particular to press for changes to the Association of British Insurers voluntary moratorium. Perhaps in the midst of constructive conversations about the fairness of the existing system and the subsequent impact the penny might finally drop.

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