Sunday, 1 February 2015

ClinicSpeak: are researchers giving insurance companies ideas?

How paternalistic is your neurologist? #ClinicSpeak #MSBlog #MSResearch

"The study below demonstrates what we already know; people presenting with ON, ONers, are likely to develop MS and hence become disabled and require DMTs for MS. Approximately 70-80% of ONers will develop MS hence these figures are not surprising. The author's conclude that these results my influence insurance underwriting. I think this is unlikely that boat floated a long time ago."


"Let me tell you an anecdote. When I arrived in the UK in June 1993 I started doing Professor W. Ian McDonald's neuro-ophthalmology clinic at Moorfields Eye Hospital. It was only my second or third clinic and I saw a young woman, who was lawyer working in the City, as a follow-up patient. She had been diagnosed 6 months earlier with optic neuritis. She took my head off because the neurologist who had seen her in the clinic 6 months earlier had not told her about the link between optic neuritis and MS. She learnt about the link between ON and MS when she got back a rejected life and critical insurance application. The Insurance company had listed MS as an exclusion for the necessary critical illness and life cover she needed. As a results of not being able to get insurance she was unable to get a mortgage for a property she wanted to buy. The underwriters were already treating optic neuritis as MS back in 1993 and I suspect they had been doing this for a lot longer than this."

"This poor woman was devastated and furious that a consultant neurologist would hide such vital information as the link between ON and MS. In 1993 paternalistic medicine was the norm. Please remember that 1993 was very early on in the life of the worldwide web; we had been using the internet for a few years and the web had only just been launched (1992). The web was very primitive and mainly for geeks. 1993 was pre-Google and Altavista the first widely used web search engine had not been launched either; Altavista only went live in 1995. This lady had been let down by her doctor and was left to find-out about the link between ON and MS herself. Her own research about MS must have devastated her; back in 1993 we did not have any DMTs."

"Do stories like this still happen today? Almost certainly but thankfully they are less common. The medical profession still likes to control information or present it in a way that is more acceptable to MSers. I still see large number of MSers who are diagnosed with benign MS early on in the course of their disease when the use of the term benign should be limited to a retrospective diagnosis. Even when used retrospectively the majority of benign MS goes on to be non-benign. MSers still get told that they can lead a normal life and that they should go away and live life as normally as possible. I often get MSers referred to me for DMTs when they have had the disease for 5-7 years and have had several major relapses, so that by the time I see them they already have fixed disabilities. The message of treat early and effectively to prevent damage and to delay the onset, or prevent, SPMS has not gotten through to a large number of general neurologists. Some general neurologists still hold the opinion that DMTs are not effective enough to warrant the NHS paying for them. The latter attitude is a legacy in the UK of NICE saying no to interferon-beta and GA. The NHS Risk Sharing Scheme has now shown that interferon-beta and GA are cost-effective at the price the NHS pays for them and that since NICE said no to them we have had 5 other drugs (natalizumab, fingolimod, teriflunomide, alemtuzumab, dimethyl fumarate) that have all been green-lighted. We are now live in a new era; we have effective treatments for MS and knowledge has been democratised. We can't tell MSers half-truths and expect them to accept them." 

"Enough said just as video killed the radio star, Dr Google is killing paternalistic medicine. It is very unusual now for MSers not be well informed about their disease from the own browsing of the web. Knowledge is power you need to use it to get what you want and need."


Horwitz H. The prognosis for patients suspected of optic neuritis. J Insur Med. 2014;44(3):189-95.

BACKGROUND: Optic neuritis (ON) is often the first symptom of MS. However, a broad range of conditions can give rise to or mimic ON. The objective of this study was to investigate the social and health related consequences of ON.

MATERIALS AND METHODS: During the period 2003-2011, 436 patients were examined for ON. The primary endpoints were time to disability pension and immunomodulatory treatment against MS. Patients were followed-up through the Danish the Registry of Deaths and Migration until July 2012. Statistics Denmark provided information on disability pension. Furthermore, data was merged with the Danish MS Treatment Register.

RESULTS: After 9 years, 24.9% were disabled and 47.7% had initiated treatment against MS. The risk of disability was five times higher than in the background population. The risk of becoming a disability pensioner was highest among patients with paraclinical findings compatible with MS.

CONCLUSION: As expected, MS is the leading cause of disability after ON. This study revealed an association between the paraclinical findings at symptom onset and social outcome. These results may influence insurance underwriting.

5 comments:

  1. Neurologists are not the only sector that can be paternalistic...it is an overarching ideal throughout a particular large MS advocacy group in America. Reporting the same MS prevalence numbers for well over a decade, veiled and carefully selected verbiage to describe disease outcomes, and ubiquitous rhetoric that attempts to soothe rather than empower affords an altogether different type of disability that is rampant throughout the MS community, and those who care for us. Don't infer more to this observation than stated, they have done hugely important work that has directly and indirectly helped 100's of thousands touched by the disease.

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  2. Re "Knowledge is power"
    This phrase is used so often - here's my take on it (for what it's worth....)
    Knowledge is power when those who have the knowledge fail to share it with those that that knowledge could empower.

    "you need to use it to get what you want and need."
    It has been said by many on this blog that they do not feel empowered, just depressed by the knowledge that is shared. Surely it is far better to have knowledge, even if it is not always positive? Without having that knowledge you have no way to decide what it is that you want or need, or ability to focus on what may be feasible or achievable.

    Thus it is the sharing of knowledge that is empowering, and it is withholding knowledge that vests power in those who choose to not to share it with those it could empower.

    As a patient I have a right to decide what knowledge I wish to acquire and what I want to do with the knowledge I acquire, it should not be for others to decide whether I should be allowed access to the knowledge that they hold. The days of "me doctor, you patient" are gone, as they should be, and any subscribers to this archaic attitude need a good kick up the backside.

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    Replies
    1. "Knowledge is power when those who have the knowledge fail to share it with those that that knowledge could empower." LOVE that sentence!

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  3. Google has bit of a life saver for me in terms of understanding my condition, and importantly learning how to manage it.
    Without Google I would have remained misdiagnosed
    Without Google I would not have heard about DMT's
    Without Google I would not have got on a DMT
    Without Google I would not have known I needed to inform the DVLA
    Without Google I would not have known MS nurses or charities existed
    Without Google I would not have known what I was dealing with!

    I can cope with the disease but have found the lack of forthcoming information from my MS team difficult to deal with.

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