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UK legal, insurance, employment, benefits, statutory services Advice offered by HDA Moderators relates to current UK law or guidelines

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Old 04-01-18, 05:05 PM   #1
Trish
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Default Monday 8 Jan 2018 Parliamentary Debate Genetics and Insurance

Sadly it appears that the HD Community have not been utilised again and we may have missed a golden opportunity to make our voices heard.

Yesterday, when I was looking at Twitter, I saw a Tweet come up from the Scottish Huntington's Association.

Quote:
Our local MP @gavnewlandsSNP has tabled a Westminster debate about Huntington's disease and genetic discrimination on January 8. Contact your MP and get them to take part and support a change in the law.
After a bit of to-ing and fro-ing I managed to get confirmation the debate SHA were asking for a call to arms for does not just affect Scottish Parliament. It is a debate in the House of Commons covering UK genetics and discrimination.

I pointed out to SHA that the further information link (written for the media) made it seem like SHA were the only organisation providing support to people with HD. They have since apologised and amended the information to include HDA and the HDNI to cover UK support does not just fall to them.

This is part of what they originally wrote

Quote:
One of the country’s leading neurological support charities claims that genetic discrimination is one of the the last barriers to equality.
John Eden, chief executive of the Scottish Huntington’s Association (SHA), the only charity supporting people living with the degenerative brain condition Huntington’s disease (HD), said he was aware of several cases of people from HD families being refused life insurance and denied career opportunities based on their genetic status.

The new link, which gives more background and now mentions the other HD players, can be seen HERE

Having looked further into what is actually happening on Monday, the debate is listed as being in the Main Chamber. See HERE

I believe the Main Chamber is covered in total on the BBC Parliament Live Channel. View-able on TV or online HERE

I spoke to Gavin Newland's Office and his Clerk explained it is listed as an Adjournment where the debate is the last one up before The House adjourns for the afternoon/evening.

Our MPs are not obliged to sit in and listen or participate in the debate but can do so if they have an interest in the matter.

Gavin was actually writing his speech as I was on the phone to his Clerk and the Clerk said he would pass on anything I might want to e-mail. I have sent an e-mail thanking Gavin on behalf of the HD Community and apologising for the lack input but he will have been aware from mine and other's tweets there seems to have been very little notice for us to lobby out MPs and drum up an interest/support.

I don't think there will be enough time to galvanise everyone into writing to our MPs and providing evidence of discrimination etc but I have tweeted my own MP (see text below) and would encourage others to do so.

Quote:
@mtpennycook On Mon 8 Jan in Main Chamber @GavNewlandsSNP is down for the Adjournment to debate 'Insurance and genetic conditions '. #Huntingtonsdisease will be cited as a current discrimination example with wider ramifications. If in The Chamber I would welcome your interest.
I copied HDA into various tweets but have had no response, not even a 'Like'. I presume they were either unaware or uninterested.

My e-mail to Gavin is very short and does not do justice to all of you who will have had excellent discrimination evidence which would have been useful but I have given the text below anyway.

Dear Mr Newlands,

I spoke to [name of Clerk] earlier today who was very helpful in explaining the parliamentary procedure for Monday.


As discussed with [name of Clerk], I hope by mailing you I am able to add support and possible useful perspective for your Debate on Monday.


First of all, thank you for taking up the matter. May I apologise that there has not been an outpouring of support and data for you to underline the issue of genetic discrimination. However, it has only been very recent that I have been aware of the debate and I suspect I am only one of a handful of people with the time to take the matter up, HD being the beast that it is...


After I have sent this e-mail, I will be tweeting my own MP who is Matthew Pennycook the MP for Greenwich and Woolwich. I appreciate Twitter is not the best use of lobbying but with the lack of time I don't think I would be able to do justice to the cause by using the normal process.


If I can throw something into the mix please?


I wrote and self published a book in 2011 after the death of my husband from HD. He was only 49. Whilst I did not outline any personal experience of discrimination regarding insurance matters etc within it I did a poem based on stories I picked up from the HD Community. I have attached my poem [see text below] 'The Insurance Salesman' which summed up the situation in my eyes. Not just that there was discrimination based on fact but on assumptions that would not apply to others who may be even more likely to become unhealthy!


From my own experience my husband was untested at the time we needed a mortgage and I luckily managed to get one in my name only. This helped avoid his feeling he needed to face the questions. He was in denial of HD which is another thing that needs to be factored in.


Hubby was also redundant at that time of my applying. I believe he was 'let go' from that and a number of jobs where his performance was beginning to alter . Even if he were to have faced facts that it could be HD related he would have been too scared to discuss with his work place. In essence the discrimination fear impacted on our life in so many ways that others would never have had to cope with.


Thank you once again for your time. If there is anything I can do to help, either before 8 Jan or after, please do let me know.


Kind regards


Trish Dainton

@TDainton


The Insurance Salesman

Introduction

In October 2000, Britain became the first nation to approve the commercial use of gene technology to allow insurers to refuse insurance cover; or to push up premiums for those born with genes that could lead to fatal conditions. HD was singled out as the only case allowed immediate discrimination because of the reliability of the test. This meant for a person having tested positive, insurers gained the right in certain circumstances to refuse to insure, or to legally load the premium to extortionate levels (300% has been cited).

So let’s take a hypothetical scenario...

Let’s say a person took the test at eighteen and tested positive. There are no signs of HD but he wanted to know if he had the gene. At twenty, he applies for cover but has to declare a positive gene result and the cost of the insurance cover reflects this. At the same time his twenty year old neighbour has also applied for cover but as he does not have any record of HD in the family. That’s not to say he has no links to HD or any other potentially fatal disease, he just doesn’t know about it yet. His policy costs 100% less.

The HD+ person pays the loaded cover pricing from day one but, where HD is not an exact science, he does not become symptomatic until in his sixties (known as ‘Late Onset’). In those forty years, before symptoms appear, the person has led a HD free and health conscious life whereas his neighbour has not, and needs to draw on the cover much earlier.

It occurs to me there seems to have been no consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! It’s no wonder this discrimination drives some people to delay testing where they feel it may compromise their right to be treated fairly being refused mortgage cover etc.

Please note: As at time of writing this (March 2011) The Association of British Insurers (ABI) has a Code of Conduct stipulating rules which all its Members are obliged to follow. The Code sets out clear guidance where the use of genetic information may be used in calculating cover requirements. No Insurer can request an applicant take a genetic test for consideration of insurance. Set levels of values of policies dictate whether test results can be used in the assessment.

The HDA have prepared a Fact Sheet ‘Advice on Life Assurance, Pensions, Mortgages etc.’ which is available direct from the HDA or accessed through their website.

He’s looking at the paperwork;
He’s thinking of commission.
He’ll reach his bonus target soon,
Just one more sale he’s missing.

And this signed piece of paper,
Will take him to his score.
Be home in time for dinner;
So glad he chose this door.

But hold on, wait a minute;
What’s she put on that bit?
‘Genetic testing... Huntington’s’,
He nearly has a fit!

He grabs the piece of paper;
Ignores her look so sad.
She thinks that we’ll insure her life?
The woman must be mad!
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Old 05-01-18, 01:19 PM   #2
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Default IMPORTANT - URGENT! Monday 8 Jan 2018 Parliamentary Debate Genetics and Insurance

Further to my post above, Gavin's Office has just mailed me with the following below. I apprecaite I may be too late now to get more info back to gavin by Monday but would still appreciate your stories.

Quote:
Hi Trish,



Thanks for sending this over, this has been really helpful. I hadn’t previously thought that someone could be diagnosed with having the HD gene and wouldn’t develop the symptoms until later in life but would still face an uphill struggle to secure affordable insurance.



Gavin is quite keen to capture as many personal stories as possible to convey the struggles that individuals and families are facing with trying to access insurance. Are you able to get in touch with other families/individuals and ask them would they be willing to send me an email which details the issues that they’ve faced?



The main call in Gavin’s speech is for the government to encourage the insurance companies to design an affordable and accessible system which is based on medical evidence. Are there any other specific calls that you think should be made to the government and insurance companies?



Thanks again for sending your previous email, this was really helpful.


If you see this and can e-mail direct, please do so at gavin.newlands.mp@parliament.uk
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Old 05-01-18, 03:23 PM   #3
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Default Re: Monday 8 Jan 2018 Parliamentary Debate Genetics and Insurance

Hi Trish

Many thanks for bringing this debate to people’s attention. Unfortunately, we received the news that it was happening very late in the day. Our post on Facebook has brought some response and we know that there are people contacting their MPs via email / social media.

Genetics and Insurance is complex, Genetic Alliance are experts on this, and their webpages give excellent information for anyone who would like to read more: http://www.geneticalliance.org.uk/in...ic-conditions/

As the experts in the field, Genetic Alliance have been in close contact with Gavin Newlands office to give clear guidance about the issue, we have offered advice and input into this. In addition we will forward the feedback that we have had from families. It is great to see the response that you have had, well done for getting the message across!

Best wishes, Ruth
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Old 05-01-18, 05:18 PM   #4
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Default Re: Monday 8 Jan 2018 Parliamentary Debate Genetics and Insurance

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Originally Posted by HDAModerator View Post
Hi Trish

Many thanks for bringing this debate to people’s attention. Unfortunately, we received the news that it was happening very late in the day. Our post on Facebook has brought some response and we know that there are people contacting their MPs via email / social media.

Genetics and Insurance is complex, Genetic Alliance are experts on this, and their webpages give excellent information for anyone who would like to read more: http://www.geneticalliance.org.uk/in...ic-conditions/

As the experts in the field, Genetic Alliance have been in close contact with Gavin Newlands office to give clear guidance about the issue, we have offered advice and input into this. In addition we will forward the feedback that we have had from families. It is great to see the response that you have had, well done for getting the message across!

Best wishes, Ruth
Thanks Ruth but I must confess I find the above rather patronising. I'm well aware of who the Genetics Alliance are and what they do.

I feel very deflated that I have put in a lot of my time and effort since Wednesday and I it is clear that whether the HDA got the notification this week or last week or 'before Christmas' when SHA knew of the debate there really has been no interest in gathering data/experience from us to help qualify and quantify the problem.

Just using FB ( I noticed it was 08:30 yesterday) has hardly given me confidence that the HDA actually care about their Members etc and our own personal experiences. As I said at the outset in my initial post, I feel it is a wasted opportunity!

I now understand from Gavin's Office that the debate may be at the later slot around 7pm but I'm hoping to have the time confirmed on Monday.
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Old 09-01-18, 07:48 AM   #5
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Default Re: Monday 8 Jan 2018 Parliamentary Debate Genetics and Insurance

If anyone missed the debate it can be seen HERE

I will get a link to the transcript once it is up.
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Old 09-01-18, 07:25 PM   #6
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Default Re: Monday 8 Jan 2018 Parliamentary Debate Genetics and Insurance

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Originally Posted by Trish View Post
If anyone missed the debate it can be seen HERE

I will get a link to the transcript once it is up.

Transcript (Hansard) can be read HERE
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