A quick update to say that having submitted that elusive ABI statement on MPNs to my insurers (UNUM) they pretty speedily revised their position and accepted my claim. (Have yet to see quite what I get!).
A huge thanks to everyone who advised and dug about on my behalf.
Clearly this is still an issue rumbling around in this forum (and my guess is, it may be a bigger issue for all those MPNers out there who don't participate here). MAZ - how can we get the ABI guidelines highlighted somewhere with much greater visibility? MPN Voice website? It would be great if we could just relieve one unnecessary burden.
Thanks again guys for your support.
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Ebot
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Hi Ebot, great news I am so pleased you have managed to change their minds and get your claim accepted. I will see if it's possible to put the guidelines on the website, we might not be able to but I will have a look. Maz
Thanks Maz. Even if we can just flag up the ABI position on the pages that mention insurance / finances etc that would be helpful.
It's a piece of information that seems to have gone underground and as a result patients are losing out what may be significant sums causing financial hardship and stress. It would be good to create awareness /knowledge around this issue.
So pleased for you. Enjoy your retirement - and time with your grandchildren! (I'm still on the first round children wise - so I can't give them back at the end of the day!!)
I have over the weekend provided the pre and post change guidelines along with the change release to two other members. So there is obviously a bit of demand for this info.
I know from our previous conversation you had been declined a number of years ago, out of interest (if you want to share that is) were you able to gain a refund in premiums paid since the original claim was declined, and did they offer any interest?
Haven't pursued that one yet! I'll let you know how I get on.
And while throwing that ABI statement back at them appears to have got results (I'd like to see the cash before I get too excited!) the harsh reality remains that insurers can essentially state their own terms. I don't mean excluding ET and PV against ABI guidelines but other insurance policies of ours that include an element of CIC only pay out in cases of terminal illness (twelve months or less). Very happy to do without!
Yes I am with you on that one. Get your money then pursue it.
One good term to use if you do pursue a refund is 'TCF' Treating Customers Fairly. This means you shouldnt expect a customer to pay for insurance cover they dont need. Technically as you put a claim in a number of years ago and it should have been paid then the cover you have had since is not needed, the policy ends on pay out normally for Critical Illness cover.
Brilliant news. I managed to get a claim for my husband I was refused at first. Then a year later I quoted the ABI they paid out straight away. I shared the news on this forum and since then others have been successful x
Hi Tracey. I saw your original posts. Although I've found the search facility here is not always comprehensive which is frustrating.
I'm just hoping we can find a way to put that ABI statement (with a date) somewhere prominent and highly visible so MPNers know where they stand regardless of whether or not they use this Forum. Let's keep spreading the word!
Hi there... New to this thread so forgive me. I had a claim turned down and wonder how I can access this ABI statement please to see if it makes a difference? Thanks.
Lizzie. Have sent you a message. Please let me know if you do / do not receive it. In addition I'm just checking out a way to provide a viable link on this Forum. Will post under separate (very obvious!) thread.
Have now posted the ABI statement in full in a new thread headed CRITICAL ILLNESS AND ET / PV: THE A.B.I STATEMENT. I'm hoping it's in a format now that people can easily copy / paste / print.
Candace I realised I had posted the whole statement on this Forum I have reposted it here the search facility isn't great and it's not always easy to track things down. Good luck!
THIS IS THE STATEMENT (TOGETHER WITH THE ANNEXES) ISSUED BY THE A.B.I (IN 2006?) WHICH CONFIRMS THAT CONSUMERS WITH ET AND PV ARE COVERED FOR THE PURPOSES OF CRITICAL ILLNESS
ABI STATEMENT ON THE CRITICAL ILLNESS INSURANCE CANCER DEFINITION
Summary
1. The ABI are issuing this Statement to explain what will happen if a consumer is diagnosed with either essential thrombocythaemia and polycythaemia rubra vera (see Annex 1 for more information) and they make a claim for it under a critical illness (Cl) insurance policy. Both conditions are rare and affect the blood. Both are mentioned as examples of pre-malignant conditions in the 2006 ABI definition but new medical evidence submitted since the last review indicates that opinion is divided and that there is a substantial view that considers that these conditions can indeed be malignant. Unlike prostate cancer, for example, there is no severity scale for either condition at present.
2. This Statement means that consumers will be covered if they are diagnosed with either of these conditions under the new definition, or post-definition amendment. The issue will be reconsidered if appropriate, along with any other potential changes, at the next full three yearly review.
3. It is important to note that, while the ABI Statement of Best Practice sets out categories of conditions that are, and are not, covered by Cl insurance, it is entirely down to individual member companies to evaluate individual claims and decide whether or not they should be paid. Given the latest medical evidence, our recommendation is that companies should amend their claims philosophy and also treat as valid any claims for these conditions under policies bought before the new 2006 definition was launched.
Background
4. During the consultations on the review of the Cl Statement of Best Practice, the consensus was that these were pre-malignant conditions rather than malignancies and it seemed that the best way to avoid any doubt on the matter was to include them as examples of pre-malignant conditions.
Conclusion
5. In producing the 2006 definition, it was never the ABl's intention to make new malignant cancer exclusions. The effect of the new evidence about their malignancy is as follows:
a. Assuming member companies follow our recommendation, consumers with policies that cover cancer that include pre-2006 wording will be covered if they are diagnosed with either condition.
b. Consumers who have policies with the 2006 cancer definition wording will also be covered because the exclusion in their policies fails as they are not examples of pre-malignant conditions.
c. For the avoidance of doubt, we are advising insurers who have yet to implement the new cancer definition to delete reference to these conditions as pre-malignant examples (see Annex 2 for amended definition). Accordingly, future buyers will also continue to be covered.
Annex 1
General description of the conditions and malignancy
1. Myeloproliferative disorders (MPD) are clonal proliferative disorders of multipotent haematological progenitor cells. They include polycythaemia rubra vera (PRV), essential thrombocythaemia (ET), chronic idiopathic myelofibrosis (IMT or IMF), chronic myeloproliferative disease (unclassifiable), and chronic myeloid leukaemia (CML). ET and PRV are the only conditions where there was any doubt about malignancy.
Essential thrombocythaemia (ET) - prognosis and treatment
2. Current medical opinion received is that, for the most part, the disease is relatively benign. Most patients survive many for many years following diagnosis. There is a low risk of transformation to acute leukaemia or myelodysplasia or to marrow fibrosis. There is also an increased risk of thrombosis and haemorrhage due to the increased number of often functionally defective platelets.
3. The majority of people with ET will require some form of treatment. Low dose aspirin which interferes with the way blood platelets work may be used for those considered to be at risk of developing thrombosis and those with a more significant risk may be treated with hydroxyurea. Whilst this drug is usually well tolerated, it may increase the risk of transformation into acute leukaemia in later life.
4. ET is often an indolent condition, with a long median survival of 12 to 15 years. As ET normally occurs in later years, life expectancy is nearly normal at diagnosis. Transition to myelofibrosis and/or acute leukaemia occurs in 3 to 10% of cases.
Polycythaemia rubra vera - prognosis and treatment
5. Current medical opinion received is that for the most part, the disease is relatively benign. Most patients survive many for many years following diagnosis. There is a risk of transformation to acute leukaemia or myelodysplasia. There is also an increased risk of thrombosis. PV may therefore shorten life.
6. Treatments vary for PRV depending on a number of factors including the duration and severity of the condition and the age of the person affected. The most effective method of treatment is to reduce the number of red blood cells in the circulation by blood-letting, also known as phlebotomy or venesection. This procedure involves removing a unit (a pint) of blood via a needle in the arm identical to the procedure used in connection with blood donation. When the condition is first diagnosed, this may mean regular venesection perhaps as often as once per week. Intervals become longer as the blood profile improves and eventually the procedure may only be required infrequently with months in-between. The main benefit from this treatment is that there are virtually no side-effects.
7. The limitation of phlebotomy is that is does not reduce platelet count and therefore hydroxyurea may also be used as adjunctive therapy. Interferon can be used for those where hydroxyurea is unsuitable. However, it often has unpleasant side effects. Small doses of aspirin may also be used to reduce the risk of thrombosis and paracetamol may be used if analgesia is required.
8. If left untreated most patients with PRV will die of thrombosis at an average of less than 2 years from the first sign of the disease. However with the development of effective therapies, life expectancy has increased to over 10 years although there is always a risk of conversion to acute myeloid leukaemia at any stage. The mode of treatment affects this risk. The PRV study group found that in those treated with phlebotomy the risk of transformation was 1.5%. Gastro¬intestinal and skin cancers are also more common in the condition and are affected by mode of treatment.
Incidence rates
9. The incidence of ET is not as well documented. However, there is UK research that suggests that 1 per 100,000 -150,000 are diagnosed each year but there may well be a pool of undiagnosed cases. Higher incidence of 1.5 to 2.5 per 100,000 has been reported in the Scandinavia and the USA. The average age is 50-60 but increasing numbers of younger people being diagnosed, possibly due to increased testing using more sensitive methods.
10. The incidence of PRV in the general population is about 2 per 100,000 in the UK with an equal sex ratio. It occurs most commonly between 50 and 70 years of age.
Annex 2 - Revised ABI Cancer definition 2006 - showing deletion of conditions
Cancer - excluding less advanced cases
Any malignant tumour positively diagnosed with histological confirmation and characterised by the uncontrolled growth of malignant cells and invasion of tissue.
The term malignant tumour includes leukaemia, lymphoma and sarcoma.
For the above definition, the following are not covered:
• All cancers which are histologically classified as any of the following:
o pre-malignant, for example essential thrombocythaemia and polycythaemia rubra vera [1];
(NOTE THIS IS RULED THROUGH ON ORIGINAL TEXT - SEE NOTE [1] BELOW)
o non-invasive;
o cancer in situ;
o having either borderline malignancy; or
o having low malignant potential.
• All tumours of the prostate unless histologically classified as having a Gleason score greater than 6 or having progressed to at least clinical TNM classification T2N0M0.
• Chronic lymphocytic leukaemia unless histologically classified as having progressed to at least Binet Stage A.
• Any skin cancer other than malignant melanoma that has been histologically classified as having caused invasion beyond the epidermis (outer layer of skin).
Thanks all for the really helpful posts. I claimed at diagnosis in 2004, but the claim was rejected. I was about to terminate my cover which prompted me to check with MPN Voice. As a result I reclaimed and Aviva (who took over the original Sun Life policy) paid out back-dated to 2006 and with a refund of all my premiums that I had paid since then. Wow! Thanks to all. It would be good if there was a FAQ to critical illness and how to claim on this on the site to make it even easier to access the info.
Congratulations! Yes, I too would have missed out had it not been for an eagle eyed fellow MPNer on this Forum. I am truly thankful.
I totally agree about this issue getting a prominent profile on the MPN Voice website together with a copy of the ABI statement. It was issued over ten years ago! It’s absurd that people are still being misled by their insurance companies. I did flag it up with Maz when I first posted. Perhaps we might flag it again? (I realise there has been a more recent thread on this same subject.)
Hi there. Congratulations on your new baby. You really have your hands full! I have just reposted that ABI statement in full in a new thread. (I tried to do it here but it is too long.) The search facility on this Forum is not great. Someone else (FriendofPiglet) has also reposted a link in an old thread all about this - with this statement - in response to someone else (maybe your partner??). I’ve suggested he post the link in a new thread as well. Hope this is useful. Sending all best wishes.
thankyou for this! Do you know if you have to wait to claim until you've been diagnosed with specifically one the 3 mpns? Has been diagnosed with an MPN which says it on his paperwork but is waiting for bone marrow biopsy to tell us which one yet
My instinct would be (given the nature of Insurers) to wait for the outcome of the BMB and have as much ‘official’ information / paperwork lined up before you start the claim. I didn’t infact make a claim until quite a long way down the line, it was initially rejected but once I fought it with the ABI statement it was backdated to the time of diagnosis. You could always have an informal chat with your insurers to see how the land lies.
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