Insurance company refusing to pay out saying my Lymphoma is related to my CLL

[duncangarnham]

I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I needed medical intervention. I was successfully treated with Alcalbrutinib and my CLL has been under control ever since.As I am self employed, I took out an income protection policy about 5 years ago, knowing that my CLL is not covered as its a pre-existing condition.

Earlier this year I started developing problems with my tongue and l/h side of my head. Severe headaches and neck pain. As I was under the care of Nottingham Queens Med Neurology due to having neurosarcoidosis, i was able to be seen quite quickly and admitted to hospital.

After lengthy tests, MRI's PET scans etc. a mass was found a scull base lesion affecting the left region around the hyperglossal nerve. After much consideration, and subsequent growth of the legion, I was eventually able to undergo a biopsy safely.

After some debate with the MDT, the believe it to be a low grade lymphoma. I have now completed a course of radiotherapy and will find out if its been successful in a couple of months.

The insurance company have rejected my claim as they believe the lymphoma is related to the CLL. I have looked into it, but I'm unable to find link with low grade lymphoma. I can, however, see a link between CLL and non Hodgkins, which I definitely don't have.

Am I right in feeling I can challenge this? I am going to speak with my haemotology and oncology team and ask them to draft a letter saying there is no link between the two and its purely coincidence.

I'm not sure what else i can do. I've been off work for 4 months and we are facing severe financial difficulties if they don't pay out. Any advice or guidance would be greatly appreciated.

[lankisterguy Volunteer]

Hi duncangarnham,

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You may need to get a CLL expert doctor and/or an expert pathologist to write a detailed letter to your insurance in strict medical terms to explain why the mass biopsied did not have the characteristics of CLL/SLL.

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The terms you are using CLL, Non Hodgkin's Lymphoma and low grade lymphoma actually overlap and are not always distinct from each other.

An expert pathologist or hematologist that can interpret the FLOW cytometry from the biopsy would be the only way to differentiate the cells in the mass to characterize it as a different NHL or indolent lymphoma from CLL.

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CLL is a NHL and can also be considered a indolent lymphoma, but there are many other NHLs and indolent lymphomas that are NOT CLL.

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Len

[duncangarnham in reply to lankisterguy]

Thanks Len,

I will contact my nurse specialist on Monday as ask her to liase with my Haemotologist to draw up a more detailed letter explaining the difference.

I may borrow your phrasing so that it's clear what they need to do. Insurance companies love ambiguity as it gives them an opportunity to not pay out.

Cheers

Duncan

[lankisterguy Volunteer in reply to duncangarnham]

Hi duncangarnham,

I agree that Insurance companies love ambiguity and use it in an attempt to wear down their victims to give up trying to collect.

You can use anything in my note, but please remember I am not a medical professional and do not want to insult your professionals.

The key phrase to use is ask them to transmit the results of a FLOW Cytometry / Immunotyping on the mass biopsy. And provide a medical diagnosis.

(The chart attached says Peripheral Blood but the same test can be performed on the tissue from a biopsy).

FLOW Chart results for different NHLs

[cajunjeff]

Duncan, sorry you are having these problems. As the name chronic lymphocytic lymphoma (cll) implies, cll is both a leukemia and a lymphoma. Cll cells circulate from the blood (leukemia) to the lymph nodes (lymphoma).

There are different types of lymphoma though. You need to ask your doctor if the lymphoma you have is a new lymphoma, separate and apart from your cll.

In the US, insurance companies actually hate ambiguity. Most state law require that ambiguous language that could argue for or against coverage ñ, must be interpreted in favor of coverage for the insured.

If you have a new lymphoma, coverage may depend on the language in the policy and as to whether the new lymphoma relates to your cll. Once again, in the US, if that language was unclear, it’s interpreted in favor of coverage

If your policy excludes cll, and your lymphoma is cll cells deposited in your lymph glands, I wouldn’t think there would be coverage

I hope it works out for you

[Pageboy]

I don’t have any advice, but I do hope your doctors can sort this for you. You’re doing what you can, so keep pushing. Insurance companies will generally do what they can not to pay out. My husband is SE and has income protection. It’s crazy expensive, and the wiggle out clauses, not to mention the several months one needs to be out of work to qualify, does make me wonder if it’s worth it. Good luck.

[jabee]

You are definitely entitled to challenge the decision and go through the insurer’s appeals process. They will almost certainly discuss your appeal with their Chief Medical Officer who will be a doctor. The more evidence/information you can provide the better. The wording of the exclusion will be key and I would suggest you show it to your specialists. If they still decline to pay having considered your appeal you have the right to refer the matter to the Financial Ombudsman. They should explain this process to you in their final decision letter.

Good luck.

[duncangarnham]

Thanks for rhe replies everyone, I'll go back to my haemotology team and Monday with the definition from the insurance company and try and get an answer with regards to the leukaemia and its possible cause of the lymphoma.If they say it isn't, I'll get them to write a letter clearly stating that and send it to the insurance company.

Thanks for all your input and help

D

[jabee in reply to duncangarnham]

One more thing, I’d make it clear that you are appealing a decision. A lot of companies have separate teams dealing with appeals and there are agreed timescales that they have to work to.

[Saju21]

I thought CLL stood for chronic lymphocytic leukaemia? Not lymphoma?

[Newdawn Administrator in reply to Saju21]

‘CLL/SLL - An indolent (slow-growing) cancer in which immature lymphocytes (white blood cells) are found in the blood and bone marrow and/or in the lymph nodes. CLL (chronic lymphocytic leukemia) and SLL (small lymphocytic lymphoma) are the same disease, but in CLL cancer cells are found mostly in the blood and bone marrow. In SLL cancer cells are found mostly in the lymph nodes. CLL/SLL is a type of non-Hodgkin lymphoma. Also called chronic lymphocytic leukemia/small lymphocytic lymphoma.’

cancer.gov/publications/dic...

Newdawn

[duncangarnham]

As a follow up, I had a reply from my haemotology team who have confirmed the I have a Marginal Zone Lymphoma. The categorically state it is in no way linked to my CLL.They have written a letter to this effect which I have forwarded onto the insurance asking them to reconsider their decision.

Thanks for all the advice, I think we will successfully overturn their original decision.