I currently have private BUPA healthcare insurance provided by my employers. My CLL was diagnosed a few months ago, whilst I was insured by this policy.
I'm wondering about what will happen if I leave my job. Will it be prohibitively expensive or impossible to buy private medical insurance?
In case it's helpful I'm living in England, age 51, Stage 0 CLL. No current physical manifestation of illness.
Hi Fred,
I don’t know about the cost of buying cover for yourself, but I just wondered if this may be useful to you.
I am with AXA Health, through work. I am 49, live in England, diagnosed early in 2024, on W&W, and I’m not having treatment / medication.
AXA were great to start with and covered my initial blood tests and consultations. But then wrote to me to advise that I wasn’t covered for “monitoring”.
People on the CLL WhatsApp ground told me to challenge this, which I did.
I argued that my 4-monthly blood test and consultation was in fact “my treatment” and wasn’t just for monitoring purposes. I argued that this was a necessary part of my “treatment”.
To be fair to AXA, they backed-down and agreed to let me have further blood tests and consultations (for the time being at least).
My point is though that I would be very careful of leaving a health insurance provider.
From my experience, if a health insurer can wriggle out of things, they will!
Good luck.
Fred, I would be amazed if a health insurer would take on a new private policy request from someone with an existing cancer, particularly an incurable and rather unpredictable one like CLL. This is general advice I’ve sourced;
‘Policy exclusions
Most health insurers exclude conditions you have when you take out the policy or have been treated for in the past five years. Some insurers may exclude cancer for up to ten years.’
As you’re in the U.K., Macmillan have this advice though it’s fairly generalised;
macmillan.org.uk/cancer-inf....
You could enquire (and for your own interest it might be helpful) but in truth, it seems highly unlikely to me that any policy would cover CLL or if it did, be financially accessible.
It may cover other medical conditions but this in itself is a minefield because I suspect the argument would always be that the CLL was implicated. It’s a bit like excluding CLL on a travel insurance and trying to claim for pneumonia which the insurer would try to argue was the consequence of being immune compromised 🙄
The good news is that if it becomes necessary, the NHS does provide a very good service and I wouldn’t even like to contemplate what my care and treatment has cost so far (and continues to cost). Occasionally however, I do self fund private consultations like eye care on a as need basis.
Best wishes,
Newdawn
I am with WPA who funded all my tests and monitoring (about £12,000 over 18 months) but as soon as I needed treatment - ibrutinib and venetoclax - they would not fund any drugs that are available on the NHS. I enquired about the cost of paying for this 15 month treatment privately but the ibrutinib alone is £6000+ a month. My private consultant arranged for a switch to the NHS for treatment whilst arguing with WPA which is ongoing. The transfer has been smooth and within the same hospital (UCLH) and so far the NHS has been great. I tried for alternative cover but all excluded a pre existing condition so I will have my treatment within the NHS and hopefully return to my private consultant for motoring after treatment.
In our experience, the NHS has been excellent for CLL. We have used private providers for other issues but some of the new CLL drugs are so expensive I’d be surprised if insurers would fund them for too long.
Beryl
yes it is expensive but if you leave your work you can often extend your cover and not have to exclude pre existing conditions which occurred when you were under the original cover. I am on W&W and have BUPA cover even though retired. However the real problem is if you claim in any year more than the threshold for an increase in premiums for the next year. Be very careful not to do this because it makes the next years premium unsustainable. I have pushed my deductible up very high, transferred to NHS for CLL care and try to pay in cash for anything which is less than the deductible. The cover remains for unexpected emergencies. I hope this helps.
Hi, I also have AXA health insurance through work. They were previously with BUPA. I had to declare my CLL and both covered me but only because it was a company policy. I would not get covered as an individual with a current condition such as CLL. Even if I could, the cost would be prohibitive. As it is, the cost of my care (which I’ve been having for almost four years now) which includes blood tests every quarter, daily Acalabrutinib and also Obin infusions a couple of years ago (not available in this combo on the NHS), is eye watering. My premiums go up exponentially each year which makes me nervous as my company isn’t that big. For most people, even if covered before diagnosis, it’s hard to sustain ongoing treatment costs due to how insurance works. I do feel over a barrel sometimes but luckily I like my job, and I’m fit and healthy otherwise. Equally, if my company decided they could no longer afford my premiums and despite the problems with the NHS, good treatment is available.
I was covered by Private Health Insurance when I was diagnosed in 2009.
I had FCR shortly after and am now on Acalabrutnib.
I was told at the time that I wouldn’t need the private health insurance for CLL treatment and this has always been been the case. The NHS have been excellent with my monitoring and treatment plans.
I did change jobs and have recently purchased BUPA at standard rates. It just doesn’t cover pre-existing medical conditions within the last 2 years.
I like you have had this concern, I am with BUPA and they have been excellent throughout my monitoring and now in treatment, everything funded without a question, whether that has been bloods, scans and now O&V treatment in a private clinic so it is a big benefit and I dread to think how much it is costing. I do know that with our company insurance new employees can join from day 1 and get full cover without any consideration of prior conditions so it really is a gold star policy. Thus if I were to look to move companies this would be a major point in the negotiation of my package. I feel very blessed to have the level of care I am getting, it is quite incredible in terms of the amount of testing, advice and information I get. It has always been face to face time with my consultant, which is very important to me aswell as anytime access to my clinical team (3 highly specialised oncology nurses). I hope it is a long time before you need treatment but if you are tempted to move jobs I would do some strong negotiation on health care terms as it is invaluable.
Fred, I have private health insurance, a legacy policy from when I was working. I started my CLL treatment journey with them but on the advice of my consultant switched to the NHS, who have been fantastic.
I still use the insurers for minor non CLL issues. For CLL the most important thing is to get the right hospital and a consultant you trust.
Incidentally when I was being treated for a melanoma (privately), I switched on the professor's advice to NHS, the only difference he pointed out, being no carpet on the consulting room floor and a slightly cheaper coffee machine in the waiting room.
Roger
Fred, I was in a similar situation. I had medical cover through my husband’s job. Often insurers will continue the cover privately with no underwriting, however, the HR team at my husband’s company (a very big one) botched the process and I had to find private cover with underwriting. I found AXA, but they exclude anything to do with CLL, but after 5 years will pay for required treatment that is not available on the NHS . I pay over £2000 a year and don’t know whether any claims will be paid. Luckily I am in good health while in w&w but think the insurance situation should be much clearer. My advice is to retain the cover you have as long as you can.
Fred,
I was covered by my employers medical insurance when I was diagnosed but generally I believe the insurer will allow you to transfer to a personal policy if you leave your job or retire. In my case I retired and AXA allowed me to convert to a personal policy. This is not cheap at about £5000 per year. I should also add that all my treatment has been done under the NHS and I'm not sure if taking advantage of my cover would have changed the care I have received.
Jacques
In some of my previous jobs I had the option of taking the provided private health insurance plan with me after leaving the job. Check with your employer if this is an options whenever you are thinking of leaving. This would continue your cover for existing conditions. But they may quote an unaffordable monthly premium.
We are with WPA for private health insurance but continue on W&W on the NHS at the MacMillan UCLH cancer centre. When discussing private health insurance with our NHS consultant he said going private would probably mean ending up with him and his team on their private side anyway.
Moving to private for us will be something we will consider when treatment is needed in case there were any new drugs that the NHS does not yet cover. But my understanding is that as of today the NHS covers all the latest drugs (which was not the case a few years ago for example). NICE takes some time to evaluate new drugs.
you would have to declare it as an existing condition but in London NHS cope very well and I never use my insurance as I keep it for other conditions. my haematologist at Hammersmith first class and CLL very slow developing and with latest drugs I am in remission so don’t worry
Fred,
Bear in mind that larger group schemes, besides providing gold/ silver/ bronze levels of cover for different rungs on the corporate ladder, may admit all new members without medical underwriting. Furthermore, they may offer "continuation cover" under an individual policy to members leaving that employment. As such, the individual policy would come with no (new) medical exclusions.
The exclusions problem is magnified by the tendency of insurers to word the exclusion clause, be it for CLL or whatever, in such a way that it catches any condition that might conceivably be connected with (in your case) a suboptimal immune system. A broken leg? Yep, caused by CLL.
So you really need to understand in detail what your employer's BUPA scheme covers you for, and what would be the terms of any continuation cover. The same applies to the new medical insurance scheme offered by any new prospective employer. Don't be afraid to talk to your BUPA representative. There's no point in hiding your diagnosis from them, quite the opposite.
Having said all that, these days the NHS does a pretty good job with monitoring and treating CLL. Compared to 10 years ago, face-to-face consultations are rare, but the availability of effective drugs/ combinations is much more egalitarian across the CLL patient spectrum.
Travel insurance for UK residents with CLL
Qualifying for Life Insurance with CLL Newly diagnosed 
SLL/CLL travel insurance questions
Travel insurance when in remission 
life insurance company definition regards CLL.
