MDS and Travel Insurance
Since Brexit - there have been many important changes to travel.
It is now ESSENTIAL you have a valid travel insurance if you travel anywhere in the EU (and anywhere else, as ever).
For current COVID-19 restrictions - this information was compiled in February 2022
Please rely on the general government advice at the time of travel, when it comes to insurance.
From an MDS/CMML perspective - please consult your haematology team for specific advice.
General recommendations are:
- only travel if you really have to
- ensure you have had your COVID vaccines.
Please know that these vaccines may not be fully effective in MDS - we are awaiting trial results on this topic (March 2023)
- travel with a PCR or Lateral Flow tests and test frequently
- if prone to infections - ask your GP to prescribe you some antibiotics - in case you develop some standard infection
- if you test positive for COVID-19 - you need to start a COVID-19 antibody treatment within 5 days of the infection starting
Travel insurance - General advice (regardless of COVID-19)
It can often be difficult to get travel insurance if you have a pre-existing medical condition such as MDS.
Many insurers will quote high premiums – or will refuse to cover you.
Here is why this happens – and how to overcome some of these issues.
Why is it a problem – and why the high premiums?
Travel insurance companies tend to assume you are more likely to make a claim – because you have a pre-existing illness.
Often travel insurance companies will not have a very good understanding of what MDS is. Many will not even have heard of MDS – and will assume it is leukaemia.
How to overcome this problem – and get insured to travel?
Discuss your travel/holiday plans with your haematologist – who will advise whether you are fit to travel to your chosen destination.
Get a “Fit to travel” letter from your haematologist – which will confirm that although you have the diagnosis of MDS – it is safe for you to travel to your chosen destination. Some insurers will ask for this letter.
Get at least 3 quotes for the same trip – from 3 different insurers. This takes time and effort – but will be worthwhile. You may get different questions and very different quotes from each company.
MDS insurance “code”
Before answering any questions the insurance company asks you – ask the staff if the company has a “code” for MDS specifically – as opposed to cancer, blood cancer or leukaemia. If that insurer does not code MDS specifically, it is very likely they don’t understand what MDS is.
If they have an MDS code – get a quote.
If they don’t have a code – do not answer any further questions and call the next insurer on your list.
Same applies to online quotes.
Destinations
Your choice of destination will affect the cost of your insurance.
- USA: If you are travelling to the USA, cover will be more difficult to obtain, and the the premiums to pay will be higher.
- Islands - especially Spanish ones: any islands will carry a higher premium, as there is usually less expert medical cover available, compared with mainland.
And repatriation, if required, would be much more expensive.
- Cruises: very difficult to obtain insurance cover - so be very quite careful not to book without ensuring you have insurance cover arranged.
Many cruise companies will actually not allow you to finalise a booking without proof of insurance cover.
Screening questions
When applying for medical insurance you may be put through a medical screening, which is usually done over the telephone. You will be asked a few questions about your disease and treatment.
You must declare an existing or pre-existing condition to the insurance company.
If you don’t, and then need to make a claim (for whatever reason), they will be able to make your policy null and void.
You may be asked if your diagnosis is “terminal” – this is a question that is increasingly being asked.
The term 'terminal' refers to the stage or status of the condition, not necessarily the condition itself.
Most MDS patients are generally NOT in a “terminal state” as defined by the insurance world.
What is meant by terminally ill?
“The definition used by the Department for Work and Pensions, when they assess a claim under the special rules, is that a person is suffering from a progressive disease, and their death can be reasonably expected within six months.” Source: http://www.patient.co.uk/health/benefit ... inally-ill
Source: https://www.gov.uk/government/uploads/s ... -guide.pdf
“A definite diagnosis by the attending Consultant of an illness that satisfies both of the following: The illness either has no known cure or has progressed to the point where it cannot be cured; and In the opinion of the attending Consultant, the illness is expected to lead to death within [the earlier of] 12 months [and the remaining term of the cover]”
Statement of Best Practice for Critical Illness Cover – February 2011
Source: Association of British Insurers https://www.abi.org.uk/News/News-releas ... -Insurance
So - you should answer No to the question about Terminal diagnosis – unless you have specifically been told otherwise by your haematologist.
UPDATE Summer 2022 - other questions you may be asked:
- Are you on transfusions?
By this, they mean are you on REGULAR transfusions? NOT whether you have had a handful of transfusions at some point to top up your haemoglobin.
- Have you had ANY infections in the last 1 year (some ask for 2 years) ?
You can specify the type of infection, but generally they are just looking for a simple yes or no.
- Have you had any UNPLANNED hospital stays as an IN-PATIENT (overnight) in the last 1 year (some ask for 2 years) ?
Emphasis here in on UNPLANNED - eg, if you had a planned operation or intervention, for whatever reason, you should answer NO to that question.
The insurance company is just looking for serious, unusual situations, which could potentially re-occur during your trip.
Always ask what exactly is included and excluded in the policy, how much you will be charged and how much excess you will have to pay in various circumstances.
Does your policy have cancellation cover? Remember to check as some companies do not offer it.
Length of cover
Is annual cover available? These schemes can be relatively inexpensive and are handy for those who travel several times a year.
Equally – if you currently require active treatment or blood transfusions – ask for single trip cover – which will be cheaper and easier to obtain.
Travelling with family/friends
Try to insure all people travelling with you with the same insurers.
Or insure at least one person from your holiday party with the same insurance company as you, otherwise if you become sick or injured you may have to travel home alone.
If you did need to cancel your holiday completely – you will only need to deal with 1 insurance company – not several.
Call charges to insurers
The charges for phoning insurance companies vary and you may be on hold for a long time. Rates from mobile phones may be higher. The website saynoto0870 may help you find cheaper phone numbers to call. Expensive phone numbers often start with numbers that don’t match the local area, for example 0870 or 0845.
You can also apply for insurance cover online – worth a try especially if your MDS is not particularly problematic – or if you are in the Watch & Wait/Monitor category.
The European Health Insurance Card
Post Brexit, the EHIC has been discontinued unless you have rights under the Brexit withdrawal agreement.
It is being replaced by a Global Health Insurance Card that can be used in Europe - but make sure your country of destination is included.
The Global Health Insurance Card ! Addendum July 2022: Thank you to member RUSE7 for highlighting the introduction of the GHIC
The GHIC allows you to use your card to access medically necessary state-provided healthcare when you're visiting an EU country or Switzerland. See the following NHS link that provides details about how it works and what cover is offered. https://www.nhs.uk/using-the-nhs/health ... card-ghic/
If you are travelling to a country within the European Economic Area (EEA) or Switzerland, this will give you an extra level of cover on top of your travel insurance, but shouldn't be used as a substitute for travel insurance (which covers more than just health issues)
You can opt to exclude MDS from the travel insurance quote, but as insurance companies will always look for a reason NOT to pay out any claims, you may run the risk of long drawn out arguments with them, trying to prove that any missed flights, cancellations etc was not due to your MDS.
Remember that all travel insurance covers are highly individual – as everyone’s situation is different – in terms of diagnosis and/or treatment. 
Check this MDS online chat forum for MDS specific and practical recommendations – from fellow patients.
If you have found this information helpful – please return the favour and share your good or bad experience on our chat forum. Your recommendations are the only way we can get up to date, real and helpful feedback.
Tell us:
What companies were particularly helpful?
How much have you had to pay - for what cover?
So far we had positive feedback regarding the following companies:
Columbus Direct, http://www.columbusdirect.com – or phone 0800 068 0060
Staysure over 50s travel, http://www.staysure.co.uk or phone 0800 652 8296 – quote DMA-43
All Clear, https://www.allcleartravel.co.uk or phone 0808 168 5828
Goodtogo, http://www.goodtogoinsurance.com, or phone 0800 849 8039
Avanti Travel Insurance http://www.Avanti.co.uk 01376 560800
Other sources of travel insurance information:
MacmillanThe Macmillan website has a page dedicated to the topic of insurand, as well as a similar online forum to this one, where patients will all types of cancers share their experiences of various travel insurance companies.
http://www.macmillan.org.uk/information ... rance.html
Travel insurance companies + general advice on travelling with a pre-existing medical condition.
This link takes you to the Macmillan website.
Macmillan Online Community. Here you can talk to other people affected by cancer about travel insurance companies they have used.
ABIThe Association of British Insurers (ABI) represents the UK’s insurance industry. It encourages high standards of customer service in the insurance industry. You can find answers to commonly asked questions about getting travel insurance on the ABI website.
For extra peace of mind when travelling with MDSAdditional advice if you are concerned about travelling and the level of care you may receive by staff who may not be specialised in haematology or MDS - or if you suddenly need assistance anywhere.
Carry some documents describing:
- - what MDS is
- what your particular MDS issues are (low haemoglobin/feeling weak; low platelets/risk of bleeding; low neutrophils/risk of infection)
- your exact MDS diagnosis
- your usual or latest blood results
- your medication list
- Next of kin
But remember that most hospitals will be able to help – if you can explain what your condition is – or show them your diagnosis documents. For more remote and non-English speaking destinations, consider having these documents translated in the relevant language.
Enjoy your holiday!!!