Life insurance with cystic fibrosisAn honest guide to your options in the UK
We are going to be straight with you: cystic fibrosis is one of the most difficult conditions for life insurance. Most standard insurers will decline an application from someone with CF. But that does not mean you have no options. There are routes to meaningful cover, and the landscape is beginning to shift as treatments like Kaftrio transform what CF looks like in practice. This page explains honestly what is available today and what may be possible in the near future.
The short answer
Standard underwritten life insurance with cystic fibrosis is extremely difficult to obtain. Most UK insurers will decline because CF has historically been associated with significantly reduced life expectancy. However, CFTR modulator therapies (particularly Kaftrio, available on the NHS since 2020) have dramatically changed outcomes for many people with CF, and a small number of specialist underwriters are beginning to consider well-managed CF on a case-by-case basis. In the meantime, guaranteed acceptance plans, group life through your employer, and over 50s plans (if age-eligible) are available regardless of your CF status. A specialist broker who understands CF is essential for navigating these options.
Why cystic fibrosis is so difficult for life insurance
Life insurance underwriting is fundamentally based on life expectancy. Insurers price risk by estimating how long a policyholder is likely to live relative to the general population. Conditions that significantly reduce life expectancy result in either very high premiums (loadings), limited cover, or outright decline.
Cystic fibrosis has historically fallen into the most difficult category. The median age of death for people with CF in the UK has improved substantially over the decades - from childhood in the 1960s to the mid-30s by the 2000s - but it has still been significantly below the general population. Most insurer underwriting manuals reflect mortality data that is years or even decades old, and much of that data predates the transformative impact of CFTR modulator therapy.
The result is that, as of now, the majority of UK life insurers will decline an application from someone with cystic fibrosis through their standard underwriting process. This is not a reflection of prejudice. It is a reflection of how slowly actuarial models update when the medical landscape changes as rapidly as it has for CF.
What insurers ask about cystic fibrosis
If a specialist underwriter is willing to consider a CF application, they will want a detailed picture of your health. Having these details ready - ideally from your CF consultant - helps your broker present the strongest possible case.
What is your current lung function (FEV1)?
Forced expiratory volume in one second (FEV1) is the single most important metric for CF underwriting. It measures how much air you can forcefully exhale in one second as a percentage of predicted. FEV1 above 70% predicted is considered mild lung disease. Above 80% is near-normal. The higher and more stable your FEV1, the better your prospects. Insurers want to see a trend over time, not just a single reading.
What is your BMI and nutritional status?
Nutritional status is a key indicator in CF. A BMI in the healthy range (18.5-25 for adults) demonstrates that you are managing the pancreatic and digestive aspects of CF effectively. Low BMI or difficulty maintaining weight is viewed less favourably and can indicate more severe disease.
Are you on CFTR modulator therapy?
Treatment with a CFTR modulator - particularly elexacaftor/tezacaftor/ivacaftor (Kaftrio in the UK) - is increasingly relevant. Insurers who are willing to consider CF at all will want to know if you are on modulator therapy, how long you have been on it, and what improvement in lung function and overall health it has produced. Kaftrio has been available on the NHS since 2020 and is suitable for around 90% of people with CF in the UK.
How frequently are you hospitalised for pulmonary exacerbations?
The frequency of chest infections requiring IV antibiotics or hospital admission is a strong indicator of disease severity. Zero or one exacerbation per year, particularly since starting modulator therapy, is viewed far more positively than frequent admissions. A clear reduction in exacerbations after starting Kaftrio or similar treatment is a strong positive signal.
Do you have CF-related diabetes (CFRD)?
Around 40-50% of adults with CF develop CF-related diabetes. CFRD adds complexity to underwriting because it creates additional health risks. Well-managed CFRD (good HbA1c levels) is viewed more favourably than poorly controlled CFRD, but it is an additional factor that makes underwriting harder.
Have you had a lung transplant or are you on the transplant list?
A lung transplant or being on the transplant waiting list indicates end-stage lung disease and effectively closes the door to standard underwritten life insurance. Post-transplant cover through standard underwriting is not available. Guaranteed acceptance plans become the primary option.
What is your Pseudomonas status?
Chronic Pseudomonas aeruginosa infection is common in CF and is associated with faster lung function decline. Whether you have chronic Pseudomonas, and how well it is managed with inhaled antibiotics, is part of the overall assessment. Freedom from chronic Pseudomonas is a positive factor.
Your CF clinic results make the difference
FEV1, BMI, exacerbation history, and whether you are on Kaftrio. With these details, our specialist brokers can assess your options honestly.
Get QuoteKaftrio and CFTR modulators: a changing landscape
The approval and NHS funding of Kaftrio (elexacaftor/tezacaftor/ivacaftor) in 2020 represents the most significant advance in CF treatment in the history of the condition. For the roughly 90% of people with CF who carry at least one F508del mutation, Kaftrio has delivered improvements that were barely imaginable a decade ago.
Clinical trials showed average FEV1 improvements of 10-14 percentage points. Real-world UK data from the CF Registry has confirmed sustained improvements in lung function, weight gain, dramatic reductions in pulmonary exacerbations, and reduced need for IV antibiotics. Many people who were considered for transplant assessment have been delisted because their lung function improved so significantly.
What does this mean for life insurance? Honestly, the insurance industry has not yet caught up. Actuarial models take years to update, and insurers want to see long-term survival data before they fundamentally change their underwriting for a condition like CF. Kaftrio has only been widely available since 2020, so the long-term outcome data that insurers want simply does not exist yet.
However, there are early signs of movement. A small number of specialist underwriters are now willing to look at CF applications on a case-by-case basis, particularly where the applicant is on Kaftrio with excellent lung function, good nutrition, and minimal exacerbations. This is not yet a widespread market - it is individual assessment by specialist underwriters who are willing to look beyond outdated mortality tables. But it is a start, and it is more than was available even three years ago.
The expectation among many in the CF community and among informed insurance professionals is that, as Kaftrio outcome data matures over the next 5-10 years, the insurance market for CF will open up significantly. If median life expectancy for people with CF on modulator therapy approaches or exceeds 50, the actuarial case for insuring people with well-managed CF becomes much stronger.
How CF affects premiums and terms
We want to be realistic about what to expect. The vast majority of CF applications through standard insurers result in decline. But for the small number of specialist underwriters now considering CF, here is what the current picture looks like.
Best case: mild CF on Kaftrio, excellent lung function
Individual assessment - very high loadings if accepted
FEV1 above 70-80% predicted, stable or improving on Kaftrio, BMI in healthy range, zero or one exacerbation per year, no CFRD, no chronic Pseudomonas. This is the profile most likely to be considered by a specialist underwriter. If accepted, expect very significant premium loadings - potentially 200-400% or more above standard rates. The cover amount may also be capped. This is expensive per pound of cover, but for someone who needs life insurance for a mortgage or family protection, any cover at all is valuable.
Moderate CF
Standard underwriting very unlikely
FEV1 between 40-70%, regular exacerbations, CFRD present, or chronic Pseudomonas. Standard underwritten cover is very unlikely even from specialist insurers. Guaranteed acceptance plans, group life through your employer, and over 50s plans (if age-eligible) are the realistic routes. A specialist broker can still explore the market on your behalf, but they should be honest about the probable outcome.
Severe CF or post-transplant
Standard underwritten cover not available
FEV1 below 40%, frequent hospitalisations, on the transplant list, or post-lung transplant. Standard underwritten life insurance is not available. Guaranteed acceptance plans are the primary option - they ask no medical questions and cannot decline you. Group life through your employer (if available) is also an important source of cover.
What to do if you have been declined
If you have already applied for life insurance and been declined because of cystic fibrosis, you are not alone. This is the experience of the majority of people with CF who apply through mainstream channels. But a decline from one insurer - or even several - does not mean cover is impossible. Here is what to do next.
1. Speak to a specialist broker
A broker who specialises in impaired life insurance has access to underwriters and markets that high-street brokers and comparison websites do not. They know which specialist underwriters are currently considering CF, what information to present, and how to frame your application for the best possible outcome. This is the single most important step.
2. Consider guaranteed acceptance life insurance
Guaranteed acceptance plans do not ask any medical questions. You cannot be declined. Cover is typically capped at around 25,000 pounds and there is a moratorium period of 1-2 years (during which the insurer returns premiums rather than paying the full benefit if death occurs). After the moratorium, the full sum assured is payable regardless of cause of death. The cost per pound of cover is higher than standard insurance, but it provides certainty.
3. Check your employer group life scheme
Death-in-service benefit through your employer typically provides 2-4 times your annual salary as a lump sum to your beneficiaries, often with no individual medical underwriting (or limited underwriting up to a free cover limit). For many people with CF, group life is the most valuable cover they have. If you are considering a job change, check what group benefits are offered - it can be a significant factor.
4. Over 50s life insurance (if age-eligible)
If you are aged 50 or over, over 50s plans are available with no medical questions. These provide a fixed monthly premium and a guaranteed payout after a moratorium period. Cover amounts are more modest, but combined with other cover (guaranteed acceptance, group life), they can form part of a meaningful overall package.
5. Do not give up - the market is evolving
If you have been declined today, it may be worth revisiting in 2-3 years. As long-term data on Kaftrio outcomes accumulates, more insurers are likely to consider CF applications. A specialist broker can advise when it is worth trying again based on how the market is developing.
Been declined? There are still options.
A decline from one insurer does not close every door. Our partner brokers specialise in finding cover for people with difficult medical histories, including CF.
Get QuoteThe honest answer
Here is the honest truth about cystic fibrosis and life insurance. Standard underwritten cover is very difficult to obtain. Most insurers will decline. That is the reality today, and we would not be doing you a service by pretending otherwise.
But the picture is not as bleak as it was five years ago, and it is changing. Kaftrio has fundamentally altered the trajectory of CF for the vast majority of people with the condition. Lung function is improving. Hospitalisations are falling. People with CF are living longer, healthier lives. The insurance industry is slow to update its models, but it does update them eventually. The HIV market is a good precedent - it went from automatic decline to insurable condition as the medical evidence became undeniable. CF may follow a similar path, particularly for those on effective modulator therapy with excellent clinical outcomes.
In the meantime, there are practical steps you can take. Guaranteed acceptance plans provide a baseline of cover. Employer group life schemes are often the single most valuable source of protection for someone with CF. And if your CF is genuinely mild - high FEV1, stable weight, minimal exacerbations, on Kaftrio - it is worth having a specialist broker explore the market, because a small number of underwriters are now willing to look at these cases. Our partner brokers will tell you honestly whether that is worth pursuing for your specific situation, or whether the alternative routes are more realistic. Either way, you deserve to know where you stand.
Critical illness cover with cystic fibrosis
New critical illness cover after a CF diagnosis is not available through standard underwriting. However, if you took out a critical illness policy before your CF was diagnosed (which is unusual for CF, since it is typically diagnosed in childhood, but is possible in cases of late or atypical diagnosis), you should check whether you have a valid claim. Some critical illness policies list organ transplant or chronic lung disease as covered conditions.
For most people with CF, critical illness cover is not a realistic option. The focus should be on life insurance (through the routes described above) and on ensuring any cover you do obtain is set up correctly in trust.
Income protection with cystic fibrosis
Individual income protection with CF is very difficult through standard underwriting. Most insurers will decline. Employer group income protection schemes may provide cover, particularly if they have a free cover limit that does not require individual medical underwriting. This is another reason why employer benefits are especially valuable for people with CF.
If you are self-employed or your employer does not offer group income protection, building an emergency fund and understanding your entitlement to Employment and Support Allowance (ESA) and Personal Independence Payment (PIP) is important as a safety net.
Put your policy in trust
Whatever cover you manage to secure - whether underwritten, guaranteed acceptance, or any other route - writing it in trust is essential. A trust ensures the payout goes directly to your chosen beneficiaries, outside your estate. This means no probate delays, no inheritance tax on the payout (potentially saving 40%), and certainty that the money reaches the people who need it quickly.
Setting up a trust is free and takes only a few minutes. Our partner brokers set it up on every policy as standard practice. For someone with CF, where the cover you have may be hard-won and especially precious, making sure it is protected in trust is not optional - it is the responsible thing to do.
Read our full guide to trusts and estate planning
Frequently asked questions
Can I get life insurance with cystic fibrosis?
Standard underwritten life insurance with CF is very difficult to obtain. Most mainstream insurers will decline. However, a small number of specialist underwriters are beginning to consider well-managed CF on a case-by-case basis, particularly for people on Kaftrio with excellent lung function. Guaranteed acceptance plans, group life through your employer, and over 50s plans (if age-eligible) are available regardless of your CF status.
Will Kaftrio make it easier to get life insurance?
It should, over time. Kaftrio has dramatically improved outcomes for people with CF - better lung function, fewer exacerbations, improved nutrition, and longer life expectancy. But the insurance industry updates its underwriting models slowly, and long-term survival data on Kaftrio is still being gathered. The expectation is that as this data matures over the next 5-10 years, more insurers will consider CF applications. Some specialist underwriters are already beginning to look at Kaftrio-era CF more favourably.
I have CF but my lung function is nearly normal. Does that help?
Significantly. Near-normal FEV1 (above 80% predicted) is the strongest single factor in your favour. If you also have a healthy BMI, minimal exacerbations, and are on effective modulator therapy, you represent the best-case scenario for specialist underwriting. It is absolutely worth having a specialist broker explore the market on your behalf.
What is guaranteed acceptance life insurance and how does it work?
Guaranteed acceptance life insurance asks no medical questions and cannot decline you. Cover is typically capped at around 25,000 pounds. There is a moratorium period (usually 1-2 years) during which the insurer returns your premiums plus interest rather than paying the full benefit if death occurs. After the moratorium, the full sum assured is payable regardless of cause of death. It is more expensive per pound of cover than standard insurance, but it provides guaranteed protection.
Should I mention my CF on the application?
Absolutely, yes. If the application asks about medical conditions or medication, you must disclose your CF. Non-disclosure can void your entire policy, meaning a claim could be rejected when your family needs it most. Honest disclosure to an appropriate insurer (or choosing a guaranteed acceptance plan that does not ask medical questions) is always the right approach.
Can I get a mortgage with cystic fibrosis?
Yes. Mortgage lenders do not ask about health conditions. The health questions arise from the life insurance that protects the mortgage. Some lenders may accept alternative arrangements if standard life insurance is not available, such as guaranteed acceptance cover, savings, or other assets as security. A specialist broker can advise on the options for protecting a mortgage with CF.
My child has cystic fibrosis. Should I think about insurance now?
If your child is young, the most useful step may be to check whether your own life insurance and income protection are adequate, since your family depends on your ability to provide. For your child specifically, some children's critical illness policies may be worth exploring before a formal CF diagnosis appears in medical records (though this requires careful timing and honest disclosure). Group life schemes attached to employment will be relevant when your child enters the workforce. The landscape may look very different in 10-20 years as Kaftrio data matures.
I have CF-related diabetes. Does that make insurance even harder?
Yes. CF-related diabetes adds an additional layer of risk from an underwriter's perspective. It does not necessarily close the door completely with specialist underwriters, but it makes an already difficult underwriting case harder. Good HbA1c control is important. Guaranteed acceptance plans remain available regardless of CFRD status.
Get honest advice about cover with cystic fibrosis
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