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Tess Harris Tribute

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Insurance

This fact sheet is for people with polycystic kidney disease (PKD) in the UK looking for health, travel, life or critical illness insurance. It explains why it can be harder to find insurance if you have a long-term health condition and why your premiums may be higher. This is a basic guide only: for tailored advice, please speak to an experienced insurance broker.

Contents

What types of insurance relate to your health?

Common insurance products that can be affected by any health conditions you already have are:

  • Health insurance (private medical insurance): pays for private tests and treatments for illnesses. Often only short-term (acute) illnesses are covered not long-term (chronic) ones.
  • Travel insurance: helps with costs of a variety of problems that can happen during your trip, including emergency medical care, cancellations or delays, and lost or stolen belongings.
  • Life insurance: gives an agreed sum of money to your family or a loved one if you die, either as a single payment or regular payments.
  • Critical illness insurance: gives you an agreed sum of money if you’re diagnosed with a condition named in the policy (for example, cancer, a heart attack, or Alzheimer’s disease).

Why does having PKD affect your insurance?

Autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD) are lifelong conditions that affect your kidneys.

They make it more likely that you’ll become unwell and need medical care. This could make it harder to find affordable insurance in a number of ways:

Health, travel and critical illness insurance

  • Standard policies usually don’t cover conditions you already had before you signed up (a pre-existing condition). This means if you had PKD before you took out the insurance cover and you get ill because of your PKD, it would not be covered.
  • Many standard policies don’t cover long-term conditions, so if you’re diagnosed with PKD after you take out the insurance cover, it would not be covered.
  • Some specialist insurers will agree to tailor a policy for you to take into account your PKD. But the amount you pay for the insurance (the premium) is likely to be higher than standard.

Life insurance

  • Because you have a long-term condition, your premiums for life insurance are likely to be higher than they otherwise would be.
  • Not all insurers will agree to cover you, so you may need to shop around.

This may feel very unfair but remember that insurance companies are businesses. They need to be sure that their business can make a profit overall to exist and honour the claims they have agreed to make.

How to find the best insurance option for you

Finding the best insurance if you have a long-term condition can be tricky. Here are some tips:

  • Use an insurance broker: An insurance broker or advisor can help you by explaining the pros and cons of different options, including what each policy does and doesn’t cover [5]. They should also know which companies offer tailored insurance products. You can find a broker via the British Insurance Brokers' Association (BIBA) or the Association of Medical Insurers and Intermediaries (AMII).
  • Do your research: Give yourself plenty of time to read through each policy carefully. What is covered and what is excluded? How much is the premium? What is the maximum claim? Do you need to pay money towards a claim (the excess)?
  • See what others say: To choose between providers, it can help to look for independent customer reviews online. For example, how easy have others found it to make a claim if needed? Remember that products change over time and your policy might differ to others’ though, so your own experience could differ to theirs.
  • Consider getting separate insurance: If you’re looking for insurance for you and your family, look into whether it is better to get your insurance separately to theirs. This means the rest of your family might be able to benefit from a cheaper, standard policy.

What if you don’t tell the insurance company that you have PKD?

When asked, you should always let your insurer know about any health conditions you’ve been diagnosed with. You should also keep them up to date about any new conditions you develop, in line with your policy.

If you don’t share this information, it could invalidate your whole insurance policy. This means any claim you make could be refused, whether or not it relates to your PKD.

What if you have a PKD gene but have no signs of ADPKD?

If a relative of yours has been diagnosed with ADPKD, you might decide to get a genetic test to see if you have the gene too. If you have no symptoms, this is called a predictive test, as it is being used to predict whether you’ll develop ADPKD in the future.

Insurers are not allowed to ask you about the results of predictive genetic tests or use them to set premiums. However, if a genetic test was used to confirm your diagnosis of ADPKD, you do need to let them know if asked.

Genetic tests for ARPKD would usually be diagnostic, as it’s unlikely you would not have any symptoms.

If you’re not sure whether your genetic test was diagnostic or predictive, ask your genetics counsellor, kidney specialist, or GP to confirm.

To learn more about genetic testing and insurance, see the Association of British Insurers (ABI) guide

Information and support from others

UK insurance companies

By law, we cannot recommend any insurer or financial services provider. However, we are confident that the companies listed below can help you. They have access to a large panel of leading insurers, so that you can compare prices and choose the policy that best suits your needs.

For every policy sold, some firms will give a donation directly to the PKD Charity at no additional cost to you. These firms already work with a number of charities like us on the same basis. But please note that we are not endorsing them as exclusive providers of cover.

Authors and contributors

Written by Hannah Bridges, PhD, HB Health Comms Ltd, UK.

With thanks to all those affected by ADPKD who contributed to this publication.

Ref No: V2.0
Last updated: Jul 2023
Next scheduled review: Jul 2026

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

We welcome feedback on all our health information. If you would like to give feedback about this information, please email

If you don't have access to a printer and would like a printed version of this information sheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 9:30am-5pm) or email .

The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.