Travel Insurance & Inherited Metabolic Disorders

Metabolic Support UK Survey

Metabolic Support UK have done some incredible work into the important issue of families struggling to obtain travel insurance to provide coverage for their inherited metabolic disorder. The survey results are available to view and actions MSUK have taken to help.

Alex - The Leukodystrophy Charity

Survey Results as shared by MSUK

What did we find out?

Please find below a summary of the findings, where we discovered that:

  • 60% have experienced difficulties in getting travel insurance to cover the IMD they are living with.
  • 73% worry about getting travel insurance to cover the IMD they are living with.
  • 59% who have looked for travel insurance in past 2 years have said it’s either become more difficult to find cover or they can’t find cover at all

We will also follow up with disorder specific data with individual patient organisations where there is sufficient sample size.

Summary of the findings from the survey: Survey Findings

Alex - The Leukodystrophy Charity

Actions Taken as shared by MSUK

What have we done since?

We’ve held meetings with leaders at two travel insurers (StaySure and Just Travel Cover) who specialise in cover for pre-existing medical conditions. We’ve also met with Verisk, the market leader in medical screening who supply risk analytics for much of the travel insurance market. From these conversations, we’ve learnt that:

  • The market has consolidated: The disruption caused by Covid and Brexit has led to a significant number of insurers withdrawing entirely from the travel insurance market, which is contributing to our communities to experience seeing either a lack of cover, increased premiums and/or more intense screening.
  • There’s been an increased reliance on privatised healthcare for claims: With state healthcare resources concentrated towards Covid across the world, there have been an increased share of travel insurance claims made where more expensive privatised medical care has been required for reimbursement. This has resulted in an increase in price premiums.
  • Recent regulatory change is still playing out: travel insurers must now signpost certain consumers with pre-existing medical conditions where obtaining cover is difficult to a directory of specialist providers that have the appetite and capability to cover consumers with these conditions. Two directories are now in place:

1) MoneyHelper

2) BIBA (British Insurance Brokers’ Association)

To be placed on the directory, these travel insurers have been authorised and regulated by the Financial Conduct Authority (FCA) following a rigorous selection process to prove their specialism. This means that there is an increased onus on the consumer to go to individual firms to get a quote, which we recognise as a burden on the already stretched time and demands of a person or family living with an IMD – however BIBA have links to brokers who can do this shopping around on a user’s behalf.

What are we doing next?

We are pursuing several lines of enquiry with the goal of boosting travel insurance coverage for people living with IMD’s:

  • Further discussions with Verisk’s technical teams – one key question we still have is to what level of data and insight do medical screeners have about IMD’s. As we know, evidence is often lacking in the world of rare disease; does that mean the risk presented to travel insurers when they make their decisions is potentially unnecessarily higher than the reality of the condition? We will probe for any opportunity for patient organisations to plug that insight gap if that is the case.
  • Continued dialogue with travel insurers – ultimately, insurers offer products based on their appetite for the risk presented to them. We will encourage insurers to be flexible and thorough in how they make decisions for people with rare disease, urging them to go beyond the risk rating and to truly understand the individual scenario at hand.
  • Educating our communities – we are planning to conduct an educational piece for the IMD community, to give them a stronger understanding of the travel insurance process along with hints and tips to help them navigate getting cover. We will share this with you all once complete.
Alex - The Leukodystrophy Charity