A retrospective study of medical and insurance records from the USA indicates that health care costs for people with a rare condition have been underestimated and are three to five times greater than the costs for people without a rare condition. Why are we not surprised? Finding out more about direct and indirect costs related to OI, was one of the aims behind the IMPACT survey, which closed on September 30th.

With the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2000 responses worldwide. The final estimate says 2278 responses from more than 65 countries! More cleaning of data is needed before we can announce the exact numbers of responses and people included in the survey. As you know, one survey response can hold information on several people. So who knows how many people are actually included!

Some of the leading OI-researchers are now analysing the data and planning scientific articles about costs in OI and other questions the survey will help us fill different knowledge gaps on. The knowledge gaps include what kind of medications adults with OI are taking today, which professionals people with OI are seeing, what worries people with OI have, if children with OI have problems accessing schools and whether there are differences between countries regarding this.

If we know more about the health-related costs (hospital bills, medications, rods etc) and the indirect costs (time away from work, adaptations, mobility aids etc) – we as OI-organizations can work with policy makers nationally and internationally to compensate some of these costs in a better way.

The data from the IMPACT survey can also be used when new medicines and advanced OI-treatments (for example gene therapies), hopefully passes the risk/benefit evaluation in EMA/FDA and becomes an object of cost/benefit evaluation (so-called health technology assessments or HTA) in X and Y country. Is improved quality of life for people with OI worth paying for? Of course, it is! Let’s hope the national health authorities agree with us when the time comes.

But let’s not forget that having OI impacts our lives in many more areas than health care. Quality of life in OI is about more than medicines, rehabilitation, and access to treatments. It’s also about living full lives in an inclusive society – irrespective of our visible or invisible disabilities, which might come and go.

Quality of life is about getting a job, getting friends, getting laid and about getting out of the house without having to face discrimination and ableism. These are important questions that especially young people with OI care about. They are not so into care pathways, drugs, health politics and access to genetic testing. And we totally get that. This is why we have made psychosocial issues and ableism the main topic of this magazine.

Focusing on psychosocial aspects is important not only for people who have OI themselves, but also for parents of children with OI (with or without OI), for siblings without OI and for the whole community. We hope you enjoy the new magazine and encourage your friends and contacts to read it! You can download it for free from this page.

Written by Ingunn Westerheim, OIFE president