Rare diseases

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Rare diseases

Just two decades ago, patients with cystic fibrosis – one of the most well-known rare diseases – rarely survived to adulthood. Yet nowadays, a child suffering from cystic fibrosis has a good chance of living to the age of 50. Why rare diseases are more calculable today for insurers.

The life insurance application submitted by a 35-year-old Australian woman looked certain to ruin the day of the insurance technician. In the questionnaire, the woman had stated that she suffered from Lynch syndrome. The problem with Lynch syndrome is that it falls into the category of what are termed "rare diseases". These are diseases that affect a maximum of one in 2,000 people. So how was the insurance employee to carry out the required risk assessment? There is not a single study worldwide that assesses life expectancy for patients with Lynch syndrome. In view of the indeterminable risk, would a direct insurer not be better off turning down the policy?

That would certainly have been the less acceptable solution. Declining a potential contractual partner simply because there is not enough knowledge about their illness does not cast insurance or the industry in general in a very positive light. After all, advances in clinical medicine have an impact on insurance medicine. In the 1960s, pacemakers were categorised as an "experimental risk", yet today patients with pacemakers are insured without any risk loading, provided there are no other risk factors involved. In addition to which, the insurance company would be losing out on a potential market share because rare diseases, as paradoxical as it may sound, are on the rise. Experts currently number around 6,000 diseases in the category, and the figure will probably rise to 8,000 before too long. Already today, 7% of the world's population is affected – in Europe, this corresponds to 30 million people with around 4 million sufferers in Germany alone. And the figures are expected to increase. According to estimates, as many as 10% of prospective policyholders will present with a rare disease in the year 2020. What are the reasons for this increase?

The history of medicine: Identifying and diagnosing diseases

In actual fact, it is medical advances themselves that are leading to the growing number of cases. Whether a patient is ill or not depends on the symptoms. But how a disease is identified is a question of diagnosis. And the options for diagnosis have steadily multiplied over the course of medical history. Back in 1530, Theophrastus Bombastus von Hohenheim, better known as Paracelsus, viewed disease in a philosophical light, because "the eyes of the physician are unable to penetrate the skin". However, today there are countless diagnostic methods available to doctors that allow them to do just that – and much more besides.

An initial endeavour to systematically record diseases can be found in the "London Bills of Mortality", which was the death list compiled in the plague year of 1665. The cause of death, however, was often given simply as "fever" – or even "teeth". And right up to the 19th century, irregular mixtures of humours (bodily fluids), or poisonous vapours known as miasmas, were seen as the cause of diseases. One of the first people to counter this romanticised belief was pathologist Jakob Henle in his "Handbook of rational pathology" from 1846 onwards. But it was not until many years later that his teaching on contagiousness, the principal pathogen, was confirmed by the ground-breaking findings of leading physicians like Rudolf Virchow (Theorie der Zellularpathologie, Theory of cellular pathology – 1858) and Robert Koch (Entdeckung des Milzbranderregers, Discovery of the anthrax pathogen – 1876). More and more diseases could now be precisely defined, their courses were more predictable and, in many cases, they were often open to treatment as a result.

A rare disease suffered by just one person in the world

Today, we speak about precision diagnosis, with which even unusual subtypes of common diseases like diabetes can be identified and systematically treated. Whereas doctors in the past puzzled about the different bodily fluids (humours), such as "yellow and black bile", physicians can now diagnose something as unusual as ribose-5-phosphate isomerase deficiency – a disease for which there has so far been just one patient worldwide!

The Berlin Centre for Rare Diseases (Berliner Centrum für Seltene Erkrankungen – BCSE) was established at the Charité Hospital in Berlin in 2011 to provide treatment options even for extreme cases. The centre's experts collate experience from different hospitals, assess it and then develop healthcare structures. Patients with rare diseases should thus be able to find the right contacts for diagnosis and treatment. Research on the individual disease patterns is also bundled here, which means that an increasing number of specific forms of treatment can be offered. Since 2013, the centre has been assisted by the Nationale Aktionsplan für Menschen mit Seltenen Erkrankungen (National action plan for people with rare diseases). Project funding amounting to up to €27m aims to improve national and European research partnerships by 2018. The Zentrale Informationsportal Seltene Erkrankungen (Central information portal on rare diseases – ZIPSE) serves as a source of information for sufferers.

The Gate – Munich Re's internal platform

Its expertise is also used by Munich Re's specialists at the Group’s centre of medical competence in Munich. They apply the available medical, biological and underwriting expertise to represent the insurance risks in model form, even where there is only a very sparse pool of data. In contrast to a clinical physician, they face the difficulty that they are unable to observe the course of the disease in the patient, yet they must make a decision about the future course of the disease. The decision they reach will have irreversible financial repercussions over the entire duration of the insurance contract. For this reason, in addition to the question of whether an insurance application should be accepted or declined, a limitation to the term must also be considered.

The centre of competence's findings are available on the internal knowledge platform The Gate: "Get access to medical expertise". It collates in anonymised form the different individual medical histories, the results of relevant examinations, the decisions made on a case-by-case basis, and all the data and calculation models applied for the decisions. The information on the 35-year-old patient with Lynch syndrome was also incorporated into this database. Despite her illness, would it still be possible to acquiesce to the applicant's wish to take out a life insurance policy?

A positive result for both the patient and the insurer

Since no studies were available, a workaround needed to be found. Despite the fact that the mortality rate could not be determined for Lynch syndrome directly, the probability of contracting certain types of cancer, such as intestinal cancer, could be calculated. And there are mortality tables for this with a high level of forecasting reliability. It was possible to calculate the risk for the life insurance policy using a combination of these results and a model of the probability calculation. Ultimately, the recommendation given was to insure the patient with a moderate loading despite her rare disease. It was a good result, both for the woman concerned and the Australian insurer.

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