A Critical Success Factor for Investing in Prevention, is a good 'business case' and the careful calculation of the costs and benefits. To demonstrate the benefit and increase the impact of prevention, the entire chain of stakeholders must be involved.


High cholesterol can be hereditary, Familial Hypercholesterolaemia (FH) called. In the Netherlands 1 on the 240 people this hereditary condition. This amounts to approx 70.000 people. You notice too high cholesterol (in the first instance) nothing. This means that a person with FH often does not come to the general practitioner or specialist with a care request. Only through active detection can the FH families and undiagnosed FH patients be mapped.

Timely diagnosis and treatment are important for patients with FH. Before it 20and every years of age, serious arteriosclerosis can occur unnoticed. Because of this there is a very high risk of heart- disease. With early diagnosis and correct treatment, an average FH patient gains eleven healthy life years.

In recent years, several parties have made efforts to trace people with FH. This resulted in the LEEFH foundation. Today, the LEEFH Foundation is committed to detecting FH patients early and informing them about the risks, the diagnosis and treatment, for heart- prevent cardiovascular disease. LEEFH would also like to actively track down potential patients, but the possibilities are limited to helping index patients inform their relatives.


In 1993 the StOEH was founded (Foundation for the Detection of Hereditary Hypercholesterolemia). When with a first family member, through DNA research, FH was diagnosed, family members were actively approached through systematic investigation. The approach was very accessible. During a home visit, information was given and blood was taken for cholesterol measurement and DNA testing. In 2003 this approach was 'recognised' as a population screening under the auspices of CVZ (later RIVM) and funded by VWS. However, the population screening stopped at the end 2013. The Ministry of Health, Welfare and Sport's assignment was then to include tracing family members in regular care. This is the end 2013 LEEFH foundation established. LEEFH takes on the national coordination of FH care with the aim of 40.000 undetected persons to be found.

From 2014 FH detection falls under 'insured care'. As a result, there can be no question of active investigation as took place during the population screening. This is because this does not fall within the frameworks drawn up by the National Health Care Institute. A family member who suspects FH will have to report a care question. LEEFH has therefore built up a network of regional FH expertise centers. They help index patients to inform their relatives. This as an extra task in addition to determining the correct diagnosis and treatment.


At first, the population screening seemed successful. Until 2012 it was assumed that the FH prevalence 1 on 400 was (40.000 people with FH in the Netherlands). Based on these figures, the set target seemed achievable; diagnosing 70%, 28.000 FH patients. New research in 2012 showed, however, that the correct prevalence of FH in the Netherlands 1 on 240 is. The actual percentage of FH patients diagnosed was therefore much lower (41%). Based on this newly acquired knowledge, it seemed a logical step to continue the population screening. However, ending this was over 2013 an irreversible decision.

After cessation of active screening, the number of registered patients per year decreased by 78%. Potential patients were now less easy to reach, because the responsibility for approaching potential patients lay with family members. In 2016 LEEFH therefore decided to talk to VWS again. This with the aim of obtaining permission and resources for active investigation again. Unfortunately, this attempt was unsuccessful and LEEFH's capabilities are limited to helping index patients inform their relatives.. The result is that still 58% of people with FH do not know that they are hereditary and can gain several healthy years of life with proper treatment.


  1. Not everything can be foreseen. Financing was stopped, while the need for the population screening because of a higher prevalence turned out to be greater than previously thought.
  2. Unilateral dependence on financing makes vulnerable, especially when it comes to 'prevention' activity- and goes. Unfortunately, financing prevention is still tricky because the person who pays the costs is not always the one who reaps the benefits.
  3. It is important to properly substantiate and calculate plans. When the VWS knocked on the door, the exact knowledge and figures with which to demonstrate the necessity were not yet available. In response to this, a business case was drawn up in collaboration with the consultancy company Vintura. This business case will form the basis for a new attempt to realize active detection of FH patients.
  4. When drawing up the business case, the realization came that attention should not only be paid to the investigation. In the same chain, a correct diagnosis and subsequent treatment also require sufficient attention. Only then can the investment that must be made in the population screening achieve its intended return.

Name: Janneke Wittekoek and Manon Houter
Organization: LEEFH


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