Earlier this year, reported the dagens nyheter (28/5 2019), if the six-year-old Vilfred, who four years ago was gravely ill with cancer. With the help of a genetic survey of the entire human genome was for his doctor to identify a gene, and putting in an entirely new previously untried treatment. At present, there are Vilfred, which is a healthy six-year-old.
There are other examples in which the so-called " precisionsmedicin (see box below), offer new possibilities to opt for an effective treatment based on the patient's individual circumstances. It is a rare disease in which a man, with the help of the detailed information provided by a genetic study of the entire human genome, the so-called helgenomsekvensering, and in many cases are able to make a diagnosis, and thus to give the child proper care. Getting a diagnosis can be of great help to the family, and the possibility to have access to the right treatment.
There are, among other things, the rapid development of technology in the broad gensekvensering, and the acceptance of completely new procedures that have made these advances possible. In practice, this means precisionsmedicin for a more tailor-made care, where each patient can receive more effective treatment in reducing the risk of short - term and long-term side-effects. In addition to the obvious patientnyttan can precisionsmedicin in addition, in the longer term, to contribute to the reduction of health care costs.
in Spite of the precisionsmedicinens great potential to change the way they diagnose and treat patients, there are a number of challenges related to its implementation in the health care system. It is a matter of both legal and ethical barriers, that is, now the brakes, and health care, the academy and the industry to work. The other big challenges in terms of long-term financing of the health care infrastructure of the precisionsmedicin, as well as the issue of equality of access to the precisionsmedicin all over the country. If we do not tackle these challenges is now, there is a real danger that patients who, for too long, it will miss out on the development of new treatments that precisionsmedicin opens up.
in order to meet the challenge of the introduction of the precisionsmedicin in the health care system. The GMS is based on the initiative of the universities and the healthcare principals, and the finance of a project with limited funding over a short period of time.
in Many other countries, is investing heavily in order to introduce the precisionsmedicin. In Denmark, for example, invested sek 1.4 billion in a national genomcenter. Finland has, like Denmark, have put in place a modern regulatory environment, in order to ensure that the health-related data, such as genetic data, can be shared and made available not only for direct patient care, but also for the research and development of new treatments, in collaboration with the business community.
in Order to ensure that patients in Sweden have access to the precisionsmedicin, we suggest, of representatives of the DMS, together with the stakeholders, the government of the urgency to act.
1 , Modernising the law on management of data. , in Order to precisionsmedicin going to be for the benefit of the patient, the individual data are to be compared with the data from other patients. Genetic data, therefore, must be able to be shared and linked together using the information from unique registers, and other data.
There are a great deal of willingness to share data, for the development of health care, from the patient's side, but today, there is great confusion about what the rules are. There can be no doubt as to the protection of personal data and, therefore, have laws and regulations to be clear and relevant. The government will now have to take a national approach to how the existing framework can be updated in order to support the development of the precisionsmedicin.
2 , Providing a sustainable and adequate funding.Swedish health care is grappling with substantial cost savings and cut-backs. Therefore, it is unreasonable that the health-care regions shall assume the costs of building a national infrastructure for the precisionsmedicin. For the precisionsmedicin has become a part of routine medical care is needed, therefore, is a comprehensive, long-term funding at a national level.
3 , Take the responsibility of a long-term national co-ordination. Of the day, the responsibility of several different government policies, funding, regulations, and laws relating to precisionsmedicin, which contributes to an unfortunate fragmentation within a region where no one takes overall responsibility. The regions want to cooperate in the precisionsmedicin but they need the tools to deal with the challenges that are in the area. Here, the need for a clear national co-ordination of the central government.
it is well in line with the objectives of the eu, which the government are proposing in the national life science strategy, which was published on the 12th of december. Now, it is of the utmost importance that the state takes an overall responsibility for the precisionsmedicin, and to take concrete measures on the basis of the strategy is to ensure that patients in Sweden have equal access to the best medical care. Sweden is a small country, and build parallel structures of the region-by-region in this specialist area, we need to collect the resources.
and If no action is taken, there is a real risk that patients who do not have access to the new treatments that are precisionsmedicin permit.