Skip to content

FrP: must make it easier for rare people to get treatment

    FrP, represented by Bård Hoksrud, submitted a proposal on 08.03. 2023 proposal to make it easier for people with rare diseases in Norway to get access to good and effective treatment.
    In brief, the proposal is as follows

    • National funding scheme
    • Rarity as a separate criterion
    • ensure rapid access to new and available medicines for patients with rare diagnoses


    Rare diagnoses are often serious, life-shortening diseases for which there is usually no treatment. Where treatment is available, it is often expensive and therefore difficult to access. The ability to treat patients with rare diagnoses is likely to increase in the future. Despite this, there are still examples of people with a rare diagnosis not getting the treatment they need from the public health system.

    There are also differences in the treatments offered in different health regions. Fast and good access to treatment wherever you live in the country should be a matter of course. Unfortunately, this is not the case today, and many patients find themselves struggling to get hospitals to cover the cost of effective treatments.

    The proposers believe it is important to recognize the seriousness of the current situation and show willingness to try new solutions that will ensure faster and better access to medicines for Norwegian patients. This is especially true for the small groups of patients who need it most - those living with rare diagnoses.

    The funding system needs to be adapted to rare diagnoses

    When hospitals decide on the treatment of a patient, two considerations must be weighed against each other: the criteria for prioritization and the right to appropriate health care. The Norwegian Parliament has previously adopted the national prioritization criteria that apply at all levels of the specialist health service. The New Methods system is responsible for ensuring that the services provided by the specialist health service are in line with the prioritization criteria. At the same time, each patient has a statutory right to appropriate health care.

    Recently, there have been several cases in the media that show the problems that arise when these considerations collide; the patient is not offered appropriate health care due to strict priorities in the New Approaches system. This is particularly true for patients with a rare diagnosis.

    The current financing system means that the cost of treating a patient with a rare diagnosis falls on the individual hospital or health region to which the patient belongs. When the responsibility to pay for a treatment is placed on the individual hospital or hospital department, the responsibility to treat a new rare patient can be very expensive for the local hospital or department.

    The current financing scheme thus challenges the principle of equal access to good treatment, regardless of where you live in the country. The reason is that each hospital has to set priorities within its own financial framework. Furthermore, it is known that treatment for a rare diagnosis is often provided by an expert in the diagnosis in question, and thus often takes place in a hospital outside the patient's home region. This creates financial uncertainty for each local hospital, which can make it difficult to prioritize treatment for rare patients. Private fundraisers and collections are often set up to enable patients to finance treatment. If the treatment works, they can get it covered by the public sector, but the risk then lies with the patient who has to raise large amounts of money upfront in order to receive treatment. This can lead to even greater inequalities in health care.

    The authors of the proposal therefore believe it is important that funding responsibility for the treatment of rare diseases should be at national level, and not in the budgets of individual hospitals, to ensure equal access to treatment for all.

    Rarity as a separate prioritization criterion

    Norway does not consider rare diseases as a separate area that needs to be adapted to be considered at the same level as major disease groups. Rare diagnoses are often congenital, they are very serious, and often require close follow-up from all parts of the health service. For individual hospitals and municipalities that have a patient with a rare diagnosis, it is often very resource-intensive to provide good treatment and follow-up.

    No patients with rare diseases should have their patient rights impaired as a result of the fact that the funding responsibility for treatment lies with the regional health authorities. Since 2019, there have been several breaches of patient rights for patients with a rare disease.

    The proposers therefore believe that rarity must become a separate criterion for prioritization, precisely because of its rarity and in order to safeguard patients' rights.

    Norwegian patients deserve fast access to new and accessible medicines

    The proposers believe there is a need to adapt the current system for introducing new treatments also to rare diagnoses.

    The current system and organization needs to be structured in a more sensible way, with wise solutions for the introduction of new medicines for people with rare diagnoses. This will help ensure that patients with a rare disease will be prioritized on equal terms with larger patient groups, which is not the case today.

    In the past, Norway, along with Denmark, was among the first countries in the world to introduce access to new medicines and treatments. New figures show that Norway has become a laggard in approving new medicines.

    The current system is bureaucratic, slow and not adapted to the current situation for patients with a rare disease. This means that access to new medicines for Norwegian patients is limited. The proposers believe it is important to ensure that new medicines and treatments are introduced as they are developed. This will also be in the best interests of patients and their relatives.

    Norway has gone from being a pioneer in ensuring that patients with rare diseases have access to new medicines and treatments, to being a laggard in their uptake. Therefore, the proposers believe that a national funding scheme needs to be put in place. This could be done, for example, through a national rare disease fund, based on the UK model.

    New and innovative medicines are difficult to make cost-effective from the start because it takes time to see the effects, such as patients being able to return to work. Until a drug can be shown to be cost-effective, it should be funded through a rare disease fund.

    In 2021, an Innovative Medicines Fund (IMF) was established by the NHS (equivalent to the Norwegian Ministry of Health) in the United Kingdom. The fund aims to ensure early access to the most clinically promising treatments and medicines for patients with rare diagnoses.

    The Fund was put in place following the highly successful creation of a Cancer Drugs Fund, along the same lines, to provide access to new and innovative cancer drugs.

    The fund has been a success in the UK, which is why a separate fund for innovative medicines has now been created.


    Against this background, the following proposal is made:

    1. The Storting asks the Government to return to the Storting with a separate case on a change in the financing responsibility for hospitals for the treatment of rare diseases, through a national scheme, such as a fund for rare diseases or a nationally financed prescription.
    2. In connection with the new prioritization report for the health and care services, the Storting asks the Government to set "rarity" as a separate criterion, thus ensuring that the special characteristics of rare diagnoses are captured.
    3. The Parliament asks the Government to return to the Parliament in an appropriate manner with a plan on how to ensure rapid access to new and available medicines for patients with rare diagnoses.