Thank you for the opportunity to participate in the consultation.
I, Kristin Mesteig, and my colleague Bjørn-Kristian Svendsrud represent the Coalition for Rare Diseases, which consists of several biotechnology companies. We work to improve the treatment and quality of life of people with rare diagnoses, with the ambition of giving patients more years of good life.
The Coalition has followed the field of rare diseases closely since we were established in 2015. During this period, we have raised several important issues and have contributed with a focus on rare diseases in a number of processes in the Norwegian Parliament. In particular, we have focused on proper funding schemes, rarity as a separate priority criterion, the importance of patients' rights being safeguarded in the specialist health service, and the need for a national strategy for rare diagnoses.
We have warned against several changes in the health service that have had a negative impact on rare diseases. This applies in particular to the consequences of the transfer of medicines for rare diseases to hospitals and the challenges that treatments for this group have faced in New Methods.
The Storting has been very responsive to our input, and has repeatedly stressed to the government and ministries the need to ensure that the rights of the rare are safeguarded.
Despite clear calls from the Storting, the rare disappear when the processes meet the administration. The national strategy for rare diagnoses does not mention the funding challenges in this area at all. Despite the fact that the evaluation of New Methods identifies treatments for rare diagnoses as a key challenge for the future, rare diseases are not mentioned in the regional health authorities' status report for the further development of New Methods OR in the Ministry's report on the same topic to the Storting.
The consequences of ignoring the signals from the Storting are as follows:
- The region in which you live determines whether you have access to treatment.
- Treatments for rare diagnoses are given lower priority in the New Methods system and are not assessed on the basis of criteria adapted to the patient group.
- The removal of functioning exemption schemes has particularly affected the rare.
The Coalition therefore encourages the members of the Health and Care Committee to follow up on these three specific issues:
- Ensure new national funding models that address known challenges for people living with a rare diagnosis
- Ensure that rare diagnoses are taken into account in the further development of New Methods and in the work on a new prioritisation report
- Ensure good infrastructure that enables further participation in European reference networks
The Coalition wishes the Committee well in its important work.