Norwegian Woman’s Battle for Cancer Treatment Highlights Healthcare Access Challenges

A Norwegian woman, Mirjam Jonassen, is facing a difficult battle not only with bile duct cancer but also with the country’s healthcare system to access a potentially life-saving targeted therapy. Her case has sparked debate about the challenges patients face in obtaining necessary treatment, even in a nation with a universal healthcare system.

Rare Cancer Diagnosis and Targeted Treatment Option

In August 2023, Mirjam Jonassen received a diagnosis of bile duct cancer, a rare and serious form of the disease. Bile duct cancer affects the ducts that carry bile from the liver to the compact intestine. Common symptoms include jaundice, dark urine, pale stools, fatigue, reduced appetite, and weight loss.

Genetic testing revealed Jonassen has an FGFR2 mutation, making her eligible for treatment with pemigatinib, a targeted therapy designed to attack specific cancer cell weaknesses. However, the Norwegian Decision Forum, responsible for determining which new medicines are covered by the public healthcare system, has not approved pemigatinib for routine use.

Chemotherapy Failure and Application Refusal

Jonassen initially underwent traditional chemotherapy in September 2023, but the treatment proved ineffective after three months, causing severe side effects including fever and low blood cell counts. Her application for pemigatinib was subsequently denied by the Decision Forum without specific justification.

Crowdfunding Effort to Afford Treatment

Faced with limited options, Jonassen’s family launched a crowdfunding campaign to afford the medication privately. The cost of pemigatinib is approximately NOK 130,000 (roughly $12,000 USD) per month, creating a significant financial burden.

The Decision Forum and Individual Access Schemes

The Decision Forum (Beslutningsforum) evaluates new treatments based on factors like documented benefit, cost-effectiveness, and severity of illness. New Methods (Nye Metoder), the Norwegian Health Directorate’s body for assessing new health technologies, provides recommendations to the Decision Forum.

Jonassen applied for access to pemigatinib through the individual access scheme, arguing her specific circumstances warranted an exception. However, this application was also rejected in January 2024. According to Jan Frich, leader of the Decision Forum, individual access applications are not considered formal decisions and therefore do not have a standard appeals process. Patients can complain to the state administrator or pursue legal action, but the process is complex.

Ministry of Health Response and Treatment Criteria

State Secretary Karl Kristian Bekeng of the Ministry of Health emphasized that patients should not face financial barriers to healthcare. However, he explained that new treatments are only adopted when they meet stringent criteria regarding documented benefit and resource utilization.

The Ministry indicated that the manufacturer of pemigatinib, Incyte, had its assessment request rejected in 2025 due to insufficient documentation to justify the current price level. The individual access scheme requires patients to demonstrate significantly greater benefit or severity of illness compared to the patient group initially assessed by the Decision Forum.

Supplier’s Perspective and Ongoing Efforts

Incyte, the pharmaceutical company that manufactures pemigatinib, has been attempting to gain approval in Norway for several years. Incyte states they have submitted four proposals, including price reductions and performance-based agreements, all of which were rejected. A new assessment request in 2025, supported by real-world data, was also unsuccessful. The company maintains that the price in Norway is comparable to other European countries.

Hope and Advocacy

Jonassen’s doctors recommended she purchase the medication privately and document its effects for three months to support a future application for coverage. She hopes her case will raise awareness about the challenges patients face in accessing necessary treatments within the Norwegian healthcare system. The crowdfunding campaign has provided initial funding, but continued access to pemigatinib depends on sustained financial support and a potential change in the Decision Forum’s stance.

Key Takeaways

• Mirjam Jonassen’s case highlights the difficulties patients can face in accessing innovative cancer treatments, even in countries with universal healthcare.
• The Norwegian Decision Forum’s criteria for approving new medications can create barriers for patients with rare conditions or specific genetic mutations.
• Crowdfunding is increasingly used to bridge the gap between healthcare needs and system limitations.
• The case raises questions about the balance between cost-effectiveness and patient access to potentially life-saving therapies.