Irene Mjelde denied access to experimental ILB drug for ALS
- Irene Mjelde of Ålesund faces a terminal diagnosis of the rare and incurable nervous system disease ALS.
- While she and her husband, Reidar, crossed the Finnmarksvidda on skis from Alta to Karasjok, she noticed her tongue was not functioning correctly.
- It took two years of consultations with doctors, neurologists, and specialists before Mjelde received the formal ALS diagnosis.
Irene Mjelde of Ålesund faces a terminal diagnosis of the rare and incurable nervous system disease ALS. She has lost her ability to speak as the condition advanced, according to reporting by NRK.
The Ski Trip That Changed Everything
The first symptoms appeared two and a half years ago. While she and her husband, Reidar, crossed the Finnmarksvidda on skis from Alta to Karasjok, she noticed her tongue was not functioning correctly.
A Two-Year Wait for a Devastating Answer
It took two years of consultations with doctors, neurologists, and specialists before Mjelde received the formal ALS diagnosis. By the time physicians identified the condition, the progressive disease had already caused her tongue muscles to fail, stripping away her voice.
She now communicates using a small tablet-like speech machine placed on her lap. It serves as the only visible physical evidence of her illness while she retains the ability to move otherwise.
Thirty-Seven Years and a Family United in Grief
Mjelde and her husband have shared 37 years of marriage, raising two children and welcoming four grandchildren.
Her daughter, Kristine Mjelde Solevåg, described experiencing deep grief, frustration, anger, and fear upon learning of the diagnosis and the brutal nature of the illness that will eventually take her mother. Despite the prognosis, the family remains close-knit, living in the same neighborhood and maintaining a tradition of traveling together.
Racing Against Time Across the Globe
Following her diagnosis, travel became an increasingly urgent priority. The family took trips to destinations including the Caribbean, Rome, and Berlin.
In October 2025, Mjelde and her husband traveled to Rome to run a half marathon and celebrate their wedding anniversary. A previous trip in December 2024 included a kayaking excursion in Ha Long Bay, Vietnam.
Closed Doors on Experimental Trials
Mjelde hoped to access an experimental treatment known as ILB. This new drug is being researched in clinical studies at Oslo University Hospital to determine if it can slow the progression of ALS.
Researchers established a strict criterion that participants must begin the trial within two years of symptom onset, ruling out Mjelde because her symptoms began more than two years prior. The medication remains unapproved in Norway and internationally, and researchers are still gathering data regarding its efficacy and potential side effects.
A New Parliamentary Pathway in March
A political shift arrived in March when the Storting passed a unanimous resolution. The measure created a pathway for patients with fatal diseases to apply for access to unapproved drugs through an exemption scheme typically used for medications not marketed in Norway.
The parliamentary decision offered renewed hope to Mjelde and other ALS patients seeking access to experimental therapies.