We are fighting to give my mother one more chance.
My mother, Irina, is 55 years old and a mother of five. She was diagnosed with acute myeloid leukemia (AML) in March 2025. In less than two years, she has already endured eight lines of treatment, including three clinical trials, yet her leukemia continues to progress.
She had just turned 55 when, the very next day, she was hospitalized because her disease had progressed.
Throughout her treatment, our family has repeatedly been told that there were no other options. There have also been times when delays and mistakes in her care could have ended her treatment journey if we had not pushed for answers and fought to find another path. Every time we were told there was nothing left to try, we kept searching. And each time, we found another possibility.
Now, her doctors at Memorial Sloan Kettering have identified another potential path.
Her leukemia carries a rare molecular profile, including an NRAS G12D mutation. After exhausting standard and investigational options, her doctors prescribed daraxonrasib (Rasonque™), a targeted therapy that addresses the RAS pathway driving her disease.
The drug is FDA-approved for metastatic pancreatic cancer, but not AML. Her oncologist prescribed it off-label based on her specific molecular profile, the scientific evidence supporting RAS-pathway inhibition in AML, and the goal of getting her into remission so she can potentially proceed to an allogeneic stem cell transplant.
Her insurance company, Fidelis Care, denied coverage because the drug is not FDA-approved for AML. We appealed the decision, including through an external appeal, but they upheld the denial.
Now, while my mother is hospitalized and her disease is progressing, we are trying to find a way to obtain a medication that her doctors believe could give her a path to remission and potentially to transplant.
We have fought every step of the way—appealing the insurance denial, contacting the manufacturer about potential assistance, and seeking help from patient advocates and elected officials. We have also started a GoFundMe to help cover the cost of treatment while we continue fighting for access.
My mother is more than her diagnosis. She is a daughter, a sister, a wife, and a mother of five. She has spent her life caring for the people she loves. Now, we are fighting to care for her.
We have been told before that there were no other options. We kept fighting, and we found another path.
We are fighting again.
I am sharing her story in the hope that it can reach people who may be able to help us access this treatment, connect us with resources, or simply amplify her story.
Elizabeth
Family member, caregiver, advocate
