PV Patient Advocate Welcomes Treatment Advancement Through Clinical Trial

November 26, 2025
Alex Biese
Alex Biese

A nationally-published, award-winning journalist, Alex Biese joined the CURE team as an assistant managing editor in April 2023. Prior to that, Alex's work was published in outlets including the Chicago Sun-Times, MTV.com, USA TODAY and the Press of Atlantic City. Alex is a member of NLGJA: The Association of LGBTQ+ Journalists, and also performs at the Jersey Shore with the acoustic jam band Somewhat Relative.

After more than 30 years since she was first diagnosed with a myeloproliferative neoplasm, Nona Baker is hopeful for the future thanks to current clinical trial landscape.

After more than 30 years since she was first diagnosed with a myeloproliferative neoplasm (MPN), a type of blood cancer, survivor and patient advocate Nona Baker is hopeful for the future thanks to current clinical trial landscape.

Baker, who is based in the United Kingdom, recently sat down for an interview with CURE alongside Dr. Marina Kremyanskaya, the lead investigator of the SANRECO trial investigating divesiran for the treatment of polycythemia vera, a type of MPN characterized by the excessive production of red blood cells.

Baker had received a diagnosis of essential thrombocythemia (ET) in 1991, followed by polycythemia vera (PV) in 2004.

“From the science community and wonderful doctors like Marina, to just hear that there are studies like this, I promise you, is music to my ears,” Baker told CURE.

Transcript

What are your thoughts on the SANRECO trial?

There are not a lot of options for patients with PV, and so it is so exciting to hear of something new. You know, not all of us can tolerate some of the existing drugs, and I certainly have had other side effects from other drugs I've tried. So I think, from the science community and wonderful doctors like Marina, to just hear that there are studies like this, I promise you, is music to my ears. You know, I hear from so many, because I'm part of this charity called MPN Voice and I meet with a lot of patients with PV, and I hear the same thing, the same sort of side effects. And thank you for Marina for highlighting itch, which is another big side effect for a lot of people. And you know, it will be wonderful. It will be absolutely wonderful to have something like this come to fruition for all of us patients.

Transcript has been edited for clarity and conciseness.

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