The Rose Transparency Act

Hi everyone, my name is Neffie. I’m speaking to all Alaskans to join me in the fight for the Rose Transparency Act, in honor of my mom, Rose, from the Tlingit Nation, who passed away from mucosal melanoma after a 30-month battle.

My mom didn’t run out of options. Her doctors either didn’t know how to help her or didn’t care enough to try. She never received the critical tests that could have help guide her treatment.  I finally got her tumor tested with an NGS panel, 8 months too late, I discovered that she had genetic variants that could have opened doors to clinical trials, and that the immunotherapy treatment she was receiving for over a year a half would never have worked for her. But no one on her care team shared this with us.  Instead, she was given the bare minimum, until pneumonia and sepsis ended her life. 

This cannot keep happening. Every cancer patient deserves full transparency from day one: the right tests, the right information, and the right to fight with everything available. No more being poisoned with generic treatments that don’t work and continue to compromise your immune system. 

That’s why I’m fighting for the Rose Transparency Act. If you’re an Alaskan voter,  share this. You’re standing up for every cancer patient: those we’ve lost, those still fighting, and anyone you love who could face this tomorrow. We can’t stay silent — we’re all in this together.

For my mom.  For every cancer patient. Enough is enough !

This petition is for all registered Alaska voters who want to support the Rose Transparency Act.

Cancer patients deserve clarity, not confusion. The Rose Transparency Act demands full medical treatment transparency before treatment begins, ensuring every patient has access to a clear and comprehensive road map of care that includes:

 • All available treatment options: standard of care, targeted therapies, immunotherapies, and palliative choices.

 • Clinical trial opportunities: presented at the start, never as a last resort.

 • Biomarker and genetic sequencing tests: so treatments can be personalized to each patient, and no wasting time on treatments the waste time and prolong

 • Incremental biopsies during treatment: to detect new mutations and guide real-time adjustments.

 • Physician accountability: requiring oncologists to stay current on FDA programs such as Expanded Access and Right-to-Try.

These rights must be non-negotiable. They give patients the ability to research, advocate for themselves, and make informed choices at every stage of care. When these standards aren’t upheld, it’s not just a failure to the individual, it’s a disservice to the entire community.

Cancer is rising, with new variants of the disease emerging each year. Over 40% of Americans will face a cancer diagnosis in their lifetime (American Cancer Society), and by 2050, that number could climb to 77% of the population. This isn’t abstract—it’s our families, our friends, and ourselves.

The Rose Transparency Act ensures no one enters cancer treatment in the dark.