Julia Maués

@itsnotpink.bsky.social

She/Her. Living w #MBC since '13 & advocating for people w MBC to LIVE. #AntiRacist #InclusionPledge. Co-founder of @graspcancer.bsky.social & @therightdose.bsky.social. 🇧🇷🇺🇸🇩🇪

What an honor to join the Executive Board of @bigxresearch.bsky.social! As someone living w metastatic breast cancer & connected to many other patients, I’m excited to support research that reflects what truly matters to people dealing with this disease. 🔗 bigagainstbreastcancer.org/about-big/go...

Governance

BIG is dedicated to supporting all research stakeholders and facilitating ethically sound human research for breast cancer.

bigagainstbreastcancer.org

Once at cancer mtg where a drug was called “tolerable” from the stage w/high low-grade SE % & at least 1 grade 5, which a more experienced patient told me meant death. Also fwiw, pls partner with patients themselves, who are not mentioned as sources of knowledge here #cansky #language #patients

Article quote about the serious consequences on quality of life of continuous low-grade side effectsA list of possible collaborators for improving adherence to guidelines of treatment toxicity reporting, which does not specifically name patients themselves nor their nonprofit representatives
Julie Gralow@jrgralow.bsky.social · last yr.

Study: Toxicity Data From Phase III Oncology Clinical Trials Often Is Incomplete & Interpreted In Ways That Minimize Its Impact www.healio.com/news/hematol... @gohealio.bsky.social

Alarming #cansky stats. We need better and deeper implementation of quality metrics in healthcare to help patients get guideline concordant care wherever they seek it.

Lisa MG, RN@lmg622.bsky.social · last yr.

Prevalence of #GeneticTesting in Women With #OvarianCancer: Investigators have found that nearly 50% of women diagnosed with ovca may not be receiving testing that could help guide their treatment. Via @ascopost.bsky.social #gyncsm #hereditarycancer #womenshealth #BRCA #cancerresearch #medsky

Noticeably silent amid the upheaval at HHS? Big pharma. Every new drug has NIH somewhere in its DNA--and NIH funding supports the training of their workforce. Now they're finding out FDA isn't safe, either. Wrote about how keeping quiet isn't working My latest @opinion.bloomberg.com (gift link):

Big Pharma Needs to Get Off the Sidelines

The industry can’t continue to sit idly by while Robert F. Kennedy Jr. guts the nation’s public health agencies.

bloomberg.com