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clarinetsax.bsky.social
Part of executive team at www.CancerSupportCommunity.org. Advocate for including Patient/Caregiver Experience, Health literacy/plain language in clinical & psychosocial research, health policy & value/HTA. Impact metrics & evaluation. Mom, cyclist, reader.
31 posts 392 followers 487 following
Prolific Poster

Make a difference in the lives of people facing cancer! Join www.cancersupportcommunity.org. We're #hiring 3 key roles: * VP, Helpline, Education, & Outreach: bit.ly/3XgHDtY * Manager, Program & #HealthEquity bit.ly/4bhTHksData * Manager, Research: bit.ly/3DeOcXe

#MedSky #IDSky #PublicHealth There is a widespread outbreak of #norovirus, a GI virus that causes projectile vomiting & profuse diarrhea usually lasting 24-48 hrs. Wastewater levels nationwide in 🇺🇸 are high. It’s miserable & incredibly contagious. So many friends are texting SOS, so here’s a 🧵. /1

So proud of my college student, Luke, who has found interesting things to do with what he is learning in class! www.linkedin.com/posts/lukesa... iustudentgovernment.indiana.edu/executive/su...

@melodyschreiber.com wrote about my recent wrangling with #PriorAuthorization in @theguardian.com It has been super frustrating

The USA trails developed countries in healthcare costs and outcomes for 5 key reasons:

The importance of vaccines! www.nytimes.com/2024/12/18/h... #MedSky

Top reasons #BreastCancer patients gave CancerSupportCommunity.org for not following their treatment plan 👇👇👇 Erica Fortune, PhD, presented findings about treatment tolerability & adherence at #SABCS24. Full poster: bit.ly/3VwuXyq #bcsm #GRASP #SABCS #cansky #oncsky

Rosa has worked in the apple harvest near Merced CA for the last 6 years. She says her shoulders and hands ache at the end of the day from the repetive motion of using the long handled shears to do her job. #WeFeedYou

Patients with low-risk DCIS had comparable physical, emotional and psychological outcomes to patients who received standard treatment, according to results of the phase 3 COMET trial presented by @danafarber.bsky.social’s Ann Partridge, MD, MPH, at #SABCS24. @dfcibreastonc.bsky.social bit.ly/3ZLSgXI

#SABCS24: 957 pts w low risk #DCIS randomized to receive “guideline-concordant care” vs active monitoring 🗝️ points @2 yrs: 1️⃣Non inferior for dx invasive #breastCancer (!!!) 2️⃣"Lived Experience” similar, QOL/anxiety not worse 3️⃣Most got ET but only 55% in GCC got surg jamanetwork.com/journals/jam...

The American Medical Association surveyed doctors about insurance “prior authorizations” and found: 41 prior auths per doctor per week 13 hours spent per week on prior auths 24% reported hospitalizations due to delays from prior auths 8% reported disability/deaths due to delays from prior auths

Thanks to everyone at @beigene.bsky.social for allowing me to talk about the advancements that have been made in #BreastCancer since I started in patient advocacy in 1998 as well as the many advancements that are still so needed! ow.ly/NEUA50UnQBX #CanSky #OncSky #BCSM #MedSky #Cancer #Oncology

The FDA Oncology’s Project Optimus aims to address dose optimization and was at least partly prompted by patients via PCDI #sabcs24 sabcs24

Really proud of my work wife (@itsnotpink.bsky.social) filling the shoes of the late Anne Loeser - the driving force & founder of @therightdose.bsky.social. She leaves a legacy that improves the lives of MBC patients who are on treatment indefinitely through drug dose optimization. #SABCS2024 #bcsm

Some results from our poster using the SEER database looking into outcomes disparities by race and socioeconomic status. Low socioeconomic status (SEE) means lower survival. When we stratify by race, Low SES means higher hazard risk of death in White and Hispanics but not in Black patients. #ASH

Medicare coverage for telehealth is set to expire on 12/31 — increasing barriers to care for those who depend on telehealth, including seniors, people with disabilities and underserved communities. We're fighting to extend this coverage so no one loses access to the care they need.

What are top barriers to care & psychosocial / practical needs of CAR T patients & caregivers in CancerSupportCommunity.org’s Proactive Navigation program? Read more: https://bit.ly/49oimmC Or watch our lead author: https://postercast.com/view_postercast.php?&sess=r6e1e3_Wj9E&posterfor=209343

If you’re at #ASH24, join me at 6pm tonight at poster #3716 to learn more about CancerSupportCommunity.org 's proactive CAR T patient & caregiver navigation. www.cancersupportcommunity.org/sites/defaul...

What do patients think is most important when deciding if a treatment is tolerable to them? Read this synopsis of research presented at #ASH24 by CancerSupportCommunity.org here: bit.ly/3VqQ9pI Or listen to Erica Fortune, PhD present on it here: postercast.com/view_posterc...

If you’re at #ASH24, join me now at poster #2437 to learn more about what patients think is important when deciding if a treatment is tolerable to them.

CancerSupportCommunity.org is at #ASH24 to learn more and find ways to partner to ensure EVERYONE with cancer has access to care & the support they want & need. Join the conversation! #CanSky #OncoSky #EquityInCancerCare 1/

Did you know that the Medicare Annual Open Enrollment window closes on December 7th? CSC's new resource reviews ten tips to understanding your Medicare Part D coverage. Learn more: CancerSupportCommunity.org/Medicare-Tips

There are great resources for caregivers - those helping loved ones living with cancer - at CancerSupportCommunity.org/caregivers, including info on the difference between palliative care and hospice care.

The HPV vaccine has been recommended in the US since 2006. New study out today shows that cervical cancer deaths in young women in the years that followed have plummeted, decreasing 15% per year from 2013-2015. jamanetwork.com/journals/jam...

CancerSupportCommunity.org has many different programs to help people with cancer manage depression, anxiety, & distress. Find a location near you: www.cancersupportcommunity.org/find-locatio... www-nbcnews-com.cdn.ampproject.org/c/s/www.nbcn...

Probably long over due, hope this helps cancer patients feel seen as their whole selves. @thankscancer.bsky.social www.nbcnews.com/health/cance...

#WearAMask for a healthy & #HappyThanksgiving! Syst rvw (N=15 articles, 50 flights): If no 😷 required, risk of #COVID19 ⬆️ w/ flight time, compared to flights <3 hrs: 😣 3-6 hrs: 4.7x ⬆️ 😩 >6 hrs : 25.9x ⬆️ >6 hrs flights w/ 😷 required had no transmission reported /1 #MedSky #IDSky #PublicHealth

Vaccine preventable diseases and other infectious diseases on the rise. Partly from lapses in routine healthcare during pandemic. Partly because prior COVID increases chances of some illnesses, like the surge in Mycoplasma pneumonia. Partly the rise in anti-science, anti-public health fervor.

Young adults living with colorectal cancer have unique needs. After Cancer Support Community’s researchers documented some of their unique psychosocial needs: www.cancersupportcommunity.org/sites/defaul..., our Education Team created this resource: www.cancersupportcommunity.org/resource/col...

#HearHer

As Dr. Robert Winn has said, your “ZNA” (zip code) may impact your health as much as your DNA www.cbsnews.com/news/life-ex...

ICYMI: *30* year outcomes from SPCG-4 dx.doi.org/10.1056/NEJM... RP vs. WW for clinically detected #prostatecancer reduces CSM 48% and *ACM* by 26%. NNT down to 6. Clear benefit to treatment of clinically detectable disease if (and only if) your pt has a very long life expectancy. #pcsm

Reclaiming our joy #MedSky #OncSky

If you are a Black or African American #cancer patient, CancerSupportCommunity.org invites you to join a free Peer #ClinicalTrials Support Program. #BlackFamCan Enroll today: www.cancersupportcommunity.org/peer-clinical-trials-support-program or call 1-888-292-5162 #oncology #oncosky #cansky

Maternal mortality in the US is not getting better. The disparities are not getting better either. Will RFK Jr., Dr. Oz, and whomever else comes along in the next administration do anything to fix or improve this? Hmm… #obgynsky #obgyn #medsky

I first met Rick Bangs at BCAN.org! Here he is telling it like it is when you are living with cancer…

My weekend bicycle was absolutely gorgeous!

Working on the #ASCO #SCLC guidelines, published in 2023, was disheartening, but working on the rapid update (based on #ASCO24 data) left me emotional. This update represents hope & progress for patients who have waited far too long. ascopubs.org/doi/10.1200/... #LCSM

Only 3 weeks to #SABCS24, a meeting that promises to significantly impact the way we treat breast cancer. It will feature phase 3 data with novel SERDs, novel ADCs, immunotherapy, ctDNA monitoring, important biomarker analyses & so much more. Here’s my top 10 abstracts list— see you in San Antonio!

Surveyed surviving caregivers had worse experiences including lower ratings for timely care & symptom management when their loved one died in hospices owned by private equity firms. 🏥💸⚕️More evidence that, when you run healthcare like a business, people suffer. jamanetwork.com/journals/jam...

‼️A child in #Alameda County, #California has been diagnosed with presumed #H5N1 #birdflu. Child was in daycare. No known source or bird contact. ⚠️ ⚠️ Child is also coinfected w/ other (as yet undisclosed) respiratory viruses. So far, no contacts have tested positive for #AvianFlu. #MedSky 😷

Your periodic reminder that you have the right to find out why your health insurer denied your claim. We built a tool to help you do it: projects.propublica.org/claimfile/