@clarinetsax
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.
Rare cancers like #CLL and #NeuroendocrineTumors demand specialized community — not just specialized care.
This #RareDiseaseDay, I talk about psychosocial support as a clinical need, not a nice-to-have.
Because #CommunityIsStrongerThanCancer 💙
🎙️ www.youtube.com/watch?v=O3NM...
#Oncology
“In the wealthiest country on Earth, people are going bankrupt, suffering wage garnishment, just because they get sick."
kffhealthnews.org/news/article...
JAMA article, published online February 5, 2026, titled: What Systemic Hormone Therapy Black Box Removal Means for Breast Cancer Survivors by Versha Pleasant, MD, MPH; Kari Ring, MD. The article discusses US FDA removal of black box warnings for menopausal hormone therapy (MHT).
💬 Viewpoint: Removal of black box warnings for menopausal hormone therapy reflects evidence that the risks and benefits of MHT vary by patient context, including hormone receptor status, MHT formulation, and timing post-menopause.
bit.ly/4a8qr0Z
Scientific poster explaning the findings - CONCLUSION For patients and caregivers, travel time and cost , difficulties with care coordination, securing a 24/7 caregiver, and the perceived risk of side effects are the most significant barriers to CAR T. • Having to travel long distances to academic cancer centers away from patients’ primary care sites for CAR T cell therapy compounded the psychosocial and financial burden associated with receiving CAR T for patients and caregivers. • The time, financial, and social toxicity associated with CAR T cell therapy impacts patients, caregivers, families, and communities. • CAR T should be made available at more care sites and supportive resources should be made more widely available to reduce the financial, logistic, and psychosocial burden of CAR T and improve access to this innovative therapy
Why do 80% of eligible patients miss out on life-saving #CARTCellTherapy?
www.CancerSupportCommunty.org's research reveals real barriers—financial toxicity, travel burden, caregiver strain—that keep patients from accessing CAR T.
#Tandem26, ⏰ 6:30-8p, 📅 Th, 2/5
#CART #HealthEquity
bit.ly/3LRWDwh
@crisbergerot.bsky.social
@fumikochino.bsky.social
@nicolefleege.bsky.social
@ryannipp.bsky.social
@lungoncdoc.bsky.social
The implications: metastatic pts want more emotional & relational support, while non-metastatic prioritize mobility assistance & daily tasks.
Top across-the-board need: help coping with uncertainty & managing fatigue.
What drives support needs at your institution?
For #NSCLC patients, socio-demographics better predict distress levels than metastatic status—challenging common assumptions in psych-oncology.
#ASCOQLTY25 #LungCancer #PsychosocialSupport
www.CancerSupportCommunity.org
Poster:
www.cancersupportcommunity.org/sites/defaul...
RCT shows that young children (age 28 days to 4 years of age) with Upper Respiratory Tract Infection (URTI) given probiotics (B breve, B lactis, and L rhamnosus) had 2 days less of fever than those on placebo. buff.ly/LeYbEeY
#medsky #pedsky
Your voice matters! With crucial Congressional decisions ahead, tell your Congressperson to protect patient access to #healthcare, especially pediatric and adult cancer patients who access care through #Medicaid.
bit.ly/3Fk6mHZ
#CallCongress #CancerTreatment
#BudgetCuts
#ThisIsNotFraudOrWaste
The Bear Fund provides navigation resource services and supports families affected by pediatric cancer. We know you will inspire others to make a difference in the lives of those impacted by a cancer diagnosis.
cancersupportcommunity.salsalabs.org/2025timtagga...
www.CancerSupportCommunity.org congratulates Tim Taggart for successfully completing the Livermore Valley Half Marathon!🏅 Thank you for running with purpose for pediatric cancer and raising over $8,000 for The Bear Fund-
#FightCancerLikeABear #childhoodcancer
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
Reasons for not adhering to treatment plan: 80% To avoid side effects of treatment 67% Treatment interfered with work or daily activities 62% Treatment interfered with personal life
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
A worker in an apple orchard where she is pruning the tree
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...
Infographic summarizing negative outcomes documented from prior authorization
Infographic summarizing negative outcomes documented from prior authorization
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
Thanks for being my rep & supporting this! Please also look at telehealth & tele-mental health service be able to be provided across state lines. That would help cancer patients to be able to see specialists and make it easier for everyone to navigate mental heath provider shortages.
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.
Top reasons for contacting the helpline: • CAR T Cell Therapy Education/Information • Financial Concerns • Need for Emotional Support • Lodging & Transportation
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
A picture of the research poster. Better view is available by downloading the pdf at the link above
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...