by Rick Davis | May 22, 2023 | Active Surveillance PCa, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, hospice and palliative, mCRPC, Men's Breast Cancer, mHSPC, Multiple Sclerosis, nmCRPC, Ovarian Cancer, Pancreatic Cancer, Prostate Cancer, Recent News, RMC, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
ICE Checklist … in case you go cold!
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
by Hannah Garrison | Jul 2, 2022 | AYA, Complementary Medicine, Health Resources, Mental Health
Summer of Art – Dreamy Summer Sky
Registration is officially open!! We’re so so excited to announce our SECOND class in the Summer of Art Series!
Funding for this project was provided by the Health e Voices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Jansen Pharmaceuticals, Inc.
No painting experience? No worries! Your instructor, Hannah Garrison, has had over 7 years of teaching experience in the arts. This painting is one she’s especially excited about because we’ll be using both a paintbrush AND a toothbrush! It’s weird and we love it.
Register here for this second Summer of Art class
When? July 21st at 8pm EST / 5pm PST
If you already registered on the priority waitlist for June’s class, then no need to register again! We already have you on the list for this class!
Register before July 10th to receive your free art supplies in time!
There will be plenty of time to ask questions and admire everyone else’s work! Hannah is always ready to answer questions about how you can make it your own. Think you might want more or less of a certain color in your painting? There’s always a solution!
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
In case you didn’t make it in time for registration, Here are two things you can do:
- Fill out THIS FORM to register for the waitlist for August’s class. If you couldn’t register for July’s class, you’ll get priority for this one
- You can still join us for July’s class with your own supplies! Email Hannah@ancan.org for the link
You’ll need:
- One soft adult toothbrush (one that you’ll never use for anything other than painting)
- Size 6 or 8 round paint brush
- canvas size 9in x 12in
- Acrylic paint colors: white / orange / bright yellow / purple / pink / blue
- water/ lots of napkins
- extra papers / butcher paper / plastic bags to cover your work station. Protect your surface from paint if needed!
All paint manufacturers have different names for their own colors, so choose the colors you LOVE!
Check out our AnCan Gallery HERE to see some amazing artwork from June’s class!! You can even watch the recording for June’s “Markers and Sunflowers” class
Email Hannah@ancan.org or Alexa@ancan.org for questions 🙂 Hope to see you there!
by Hannah Garrison | May 30, 2022 | AYA, Cancer Resources, Health Resources, Mental Health, Multiple Sclerosis, Recent News
Summer of Art – New Art Classes!
Hello, Friends and Family of AnCan.
If you’re in need of a little pick-me-up, or perhaps some much needed time making art as “therapy” with other people in our amazing AnCan community, we’ve got something for you.
AnCan’s Summer of Art
AnCan Foundation has been awarded a grant from HealtheVoices Impact Fund at the Community Foundation of New Jersey funded by Janssen Pharmaceuticals, Inc. to provide art “therapy” to brighten all our lives! We’re calling this art “therapy” series the Summer of Art!!
Award-wining arts-in-healthcare teacher, Hannah Garrison, who lives with MS herself, will AMAZE and ASTOUND you with your own abilities!! No art experience needed – just curiosity and a little creativity.
And it’s accessible to all – even those with ‘hand issues’. AnCan wants this to be disability-centric so we are sending you art supplies Our grant funds 4 classes through 2022 – first one on June, 16!
To attend fill out this form by June 9th to receive FREE art supplies, first-come, first-served …. markers, paper, and adaptive writing aides. Class size is limited!
First class – June 16th from 8-9:30pm EST / 5-6:30pm PST
A link will be provided for the class by email!
YOU’LL be drawing Van Gogh inspired sunflowers …. wondering how??
Hannah will break it down into small, manageable petal sizes that you can scribble through bit by bit until voila – SUNFLOWERS AND A VASE!!
And it’s interactive with lotsa space for queries and questions.
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
EVERYONE please complete the form – if we run out of supplies, you’ll have priority for the next class! Your application is how we keep track.
Complete the form by June 9th to receive free supplies and the URL to attend!
Email Hannah (hannah@ancan.org) or Alexa (alexa@ancan.org) with questions.
by Rick Davis | May 26, 2022 | Advocacy, Cancer Caregivers, Cancer Resources, Health Resources, Men 'Speaking Freely', Recent News, Solo Arts Heal
Non-Medical switching ….. know what we’re talking about?
In the patient advocacy world, Non-Medical Switching has been a major topic this year.
Non-Medical switching happens when the insurance provider forces a switch to an alternate medication, usually less expensive, to the one your health care provider prescribed. In certain HMO’s, it may actually be your HCP who switches or prescribes a less than optimal drug. AnCan sees this frequently with Kaiser Permanente.
The switched medication frequently may not work as well. For some conditions that can be devastating … for example with mood stabilizers prescribed for mental health care. A recent survey by the Alliance for Mental Heath Care Access (AMHCA) showed that 40% of patients taking medication to maintain stable mental health did worse when switched. Consequnces can be tragic.
In March, I was in Washinton DC to lobby for the American Urology Association. Switching was one of our talking points with Federal legislators. AnCan also partners with the Alliance for Patient Access (AfPA), a parent organization to AMHCA. With Mental Health Awareness Month coming up, they have just published an attention-grabbing report addressing medcial switching. Read it at https://instituteforpatientaccess.org/non-medical-switching-pushes-patients-to-the-brink/
AnCan continues to advocate on behalf of all our patients. We take Mental Health programming very seriously and now offer 5 related programs:
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by Rick Davis | Jan 20, 2022 | Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, hospice and palliative, Multiple Sclerosis, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News, RMC, Thyroid Cancer, Women's Breast Cancer
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
by Rick Davis | Sep 28, 2021 | Advocacy, Brain Tumors, Cancer Caregivers, Cancer Resources, Exercise, Health Resources, mCRPC, Men's Breast Cancer, Multiple Sclerosis, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News
Check out the CDMRP ….. it may be for you!
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
