by Rick Davis | Mar 29, 2023 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, mCRPC, Men's Breast Cancer, Ovarian Cancer, Pancreatic Cancer, Prostate Cancer, Recent News, RMC, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
AnCan VIRTUALLY speaks to Extended Access Programs!
When AnCan Advisory Board Member, Jeff Waldron asked us to participate in a pharmaceutical industry Conference on Expanded Access Programs (EAP) in Boston at the end of March, we were only to happy to amplify the patient voice.
A couple of background factors. For those of you not aware, EAP is the name given to programs that allow needy patients access to groundbreaking drugs that have not yet received regulatory approval – in the US case, by the FDA. All of our guys who received Pluvicto (Lu177 PSMA 617) through ‘Managed Access’ last year were actually enrolled in a form of EAP. As you may recall, when the FDA approved Pluvicto, the Managed Access Program ceased to exist and patients were rapidly transferred to commercial providers.
Our good friend, Jeff Waldron, has a back ground working with both Payers and Pharma. He is one of our most well-connected Advisors, and for the past 3 years, has organized an international EAP Conference. All but the smallest pharmas have an EAP. The past two years conferences were virtual, but this year it was held live in Boston from March 21-23.
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.
So what did we say. The take- away points for pharma were:
- Publcize your EAP in a way that is understandable and accessible to and for patients
- Provide support to the patients’ medical team filling out the paperwork to help eliminate that as a hurdle to access
- Respond quickly so patients are not hanging out waiting to hear if they can access the EAP drug
- Be sure trialled drugs are available to patients benefitting from their use, if the trial is stopped and the drug has not been approved.
AnCan’rs – just another example of how we ensure your voice is being heard … we have your back!
by Rick Davis | Nov 18, 2022 | Advocacy, Blood Cancers, Cancer Caregivers, Cancer Resources, mCRPC, mHSPC, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News, RMC, Volunteers, Webinars
AnCan Advisory Board Member Honored Nationally
Last night Invitae and the National Society of Genetic Counselors (NSGC) honored our amazing Advisory Board Member and Genetic Counselor, Lindsey Byrne, as one of the 14 Finalists for the Genetic Counselor of the Year Award during the National Society of Genetic Counselors Annual Conference in Nashville, TN.
While Lindsey was not selected amongst the top 3, both we and she were honored Lindsey was invited to the Awards Ceremony. Nominated by our AnCan Advanced Prostate Cancer Group regular, Frank Fabish, who seeks his care at The Ohio State The James Comprehensive Cancer Center where Lindsey works as a Counselor and Professor, Frank and his wife Gail have benefitted and much enjoyed their consults with Lindsey. She is one of the very few genetic counselors who specializes in working with genitourinary and prostate cancer patients. Lindsey sent us a pix from the Awards Ceremony that has our Star in the foreground with nominator and nominee behind!
Lindsey has hosted and appeared in AnCan webinars as you see below. She also LOVES promoting our cause!
by Alexa Jett | Aug 5, 2022 | Advocacy, Cancer Resources, Recent News
(Editor’s note: This is a ‘master’ list of books related to death, dying, and grief. We hope you will find this to be a helpful resource in your journey, no matter what it is. If you would like to share a book that has helped you, please email alexa at ancan.org. Amazon links here for your convenience and ease of purchasing the book. Remember, you can help AnCan with absolutely no cost to you by purchasing through AmazonSmile. Read how to here. Special thanks to Dr. John Antonucci.)
“We face fears of death and dying, and at times turn to authors who have thought deeply and written about the topic. I offer here a short bibliography on the topic. Ideally it would be an organic list, onto which readers could add suggestions or comments.” – Dr. John Antonucci
- Dying with Confidence, by Anyen Rinpoche
- The Hour of Our Death: The Classic History of Western Attitudes Toward Death Over the Last One Thousand Years, by Phillippe Ariés
- How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard
- I Wanna Be Well: How a Punk Found Peace and You Can Too, by Miguel Chen with Rod Meade Sperry
- The Death of You, by Miguel Chen
- The Tibetan Book of the Dead: The First Complete Translation, edited by Graham Coleman and Thupten Jinpa; translated by Gyurme Dorje; introductory commentary by the 14th Dalai Lama
- The Oxford Book of Death, chosen and edited by D.J. Enright
- The Wheel of Death: Writings from Zen Buddhist and Other Sources, edited by Philip Kapleau Roshi
- The Sacred Art of Dying: How World Religions Understand Death, by Kenneth Kramer
- On Death & Dying: What the Dying Have to Teach Doctors, Nurses, Clergy & Their Own Families, by Elisabeth Kübler-Ross, M.D.
- Who Dies? An Investigation of Conscious Living and Conscious Dying, by Stephen and Ondrea Levine (En Español )
- Making Friends with Death: A Buddhist Guide to Encountering Mortality, by Judith L. Lief
- How We Die: Reflections on Life’s Final Chapter, by Sherwin B. Nuland
- Living in the Light of Death: On the Art of Being Truly Alive, by Larry Rosenberg
- The Toltec Art of Life and Death, by Don Miguel Ruiz
- Lessons from the Dying, by Rodney Smith
- No Death, No Fear, by Thich Nhat Hanh
- The Birth We Call Death, by Paul H. Dunn and Richard M. Eyre
- Lost But Not Forgotten: How Wilderness Experiences Can Transform Your Life, by Jerry Deans
- A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, BJ Miller MD, and Shoshana Berger
Thanks to Miguel Chen; most of this list is from:
Chen, M. & Sperry, M., The Death of You, 2019, Wisdom Press.
by Hannah Garrison | Jul 12, 2022 | Advocacy, SOH
Today’s a BIG DAY if you’re a fan of ordering everything you need from Amazon.
October 11-12th are Amazon Prime Early Access Days, and guess what? If you sign up for Amazon Smile, you can give back to us without having to spend anything extra! It sounds too good to be true, but it absolutely is real.
Amazon will donate .5% of eligible purchases to the organization YOU choose. That could be us…we would be grateful for it, and you would be helping us provide quality peer-to-peer support for all AnCan-ers.
In case you’re new or need a reminder:
We’re a peer-to-peer organization that provides support to many different conditions – Prostate Cancer, Multiple Sclerosis, Sarcoidosis, Thyroid Cancer – quite literally just to name a few. We also host many a webinar – all in the name of support for our community and groups. Check out our YouTube page for past recordings.
Here’s how to sign up for Amazon Smile:
CLICK HERE – you’ll be taken directly to us!
Follow the prompts you see.
That’s it. It’s honestly very easy. You might need to sign in, depending on your browser settings, so be sure to have your password handy.
If you somehow get lost, that’s ok! Here are some pictures that will hopefully guide you:
Thanks for the help! We’re awesome and we know that it’s 100% because of supporters like you.
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 | May 17, 2022 | Advocacy, Multiple Sclerosis, Recent News, Volunteers
AnCan’s Art Director and MS Moderator, Hannah Garrison, Honored!
The Multiple Sclerosis Association of America has recently recognized one of AnCan’s favorite moderators, Hannah Garrison as their Annual 2022 Benefit Honoree!
AnCan LOVES Hannah ….. she is a longtime moderator of our MS Groups AND leads the AnCan Art Program that teaches everyone that no matter your abilities, art is not out of reach. Check our AnCan Art Gallery to see the work Hannah has helped our participants create. Btw, that program will be back in 2022 with 4 sessions before year end – and we’ll be providing FREE art supplies!
Every year, MSAA names one corporate honoree, and one from the MS community. This year
Hannah was recognized as the MS Community Member of the Year,. She has been working with the
MSAA to lead and develop their “Improving Lives Through Art” Paint-Along series throughout 2021 – a program that we beta-tested here at AnCan.
This is amongst MSAA’s newest set of virtual fundraising events in which participants paint a predetermined subject together in a virtual “classroom”, instructed by Hannah. Hannah sets the subject, MSAA sends the supplies off to participants’ homes, and everyone who joins in has a chance to create a special piece of artwork with family or friends together with everyone in the virtual room. The program is a huge success, and continues to support the MSAA’s mission to fund programs specifically for the MS community.
Hannah is adamant that the visual arts were a stepping stone in her recovery from the grueling effects of multiple sclerosis. One day she decided she’d had enough, and began working through her mental struggles, cognitive struggles, and physical struggles via the process of making art. Now Hannah Garrison uses art as a safe space to explore her struggles and to sit with them – never to judge or belittle any result that takes place … or for that matter anything that arises along the way!
Hannah has AMAZED some of our AnCan particpants who have told us they never thought they had this creative talent within them.
You can read about Hannah here, and learn more about the MSAA Benefit which took place on May 5 th in-person and May 12th virtually, here.
Watch out for our four (4) 2022 Art with Hannah sessions, coming soon. You can reach Hannah Garrison at hannah@ancan.org if you want to be sure to receive an invite to AnCan’s classes – they are open to all.
