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!
Hey Friends! If you missed last Thursday’s art class, then I have the recording for you right here! Share it far and wide, and don’t forget to email your pictures to Alexa (Alexa at AnCan.org).
Supplies:
Canvas Size 12in x 12in or similar. Feel free to use a rectangle as well
Acrylic Paints: White, Blue (or whatever other Sky & sea color you want), Orange, Yellow, optional Purple
Palette Knife
Brush: 3/4in or similar
Optional tiny brush OR tooth pick OR cotton swab for optional birds
Water
Napkins
Watch here:
Have fun with this and please don’t hesitate to reach out to Hannah@AnCan.org with any additional comments & questions. Happy painting!
Come float away with us, as we create colorful butterflies in this art class! Watercolor pencils can be found at Dollar Tree, Michaels, Hobby Lobby, any craft supply store. You can also use regular watercolor paints, crayons, and colored pencils. Don’t feel like you need to go out and purchase an entirely new set of supplies!
What you’ll need
Paper – watercolor paper if you are using watercolor pencils or paints
Art medium of your choice – watercolor pencils, watercolor paints, crayons, or colored pencils (if using watercolor pencils or paint)
Get ready for a very painterly painting; We’ll squish some paint around to create a very abstracted water lily pond scene based on Claude Monet’s very famous water lilies. We’re looking for very brushy brush strokes! (say that 3 times fast!) The beauty of our virtual art classes is that they can be done anywhere, including for myself on the road in Arizona!
What you’ll need:
Canvas – 9in x 12in or larger
Acrylic paints – blue / brown / white / green / yellow / optional purple or any other color for water lilies
Brushes- flat 3/4in or similar / round size 6 or 8 / round size 4 or anything you consider tiny
Some of our Blog readers, have attended AnCan’s Speaking Freely virtual group. That’s our men-only meeting that talks about everything and anything EXCEPT treatment. It’s open to all men living with a chronic condition and provides a great opportunity twice a month to get things off your chest and to air issues where another perspective may help. Like all our meetings, it’s free and drop in on the 1st and 3rd Thursday of each month starting at 8.00 pm Eastern in our AnCan Barniskis Room.
December’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .
In the course of the SF group conversation, we spoke about how cancer has impacted our lives – positively and negatively. When Alan mentioned he’d be keeping track of all the gifts received from his prostate cancer experience, we immediately asked for a copy – and here it is.Thanks for sharing your vulnerabilities, Alan and for allowing others to learn and benefit! (Editor: We’ve chosen to put Prostate in parenthesis, because for the large part, we think this applies to most all cancers!! )
Gifts of (Prostate) Cancer
1. I experienced a flood of love and good wishes from family, friends, and colleagues.
2. I returned to therapy, and I deepened my self-understanding.
3. I had the opportunity to confront my mortality, which taught me to think about decisions I make day-to-day.
4. I saw my wife do battle with the medical establishment on my behalf and win.
5. My love for my wife deepened as we confronted a life crisis.
6. I watch myself travel from despair to acceptance. Once again, demonstrating my resilience to myself.
7. I was given the opportunity to learn how to love my wife in new ways.
8. For about the hundreth time, I saw my wife was a tower of strength, and I learned once again that she would always be there for me.
9. I felt my wife’s unconditional love as she held me while I cried for all of my losses.
10. I experienced what it was like to have somebody pray for me.
11. I took control of my well-being by firing my first urologist and finding better care elsewhere, which was empowering.
12. I talked to other men who had prostatectomies about highly personal subjects.
13. I started to learn how to engage in Mindfulness rather than just talking about it.
14. I experienced a high school friend showing how much he cared by not only investigating where I received treatment, but also the physician who was going to perform the prostatectomy.
15. My brother-in-law showed how much he cared by arranging a consultation with a physician at the Dana-Farber Cancer Center.
16. A professor, who I did not know well, gave me her telephone number, and told me to call any time day or night.
17. I learned what was helpful and what was unhelpful when someone was facing a life crisis.
18. I joined a support group, in which I learn much about prostate cancer and in which I receive support.
19. I am learning to accept my limitations.
20. I have helped other men, which has been rewarding
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.
December’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .