Ancan would like your input on its future planning and academic research. Please take a few minutes to complete The 2024 AnCan Survey which is at thislink.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Prognostic tools are a good starting point for discussing treatment options with your doctors. (bj)
Topics Discussed
Online resources to compare multiple prognostic tools (e.g., nomograms, PSMA, NCCN) to diagnose our disease; initial considerations for treatment decisions, such as: some urologists view younger men as better candidates for surgery — be careful of this bias when considering your treatment options; PROSTOX saliva swab for germline DNA testing and avoiding toxicity from radiation therapy; getting the right information so you can make an informed decision; post SBRT urination problems include: frequency, urgency, and discomfort (burning, stinging, tingling); clarification on SBRT (a treatment) and Meridian (a radiation machine); urgency and incontinence; active surveillance; RTIRE trial acceptance; AnCan survey emailed to you — let us know what you think; a little humor with emotional support llamas; Happy Veterans Day.
A couple of weeks back, we posted Medicare Health Insurance Choices that explained the differences and pitfalls between traditional Medicare Part A and B plus Medigap insurance plans to Part C, Medicare Advantage. Click the link earlier in the previous sentence if you missed it.
As many already know, there is a Part D that covers drug costs. It is either purchased as a separate plan or rolled into Part C Advantage. Drug coverage is significantly changing this year, and AnCan has learnt that many of our participants are not yet aware. Hardly surprising because CMS as well as the various stakeholders like Payers and providers have done very little to let us patients know. Why should they? – we’re only the ultimate consumer!
The same cannot be said of JnJ who started educating patient advocate organizations this past May. In October and November JnJ created more education that includes a webinar and a round table coming up hosted by NAMAPA, the National Association for Medication Access and Patient Advocacy. Likely you have never heard of them. I hadn’t and it hardly rolls off the tongue. Nonetheless, the webinar was very instructive and you can watch it here.
The BIG difference for us patients is that no matter what, out-of-pocket drug costs for 2025 cannot exceed $2000. You heard right – for those of you on specialty oral medications like Nubeqa (darolutamide for prostate cancer) or Aubagio (teriflunomide for MS), normally sourced via specialty pharmacies, you will meet this cap January. And you’ll even be able to spread the payment over 12 months! More on that to follow.
But first, how is this coming about. Well it tracks back tot he changes brought about by the Inflation Reduction Act signed by President Biden in 2022. He promised to make drugs more affordable, and this is a part of the plan. As you can see in the slide to the left comparing 2024 to 2025, the donut hole has been eliminated. In its place, the Payer (Plan Sponsor) and Pharma (manufacturer) are paying more. While the cost saving is very positive, it will likely impact us patients in other ways:
Your formulary choice may be reduced – so CHECK your medications before you renew.
Premiums for Part D may increase – even though out of pocket is capped. If you are unlikely to spend $2,000, look for a plan that defers your co-pay as long as possible
Higher premium plans should cover a larger portion of drug costs earlier. Your premium does NOT count towards the $2,000, so include premiums in your cost calculation to figure your exposure.
If you have a co-pay or co-insurance on your drugs, no matter if it’s Part C or D, it cannot exceed $2,000. However the amount you pay and who you pay it to may become a bit of a moving target. We mentioned earlier that you will now have the opportunity to spread your payments over the calendar year – or the remainder of it, if you sign up late or incur costs late in the year. The Medicare Prescription Payment Plan (M3P) takes your share of drug costs, up to a maximum of $2,000, and spreads them over the remainder of the year.
The simple example is for those on specialty pharmaceutical drugs like Nubeqa or Aubagio. Since your share of the drug cost is almost certainly going to be greater than $2,000 in January, if you opt in for M3P BEFORE going to the pharmacy or ordering from your mail order pharmacy, you’ll pay nothing on picking up/shipping the drugs. Subsequently, you’ll get a separate bill from your Payer for $167.67 monthly over 12 months, and pay no more for any of your drugs the rest of the year. There is NO interest, no late fee penalties, and you get a couple of months leeway, but there are penalties if you never pay. You can sign up for MP3 with your Medicare Payer/Plan Holder BUT not in the pharmacy for 2025. So if you arrive at the drug store prior to enrollment, you’ll be charged $2,000 to take your pills home. You can leave the pills, go home, enroll and return to the pharmacy 24 hours later and pick up without payment to the pharmacy..
If you don’t start this expensive drug until mid year, say September, and you’ve spent nothing on drugs prior, then the $2,000 is billed over the last 4 months at $500/month.
But what if your drug costs are more lumpy – they go up and down the whole year. In that case, the payments get recalculated each month and the monthly bill will vary.
There is a strange case too, if you know your co-pay is the same each month – say $55. This really throws M3P, and as you can see to the left, you’ll pay the same $660 (12x $55) either way but in different amounts each month if enrolled in M3P.
Finally, let’s address the Drug Benefit plans that many of you enjoy through PAN, PAF and others. Even the drug discount cards from Pharma that some receive. Whatever you receive, or however you receive it, does NOT reduce your $2,000 exposure. You advise the pharmacy that you have a benefit, and they bill the Benefit Provider (PAN, PAF, Pharma ??). The credit will be applied against your drug cost, although eventually you may still be liable for up to $2,000 co-pay when the benefit runs out.
Looking at the first slide, it seems to AnCan that these benefits that are often funded by Pharma, eventually flow back to Pharma and the Payer. How they will credit them against what the patient owes is not yet clear. Before you get too crazed, our guess is the system has to change. These benefits need to be channeled directly to patients who cannot afford $2,000 p.a. AnCan is on it and already reaching out to NAMAPA and others to promote more of a direct, income based subsidy possibly reaching more beneficiaries. One thing we have heard – APPLY EARLY for 2025 in the event you are in line to receive a subsidy.
PLEASE BE SURE TO SIGN UP FOR THE M3P PROGRAM UPFRONT. EVEN IF YOU OWE $2,000 IT WILL BE BILLED IN 12 INSTALLMENTS. WE STILLL HAVE TO FIGURE HOW YOU WILL BE REIMBURSED IF YOU RECEIVE ASSISTANCE.
IF YOU HAVE A GRANT BE SURE TO PROVIDE DETALS TO THE PHARMACY ASAP. NOTWITHSTANDING, ALSO REACH OUT TO YOUR GRANTOR TO FIND HOW THEY WANT TO COORDINATE THE GRANT. IT’S STILLL A MOVING TARGET!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Counseling hope to a sports hero who fears the worst (bn)
Topics Discussed
High-profile British cyclist Chris Hoy fears the worst — Rick wants him to know there’s hope; ADT doesn’t just give you reasons to be sad, it physically causes depression — and if you don’t treat it, everything else gets worse; jury’s been out a long time on ADT and dementia; ADT side effects don’t wear off, as with other drugs — they get worse; on a drug holiday, his PSA has stayed undetectable — but not so fast: it only counts if testosterone is going up; drug holidays can’t come right away — they have to be earned; PSA rises, rises, rises, after he’s taken off Lupron, but Kaiser doc hasn’t acted; VA may be his way out of the Kaiser trap; after hating it twice before, darolutamide now suits him well; that lead box is a clue he’s not about to get the FDG PET he needs for his non-avid lesions; whirlwind of confusion over the new Part D rules and the magic $2,000 number; now that radiation treatments are over, when should he get a PSMA PET scan?; off Lupron and on darolutamide monotherapy, he feels about the same — does that make sense?; he’s already doing what his intraductal diagnosis suggests he do; doc who says no to everything should be saying yes to PSMA PET
Chat Log
Jim Marshall, Alexandria, VA · 6:29 PM
On ADT & Abiraterone for 5 years,stayed active, volunteering, bike rides even when fatigued, keepig my mind active doing research on PC and Veterans Affairs. No time to feel sorry for myself. Jim Marshall, USAF(Ret)
Steve L · 6:37 PM
I was classified low volume metastatic even with 12 of 12 cores positive because I have only 2 bone mets. Does the seem right?
AnCan – rick · 6:47 PM
$@Steve L-ID-400003$… low volume Mx is different from low volume Biopsy. Very different kettles of fish
Jim Marshall, Alexandria, VA · 6:48 PM
Been on Monthly PSA & testosterone blood tests since the beginning. Jim Marshall
Steve L · 6:49 PM
No Decipher. Gleason of 4 plus 5.
Steve L · 6:51 PM
Great that Bruce has had extended non-detectable PSA
AnCan – rick · 6:55 PM
I would disagree with @Jeff M. A Deicpher test at this point is not going to tell you much. It is designed to predict recurrence. 4+5 tells you all you and your med onc need to know.
Steve L · 6:59 PM
My treatment is ADT(lupron), Abi (now with Dexamethasone}. Also had Provenge in June/July.
Steve L · 7:12 PM
Jeff, After 2 years of undetectable, PSA started increasing in January and I was classified castrate resistant. No radiation nor surgery except turp. Denovo Mets. Most recent PSA 0.59
Doug D · 7:34 PM
Unfortunately, I need to leave early for an appointment. I will be attending these sessions regularly. I really appreciate your help, guidance, and time. Thank you very much.
Steve L · 7:51 PM
I recently proposed circulating tumor DNA test,
PSMA scan, and radiation to primary and mets with negative response. Any recommendations for a second opinion? Perhaps MD Anderson or ????? I am in Seattle area.
AnCan – rick · 7:55 PM
Steve – this a big question that should be posed to the group. Too much to handle via Chat window.
Steve L · 8:01 PM
Okay, I will try next meeting if no time today.
Thomas M · 8:04 PM
Good night , Gents,,,,,,,Thomas
dan: alexandria, virginia · 8:12 PM
I have to leave… thanks for advice, Gents. Night, dan
Low/Intermediate Prostate Cancer Video Support Group, Oct 21, 2024
Low/Intermediate Prostate Cancer Support Video Support Group, Oct 21, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: A second opinion from a creditable source is a good way to verify an initial diagnosis. (bj)
Topics Discussed
New diagnosis researching HiFu and TulsaPro; PROMISE Study for genetic testing; focal treatment limitation; Interpreting nomogram results to choose between surgery or radiation; importance of getting a second opinion; dealing with anxiety as part of the decision process; helpful tip — build a list of questions before seeing your doctor(s); understanding radiation treatment options — SBRT, Cyber Knife, etc.; Are rectum spacers still needed for radiation treatments; overcoming analysis paralysis; nadir outcomes for radiation treatment; decision regret following prostatectomy; transitioning from active surveillance to a definitive treatment; SBRT experience update; Prostox (cheek swab) for DNA/genetic testing; Decipher testing for DNA/genetic testing; low dose brachytherapy.
Chat Log
AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Use Pharmacists to fill in for HCPs for drug interactions (rd)
Topics Discussed
New man on Pluvicto, but is he concordant?; are HCPs diligent in checking drug interactions?; darolutamide and rosuvastatin – heads-up; get a clear treatment plan before starting RT; spot RT done – maybe a drug holiday next; as Tx progresses, anxiety drops; 18 days way too short to taper prednisone; do vibration plates help?; Embr helps another man – and maybe two; use your pharmacist to discuss drug interactions
Chat Log
david opp sent: 5:25 PM
Hi Jerry.
Keith Lawrenz, Ventura, CA sent: 5:46 PM
Frank if you are interested in chatting 1×1 please reach out to me
Jim Marshall, Alexandria, VA sent: 5:52 PM
Frank. I have ATM as Somatic too. Jim Marshall
AnCan – rick sent: 6:03 PM
Dr. J … you have to recognize that Dr. Jack is neurotic about all his numbers.
Steve Roux, MI sent: 6:11 PM
drugs.com. easy check for interactions.
Steve Roux, MI sent: 6:31 PM
Good meeting guys but I need to get some dinner! See you all next week. And…kudos to Rick for the great blog on Medicare!
Julian – Houston sent: 6:31 PM
time to go – thanks for another great evening!
Adam sent: 6:32 PM
Gotta go Rick but thanks for another session. Was gonna let you know I finally got into seeing Dr. E at Houston Methodist so you should get that toaster in the mail!
Richard Fiske sent: 7:06 PM
Hi Thuc: I haven’t dived for a while b/c I am on three blood pressure medications. One thing I learned in the Navy was that only Ibuprofen underwent hyperbaric testing. I had one friend who was on flexeril who’s heart stopped coming back from 190ft. I wouldn’t dive on while on any serious drugs.
AnCan – rick sent: 7:08 PM
Embr watch https://embrlabs.com/
dan: alexandria, virginia sent: 7:10 PM
great meetings guys… I have to get to my family meeting…. O&U