by Rick Davis | Mar 21, 2020 | Men's Breast Cancer, Recent News
Some of you are quite familiar with our Advisory Board member Richard Wassersug, an internationally recognized expert on androgen deprivation therapy in men. Richard is a research psychologist, and last year we connected him with Peggy Miller at the Male Breast Cancer Coaliton who moderates our Men’s Breast Cancer virtual group. They and others are pursuing a study on how male BCa patients respond to the word ‘survivor’. In Richard’s words:
(Peggy), I and others are collaborating on a survey study right now about how male breast cancer patients respond to the label “survivor”. As you may know, female breast cancer patients overall like that label. In contrast, prostate cancer patients typically do not. We hope to finding out whether this difference is due to a differences in how the two diseases progression and how they are treated, or instead reflect a fundamental sex/gender difference.
We’ve already collected data on about 70 male breast cancer patients, but we hope to double that.
Richard published an essay in Quilette late last month on male breast cancer “Masculinity, Emasculation, and Breast Cancer in Men”…. you’ll find it here. If you are not too familiar with this condition, it has every right to be considered a rare disease based on the number it afflicts ….. although, as Richard points out, male BCa kills more than testicular cancer! Read and learn ….
by Rick Davis | Mar 16, 2020 | Health Resources, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
In the dim, distant past of 2011, or was it 2012, I had just been kicked out the support group I co-moderated by a very insecure lead. Rather than the one-on-one interview style he practiced that made the large, weekly group feel they were eavesdropping on a private conversation, I worked hard to promote conversation and bring everyone into play. If the back-and-forth developed a life of its own, moderation was successful. Like a tugboat, moderators could just nudge a little here and there to keep discussion on track while sprinkling information and education into the wake.
So when a good buddy of mine suggested we start an online TV channel, I took him seriously. My friend had been in the virtual meetings world pretty much since inception and encouraged me to explore. I, however, had no interest in talking at an audience – I wanted to converse and interact with it. Support groups were much closer to my virtual ideal than a TV Channel. Moreover, virtual support groups tackled three issues where physical groups got a resounding ’F’.
- Geographical ‘disabilities’ were removed – no one was restricted by distance or remote location
- Physical disabilities evaporated – everyone could join no matter their state of mobility
- Social disabilities faded – those who felt uncomfortable in a physical group or suffered from agoraphobia could attend, and those who were just plain shy could ‘lurk’.
To my amazement in 2012, I found only two (2) virtual support groups on the world wide web; one for post-partum depression, and the other for dieting. In the two-dimensional virtual world of written forums, there were options and I quickly became a celebrity. By providing solid experience and guidance – never medical advice!! – many sought my input. Then I discovered a telephone support group based out of the northern Midwest …. and from thereon history was made.
As possibly the first peer-led support group for any condition, I turned what originated as a men’s psycho-social support come drinking club into a bona fide, condition driven, virtual support group. By advertising on the written group forums, attendance grew rapidly. We went from one to two monthly meetings. Then we split the group by severity of disease – newbies did not want to be chatting with those suffering advanced disease. And soon we had to split again as numbers exceed 30+ participants per group. Within a couple of years, we had four then six groups each month; and, we received endorsements and co-sponsorship from a major support and education non-profit.
The phone platform also seemed inadequate just as virtual platforms became affordable. No longer did you have to commit thousands of dollars to host on WebEx when GoToMeeting and then Zoom catered to the individual consumer. Adding visuals created yet another dimension, bringing the virtual support group experience even closer to a physical meeting. Video was always optional, and you could join by phone as well as online – we strove to maintain the lowest barriers to entry. And our meetings were always free and drop-in … no registration required.
Gradually our moderators learned best practices – how to keep a meeting moving; how to avoid people talking over each other; how to ‘listen’; how to bring everyone into the virtual group discussion. In 2016, our vision got formalized when we founded a non-profit, Answer Cancer Foundation, starting with the six groups then in existence. While all for one condition, my vision was much wider.
We knew that if it worked for the condition we were living with, this same experience could work for other illnesses and conditions …. especially for rare diseases where even in the best circumstances gathering a physical support group was challenging. And for conditions beyond cancer …. and for more than just those living with the condition – like caregivers. In 2019, Answer Cancer Foundation became AnCan as we launched a multiple sclerosis group. And as I write today, we host more than 20 meetings each month for cancer and non-cancer. We are proud to offer two virtual groups for rare diseases, and about to introduce new virtual meetings for blood cancers, and for ovarian cancer.
So here we are in 2020, in the midst of a global pandemic living within the parameter of social distancing. Many are suddenly recognizing the value of virtual meeting places. Some, like my nemesis the lead moderator mentioned in the first paragraph, had the audacity to tell a telcon of support group facilitators last week, that Zoom is inexpensive and everyone’s answer; he had tried it for the first time earlier in the week. I could not resist piping up that AnCan currently hosts nine (9) virtual meetings per month just for our cancer; that we have been doing so for eight years with our co-sponsor who, by the way, was hosting the telcon; and, that we would be delighted to share our know-how with anyone that needed help. And oh yes … that GoToMeeting offered a free room over the next 3 months for anyone that needed!
by Rick Davis | Mar 8, 2020 | Blood Cancers, Brain Tumors, Men 'Speaking Freely', Men's Breast Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
Like many of you this week, I have been reading multiple articles about how the corona virus may effect those living with cancer and how best to protect ourselves. Many of us who did not take this threat too seriously 3 weeks ago, are now reevaluating although I remind everyone that it may be no worse than the influenza threat that kills many each year – albeit we don’t read about it daily. WHO estimates between 250,000 – 650,000 die from influenza annually.
Amongst several articles that are in my inbox, I have a couple of first hand experiences. The first is from Shira Zwebner, a regular contributor to the CURE website, that you’ll find here; and the second is by our Board Chair Peter Kafka, reprinted from his meeting reminder to the virtual group Peter moderates. (rd – apologies for all the typos first time around; forgot to proof!!)
What A Difference A Week Makes
All of the sudden the world is thrust into a new paradigm in reaction to the onslaught of the Covid-19 coronavirus. I suspect that many of us can tell stories about how our lives and communities are already being impacted by this new threat. It looks like we are all in for quite a ride for some time to come. Some might discount these events or downplay the seriousness of the virus, but it can’t be denied that there is an overriding sense of fear and anxiety in many quarters.
How does this relate to those of us dealing with cancer? Oddly enough there are many crossovers and “take homes”. Who among us did not feel fear and anxiety and a sense that our world as we had known it was coming to an end when we were first diagnosed with this cancer? I know for myself that fear was a dominant feeling. Because it was all so new and I was unprepared and uninformed my emotional response was quite out of control. Fortunately, I found support quickly and was led to experts in the field who could set me on a steady course and explain exactly what was going on and help put things in perspective.
Most of us have found that our worlds did not completely fall apart. Yes, many things may have changed – they certainly have for me and those closely around me. But life has gone on and adjustments have been made. We humans are remarkably resilient creatures and can adapt to amazing challenges and circumstances. For myself, I have just embarked upon a heavy-duty regimen of chemotherapy for my aggressive advanced prostate cancer. Perfect timing to put myself into a situation where my immune system will be further compromised by the chemotherapy infusions. And what a time to have to show up at our local hospital every three weeks for a day of infusions. So much for my luck.
I guess I am one of the lucky ones who has jumped to the head of the line in the high-risk category for dying from Covid-19 Coronavirus, over 70 years old with cancer and a compromised immune system. But somehow, I am just not over consumed by this thought at the moment. I am not going to be cavalier and take stupid risks, but I can really only deal with one big threat at a time and for me it happens to be the prostate cancer. I think my ongoing 6-year journey with this disease has put me in a mindset of preparedness. Fear is no longer driving my decisions and actions. Understanding and intelligence rule the day for me.
by Len Sierra | Mar 8, 2020 | Recent News, Advocacy, Cancer Resources, generic drugs
The coronavirus outbreak has many patients worrying about whether they will be able to continue receiving their medications. The FDA is actively working on ensuring that this doesn’t happen and while they have already made some progress, they will continue to take additional measures. You can read the latest FDA Supply Chain Update in its entirety here.
The information below represents the more salient points of that update, IMO:
Since January 24, the FDA has been in touch with more than 180 manufacturers of human drugs, not only to remind them of applicable legal requirements for notifying the FDA of any anticipated supply disruptions, but also asking them to evaluate their entire supply chain, including active pharmaceutical ingredients (the main ingredient in the drug and part that produces the intended effects, e.g., acetaminophen) and other components manufactured in China.
Also, as part of our efforts, the FDA has identified about 20 other drugs, which solely source their active pharmaceutical ingredients or finished drug products from China. We have been in contact with those firms to assess whether they face any drug shortage risks due to the outbreak. None of these firms have reported any shortage to date. Also, these drugs are considered non-critical drugs.
The FDA is using all our existing authorities to address COVID-19, and we welcome the opportunity to work with Congress to further strengthen our response capabilities and emergency preparedness. There are four specific proposals included in the President’s budget that would better equip the FDA to prevent or mitigate medical product shortages.
- Lengthen Expiration Dates to Mitigate Critical Human Drug Shortages: Shortages of certain critical drugs can be exacerbated when drugs must be discarded because they exceed a labeled shelf-life due to unnecessarily short expiration dates. By expanding the FDA’s authority to require, when likely to help prevent or mitigate a shortage, that an applicant evaluate, submit studies to the FDA, and label a product with the longest possible expiration date that the FDA agrees is scientifically justified, there could be more supply available to alleviate the drug shortage or the severity of a shortage.
- Improve Critical Infrastructure by Requiring Risk Management Plans: Enabling the FDA to require application holders of certain drugs to conduct periodic risk assessments to identify the vulnerabilities in their manufacturing supply chain (inclusive of contract manufacturing facilities), and develop plans to mitigate the risks associated with the identified vulnerabilities would enable the FDA to strengthen the supply chain by integrating contingencies for emergency situations. Currently, many medical product manufacturers lack plans to assess and address vulnerabilities in their manufacturing supply chain, putting them, and American patients, at risk for drug supply disruptions following disasters (e.g., hurricanes) or in other circumstances.
- Improve Critical Infrastructure through Improved Data Sharing and Require More Accurate Supply Chain Information: Empowering the FDA to require information to assess critical infrastructure, as well as manufacturing quality and capacity, would facilitate more accurate and timely supply chain monitoring and improve our ability to recognize shortage signals.
- Establish Reporting Requirements for Device Manufacturers: The FDA does not have the same authorities for medical device shortages as it does for drugs and biological products. Among other things, the FDA proposes to require that firms notify the agency of an anticipated meaningful interruption in the supply of an essential device; require all manufacturers of devices determined to be essential to periodically provide the FDA with information about the manufacturing capacity of the essential devices they manufacture
