(first published on AnCanSpeak substack; subscribe for free)
Less than 50% of Patients trust their Providers. Now that’s a handpicked statistic from a survey conducted during Covid and published in JAMA Network in 2024. Healthcare professionals amongst our readers may have grounds to push back. That said, AnCan’s frequent experience from virtual conversations in our daily groups corroborates that anecdotally perhaps half our participants doubt the medical advice received. Our own 2024 survey backs that up. From our GU ASCO 2026 abstract4:
Seventy percent brought information from AnCan to their providers, 49% added new providers, and 40% changed their lead provider. Over half (54%) reported AnCan influenced their treatment path.
That doesn’t bode well for a trusting Patient-Provider relationship!
“Medicine is characterized by an inherent asymmetry of information and power between physicians and patients.” And goes on to say: “Demonstrating trustworthiness and restoring trust… requires reconsidering the balance of power between patients and health care professionals.”
This brings to mind a cartoon AnCan has employed in presentations:
Both JAMA pieces agree that our system is broken. They recite a fact that AnCan has previously noted… on average Providers interrupt Patients after a median of 11 seconds. In front of Providers, Patients can’t even begin to collect our thoughts, never mind express them.
The article troops out a whole bunch of remedies. Starting with teaching HCPs how to listen, it moves to improving health systems so you actually see your doc – not a surrogate practitioner, encouraging longer patient visits – so Providers have time to listen, and address mis- and disinformation. On a more grandiose scale, the article points out that differences in wealth, insurance status and education also influence Patient-Provider trust levels.
The closest either article comes to balancing the scales between Patient and Provider is to say:
Empowering patients through patient education and skill building, increased transparency in care, and shared clinical decision-making would also increase the collaboration in physician-patient relationships. Mutual partnerships between patients and their physicians may foster more stable patient trust instead of requiring patients to take a more tenuous leap of faith.
Noble words, but who is to take on this Sisyphean task?
AnCan likes to think we lead the way. Name one other organization whose mission is to make you your own best advocate. Already this week we fielded one call from a longtime legal Volunteer whose trust in an inestimable Medical Institution was violated because the Provider they spoke to committed the inexcusable and cardinal sin of simply failing to read the file. Or another Participant, a Medical Provider himself, who needed advice because an Institution was knowingly yet improperly billing him.
Being your own best advocate may not fully restore trust in our health system, but it goes a long way to leveling the playing field. It certainly improves patients’ self-esteem and in doing so, makes us feel immeasurably better.
rick davis rd@ancan.org
References
Perlis RH, Ognyanova K, Uslu A, et al. Trust in physicians and hospitals during the COVID-19 pandemic in a 50-state survey of US adults. JAMA Netw Open. 2024;7(7):e2424984. doi:10.1001/jamanetworkopen.2024.24984
Even little me speaks to a lot of people, some of whom have Prostate Cancer. And advanced Prostate Cancer and many of them are not acting as their own best advocate. It’s very important that people learn to take control and own and deal with their disease.
Maybe it’s a little long winded and boring, but it took me a year or 2, into my stage, 4, Prostate Cancer. Before I really took control and had one of those aggressive and idiot doctors who told me” i am a ph d in oncology, and you are a beginning student, ” and he tried to dictate to me everything, including his team of radiological, oncology, and his drugs and his procedures, and I watched a number of his patients who I know personally, because I worked with them die without doing all the things they could. Anyway, after a year two I was seeing consulting with good doctors and dana farber and at sloan, and I switched from advisors to sloan and very happy with my oncologist now…. It is very important for people to come to visit. Taking ownership and managing as their own number one, advocate. Okay, I’ll stop boring you because my doorbell is ringing. Thank you bye!”
AnCan’s ambitious CEO and Founder, Rick Davis, recently sat down with Rarity Life, the magazine published by Same But Different Creative, to share the deeply personal journey that led to the creation of AnCan.
In the interview, Rick reflects on his early days navigating a prostate cancer diagnosis — a moment that reshaped his life & his understanding of what true support should look like. Like so many survivors and thrivers, he quickly discovered that information alone isn’t enough. What people often need most is connection — the chance to speak openly with others who truly understand the lived experience of cancer.
That realization became the foundation of AnCan.
Rick shares how traditional support models don’t always meet people where they are. Geographic limitations, physical health challenges, financial strain, rare diagnoses, and even the emotional weight of walking into an in-person group can all create barriers. For many, simply showing up can feel overwhelming.
AnCan was built to remove as many of those barriers as possible.
Rick’s full interview in Rarity Life offers an inspiring look at leadership shaped by lived experience, and a reminder that meaningful change often begins with one person asking: How can we do this better?
CNTV’s recent video features an interview with AnCan founder, Rick Davis. He explains that he started AnCan after his own diagnosis in 2007, after realizing inadequate support options, especially for those in remote areas. AnCan aims to eliminate barriers to entry for its various support groups, which range from cancer to chronic diseases. AnCan empowers patients to “Be your own best advocate” by providing them with the knowledge to speak confidently with their healthcare providers and offering peer-to-peer support.
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
It’s certainly more than one person can handle. In fact, it’s more than myself, a volunteer, plus 4 contract people and an outside bookkeeper can handle. I’m not the only volunteer. I am so honored and privileged to say it’s more than around 100 volunteers can handle, and we could not manage without your efforts – much gratitude.
For some time, the executive function has been too much for me to manage alone, even with the help of our volunteer Executive Board made up right now of Bill Franklin, David Muslin and Stuart Jordan – btw, we’re looking to add to that too. We’ve been looking to hire executive help and the perfect solution has presented itself.
Some of you may be aware of the term, Fractional Executives – The Charity CFO just ran a podcast. AnCan has been fortunate enough to find one who knows us intimately. Courtesy of the USAF and subsequently, extensive consulting experience at The Mitre Corporation, our Board President, Bill Franklin, is voluntarily reducing his hours at Mitre to take on a contract position of 16-20 hours a week with lil’ ol’ AnCan.
As our Board President since August 2021, Bill knows all the ins and out, he’s seen us grow, and most significantly he’s willing to work with me! Bill’s also looking to phase out of Mitre and find new challenges as he approaches retirement. AnCan provided a great solution and we welcome him as our new Chief Operating Officer.
Bill will continue as Board President as well as assuming oversight over many of the operating and administrative duties, from finance and control to insurance, compliance and many special projects – viz. the Impact Report !?! To be honest, Bill’s been doing a lot of this informally but can now spend legitimate time a couple of days a week to help us put our ship, or maybe we should say ‘our bird’, in better order.
Personally, I am thrilled and excited. There’s no one I can think I would rather work with. I welcome him sharing this job with me, and keeping me on the straight and narrow as he has done since joining the Board many years ago. One other person to thank – another aviator, Bill’s wife Misa. If she hadn’t gotten on his case for spending many volunteer hours with AnCan, Bill wouldn’t have come up with this great solution.
Welcome aboard, Sarge… or should I say, Mr. Prez! AnCan welcomes Air Relief
Has eating become a challenge due to fatigue or a lack of interest in food? Have you noticed a significant change in your or your loved one’s appearance since starting treatment or diagnosis?
It’s a common misconception that weight loss during cancer treatment is solely due to treatment side effects. While this can certainly be a factor, a more serious condition known as cachexia (kuh·kek·see·uh) can significantly impact a patient’s health.
What is Cachexia and Who is at Risk?
Cachexia, often referred to as cancer cachexia or wasting syndrome, is a complex condition characterized by severe weight loss, muscle wasting, and loss of appetite. It’s not a direct side effect of cancer treatment but rather a consequence of the cancer itself. While it’s commonly associated with cancer, it’s important to note that cachexia can affect individuals with various chronic illnesses, including: Multiple Sclerosis, Sarcoidosis, heart failure, chronic kidney disease, COPD, and more. Certain types of cancer are more likely to lead to cachexia than others. These include: Pancreatic, Lung, Head and Neck, Colorectal, Ovarian, and Liver.
Signs and Symptoms of Cachexia: What Should You Look For?
Recognizing the signs of cachexia is crucial for early intervention and effective management. Here are some key symptoms to watch for:
Unexplained weight loss: A significant and unintentional decrease in weight.
Muscle loss: A noticeable loss of muscle mass, often leading to weakness and fatigue.
Decreased appetite: A reduced desire to eat, even when hungry.
Fatigue: Persistent tiredness and a lack of energy.
Metabolic changes: Alterations in metabolism, including changes in appetite, weight, and energy levels.
Changes in Routine: Unable to do the activities you once could.
If you or a loved one is experiencing these symptoms, it’s important to let your care team know your concerns as soon as possible.
Managing Cachexia
While there’s no one-size-fits-all solution, a multidisciplinary approach can help manage the condition. This may involve:
Dietary interventions: A registered dietitian can provide personalized meal plans to maximize nutrient intake.
Medical treatments: In some cases, medications may be prescribed to stimulate appetite or reduce inflammation.
Supportive care: This includes strategies to manage pain, fatigue, and other symptoms.
Psychological support: Counseling can help address emotional challenges associated with cachexia.
This may mean adding more people to your careteam to support you, such as a dietician (as shown above), physical or occupational therapist, endocrinologist, or palliative care (editors note: we hope you already have a palliative care doctor, AnCan loves them and they can offer you so much support during your treatment!)
Coping with the Emotional Impact
Cachexia can take a significant toll on both physical and emotional well-being for the patient, care-partner, and their families. It’s important to seek support to manage the emotional side effects of the condition. Consider:
Counseling: Individual, couples, or family therapy can provide guidance and coping strategies.
You can also ask your social worker (or for a social worker if you do not have one) for additional resources.
Want to Learn More?
We highly recommend this webpage and fact sheet from our friends at Cancer Support Community / Gilda’s Club. While it is cancer centric, all of the information will be of helpful no matter what your diagnosis is.
By understanding the complexities of cachexia and seeking appropriate support, individuals can significantly improve their quality of life. Effective management of cachexia can help alleviate debilitating symptoms, enhance overall well-being, and improve the ability to participate in daily activities.
Special thanks to CSC for their assistance and incredible resources with this blog post.
With Open Enrollment starting on October 15, two AnCan’rs asked for advice this week on Medicare plans – and yes it’s complicated. AnCan recommends you watch the webinar we held last October to help understand the difference between traditional Medicare and Medicare Advantage. The dollar details are different for 2025 but not the principles.
Lastly, my own health insurance broker, Kim Umphres, is licensed to write in 15 States. He offered his help to all in last year’s webinar, so take him up umphres100@yahoo.com
Since the same questions are likely in the mind of many others, I have written this Blog Post. I am no expert but this may illustrate how I think about my own health insurance. Sadly, I cannot help you all individually – consult with your own Medicare health insurance for the best advice.
Onward & upwards, rick
Many of us on Medicare are faced with renewing our plans – or buying a plan for the first time. If you choose not to buy a plan to supplement Medicare, it leaves you exposed to roughly 20% of your medical costs. That can amount to very big bucks!
The main choice is whether to opt for Traditional Medicare + a Supplement (Medigap) Plan + a Drug Plan. Alternatively, a Medicare Advantage Plan can look attractive but comes with warts.
If you are low income and cannot afford the available plans, there are Medicaid alternatives for Medicare supplements.
Advantage Plans (Plan C) restrict your choice of Health Care Providers since they are based on Provider Networks. If you need a particular type of specialist, for example a genitourinary medical oncologist, or a neurologist who specializes in MS, this can be a problem with Advantage. Community Standard of Care is often the byword. If you choose an Advantage Plan, be sure it covers HCPs who practice at a Center of Excellence.
Advantage Plans usually have small monthly premiums, sometimes zero. They also include co-pays when you visit a Provider. Co-pays can be anywhere from Zero dollars to several hundred for fancy scans like PSMA, so you have to look carefully at the coverage. The more you use the plan, the more you pay. Some may include coinsurance – avoid those altogether. It’s a nuance we won’t get into here.
You can also go out of network to a Provider of your choice, but copays will be significantly higher. For example, you may pay $50 for a visit to a specialist in-network. Out-of-network, the cost can be significantly higher – often 40% of the approved Medicare fee for the service sought.
Advantage Plans often have a Gatekeeper who must approve any referral. You may not be able to self refer. Also there can be stricter intervention by the Plan to pre-approve procedures.
Drugs are included, however there is also a co-pay for some generic and all branded drugs that depends on the tier in which they are classified in the Plan’s drug formulary. List the drugs you use and find the cost. That said, the good news in 2025 is that drug out-of-pocket costs cannot exceed $2,000.
Traditional Medicare with a Supplement (Plans F,G,K,L,M,N) may not restrict your choice of HCPs – you can go anywhere in or out of state provided the Provider accepts Medicare.
Traditional Medicare Supplement Plans cover the 20% not covered by Medicare A and B. You pay a monthly premium that varies according to the plan chosen. The different supplement plans have different features. The more you pay in monthly premium, the less the restrictions and the lower the deductibles.
In addition you will need drug coverage (Plan D). Again that includes a monthly premium, plus a charge for each drug, so you have to shop plans against your Rx. For 2025, drug out-of-pocket costs cannot exceed $2,000.
As long as your chosen Provider accepts self-referrals, there may be no Gatekeeper. Procedures and protocols may still be subject to pre-approval.
Since Advantage Plans can be more profitable for the Payer, they offer lots of bells and whistles to sell the plan – for example subsidies for OTC products. One plan I was offered recently, actually pays the Holder $5/month!
I’m trained as an economist so I look at risk reward. I compare the annual maximum out-of-pocket cost between the Advantage Plan and the Traditional Medicare Plans (inc. the drug plan).
For traditional Medicare There is a required monthly premium for both the Supplement and the Drug Plan. Add those together and multiply by 12. In addition you can have out-of-pocket drug costs, especially if you are using expensive cancer drugs, but that cannot exceed $2,000 in 2025. Btw, the $2000 will decrease in subsequent years.
Each Advantage Plan has a stipulated maximum out-of-pocket cost for in-network and out-of-network Providers. In-network will be less. I look at the out-of-network max, and add to that any monthly premiums that are usually minimal. Drugs are included with a co-pay, but that co-pay cannot exceed $2,000 in 2025.
Now that I know what I HAVE to pay with Traditional + Supplement vs what I could pay with Advantage depending on my usage, I can compare whether I want to roll the dice to save money.
If the Traditional route costs me $500 in monthly premiums, I know I am out-of-pocket $6,000 plus my drug copay costs capped at $2,000.
Say my Advantage Plan has a monthly premium of $25, then for sure I am out of pocket $300. The rest depends on how much medical care I use. Assume ( the economist’s favorite word) the out-of-pocket for out-of-network in my plan is $8,000, that is my max. I still have to consider up to $2,000 for drugs.
Let’s compare!
IN THE WORST CASE I am spending $6,000 (+ drugs) for Traditional Supplement versus $8,300 (+ drugs) for Advantage. The Advantage could be $2,300 more pricey.
IN THE BEST CASE, I am out-of-pocket $300 (+ drugs) for Advantage vs $6,000 (+ drugs) for Traditional Supplement, so I could save $5,700 with Advantage.
Risk-Reward… do I want to roll the dice to save up to $5,700 that could cost me an extra $2,300??
Each person has to make that decision.
There’s more to it than this. For example HMO’s like Kaiser Permanente may make it even harder to go out of network. And with KP, you are guarantied to only get community Standard of Care medicine . As I often say, KP is great as long as you don’t get seriously ill.
AnCan strongly suggests finding a local Medicare Health Insurance Agent to help you sort through this morass. Plans change by State, so your agent must be licensed in your State.
And one last thing. The first time you enter Medicare there is NO underwriting. No matter your preconditions, you are accepted to any Traditional supplement or Advantage Plan. In subsequent years, you may be subject to underwriting should you choose to switch plans. You can be restricted from changing between an Advantage and Traditional Supplement Plan.
AnCan recommends watching our webinar from last October to help understand the difference between traditional Medicare and Medicare Advantage. 2025 details are different but not the principles.
We also recommend you visit the Triage website and attend its free webinars. Many of their Medicare resources can be found at https://triagecancer.org/medicare-cancer
For differences between the Traditional Supplement Plans, consult with a specialized Medicare Health Insurance agent. F and G are the best options. There are also high deductible options. An agent can also help you compare Advantage plans by various criteria, like maximum out-of-pocket for out-of-network care.
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
