Peter Kafka’s thoughts this week on generosity at this time of year:
I live on the same property as two of my young grandchildren here on Maui and it is very special being this close to them and watching them grow and mature. One of the things I wrestle with especially during what we refer to as “the holiday season” is how to change the focus from Getting to Giving. I wonder if generosity is a value that can be taught or is it a characteristic that we intrinsically have and choose to express or not. Many years ago, my own two sons taught me an important lesson about generosity that I have never forgotten.
We were living in Brooklyn; NY and my sons were perhaps 6 and 8 years old. They wanted to go out to lunch on their own at a neighborhood Chinese restaurant a block or two away. I gave them a $20 bill and my wife and I watched them disappear around the corner from our 4th story window. About 25 minutes later they returned, all smiles about this big adventure. As I listened to their story, I asked my sons if there was any change left from the $20 bill, knowing that the lunch special was about $3.50. They replied that they left the remainder for a tip, stating that the waitress was “so nice” to them.
I was about to explain to them how to go about calculating a tip by percentages when I bit my lip and shut up. Who was I to stifle their natural spirit of generosity? Generosity is something that comes from the heart and not the calculator. I trust that my sons, and their children live by this maxim still, but I can’t control that. All I know is that something shifted in me that day in terms of generosity.
Not a day goes by this time of year when my mailbox is not stuffed with donation requests from a wide variety of social, health and environmental non-profit organizations trying to tap into my spirit of generosity. My desk is full of greeting cards, address labels, calendars and such. Things that I don’t need but have a hard time just trashing. I get it, the timing and the need. And I do support a number of these organizations throughout the year.
We at AnCan.org have not to date taken this approach of frequently soliciting donations. We just continue on with our effective model of providing weekly live On Line/ telephone support for men and women dealing with difficult medical and emotional issues. We provide a forum where people can connect with others and form significant friendships and support networks for their particular situation. To date, none of our moderators and staff are paid. Our service is a gift of our passionate hearts. Others have helped us along the way and we are compelled to pass it on.
I know that many of you have found the means within your budgets to help us at AnCan continue this work and expand into other avenues of service. Thank you! We value your generous participation.
One of AnCan’s favorite doctors, who we are privileged to name on our Advisory Board, is palliative care specialist, BJ Miller. I have had the wonderful fortune to work with BJ for 10 years or so, and know first hand how he has provided lifesaving support to a number of our participants treated at UCSF, both physically and mentally!
BJ is an extraordinary physician with an equally extraordinary story. He is a triple amputee – prior to med school, and if you listen to his interview today with Terry Gross on NPR’s Fresh Air you will learn how that career decision came about.
What Terry failed to mention is that BJ’s Ted Talk has very nearly 10 million views since first being posted in 2015 – now that’s remarkable in itself! He has just published a new book with Shoshana Berger, A Beginner’s Guide To The End that I am currently reading.and recommend.
It’s that time of year when we decide if we are going to change our medical coverage for the coming year – whether it’s a switch during open enrollment or changing our supplemental Medicare insurance.
Over the past 12 months, I’ve discovered that it serves you well to avoid coinsurance. I am sure there are many reasons, but together the two laid out below make co-insurance requirements as welcome as a fish head on your doorstep!
But before you smell how bad ‘coinsurance’ can be, let’s explain what it is. Unless you have insurance that has no additional obligations beyond your premiums and deductibles, you will be required to make additional contributions for your health care on each provider visit. The payment comes in one of two flavors:
‘Co-Pay’ where the insured pays a fixed amount. For example, my policy has a:
$10 co-pay to see my PCP; $35 if out of network.
$45 to see an in-network specialist, $70 if out of network
$5 for all lab tests obtained on the same visit
$225/night for each night spent in hospital
‘Co-Insurance’ where the insured pays a percentage of the contract cost of services. My policy requires:
20% of the cost for outpatient services in-network, like my use of the wound clinic; 40% out of network
20% of diagnostic radiology like MRI’s; 40% out of network
20% of diagnostic procedures like biopsies; 40% outside
And most scary if you have ever seen an IMRT bill, 20% for ‘therapeutic radiology’ – say for cancer; 40% if out of network.
Co-pays give you the comfort of knowing how much a visit will cost you – even if the pain of the amount balances the security of knowing how much. Co-insurance is open-ended!
If you have ever tried to find out in advance how much a procedure will cost, you will know why I say open ended. You can’t find out what it will cost, even if you try to. I needed an MRI earlier this year and discovered that the cost – or should I say the amount on which I would be charged 20%, was more closely held than the President’s financial statements.
Despite calls to several providers to price shop, and to my insurer United Healthcare who assured me they would identify my exposure, I never found a reliable number – and I had the correct billing code. The Director of Radiation Services at my local in-network hospital, was equally perplexed – she could not tell me what it would cost me other than it would be cheaper at their outpatient radiology offices than in the hospital. And the number provided by the radiology office bore as much resemblance to the amount finally used to figure my co-insurance as an orange does to a banana.
When that bill finally arrived this week, the full MRI cost was $4587 (!!!); the contract cost between the provider and the insurer was $824 of which my share was $$165. I had been told ahead of time the cost would be $358 and I would pay $72.
And even if you find the correct contract cost between the provider and the insurer, Medicare patients face a second issue – sequestration! What the heck, you ask, is sequestration. Well it’s an excuse on the part of the insurers to increase your co-insurance. Evidently ever since 2014, the insurers have actually paid the Providers 2% less than the maximum allowable amount approved by Medicare and used to determine your co-insurance billing. So in fact the patient pays a higher co-pay, the insurer pays the Provider less and it pockets the difference. This is ‘clearly’ explained on the back of my Medicare Monthly Explanation of Benefits in a box that states,” Plan Share may include a 2% Reduction for Sequestration’!
Bottom line – avoid co-insurance. And the good news for me. Next year my policy has a $125 co-pay for MRI’s versus a 20% co-insurance. And by the way, I took up the difference in my MRI payment with the Provider based on the pre-visit quote of $358; they agreed to waive the difference – you are your best advocate!
Our own Peter Kafka wrote this commentary in the reminder for the virtual group he moderates. We think it applies to all chronic and serious conditions ……
Bureaucracy is one of those words that all my life I have never been comfortable spelling. Even today in my early 70’s I still have to double check the correct spelling. Perhaps this is indicative of the fact that I have never really come to peace with the necessity of bureaucracy. Even in my final career spending 24-years of my life working for a federal agency, The National Park Service, I was always uncomfortable and tried my damn best to break the mold and not be a government bureaucrat. I did not want to be the guy in the uniform telling the public; “NO!”
What does this have to do with Prostate Cancer, I hear you ask? Well, if you have not run into the obstacles of the Medical bureaucracy yet, you have not traveled very far in your cancer journey. “Why do I have to wait two months to see a doctor?” “Why does it take two weeks to get my test results?” “Why can’t I see another doctor and get another opinion?” “Why do I have to communicate through the computer portal?” “Why won’t my insurance pay for my treatment?” “Don’t you know that I am sick, I have cancer, my anxiety level is through the roof and I just don’t have the energy to fight for my health.?”
Perhaps none of this is familiar and you have been sailing ahead on calm seas with a steady breeze. But my guess is that many of us have ongoing challenges with the medical bureaucracy.
In my current circumstance I find myself with a rapidly rising PSA and a 5-week long wait for a trial scan before I can consider treatment. All I can tell myself is; “calm down Peter, you’re not going to die”. Really? Who says?” Perhaps it is the experience of my years listening to others in our AnCan Online support groups and other meetings where I have heard of men waiting much longer and enduring many more obstacles than myself, but still…..
I tell myself that at least I am in America. At least I can ring the bell and try to get someone’s attention. And the medical bureaucracy responds: “BE PATIENT!” What do you think I am? I am a PATIENT-MAN! That is why I am here, waiting for my 5 minutes with the doctor, trying to track down my test results, trying to make another appointment that works for me.
You certainly have my sympathy. I don’t claim to have the answers to this dilemma. I have been trying to manage my own health care from 2,500 miles away for over 5 years now and it hasn’t gotten easier. But I am still a PATIENT-MAN and with your help and support I will continue this journey and try not to take the Bureaucratic – “NO” for an answer, at least some of the time.
Prednisone with Zytiga; fighting mental acuity on Zytiga – Ritalin, exercise; Zytiga and dreams; experience on darolutamide Nubeqa; NIH scan protocol; when to get your tumor sequenced; a caregiver’s experience; what your caregiver needs … intimate relations; getting olaparib prescribed; surgery follow-up with high Gleason; CBD for hot flashes; intermittent hormone therapy
It’s that time of year when we decide if we are going to change our medical coverage for the coming year – whether it’s a switch during open enrollment or changing our supplemental Medicare insurance.