Ancan is delighted to announce a new virtual group for the rare disease, sarcoidosis. Sarcoidosis effects between 150,000 and 200,000 in the USA, with an estimated 1.2 million individuals effected worldwide. Leaning on Wikipedia:
Sarcoidosis is a disease involving abnormal collections of inflammatory cells that form lumps known as granulomas.The disease usually begins in the lungs, skin, or lymph nodes. Less commonly affected are the eyes, liver, heart, and brain. Any organ, however, can be affected. The signs and symptoms depend on the organ involved. Often, none, or only mild, symptoms are seen. When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur. https://en.wikipedia.org/wiki/Sarcoidosis
AnCanis partnering with Sarcoidosis Online Support Group, a collaborative of several sarcoidosis support organizations from around the US led by Frank Rivera, a renown sarcoidosis patient advocate. This is AnCan’s first rare disease virtual group and fulfills the vision to make peer support easier for people living with rare and chronic conditions where others living with your disease are hard to find.
Prolia vs Xgeva for bone strength; generic vs branded abiraterone; abi protocol with food; comparing Plan D drug coverage; back pain with advanced PCa; CBD for hot flushes; Casodex role in advanced PCa treatment; neuroendocrine/small cell/morphed PCa treatment; bone biopsies and scans
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!
The example used is an elderly man with prostate cancer, but frankly this approach is applicable to any type of cancer. And this approach makes a mockery of one of my favorite straw men, the USPSTF, who does not recommend PSA testing for men over 70. HELLO USPSTF ….. 70 is the new 50!
If you are over 65, consider raising geriatric assessments with your medical oncologist.
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.
More on The Language of Cancer …. The Language of Respect! Earlier this year AnCan ran a couple of webinars on The Language of Cancer – please search on this page under ‘Language’ and you’ll find links to the earlier webinars and articles.
We at AnCan think that the language used when the medical world interfaces with patients could certainly use some improvement – and not just w.r.t. to cancer. In preparing for our second webinar, I ran across an excellent discussion on Medscape. Dr. Tatiana Prowell was one of the participants, and she has just proposed guidelines for how the medical community should refer to patients – and to each other, for the upcoming 2020 ASCO sessions. Unfortunately I could not figure how to download other than in photo format that I am inserting below and hope you can download and enlarge! Failing that, read it on Twitter https://twitter.com/tmprowell/status/1197543809594351616 .
We at AnCan endorse Dr. T’s recommendations ….. patients don’t fail treatments; treatments fail patients!
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.
