I recently moved to a new state and asked my new cardiologist to continue my prescribed dose of warfarin (two years following aortic valve replacement which I chronicled here). They responded that I have to use their Coumadin clinic in order to get a prescription. I already have a coaguchek and I follow (in my opinion) a better protocol than what they require here (weekly testing with frequent phone calls and paper logging). How can I continue to get my warfarin filled without being monitored by a coumadin clinic? Should I bother shopping around for a new cardiologist or GP willing to do this, or does it just not happen?
Warfarin without Coumadin clnic
- Thread starter MarkZ
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Your doctor assumes some responsibility for your warfarin therapy. My own experience is that if you want to home test you'll need to find a new doctor who will permit that......or just continue to home test using "ebay" and go to your doc once a month so he can test and CYA. Been there done that.
I guess what I’m asking to learn about is the “eBay” strategy, and how you can still get warfarin. I have the coaguchek and I’m fine with buying the supplies. I’m also fine checking in with them every so often. What I’m not fine with is weekly testing, journaling, long hold times while I phone in the results, etc. RemoteINR was much easier but the new hospital apparently doesn’t support it.
Wait your cardio out. I had a similar problem about 8-10 years ago when I wanted to home test but my doc would not permit it.......he indicated I was not smart enough to take my own INR. I changed docs to one who did permit it.
FWIW, my earlier doc is now promoting home testing......they have even started a "drive-thru" INR service. You only have to drive to a clinic window. They stick your finger while you are still in your car. They call your "smart phone" later with adjustments, if needed. Go figusre!!!
FWIW, my earlier doc is now promoting home testing......they have even started a "drive-thru" INR service. You only have to drive to a clinic window. They stick your finger while you are still in your car. They call your "smart phone" later with adjustments, if needed. Go figusre!!!
jeffp
Well-known member
They call it a cash machine…turn the crank and money (billable services) comes out the other end.
For self testing and management you need to find docs with the right mindset. My cardiologist is OK with the whole deal. As he says, you’re doing great on your own and I have patients that need the appointment slot with more urgent things than me saying keep up what you’re doing.
I use either 10mg or 7.5 warfarin depending on the test results and he calls in one and my PCP calls in the other. This avoids the insurance complaining about what looks to be duplicate Rx. It’s cheap enough (for now) to bypass insurance altogether.
It’s either find the right provider or spend some time educating them. It’s not rocket science.
pellicle
Professional Dingbat, Guru and Merkintologist
ok, I'm not an American, but as far as I know you guys also regulate the supply of warfarin so that you need a prescription. I recommend get on good terms with a Doctor and good terms will probably include you showing them your data
Eg a graph of measurements and record of doses (mine is weekly measurement)
I haven't used a clinic in 12 years and manage myself (full dose choice and administration based on Coaguchek XS testing). I see nothing wrong with buying XS strips through eBay. I know quite a few of our fellow US members do exactly that. Just make sure that:
- box is unopened
- use by date is sufficiently long in the future that you can use all the strips
- comes with code chip
keep a steady hand on the tiller and observe trends.
I had the same problem. When medicare and the insurance companies allowed charges for warfarin dosing as a separate line item, the coumadin clinic at my cardio's practice started charging when before it was free. I complained. Went as high as the coumadin clinic director. They offered to write me prescriptions as long as I called in my results once a month ($30 copay before deductible is satisfied; $8 after). I'm Irish/German and don't like to pay for what I don't need. I contacted my cardio directly. He wanted to talk; he had already heard about my complaint. I came in, showed him my testing and dosing records. I compared the process to diabetics who don't have to use a clinic for their dosing but it's just as dangerous as warfarin. He agreed to handle me outside the coumadin clinic. He now writes my warfarin script but requires me to yearly bring in my test results to show I've been testing and dosing appropriately. If I have problems, I am to call his nurse and he will personally adjust my dose. However, I haven't had problems yet.
I agree with @pellicle that it is worth trying to convince your doc you are good at managing your own INR. At the risk of boring regular readers, this report by the UK's National Institute of Clinical Excellence found better patient outcomes with home testing. Might be worth showing your Cardiologist some of that? If they still refuse, time for a new Cardiologist in my view.
Maybe ask your Coumadin Clinic to do what mine allows a check every three months. As long as you provide them weekly or bi-weekly numbers they allow a visit every three months.
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I started with the Coumadin clinic, but quickly switched to self testing. Initially, they asked that I send them my results through their portal each week. I did so, and their replies were always something like this:
"Good job. Keep taking 3.5mg of warfarin daily."
Then I found out that each week when I reported my results to them, they were billing me $550 just to report this info and for them to give me a pat on the back with that one line reply. As I just had surgery I was over my deductible, so insurance paid 100% of each of their claims- I think about $3,300 total. I called and told the clinic I was no longer going to give them my results, as this was outrageous. Their reply was that most patients never have an issue with it, because insurance just pays for it. It is so wrong in my view for them to charge these rates. I told them so, and they suggested that I at least report results once per month, as I was under their care and they had a responsibility and that I would need to at least do this to get my prescription for warfarin refilled.
One message to my cardiologist was all it took to get out from the Coumadin Clinic. I gave him my results from the past 6 weeks and assured him I would bring my Excel spreadsheet to each follow up appointment. He is now the one who prescribes and refills my warfarin prescription.
At my first follow up appointment with him, I brought pages of my INR result spreadsheet, demonstrating that I stay in range over 90% of the time. He no longer asks me to bring the data- he trusts me. My last message to him was to ask him to reload prescription, told him my current dose and that I'm still in range over 90% of the time with weekly testing. He called in my requested prescription refill immediately.
Personally, if I did not have a trusting adult relationship with my cardiologist, I would keep looking, but I know that in some areas one does not always have this luxury. There are also often otions for virtual follow up appointments and perhaps an online trusted relationship can be established with a cardiologist, if a local one can't be found willing to work with you.
"Good job. Keep taking 3.5mg of warfarin daily."
Then I found out that each week when I reported my results to them, they were billing me $550 just to report this info and for them to give me a pat on the back with that one line reply. As I just had surgery I was over my deductible, so insurance paid 100% of each of their claims- I think about $3,300 total. I called and told the clinic I was no longer going to give them my results, as this was outrageous. Their reply was that most patients never have an issue with it, because insurance just pays for it. It is so wrong in my view for them to charge these rates. I told them so, and they suggested that I at least report results once per month, as I was under their care and they had a responsibility and that I would need to at least do this to get my prescription for warfarin refilled.
One message to my cardiologist was all it took to get out from the Coumadin Clinic. I gave him my results from the past 6 weeks and assured him I would bring my Excel spreadsheet to each follow up appointment. He is now the one who prescribes and refills my warfarin prescription.
At my first follow up appointment with him, I brought pages of my INR result spreadsheet, demonstrating that I stay in range over 90% of the time. He no longer asks me to bring the data- he trusts me. My last message to him was to ask him to reload prescription, told him my current dose and that I'm still in range over 90% of the time with weekly testing. He called in my requested prescription refill immediately.
Personally, if I did not have a trusting adult relationship with my cardiologist, I would keep looking, but I know that in some areas one does not always have this luxury. There are also often otions for virtual follow up appointments and perhaps an online trusted relationship can be established with a cardiologist, if a local one can't be found willing to work with you.
pellicle
Professional Dingbat, Guru and Merkintologist
Pardon me for using this to bring up the importance of this:
Also, if you can, especially if you aren't competent build a trust relationship with someone who has experience in managing INR. I believe that should be you and maths.
Just last night one person said to me about "the system" that I developed and taught him:
the best part is he's in his first months post surgery.
this is the key point I always make when advising people about their INR management: build a trust relationship with your Dr.
Also, if you can, especially if you aren't competent build a trust relationship with someone who has experience in managing INR. I believe that should be you and maths.
Just last night one person said to me about "the system" that I developed and taught him:
Thanks, INR today was *.* Using the What IF to decide on tonight’s dose (XXmg) is super helpful.
the best part is he's in his first months post surgery.
I used to test monthly at the lab to keep my doc happy and prescribing warfarin. I would also test weekly at home with my eBay supplies I bought to benefit from more frequent testing. I wouldn't tell the doc about my testing at home.
I'm now on the overpriced at-home testing program covered by insurance, but I'll hit my out-of-pocket max, so whatever.
Thanks all for the advice. I really wanted to get a sense of how you all are handling this issue. It’s good to hear it’s not completely rampant everywhere. The (ridiculous) cost aspect is frustrating but I’m not factoring it in because unfortunately the healthcare system is already outrageously expensive, so this isn’t a hill I plan to die on. Still, it’s a problem that my doctors are not being the least bit flexible or accommodating.
Also I should mention that the hospital that is giving me grief right now is very famous and well regarded, and also, I happen to work there as a member of the medical faculty. I’m not convinced that patient care is at the forefront of the priorities of the organization, and the reluctance of my doctors to renew my prescription (even on a temporary basis) tells me they are prioritizing protocol over patient safety, which is a real problem. So I am in the process of establishing new care at a competing health system — not a good look when your own doctors and faculty choose to seek care elsewhere.
Also I should mention that the hospital that is giving me grief right now is very famous and well regarded, and also, I happen to work there as a member of the medical faculty. I’m not convinced that patient care is at the forefront of the priorities of the organization, and the reluctance of my doctors to renew my prescription (even on a temporary basis) tells me they are prioritizing protocol over patient safety, which is a real problem. So I am in the process of establishing new care at a competing health system — not a good look when your own doctors and faculty choose to seek care elsewhere.
pellicle
Professional Dingbat, Guru and Merkintologist
just wondering if they have some reason why they won't accept you emailing your decision or (better yet) an online secure shared method of your results?
Either way it all sounds bad there and I see why you say:
Best Wishes
Because that’s not the way they do things. I don’t mean to be flippant in my response to you. That’s just what they told me. They also insisted on sending me a new coaguchek and scheduling an instructor to teach me how to use it (even though I’ve been using one, including tonight).
In short: Protocol.
The large hospital systems are often too rigid for their own good. But they also have to realize that patients will shop around when they don’t like your protocol. The problem in this case is that they have no patience for that. They are treating it as refusal of care, not acknowledging that seeking options takes some time. Meanwhile I’m almost out of pills.
By the way, this was the PCP’s response to the cardiology nurse’s request to write me a prescription:
“I will not. I have had a couple of other patients initially decline to work with the anticoagulation program, but that is clearly our safest care option and our standard of care here. I will not short circuit that safe care option by prescribing warfarin on the side. The patient can either choose to engage with the anticoagulation clinic, or not. His choice. Thank you.”
This of course is a false dilemma. “Either choose to engage or not” is not a viable choice when it comes to a medication that keeps me alive. It also fails to acknowledge that “declining” to work with HIS hospital’s coag clinic is not the only safe option. The hypocrisy that “safety” is at the root of his stance while he is denying me life sustaining medication is also notable.
I get that he may choose not to continue care if I don’t follow his recommended protocol, and that’s fine. But denying treatment rather than softly transitioning my care to another provider is downright malpractice in my opinion.
“I will not. I have had a couple of other patients initially decline to work with the anticoagulation program, but that is clearly our safest care option and our standard of care here. I will not short circuit that safe care option by prescribing warfarin on the side. The patient can either choose to engage with the anticoagulation clinic, or not. His choice. Thank you.”
This of course is a false dilemma. “Either choose to engage or not” is not a viable choice when it comes to a medication that keeps me alive. It also fails to acknowledge that “declining” to work with HIS hospital’s coag clinic is not the only safe option. The hypocrisy that “safety” is at the root of his stance while he is denying me life sustaining medication is also notable.
I get that he may choose not to continue care if I don’t follow his recommended protocol, and that’s fine. But denying treatment rather than softly transitioning my care to another provider is downright malpractice in my opinion.
pellicle
Professional Dingbat, Guru and Merkintologist
Agreed, its grandiosity pure and simple (IMO)
And this
Is incomprehensible in its failure of duty of care
Why can't any PCP write a prescription?
jeffp
Well-known member
They can, but many won’t.
My PCP knows that I self mange and have been out of range maybe half dozen times in 18 years. She’s fine with it, and I just shoot her an email and get a refill. She does like me to pop in for a visit once a year though.
They can. In the 56 years I've been on warfarin my PCP has always written my prescription.....not my cardio. I have only been fired by one PCP because I would not blindly follow his warfarin dosing directions. His medical specialty was "sports medicine" and I think he was probably hung over the day his professor covered anti-coagulation monitoring. Fortunately, I have had good anti-coagulant care for a number of years.......both in their office lab and when I home-tested.......most of the time they ask me about changing dosage.......after all, I've been dealing with INR since most of them were in diapers. But I am glad they are there just in case I ever have a REAL anti-coag issue.
pellicle
Professional Dingbat, Guru and Merkintologist
why is that?
every random clinic I've gone to in Australia asks "why" I say "mechanical heart valve" and that's it ... they usually just engage in chatter about how I'm doing, how do I find the valve, who is managing me then how is managing myself going. Same experience in Finland too.
I've needed to change doctors a few times due to moves and stuff.
