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Old 05-18-2012, 10:35 AM   #1
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Unhappy Train wreck at PM today, lost

As scheduled I went (an hour away) to my PM today for the block procedure as scheduled by my PM Monday. At this point in the narrative I need to backtrack on relevant facts and history.
Monday I had my first appointment with my PM who I saw for a consult 5 years ago upon referral from the doc seeing me at the time who was considering maintaining the pharmacotherapy to treat my pain if the PM was amenable. In the visit I explained my social history and financial constraints (which was the entire reason I went to PM directly as opposed to wasting more time in pain while PCP threw more ineffective meds at me) and the fact I don't have funds to waste on things unlikely to help. We discussed the characteristics of my pain and started Neurontin (5th time I've been on it) and he strongly suggested setting up a nerve block for today. I was slightly hesitant due to financial concerns, but he seemed to really be in favor of the block. I am now concerned if I express the fact I can't afford the block realistically he will consider me non-compliant to recommended therapy. Fast forward to today...
I had to have family drive me an hour to the appointment per the PM's conditions on having a driver after procedures. When I arrived I began filling out the standard pain sheet after signing in. About halfway through I was called to the desk, where they requested "copay". Now I should note I was supposed to receive sufficient funding from family for the expense remaining after what I had, but fell through due to bank red tape. I had about 1/4 of the copay required, but was basically told <that won't work> by the staff. I had enough for an office visit, but because the appointment was scheduled for a procedure, I wasn't allowed to talk to the PM to discuss and re-emphasize the constraints on me financially and decide how to proceed. And all of this somehow happened with the knowledge by the PM that I was financially limited and being reassured they were able to help.

Being told to reschedule with such blase coolness, I had to have my family driver take me back home and hour away with emotions I've never felt. My thoughts were completely incoherent on the way back, if asked I probably wouldn't have been able to tell someone my name. I even questioned whether I could trust myself, considered if it would be prudent to present to the ER for psych to evaluate me for a hold. It's possible I may have had a psychotic break - I am predisposed due to current med side effects, though I can't be sure as someone experiencing psychosis is by definition unaware of it. I still can't fully organize my thoughts and have a lost in space feeling. I don't know what to do at this point because I can't even think straight especially about this <problem>.

Any advice or comments are appreciated - I am hoping some objective opinions might be able to help me figure out the "what next" part that eludes me.

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Old 05-18-2012, 10:10 PM   #2
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Re: Train wreck at PM today, lost

I'm sorry you are having such a tough time. If you believe at any time you are a danger to your self, please seek out help. For the medical treatment and cost issue, give it some time...hours or even days after you have a disappointment such as that is not the time to be making some major decisions. You can only do what you can do financially. If the doctor thinks you are non-compliant due to cost, than so be it.

I'd give this doctor some time and see what can be worked out. The office staff typically doesn't have the means to be making exceptions for copays. If they don't charge you for a "missed" appointment you're actually lucky, as they held that spot for you and expected to be making money off the block. Most commonly doctors offices won't do work without knowing they will get paid, whether by you having insurance and paying your copay, paying in cash, or a predetermined agreement (such as an installment plan).

If you can't reasonably come up with the procedural copay and reschedule for that, I'd reschedule to follow up with the doctor to talk about other options. If something is going to be such a stretch for you, taking out a loan, etc, its probably not the best option. There are always other options, whether its with this doctor or another one. If the Neurontin didn't help the other 4 times I would be sure to mention that to the doctor and ask to try something else (its unusual to start and stop a med that many times...cost?). A therapist may be able to help you cope with issues such as this which come along with chronic pain, similar to anxiety, depression, etc. Its very common. Hang in there! Best wishes.

 
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Old 05-19-2012, 03:04 AM   #3
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Re: Train wreck at PM today, lost

I appreciate the support and concern, I think I got lucky when I took my Neurontin (which I am taking at my previously prescribed dose of 1800-2400mg Q8). Even though there is debate on the issue of Neurontin used as a mood stabilizer, it has always had that type of effect on me, so it helped to center me again, thank god.

My dad who is a long time chronic pain/PM patient with both a spinal cord stimulator and morphine/fentanyl intrathecal pump plus respectably strong oral narcotics and adjuvants was with me, being the driver and all. In the aftermath he suggested something similar regarding the compliance issue, though I didn't process it since I was 'not at home' mentally, if you will. When I bring partial payment in the largest amount possible for me, the PM knows my financial status, I am amenable to a payment plan, and have family present who affirm the situation, either he will re-strategize or I need to re-evaluate him as a PM. I don't have a lot of hope for a block working, though I should have the money next week. Even if I tried it and it worked, I would never be able to afford blocks over and over. As far as I know, they aren't charging me for the missed appointment, so I will count that as a blessing if it holds true.

Realistically I think I will schedule an office visit to save money for future office visits while allowing me to plead my case to him. I would hope if he is even half sensible he will understand that I am not being noncompliant as I showed up, attempted to have the procedure, and they were the ones directing me to reschedule.

My dad and I are of different views on how to approach the PM at that point though. I think I should explain my previous successful therapy using narcotics and adjuvants, some of which he endorsed in a consult in 2007, and request a similar treatment plan with a LA opioid, adjuvants, and maybe something for BT. My dad thinks that will be tantamount to saying to the PM "Doc, I really want some Norco, Oxy, or Percs - hook me up!" this early in treatment, and suggests waiting 2-3 appointments. I am at an impasse because I trust my approach plan fairly well, but I also am tempted to defer to my dad since he has been doing this (dealing with PM) for decades. Any thoughts on whether to wait a bit, or go ahead and discuss the multimodal opioid centered therapy that had me stable before?

Went on and off Neurontin based on a combination of different treatment plans and cost issues. It is an ok adjuvant at certain doses for me. I very nearly did in fact call my psychiatrist (last saw in 2010) earlier for psychiatric support. I only backed off due to uncertainty of whether my account was balanced.
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Old 05-19-2012, 04:44 AM   #4
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Re: Train wreck at PM today, lost

You need to set up an office visit and go in and have a very Frank conversation with your PM. Just because you mentioned during your exam that Finances were tight and he said, "we'll take care of you", that is not paramount to him agreeing to let you pay what you can. In the big Clinic settings, the Dr.'s rarely even know what the Fee Schedule is, much less how payment plans and that sort of thing is set up, that's why they have Billing Departments.

Your dad is right in that you do have work on your communication skills with your Dr. Your Dr. didn't understand that you couldn't afford the Injection and you didn't seem to understand that you would be expected to pay a full co-pay. But I can tell you, without a pre-arrangment there's not a PM clinic in the U.S. that will let you walk in for a Procedure and just let you pay what you have in your pocket, they just don't work that way. There was also the problem of you not understand being able to see your Dr. and talk to him. These clinics have to keep a tight Schedule. They do Procedures on certain days and clinic hours on certain days, and never the two shall mix. It's the only way they can keep things going smoothly and get people in and out as comfortably as possible. When people go in for a procedure the last thing they want to have to do is wait for a Dr. to discharge them because he's seeing patients, that's not fair to them.

So, there was a lot of miscommunication here. Make yourself a new appointment and work this stuff out. Try not to let your fear overrule things. Your Dr. is not going to dismiss you from his practice because you can't afford expensive Injections and Procedures right now....in this economy, he's heard this plenty these days. And you can go in and explain your needs without sounding like a drug seeker, as your dad fears. You just have to be calm, composed and think about what you want to say beforehand....

Dr. Smith, I want to do whatever I can to make this pain in my back get better and be easier to manage. My problem right now is I have very limited funds and I don't have health insurance. The procedures and injections that you suggest are all very expensive...can you help me think of a solution to this problem? Does your office do payment installments? Do any of the Drug or Equipment Companies you work with offer grant money for patient care? Could we do medication for now with physio, massage and PT excercises that I could be taught to do at home? A low dose Long Acting med with the Neurontin and continue to use the TENS unit you prescribed perhaps, then check back in a few weeks and reevaluate? Or what do you suggest?

something along those lines....

You can talk to your Dr. without being sketchy, or displaying drug seeking behavior...he's just a man, just like you. Just throw some ideas around and give him a chance to "talk" with you about them. If he's not open to discussion or just shuts you down and says "injections or nothing", which it doesn't sound like he will from what you said about your first visit, then you may have to change Dr.'s.

You can only do what you can do....

Hang in there,

Kat

 
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Old 05-19-2012, 01:35 PM   #5
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Re: Train wreck at PM today, lost

I agree with Kat. I'd schedule another appointment with the doctor. Discuss whether they can set up a payment plan for a block (or have you wait until you have the money in hand for your portion) or to move forward with something else. You asking them if it worked how often you would likely need to repeat it can be helpful in the decision...it may be easier to see it as something not worth you trying at this point if they think you may need to repeat it every 2 weeks or something.

I agree they will not pick you out for not being able to do the block. However, they may be less likely to prescribe narcotics. I agree with your dad...I would not say that you were stable on X Y Z meds in the past (unless asked; actually, a good doctor will ask if anything has worked for you in the past).

Even knowing X Y Z worked in the past, they are likely to have a different step therapy than your last doctor, and unless you have documented failure of everything they would try you on before X Y Z, you are likely going to have to just through some hoops first. I would look at that as a positive thing though.

I'd give this doctor the opportunity to see if something non-narcotic that you can afford could help you more or be a better option than what you've been on in the past. Emphasize you want something that is sustainable. If you don't think trying something that requires repeat treatments that you can only try once isn't worth it, put it in those terms. Best wishes.

 
Old 05-19-2012, 03:17 PM   #6
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Re: Train wreck at PM today, lost

Hi Recombinant, Although you seem very kowledgable when it coms to medical terminaology it's a bt confusing unles your specific with your doc and when asking for help or sugestions. You obviously have some type of insurance or you wouldn't have a copay. I have been in the PM system for for almost 18 years and my wife for about a decade. MY wife has Chiari 1 malformation and Charcot marie tooth, now called hand and motor sensory neuropothy. Basicaly the nerve and musle deteriorate from the extremeties inward. She curently has a 5MM comprsssion of the spinal cord from a disc at C5. Her treatent plan includes medication for which she is seen every 3 months to manage at this point after years of showing she was a reliable and compliant patient. The expensive portion of her treatment is that she has Botox injected into her neck and shoulders every 10 weeks and an occipital block done at the same time.

We also have to make payment arangements which includes paying her copay at each apt and the unpaid balance we pay on a monthly fee schedule. Since they dont exactly know what the balance left unpaid by insurance is at the time of the injections they can't really ask for that up front. It works out that her unpaid portion is usally about 150 bucks every 10 weeks for the injections and her office copays are 35 dollars. So she pays the copays at the time of service which is required by all patients. We all have financial isues. Once the bill comes for the unpaid balance we set up a payment plan typically of 50 bucks a month which basically means we are always paying the office for he unpaid balance but by the 10th week the balnce isusally down to the last 50 dollar payment. We have to make the copays at the time of service.Most office have a sign at the front desk and ebven collect it brfore you even go back.

I cant imagie any drug combination therpay that will cost you lesss than 50 bucks a month. So being able to afford a copay for medication apts but not any procedures doesn't really make sense. The meds used in PM are very expensive so it doesn't sond reasonable to make this request. . If you can make a the office copay for the meds you can make the copay for the procedure and then work out a payment shedule for the unpaid balance of the procedure. The doc even agreed to this.

I get the financial difficulties, I became disabled in 99 after the 3rd revision of a failed spinal fusion left me bed wridden for almost a year. It really came down to selling the house before it was forclosed which we were forutunate enough to due. WE had to comletely change our lifestyle when my income was lost and it took 2 years for SSD to aprove my case.

You may need to change your lifestyle and move in with a family member, Inquire into lower cost housing, free meds progrms whatever it takes to get you to where you can afford the treatment you need. This can be done but not without changing your current lifestyle. If you need a room mate, need to move in with family, you simply have to swallow your pride and do what it takes to survive.

It sounds like they would have done the procedure had you simply had the office copay. I have to agre with your dad that going back and paying an office copay to explain you can afford copays for office visits that provide meds but can't aford copays for procedural visits they have told you they will work with you on the remianing balance isn't realistic. If you had the copay non of this would be going on and your solution is to pay a copay to explain you can only afford copays when medication is provided? It's simply not an argument I se you being able to justify and expect a succesful outcome.

In my wifes case she was able to reduce her medication intake by 2/3rds once they started doing the procedures with botox and found the right period of time she can go between procedures. Botox wasn't the first they tried. The did nerve blocks, trigger point injections, ESI's. Finding the right procedure is just as important as finding the right medication combo. She has been able to continue to work on reduced meds because of those procedures not because of the meds.When on meds alone she was having absant seizures and was over medicated to the point that she was terminated by an employer that thought she was falling asleep at her desk or zoning out when in fact she was having a seizure with her eyes open without the jerking you would normally expect from a grand mall seizure. An absant seizure is more like being stuck in a brain loop where your frozen for a few minutes unaware of your suroundings.

We no longer own a home and between my wife and my own medical expenses more than a 3rd of our total income is spent on medical. Yes it's tough, we made huge changes in our lives, it wrecked our credit which we have been able to rebuild. But change in lifestyle, where we lived, etc was all part of learning to cope with the expenses of havng two people in the home with major disabilities. There is almost always a solution, we may not like the answer to that problem but if it's what it takes to keep you from having a breakdown where you consdider an ER visit with a 200 or more copay to be admitted for observation doesn't seem it's going to solve your financial problems.
It sounds like if you continue doing it the way you have where you haven't been seen by your psychiatrist in years when you seem to have some real difficulties and starting and stopping care for your spinal issues as if it was something you can chose to do is leading down a dark path.

When that choice is no longer working for you, you need to consider your alternatives whether it's disability, state aid, Free med programs,taking on a roomate or moving in with family, selling or downsizing your home and doing whatever it takes to ensure your continued health care. It may mean swallowing your pride and asking for help or taking the corect steps to help yourself. Asking a doc to simply medicate isn't a realistic step and may simply not be the right option even if it worked for you in the past. Who is going to pick up the tab if you allow things to progress to the point of a psychotic break. I know it cost me 200 bucks just to walk into an ER, and all this is over a copay? Sell something, pawn it, do what you need to do to make things work. I had never been in a pawn shop untill I was disabled. That's simply what life is like when your disabled and 1/3 of your income goes to medical expenses. If I could pawn a closet full of 400 dollar taylored suites they would be gone too.

Thier is free healthcare for the indigent but the fact you have insurance pretty much means your not indegent. Neurontin certainly isn't cheap. It's just not reasonable to expect your brand new PM doc to treat you without trying alternatives and to waive the basic copay. Sometimes that's all they get from an office visit if your check your EOB's. I too have an implanted pump and have medicare and the meds they put in the pump aren't covered, by the rules of medicare they can't ask me to pay for an uncovered expense so docs really aren't doing procedures when their is a risk involved and very poor compensation. The greater risk is to their licence when they medicate only because a patient says they can't pay a copay an interventional procedure or injection that could greatly reduce a patients need for meds. Not everyone gets great relief from interventional procedures but my wife lives by those injections, by the 8th or 9th weak she is barely functional so I dont question the expense and I cant remeber the last movie we saw in a theater.If you have a computer and internet service you can afford the copay.

I am sorry your stuggling, but I think many of us do. Medicare prescription coverage has a 4000 dollar doughnut whole which I hit and come close to maxing out just in meds every year. That doesn't count my cardiologist., Endcrinologist, Hemetologist, hosptilzations, cancer treatment or anything else that pops up. In the last couple years I have been using a healthcare providor that's backed by the church, If you have an option of going to a religous based hospital group, like the methodist orgs, the catholic orgs, they are more likely to help reduce your out of pocket expenses if you qualify. You qualify by income alone. You dont get to deduct a 3k mortgage from your earned income. Their are all kinds of ways to ruduce your living expenses and if that's what you need to do to get the help you need, it's sounds like time to do it.

Good luck, Dave

 
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Old 05-19-2012, 05:41 PM   #7
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Re: Train wreck at PM today, lost

Some insurance policies have a low office visit copay and even low prescription copays (especially for generic meds). There are a good amount of generic meds that can be used for pain such as Neurontin, Amitriptyline, muscle relaxers, NSAIDs, morphine LA pills & SA, oxycodone, etc. Some insurances will have a copay for a procedure due at the time of service that is higher than the office visit copay. Others have you pay the office visit and then a percentage of coinsurance after the billing goes through.

I have no idea what type of insurance the poster has, but its plausible the copay due at the time of the procedure was higher than an office visit copay. Even more plausible is that the percent coinsurance expected for the procedures (we're talking about injections which can cost thousands of dollars) is going to be much more than even a brand name medication, but especially more than a generic medication.

Prescription assistance is also easier to get than any sort of assistance for procedures/injections. I've had insurance where I could get Neurontin for $5 a month but would have had to pay my deductible plus 30% of the injection cost, which often need to be done quite frequently. I think weighing the cost of treatment options is tough. I disagree in some ways as I think its reasonable to tell a doctor you can't afford procedures/injections (assuming this is true) but that you have good prescription coverage and can move forward that way.

It would not be reasonable to expect them to jump straight to narcotics though. They may never feel comfortable prescribing narcotics for a patient who hasn't tried non-medication options. There are also other therapy options that could be affordable that are neither medication or injection. Physical and massage therapy is a good example.

If your copay is high those could get tough too (if you do both it is a copay for each 1-2 times a week), but I would say with many folks insurance, physical therapy is more affordable than injections. If the patient hadn't tried it before, hadn't tried it in combo with meds, or hadn't tried it recently (pain has changed), its a good option for many types of pain.

I have been on plenty medication therapies that cost less than $50/month for several meds as I stick mostly to generics...my generic cost is $5 now but the most it has ever been is $15. At $15 I actually had a couple of my meds cost less in cash than my copay. Sure I'm not talking about the newest/latest/greatest (Lyrica, Oxycontin, Cymbalta), but even some long acting pain meds and some commonly used adjunct meds are generic. Some insurances have gone to a percentage plan though, which is usually not in the patient's favor compared to a flat copay. Best wishes.

 
Old 05-19-2012, 07:10 PM   #8
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Re: Train wreck at PM today, lost

Thanks for the comments. I really want to elaborate a little better on this reply, but I may end up being concise as I usually take short medication holidays from my stimulant meds on weekends and the drop in dopamine in my CNS causes some side effects like flight of thought.

First I should clear up the copay thing. In actuality, I have no copay as I just pay. Period. I only used the term copay because I was quoting what I was told and the staff referred to it as a copay. I have found almost all medical offices will do this because they find it distasteful or embarrassing to say "your bill is such and such." I am financing everything - procedures, diagnostics, office visits, medications, etc by the limited cash I have. Shore, your advice regarding altering my lifestyle and perhaps moving in with family or getting a room mate is good. I just wish I could recycle that idea, since I asked my dad about co-domiciling a good while back. He understands chronic pain obviously thus can relate to me, and also needs assistance at times so this was a mutually beneficial arrangement.

Here is exactly what happened. I had the fraction of payment as previously stated. My dad was expecting some of his SSD and was going to lend me the remainder by charging it to his debt card. The morning of the appointment, he told me there was a bank snafu and he couldn't access the money. Well that's just great, I think to myself. Never the less I knew I had to at least make an attempt to go - calling on the day of the procedure would guarantee a missed appointment fee. I was skeptical about being allowed to actually have the procedure, but my dad seemed optimistic citing the many times he has payed partial 'copays' of his own and made arrangements to cover the rest. Now of course I know that his situation with his PM who he's seen for decades and mine are different, but I know there's almost always options to set up a plan. My intention was to be on time for the appointment, request a payment plan, and pay what I had. I didn't have much choice - not going would have cost me the whole fee for the appointment without having received anything in return for the money. I feel like I got stuck in a sorry situation, and did the best I could think to do under the circumstances and time constraints. I have severe polygenic anxiety as well as depression and several other psych Dx. The stress of the situation along with the frustration I have felt for so long was a trigger for the psych issues and everything went downhill from there.

The reason I say I can't afford the procedures is that they are serial (repeating), several 1,000, and I don't even know if they will be effective. The last multimodal medication regimen I was on did work, and it cost about $240 a month when requesting generic versions if available and using my pharmacy discount card. I would rather not get into my specific finances, but I can handle a few hundred a month for Rx's and then a few more hundred for office visits. Several grand on top of even more for office visits for follow up isn't just in a different ballpark, it is a completely different game, so to speak.

I have a google docs list of the meds and treatments I have tried, their relative success, failure, and notes regarding them. I know I can't link to it, but it is about 4 pages long in table format, goes back about 7 years, covering the entire spectrum from aspirin to C-IIs and atypical, off label, and even medications that could in theory, by huge leaps in imagination, cause an effect. I guess what I am saying is I can't afford to do trial and error with treatments in that price range, especially with a comprehensive list of both pharmacotherapy and other modes of treatment which have proven to have previously succeeded, assisted, or failed.

Returning to the visit issue briefly: I don't know if I did the right thing by going to explain in person or not. But I did not know that they did not have anyone from billing at that location. Whether that would have made a difference on my decision to go I have no idea, but I thought there would be someone there that I could at least talk to about payment plans. Because it is a multi-provider practice with about 8 locations (a main office and multiple satellite locations to serve different areas of the city), the billing is all handled at the main office which I hadn't even considered, so I guess call me naive...
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Old 05-20-2012, 10:59 AM   #9
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Re: Train wreck at PM today, lost

Good luck in your next appointment with this doctor. I think you can explain the couple hundred a month vs. a few thousand a month and saying that unless there is a cheaper treatment than injections you can only afford medications at this time. See what they are willing to try you on in addition to the Neurontin. Physical therapy might be doable in cash with a discount at a slower pace than the typical twice a week, but if you've failed that before, get your medical records to help explain that...medical records are better than a list of what you have tried, especially since you will be wanting your doctor to skip some steps in their typical treatment plan.

As for the prescription cost, in addition to use a discount card, asking only for generics, and shopping around for price, see if you qualify for a manufacturer's prescription assistance program. Sometimes a brand name med if you can get it for free or cheap (based on income) could be cheaper than a generic you pay cash for. There may also be a state or county program to help out.

Ask if your pharmacy will price match Costco as they are cheapest...lately pharmacies haven't been doing that as they cite they are a membership place (although you can fill prescriptions there without a card), so if not, the second cheapest is likely Walmart. This is more ideal than driving further to get the same price.

Make sure your doctor is charging you the reduced cash price, what they would accept from the insurance if you had insurance. You don't want to be paying the list price, often at least 30% higher. Sometimes they will give a cash discount on top of that (as they get same day payment, not waiting a couple months for reimbursement). It sounds like you need to talk to the doctor about how to proceed, then get the phone number/location for their billing department to discuss the option of a payment plan, discount, etc.

If you have medical records to show what you have already tried & failed, and can't afford costly treatments like injections (if you have an income showing them a pay stub or disability payment stub could even help), I'd hope they could skip some steps and only try you on medications you haven't tried, unless there is a good reason to repeat something. I'd go about getting copies of your medical records now if you haven't already, as that can take some time.

Note that in most states they are legally allowed to charge you an admin fee for copying/mailing (but not all of them will). You will have to call them up and see what their process is. You typically need to obtain a release form which you sign and give back to them, but some have it online, some have you just write a statement to that affect, etc. Its good to have them for your own records as well (I've found a lot of errors in mine). Good luck! Best wishes.
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