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Jun. 8th, 2016 08:49 pm


[personal profile] nightengalesknd

My patient needs medication. Well, they don’t “need” medication. I know better than to use such language. After a discussion of the potential risks and benefits of medication to treat ADHD symptoms, the child’s family and I made a joint decision to trial medication. Actually, this is the fourth medication we have trialed. We’re on the phone after the plan we made at the last visit was not successful and the medication is a controlled substance so I can’t call it in. I can mail them a prescription or they can come pick it up. When? Well I’ll print it out as soon as the phone call ends. I print out the prescription, sign it, add my ID number, photocopy it, put it into an envelope labeled with the child’s name, and file the photocopy. Then I document the phone call.

The prescription is picked up and taken to the pharmacy where it is submitted for insurance approval. It is denied. I knew it was going to be denied. In fact, I had brought that up during the phone call. This medication is hard to get approved, but we can usually get it approved after two other medications have failed. Of course, there’s no real way of knowing. There is no system where I can query the insurance company about coverage before writing the prescription, having it picked up, brought to the pharmacy, submitted to insurance and then denied. Oh, there are published formularies, but all they say is “prior authorization required.” They don’t tell you what is needed to meet the criteria for the authorization. Dutifully, my nurse fills out the prior authorization form. I see it as I walk past and help her out by telling her the prior medications tried and the reason they were stopped. I can’t give her the specific dates, though. She’ll have to go through the medical record for that. Of course, the insurance company already should have a record of the prior medications tried and the dates, because they approved (often grudgingly) those medications in the first place. But onto the form they go.

Sometimes the insurance company denies the medication unless I can tell them why the “preferred” medications are not appropriate, but neglects to send me a list of preferred medications. Sometimes I have to call the “peer to peer” line, or the “appeals” line to plead my case. Of course, the number provided is never the actual phone number I need. In one notable case the number on the denial letter reached a completely different state. Sometimes the “peer to peer” line gets me the medical director of the insurance company, which seems like overkill. Sometimes it gets me a clinical pharmacist, which seems like underkill. Often it seems that whoever is at the other end of the call has never met a child with ADHD or autism, or perhaps any child at all, ever, or perhaps a person. You have to call their line and leave a message stating when they can reach you to go over the appeal. One time, when the person called me back, they had no idea of the name or purpose of the test they were denying.

Meanwhile, my patient’s medication is finally approved for a month. No reason why it is approved for a month, rather than 6 months, or a year. The pharmacy calls the family to pick up the prescription. The child tries the medicine. Things get maybe a little better, not much. We decide to increase the dose, from 5mg to 10. Go ahead and try giving two capsules starting tomorrow. Call me in a week and let me know if things are better. Things are better? Great. I’ll put a prescription in the mail for 10mg capsules. The car breaks down but eventually they get a ride to bring the prescription to the pharmacy. The pharmacy submits it to insurance. The insurance denies it because it is too soon since the last prescription.


I am running low on continuous glucose sensor supplies. I thought I had another box (3 boxes in a shipment) but I apparently don’t. I’m on my last one which runs out Sunday. First thing Monday morning I e-mail my contact at the continuous glucose supply manufacturer. I remember to include a spreadsheet with my last 3 months of blood sugar numbers because my insurance company now requires it and if I forget, it’s another day and another e-mail. Tuesday I get an e-mail from someone else at the continuous glucose supply manufacturer stating today is too soon but I can get supplies in 2 days and the good news is I have met my deductible so they are 100 covered and do I want them to ship them out in 2 days? Yes, please. I respond. Thank you.

Wednesday I get an e-mail. Sorry, our insurance doesn’t let you order supplies directly through us anymore. You have to go through this specific supply company. I will send them all your records such as your prescription. Here’s there number.

I call the specific supply company and am told they will not accept my prescription forwarded to them from the manufacturer. I need the prescription filled out on their specific form. I need to contact my doctor’s office about this form. Past attempts to reach a human at my doctor’s office have been disastrous. I saw a doctor there once, who then moved out of state, and then saw a PA once, who told me she would be on leave around the time of my next appointment. I have no idea if that means she is on leave now. I’m also not sure if she can write for supplies or if it has to be a “doctor” and if a doctor, I don’t know the name of the doctor because she probably just handed the form to the first one she saw and asked them to sign it.

I hang up the phone and burst into tears.

I’m between patients at work and have had a no-show. I have some lunch. Then I call my doctor’s office. I pick the option that seems most likely to lead to a human, the one for a “medical secretary.” I’ve never heard this term used before in any medical practice I have studied, worked or sought care. They want to transfer me to a nurse. I ask for the direct number for the nurse because in my prior experience, no one ever answers the phone there and I don’t want to leave a voice mail to get returned at work and play tag. On my fourth try I get a nurse. They are endocrinology. I need diabetes. I get transferred to the nurse in diabetes.

He understood the problem immediately. Actually he thought I was someone else who had had the same problem yesterday. He knows someone at the supply company. He can get that person to send him the form and he can get the PA to sign it and send it back. He asks for my phone number. I tell him I have patients and can he e-mail instead. He reads me back my e-mail from my medical record and says he will e-mail me. 6 PM and no e-mail.


I learned this term from, who is, I believe, doing research on the subject.

It appears to be referenced in a very few journal articles.

I have never heard the term discussed among medical professionals. I have very rarely heard the general topic discussed, for example, in that patients are more likely to “comply” with medications taken once daily than thrice daily. I think I did attend a pediatrics lecture once that addressed the amount of time treatment for cystic fibrosis can take if a patient follows all medical advice.

Mostly, if health care professionals talk about healthwork, it’s to complain about patients who don’t do it.

I once sat in a disability social justice group where we went around the circle discussing our weeks. One person had been on hold with her insurance company. The next couldn’t find a mental health provider. The third had been chastised by a specialist for seeking care from their specialty, after having been specially referred there for a long-awaited appointment. I brought up the term “healthwork.” It resonated immediately.

What is healthwork?

It is all the things done to improve or maintain one’s health. It includes everything about going to the doctor, including making the appointment, filling out paperwork, getting the referral from the other doctor, getting prior records together, arranging transportation to the doctor, and actually having the appointment. It includes all of the same for a mental health counselor, or physical therapist. It includes doing all the things at home that they advised you to do. It includes time on the phone with your insurance company. It includes time spend pressing 13 numbers in the phone tree. It includes going to the pharmacy, waiting at the pharmacy, going back to the pharmacy. It includes taking your medications. It includes shopping for the foods you need, preparing them, weighing them.

One advantage to giving it a name is that it can then be measured, quantified, legitimized.

It is work.

It takes, time, energy, effort.

By definition, pretty much, a lot of it is done by sick people, who are not known for having unlimited time, energy and effort. In pediatrics it is often done by parents. Of course, “parent” and “sick person” are not mutually exclusive and many of the parents of my patients have healthwork needs of their own.

It takes knowledge about how the system works

Judging from my experience today, knowledge doesn’t actually help as much as one might think it would.

Much of it has to be done by telephone, which is a problem for people who cannot communicate effectively on the telephone.

I can’t help think that universal health care would make a difference. Sure, there would still be regulations and denials and appeals processes. But there would only be one process. One formulary. One phone number. They could automatically have all the prescriptions on file. One wouldn’t have to worry about which doctors are credentialed with which company. Changing jobs wouldn’t have such profound impact.

Our hospital offers care coordination services for the patients with the highest level of need, the most complexity. They can’t work miracles. They can’t make people come to appointments and they can only remind people to come if they can reach those people in the first place. They can’t make insurance companies do anything, either. But they can do a fair amount of healthwork by proxy, requesting records, cohorting appointments with multiple providers onto the same day, making the necessary phone calls to complete a form that has to be either filled out by hand or on the computer, but can’t be saved on the computer, and that needs a copy of the child’s school calendar and the date of the child’s last seizure and the number of diaper changes needed daily.

My patient is still awaiting his medication, and I am still in limbo over my supplies. All that work and none of us are healthier yet. But after all, stress and a rushed lunch spent on the phone are definitely recommended diabetes management strategies.
Date: 2016-06-10 05:46 am (UTC)

From: [identity profile]
Yes, yes, yes
Date: 2016-06-11 06:03 pm (UTC)

From: [identity profile]
Yes. All of this, but particularly:

I can’t help think that universal health care would make a difference.

Because if we had universal health care, then we would not have huge corporations who make more money the less medical care they provide. And so who are highly motivated to tie you up in paperwork and red tape and phone calls and emails and other inconveniences, in the hopes that they will make you go away and not make them spend money on providing you the care you (or your employer, or the government) is paying them for.

Date: 2016-06-13 07:16 am (UTC)

From: [identity profile]
I've been pretty happy with Kaiser on this count. I haven't had to argue with anyone about why they should cover a medication or a test, thus far. As I've been on Kaiser for almost 2 years (will be 2 years Sept 1), I think that's doing pretty darn good. I know that some people have to fight with their insurance for weeks or months to get biologics for autoimmune disorders; I had mine in hand within a week of my doctor deciding I needed them, and would have had them sooner if I hadn't been having sleep schedule issues and missing phone calls. Yeah, obviously I still need to do all my exercises and take my pills to stay in decent condition, but the most I've had to do with Kaiser is tell my GP which medications I failed and why before getting my current set. I think I spent a week without my sleeping pills because of a miscommunication on that, but otherwise I can't remember any issues at all with getting things covered. It has just been SO different from any other insurance company I've dealt with. I really only have 2 complaints with the system: it took longer than I think it should have to get my fiance in to see a psychiatrist and a psychologist, and they don't provide the type of physical therapy that is most effective for managing my back issues. I do best when I get a certain amount of manual work, and the work-arounds for doing it yourself like using a roller or a tennis ball or a theracane just don't work as well for me. The roller (which is a new thing for me, and I wish I'd thought to ask my GP to prescribe one so I didn't have to pay for it out of pocket) is the best of the lot, but I have to be able to get up and down off the ground to use it, which is not always something I can do. Depends on how a lot of my joints are doing, and even when I'm doing relatively well, it's hard for me to get off the ground without someone pulling me up, so I'm limited to when my fiance is around.

On my old insurance, I did a lot of work at the beginning. My pain specialist said I was the only person on Medicaid he'd ever seen get Lyrica approved. I can't remember the number of hours I spent on that, but it was a lot - like 15-20, at a guess. Lots and lots of run-around. I finally managed to get a representative at the insurance company to tell me the EXACT language they needed on the prior authorization form, and when my doctor's office submitted a prior auth with that particular set of words, it went through. I think it was our 5th or 6th attempt at the prior authorization for that medication. After that, if the first prior authorization for anything didn't go through, I asked the insurance company for the words they wanted every time, and it meant that I could typically get things through on the 2nd try instead of taking numerous tries and a lot of wasted time for both me and my doctor. I can't tell you how thankful I am that I had doctors who were willing to keep trying until we managed to push things through, especially my GP (who as you know is quite an awesome person). I don't know what I would have done if they had been less willing to keep trying. I know that some doctors won't, to the detriment of their patients, though I can understand why (with the pressure they are under to see so many patients).
Date: 2016-06-25 04:08 am (UTC)

shehasathree: (Default)
From: [personal profile] shehasathree
What an excellent (horrible, sisyphysian) illustration of the phenemonon!
(How incredibly dispiriting that even a large amount of 'healthcare capital'* isn't much help.)

Thank-you so much for sharing this, and: I hear you.

(my fullstop key isn't working; it also has the close angle bracket symbol on it - no embedded links for me!)
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