June 2017


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Jun. 8th, 2016

Jun. 8th, 2016 08:49 pm



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.
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