Buyer Beware

As chronic and autoimmune patients, we live lives of heightened control. Different conditions can be controlled by varying degrees. Some, like diabetes (my main one) allow for a lot of control because we know what causes it and therefore, what to do to regulate it. Some, like fibromyalgia are less well known, and therefore, it is harder to regulate. Either way, we focus on whatever details we can. We plan, we plot, we obsess over every possible way to exercise as much power as we can over our recalcitrant bodies. We think that if we can control all of these little details, our lives will be as close to normal as we can get.

The control we seek can involve several elements: nutrition, exercise, physical therapy, psychotherapy, medication, and medical devices. As research and treatments evolve, new or enhanced ways to address those elements become available. They may or may not be right for your condition, but we tend to jump on them anyway. If it’s new, it must be better, right? The next thing is the best thing.

Not so fast. The risks involved with new treatments can be scary, especially if the old one is working.

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I have a thing when it comes to my condition. Everyone has a thing. We do it when we feel anxious or out-of-control, or sometimes when we feel anxious and out-of-control. Mine is research. If I learn of something that could help me exercise more control over my condition, I will research it to death. I read academic articles, reviews, technical specs if it’s a device, and talk to the people who run it.

While some of that information might be useful, not all of it is necessary. Here are a couple of things you can do to make an informed decision about a new treatment:

  • Check with the FDA: Their processes for approval are lengthy and burdensome, but (annoying as they are) they are there for a reason. Run any new drug treatments, devices, and sometimes even diet supplements through their database and see what they have to say about the risks.
  • Check with your trusted providers: You know your disease, but they will often know a lot about these “next best things”. Discussions with them are better than whatever you can come up with on the internet because you can’t tailor someone else’s reviews to how your body works. They will tell you whether the next development is just bells and whistles and not worth the money, or whether the latest diet trend is worth a try or a total fad. They will listen and make suggestions if you want to try new avenues of treatment.
  • Listen to the voice inside your head: The truth is, we know. With a basic understanding of how the next best thing works, we know whether it will work for us. Instinct tells us. It’s hard to hear if we are feeling insecure or out-of-control, though. In those moments, we are prone to bury our inner voice under whatever we need to justify a new tool to address an old problem. Every time I have asked for a crutch to help me lose weight, the answer – from multiple doctors at different times – has always been no. Even using something as basic as an appetite suppressant could have a negative effect if used over a prolonged period of time. Each time I knew what they would say before I asked. I also knew they were right.

There’s a large industry built around all of these treatments, both legitimate and not. That industry spends a lot of money on advertising. They wouldn’t do that if it didn’t work. So, evaluate, but don’t get stuck in what the business world calls analysis paralysis. If whatever you choose doesn’t work, you can always go back to the way it was.

Paper, Paper, Everywhere (Part I -- Tracking Your Medical Bills)

Reader Kimberley Dahline of Finally Filed helps patients and caregivers keep track of their paperwork. She wrote in last week asking about how I keep track of mine (not just when I'm proud of my labs and pin them to the wall of my office cubicle.). There was too much to put in just one post, so here's the first. We'll post the second next week.


One of the most complicated, frustrating, and time-consuming aspects of having any health issue is keeping track of the costs. Even if you know your policy inside and out, it (especially drug coverage) can change arbitrarily, with no notice from the company. I found this out the hard way when a medication I had on automatic renewal suddenly wasn't there when I needed it. The pharmacy I was using never told me that it wasn't filled, and they couldn't tell me why. When i called, I was told that the insurance company was no longer allowing prescriptions to be filled by retail outlets other than theirs. I could tell they hadn't notified anyone because there was a separate option just for that issue in their automated call menu.

I was furious. It took four calls for them to "grant" me another month of my medication, and even then they set it up so I had to go to the other pharmacy within 24 hours, which I didn't have time to do. So, I had to call again. Because, you know, I have nothing better to do with my time.

Anyway, I am sure every one of you has had a similar experience. I can’t fix that completely, but I can offer suggestions that will help keep you one step ahead of the eight ball.

Step I. Know who is paying for what. Whatever vehicle helps you pay for your medical bills (insurance, Obamacare, Medicare/Medicaid), there is going to be a portion you pay and a portion your insurance pays. Read your policy before the first of the year, when it goes into effect. It will outline how much you will pay in several categories

      1. Premium – the monthly fee for your insurance plan

      2. Copay -- the fixed amount you pay for a provider visit or drug. If you have a copay, you do not have a deductible.

      3. Deductibles -- how much you pay before insurance kicks in

            a. In-network is for providers and prescriptions that the insurance company has a lower cost arrangement with. These are usually lower than out-of-network.

            b. Out-of-network is for providers and prescriptions that the insurance company has no arrangement with. These deductibles are higher, and may or may not be partially fulfilled by the in-network deductible.

      4. Coinsurance -- the percent you pay for a provider visit or drug after you meet your deductible. Coinsurance is used with deductibles. If you meet your deductible, you continue to pay a percentage of medical costs. That percentage is coinsurance.

Knowing what you will be expected to pay throughout the year is vital to tracking your costs.

Step 2. Establish a relationship with your insurance company (optional, but recommended). This step has been made optional by concierge services offered by insurance companies. However, I still like calling at the beginning of a policy (new job, change in company, etc.) and asking to speak with a senior account manager. I tell them that I expect to be calling often and ask if they would be willing to act as my point of contact so I don’t have to keep repeating my issues to whichever customer service representative picks up the phone. The service desk folks are not likely to know the details of your plan or the needs of your condition, and looking up the answers to your questions can take a long time while you are on hold. This is also a way to keep abreast of any changes that the company doesn't tell you about.

If you decide to forego this kind of relationship, make sure you record the name of the person you speak with every time you call the insurance company, as well as the time/date, and what the resolution to the issue was. In my experience, previous conversations with customer service representatives are often either recorded incorrectly or not recorded at all.

Step 3. Reconcile your paperwork. You can do this online or in hard copy, as most companies offer their explanations of benefits (EOBs) in electronic form. An EOB is an accounting of what bills the insurance company has received from what provider, on what date, and what portion insurance paid. For each drug, lab test, doctor visit, or other medical service that is submitted to the insurance, you should receive an EOB. This will help you track your deductible and how close you are to your out-of-pocket maximum. Some statements will have those numbers on the EOB.

When you receive your medical bills from your providers, take some time to check the bills against the EOBs to make sure that the numbers match. Often, they won’t. For example, I was paying a fixed cost for physical therapy appointments, which should have ended at the therapist’s office, but somehow, I have a bill for $103 from them. This is a reason for you to call your insurance representative.

NOTE: Don’t forget to submit your out-of-network bills. Sometimes providers are not in the insurance plan’s network, as set out by your employer. In those cases, you have to pay full price up front and send the bills to the insurance company. Keep track of the date you submit these bills (I fax them.), and if you don’t get reimbursement within a month, this is another reason to call the insurance representative. (This does not apply if you are still meeting your out-of-network deductible. In that case, you will get no reimbursement until the deductible is met.)

Tips and tricks:

· Choose a regular interval to review your records depending on how often you require medical services (monthly, quarterly).

· I keep a binder, which is how my father taught me. I write details of insurance company phone calls directly on the bill I am calling about. But you can keep electronic files it that's your comfort zone. Either way, make sure you store them in a secure (these do contain sensitive information), but easily accessible location. Mine are in a locked box with my business records, right next to my desk.

· If you have to call your insurance company, choose a low call volume time of day (usually early in the mornings and at the beginning of the month), or schedule a regular time with your representative.

· Keep a written list of your condition(s) and medications, so you can see where each charge falls. You can also use it for new providers instead of filling out a form for each one. You may also want to keep a short medical history to avoid having to fill out the same forms for every different provider.

Updated: June 2nd, 2017

My father read the post last week and wanted to add some of his strategies, as well. According to him, since you have a chronic condition you may already have a Major Case Manager and not even know it.

Most payers (insurance companies) identify their most complex cases and assign experienced personnel to manage them, so that a person calling for the first time might even tell the customer service representative, who is often a first-level screener, that s/he has a complex case, and ask if a 'Major Case' Manager has been assigned. 

If one has, then ask to be connected to that person's voicemail, or if they are not available, for that person's name, email and/or phone number with the extension.   

If the screener says that no Major Case Manager has been assigned, ask to speak to a supervisor. 

If there is one assigned but the screener will not or cannot (against company policy) connect you or give the contact information, ask to speak with a supervisor. 

Screeners at this level are unlikely to get belligerent, but if they do, mention that you could always call your state's Insurance Commissioner if it continues to be an issue.

We hope it never comes to that, but if it does, you will be prepared. Always remember that they're there for your convenience, not the other way around.

Broken-Field Running

Yesterday, I went to see my doctor for my quarterly check-in. Every time I go, I hold my breath until I hear three numbers: hemoglobin A1c (long term blood sugar average) for Type 1 diabetes, and creatinine (long term kidney function) and eGFR (short term kidney function) for chronic kidney disease. Those are the three that have to be in range for me to breathe easy.

This time it was like waiting for the axe to fall. I had been in tight control for years until a really bad work situation knocked me off my routine. The hours and commute were awful, with no flexibility, and I was told that it was a hostile work environment before I even started, but I didn't have a choice about taking a project. In the way of government contracting, I'd been without a project for too long, and I was in danger of being laid off (and losing my health insurance).

It was gradual, but I eventually dropped both my meal plan and exercise routine. Without this, I end up yo-yoing (blood sugar bounces out of control). This makes me tired, which makes me less active, feeds high blood sugar, you see how it goes. I’ve been struggling for over six months. That’s three rounds of blood tests. Every quarter, the monster that is my conditions grows another centimeter.

The kidney numbers have the biggest impact. A couple of years ago, my doctor actually upgraded me a stage of my kidney disease, from stage three to stage two (stage 1 is considered normal/healthy). I’d been convinced that I would need a transplant eventually, and I felt like I’d been given a reprieve from, well, something. It’s the deterioration of those numbers that scares me the most. When the doctor told me that my creatinine and eGFR were the same as last quarter, I thought I’d escaped serious consequences for another three months.

My subconscious knew better. I had been doing better, picking up more cardio and putting limits on my food intake. But, it wasn’t enough to make up for months of ignoring my regimen. I knew I was still out of control because I still felt out of control. I wasn’t surprised when my doctor told me that my A1c was just past the line that marks where you’re safe from complications. More like resigned. Maybe a little disappointed, or a lot disappointed. It had taken a lot of work to maintain my regimen. I had lost a considerable amount of progress, not just in following the regimen, but also in the execution of the regimen. I’d lost strength, energy, my appetite had grown, I’d gained weight.

I want so badly to get back to where I had been, but my motivation is dragging. It’s like having a second job. No, third, with the blog. And I’m just so tired. But without good diabetes control, I won’t be able to do everything I want to.

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I know I can’t pick up where I left off. The pain in my shins tells me I will have to work up to my previous running speed. I expect there will be starts, stops, changes of direction, like broken-field running in football. You take the best path you can find, even if it's not a straight line. So I’m going to start small. Task 1: No more skipping cardio. Even if it’s walking, I have to move before work. Oddly, that starts with Task 2: going to sleep on time. (Sleep on time = awake on time = energy to exercise.) Two tasks is enough for now.

Each chronic or autoimmune condition comes with a different capacity for control. I’m pretty lucky. I can control many aspects of my conditions. Not all, but more than most, I think. And the better we get to know our conditions, the more we can exert whatever control we do have.

So, the question(s) of the week: how well do you know your monster? As well as you would like? Well enough to know what kind of control you can exercise? And when you do falter for a short time or a long time, how do you gain your feet again? Do you have a plan?