The Old Ball and Chain

No, I don't mean a spouse or significant other. Technically you can do without those for a few hours. I hope. But there are things we schlep with us all the time, that would literally make us sick if we went without them.

Recently, we’ve been talking about the hassles of big trips for people with chronic and autoimmune conditions, but what about every day? I absolutely hate feeling encumbered. Since high school, when I shamelessly copied my best friend, I go as many places as possible with just my phone/wallet shoved into the back pocket of my jeans. That’s hard to do most days.

I was talking to another autoimmune patient last week about having to drag a lot of crap with us everywhere we go. When I travel out of town, I usually take a backpack. It doesn’t fit much: laptop, phone (and associated cords), a couple small snacks, a sweatshirt, and . . . a giant drug carrier. Not the one with the little squares for each day, but something that holds the big bottles. I tried the other thing, but got stranded beyond my supplies a few times, so not anymore. And it’s not just when you travel. It’s every day.

The daily bare minimum for me is phone and blood sugar machine, just for trips to the grocery store or out to dinner. If I am heading out for a while, water, juice, inhaler, extra strips for the machine. An entire day hanging out in downtown DC or at the beach, insulin and needles for an emergency. Oh, and if it’s hot, a cold pack so the insulin doesn’t go bad. Maybe some paper towels so the sweating cold pack doesn’t make everything else soggy.

I worked hard to move away from a backpack after I finished graduate school. My sister-in-law even conned me into buying a “girl bag,” a.k.a. purse. I use it very occasionally. And a clutch for a formal event? Never. They are not big enough for my machine. And what about the guys, who often don’t have any kind of bag, or people who have to drag oxygen tanks behind them?

I can’t do anything without that machine. I’m one of those strange diabetics who has never been able to establish a steady biorhythmic pattern, so my insulin dosages are a weird combination of instinct and guessing. Being caught out without one has caused trouble often enough that I have five of them. One in my car, one at the two places I travel most often, one at home on the days I forget it at work, and the one I take everywhere.

Then there is the issue of insulin. I’ve miscalculated and run out a couple of times at work, which results in nothing good. I am reluctant to take it to work because I might forget to cycle them out once I open them, and they run the risk of going bad if not used in time. I can’t afford to not use even part of a vial of insulin.

Gives new meaning to the phrase “ball and chain”, doesn’t it? What’s yours? What is the one (or two or five) thing that you can absolutely not leave the house without? You carry an extra prescription in case you run out far from home and would cut a long weekend short if you forgot it. So what's your ball and chain? I would love to hear your experiences in the comments section.

Adventures in Overseas Travel: Lesson One

Having spent a recent night on Concourse C at O'Hare airport in Chicago, I am reminded of the trials of my last international trip. That's not to say the trip wasn't amazing, but the logistics of it all left much to be desired, especially as it wouldn't have been nearly as bad if I had been healthy. And since 'tis the season for overseas travel, here is a series that will hopefully inspire you not to do what I did.

Oh, for the love of tape -- always overpack your medical supplies

The first time I went to the Caribbean, I was totally unprepared. The functionality of my medical equipment depends in large part on whether it actually sticks to my body. The problem with the Caribbean is that the humidity does its best to make sure that doesn’t happen. The breeze feels great, but doesn't really help with that. I had packed plenty of infusion sets (where an insulin pump sticks to you) for the week I was going to be there. That is, for normal usage. About an hour after I arrived, I realized that it might not be enough. By about half.

I started looking for my usual options. Waterproof sports tape (to replace the adhesive on the set) was first on my list. Surely everywhere had some equivalent of CVS. No. The drug stores on the island were tiny, like the old time mom and pop places that existed mainly to fill prescriptions, as opposed to selling convenience store supplies. They were also mostly closed, as it was Sunday. Even the ones that were open were closed for a few hours over the lunch hour. If they even had tape.

The second option was calling the medical supply company to see if they could deliver some extra supplies. But there was no outlet to do that on this island. It would take three days to deliver to San Juan, Puerto Rico, and then they would have to fly it over. I was only staying for a week, so scratch that.

There was no option three. Well, except $1,000 ticket home. I didn't have $1,000.

I am generally a pretty laid back person, even a fairly relaxed traveler. I have always been blessed with the ability to fall asleep on takeoff and wake up upon landing. That is, except when I run out of something medical. As soon as I realize it, I immediately feel backed into a corner. This time was no different. As the situation progressed, I began to feel more and more panicky. What would happen if I ran out of supplies halfway through? I wasn’t sure I had enough needles to spend a week on emergency measures.

In the end we returned to option one. We drove around and around the island until we found an open drug store, where the pharmacist had to help us figure out what was waterproof. Not how I would have preferred to spend my first hours ever on a tropical island.

The second visit to this island I brought plenty of tape and needles. I thought about what I had before and doubled it. Then doubled it again. Same with the infusion sets. Good thing, too, since I would need them all.

To be continued . . .

First Down and 9*

*For those of you unfamiliar with American football, when a team gets the ball, they have four chances (downs) to move forward 10 yards. I have gained one yard in my first chance. Still have nine to go.

A few weeks ago, I wrote about how I’ve been struggling to get back to the routine I want, the one that, if I follow it, will lead to optimal health. (It’s only been a year since I was at the top of my game.) In the six weeks since that article, I have sporadically been following the plan I laid out for myself --simply re-starting my exercise routine and going to sleep on time -- but only sporadically. Definitely running backward a bit. My goals now are basically the same, but I have arranged things to give myself every advantage, as opposed to struggling against logistics that sometimes work against me.

First, I asked for flex time from my employer. This falls under the category of “reasonable accommodation,” something that we are legally entitled to under the Americans with Disabilities Act. Because of my bouncing blood sugars, I was having real trouble exercising before work. I was either too high or too low or too tired (because of the too high/low), and would have to treat myself before I could run. That took time I didn’t have. So, I asked to start coming in to work at 6:00 or 6:30 since I was up anyway, and leaving at 2:30. This allows the commute time to be my treatment time, and I would be ready to get going as soon as I got home. I had to get it in sometime. Lack of exercise is one of two primary reasons my blood sugars are bouncing. It took a while due to the red tape provided by my company’s disabilities office, but my request was granted. (NOTE: Disabilities offices are there for your protection and your company’s. They are your official advocate in the workplace. Just because I don’t have the patience to deal with it doesn’t mean they don’t serve a useful purpose.)

Second, I elaborated on and expanded my goals. Slightly. Sleep on time is coming easily as exercise is wearing me out. But there are a few components to exercise. My new weekly tracker has four things on it: number of days my blood sugar stays under 200, number of days I do cardio, number of days I do weights, and number of days I hit my meal plan target. I am ignoring the latter for right now and the first one will come easily with the cardio and weights, so it’s only a little tiny bit more than before, mainly more frequent blood sugar monitoring.

Third, I enlisted friends to help. I know we are “supposed” to do these things for ourselves. To find the motivation within. The theory is that if we depend on external motivation, we will falter when it goes away. Maybe so. But there is a reason workout buddies increase the amount of exercise you do (there’s a study). Mine are not actually workout buddies per se, but they are checking in and I know I’m in trouble if there aren’t enough tick marks next to a goal.

But the hardest part? As my body adjusts, I will gain weight. It will take about two or three weeks for it to figure out that I'm not actually trying to starve it. If I want this plan to succeed, I have to make myself sit there and take it. Which I am, so far. 

All of this has led me to my first baby streak – three days of both cardio and weights/resistance training. I can already tell it’s going to exhaust me until I adjust, probably a couple of weeks, about the time I stop gaining weight. It’s a different exhaustion, though. Before it was sick exhaustion. Like when you have the flu. You’re kind of stewing in it. This is clean exhaustion that will send you to bed on time because you are actually tired and falling asleep.

Along those same lines, I confess I am proud of my baby streak, made up of just three baby steps, and that goes a long way. Right now, it’s solid. It feels like it will stick. I am a master of self-sabotage and an all-or-nothing kind of person, which is generally not healthy, but if it works in my favor here, I will take it. As I’ve said before, without a return to this plan, I will have nothing. You can walk around the world in baby steps, so yes, I will definitely take it.

Tip: Make it simple.

·        My tracker is a piece of paper tacked to a cork board. I’m keeping track with tick marks. You know, four little lines then one diagonally across for the fifth. Easy.

·        I also switched from a Fitbit to a Polar 10. Fitbit is great, but it allows my neuroses to run away with me – obsessing over every number in every category without focusing on the overall picture. The Polar is just a heart rate monitor that will keep track of calories burned during a workout. That’s all I really need to estimate what my intake should be.

Simple means something to me that it might not mean for you, so experiment to see what works for you while still giving you all the information you need/want.

Paper, Paper, Everywhere (Part II -- Care Coordination)

Reader Kimberley Dahline of Finally Filed helps patients and caregivers keep track of their paperwork. She wrote in two weeks ago 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.). Last week, we covered billing paperwork. This week we are talking about medical records.

Care Coordination

This is for when you have multiple providers who may not have anything to do with each other, but you need someone besides yourself who knows the whole story. Sadly, this one is on us, too.

Step 1. Coordinate visits for your convenience. I have a dozen providers, many of whom require different sets of labs. In order not to get stuck like a pincushion more than necessary, I coordinate them. I schedule all the appointments within a week or so of each other, and I ask for future lab orders so I can get them all done at once and so that all of my doctors will be able to see all the most recent results. I keep the orders in my car in an effort not to lose them over the three to six months between visits, but the front desk staff has gotten used to me calling to have them sent again.

Step 2. Get a General Practitioner (GP)/Internist. I shamelessly use mine as the ringleader in my circus. Everyone with multiple providers should have a ringleader – someone who has a bird’s eye view of all of your records. For him to be effective, I have to sign a release form telling the lab company and other providers’ offices to forward all results and notes to him.

I know what you are thinking. Another doctor? Really?

Once I didn’t think I needed a GP, either. But my endocrinologist (diabetes doctor) was tired of treating every sniffle and wound, so he sent me to his. I waited so long that the recommended GP retired, so I made an appointment with his replacement, who happened to be so good that I will travel across two states and the District of Columbia for my annual physical. Once, when I had an incident at work, I called my GP, who was able to look at all of my records and see that I had forgotten to tell my nephrologist (kidney doctor) that I’d had asthma when I was a child. It had been several years since I had been treated for it and I didn’t realize that it was still relevant. The nephrologist had prescribed beta blockers for hypertension, which had caused severe bronchoconstriction (constriction of the airways in my lungs) as the dose increased. My GP was able to look at the entire chart and tell me to stop taking the beta blockers immediately. The emergency room I’d gone to diagnosed it as a “cardiac incident” and let me go without changing my medication.

Step 3. Proactive paperwork. Doctors' offices and labs will not offer you a Health Insurance Portability and Accountability Act (HIPAA)-compliant records release form. (Learn more about the importance of HIPAA here). They usually have one, but you have to ask for it. If you do it this way, it's an annual process, like when you have to show proof of insurance every year. 

Sometimes it’s just easier to fill out a standard online form on your own and carry it with you to new providers. You can find one here. On this form, check field 2, option 2 to designate an unlimited period of records release. You can add to, delete, or reword any section to suit your needs, just be sure to initial any changes you make. Also be sure to keep copies for your records in order to get what you want while legally protecting all parties.

Tips and Tricks

There aren’t many tips and tricks for this one. More like one tip and one trick.

· Make friends with the front office staff. I can’t tell you how many times, and in how many offices, these folks have made the difference on a short timeline or even getting my request addressed at all. This includes the offices where I have a direct line to the doctor through access to email, cell phone, and/or text.

· If you get pushback from your provider, be firm. Tell them that you need someone who can see the whole picture, including those things that may not be related to your chronic condition. As mentioned above, drug interactions area good example of that kind of situation. And if there is still pushback, tell your provider that you are perfectly willing to use them as the repository for ALL of your information, and to see them as you would a GP -- for every sniffle, cough, and boo boo. This is usually a fairly good deterrent.

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.

Ten EHBs and A Provision

There's a lot at stake for us as our elected officials try to reform healthcare. We should all understand what it means when the newspapers say they are removing this or that requirement from a proposed bill, and since it appears that Congress will continue its efforts toward healthcare reform, I wanted to discuss some of the things that will make or break their efforts, things that will affect you, no matter what condition(s) you have, or even if you have no condition at all. (Read about the first effort to reform Obamacare here.)

It’s hard to believe that it’s only been seven years since Obamacare, or the Affordable Care Act, was passed. Before that, insurance looked very different than it does today. The main reason for that is that Obamacare mandated that certain things be covered in every plan. One of the things on the table is the removal of all the Essential Health Benefits (EHBs) in an effort to control costs.

This would control costs by severely reducing the number of people covered by insurance. Those people would not see a doctor as often, potentially losing control of their conditions, and would end up going to the more expensive emergency room as a result. (Emergency rooms can’t legally turn patients away, regardless of their ability to pay, and unpaid hospital bills default to the taxpayer.)

How many EHBs have you used over the course of your condition? (I will mark all the ones I’ve used.)

  1. Outpatient care – all your doctor visits where you don’t have to stay overnight.
  2. Emergency room visits
  3. Hospital treatment for inpatient care
  4. Prenatal and postnatal care -- maternity care preceding and after birth of baby. This is an important one because in the bad old days, pregnancy wasn’t covered at all. Since the majority of insurance policies cover ‘accidents and illness,’ and pregnancy is neither accident nor illness, it didn't qualify. Pre-natal wellness visits, blood tests, recovery, and more were paid for out of pocket. Not to mention that the baby sometimes wasn’t covered for the first 10 days, so that if there was something wrong, it would be classified as a pre-existing condition, which is also not covered.
  5. Mental health and substance abuse services, drug and alcohol rehab. This is the rule that helps people with opioid addiction and veterans with Post Traumatic Stress Disorder.
  6. Prescription drugs – no explanation necessary.
  7. Rehab and rehabilitation services and devices -- to aid in recovery in case of injury, disability or chronic condition, including physical and occupational therapy, speech-language pathology, psychiatric rehabilitation, and more.
  8. Lab tests
  9. Preventive services, including counseling, screenings, and vaccinations and care for managing chronic disease – annual physicals, Pap tests, mammograms, colonoscopies, etc.
  10. Pediatric services, including dental and vision for children.

That's nine out of 10 for me.

Now the provision that pulls it all together, because even if you have access to all of the EHBs, if they're too expensive, access doesn't matter. The 'community rating' provision of Obamacare says that people with pre-existing conditions don't pay more for coverage than their healthier peers. It says that no one in a set geographical area (community) can be charged more than anyone else in that area for the same amount of healthcare coverage, regardless of circumstances like gender, occupation, industry, weight, claims history, or most important to us, health status (pre-existing conditions). Right now, the only factors an insurance company is allowed to consider are family size, age, geographic location, and tobacco use.

In a relatively short time, these regulations have become important to us. They allow us a higher quality of life. How much more would you have to pay for your condition if the EHBs and community rating provision were eliminated? If you feel strongly about keeping the above provisions, tell the people in charge of the reform effort, and not just on Capitol Hill. Rumor has it, some states are moving forward without Washington.

(Here is a link to Project Vote Smart, which will tell you who works for you, from the president right down to local judges.)

Conversations with a Retired Healthcare Executive (Who Just Happens to be My Father)

Chapter 2: How do they figure out what plans to offer and how much they cost?  

Health insurance plays an outsized role in our lives. But does anyone really know how it works? Or, for that matter, what it really says? In this series, I will be talking to my dad, a retired healthcare executive, about a variety of topics to get some clarity on private (employer-supplied) health insurance.

Jeremy Sachs spent 30 years working for a Fortune 500 insurance company. During much of that time, as House Counsel for the Employee Benefits Division, he advised corporate managers of the Division on a wide range of legal issues relating to the Company's group health insurance policies, including during the times when the Health Insurance Portability and Accountability Act (HIPAA) and the Americans with Disabilities Act (ADA) were passed and instituted.

This series does not apply to Medicare, Medicaid, Obamacare (The Affordable Care Act, or ACA), or individual health insurance, unless otherwise specified.

The Players

Insurance Company

  • Sales Rep/Marketer—liaison between the insurance Company and your employer
  • Underwriters – determine the risks involved for each policy
  • Actuaries – mathematicians who determine the cost of a policy

Your Employer

The Process

Negotiations for a new health insurance policy or an update to an existing policy are long and complicated

They start with your employer. The insurance company’s sales rep sits down with your employer’s Benefits Manager and negotiates what your employer wants included in the insurance policy: what level of risk the insurance company is willing to take; what the deductibles will be; the method will be for computing a provider’s “reasonable and customary (R&C) charges”; and, what percentage of those R&C charges the company wants to cover. (That’s when the policy says they will cover 80% of reasonable and customary charges after the deductible or 70% of psychological therapy visits.)

Once the insurance company knows what the employer wants in the policy, the representative collects certain types of information about your employer, including:

  • Type of work (office/manufacturing/labor/academic/government, etc.)
  • Number of employees
  • Type of employees and percentages (skilled, management, executive, etc.)
  • Employee retention (In the insurance industry, employees who stay at their jobs longer may suggest a more stable lifestyle – that is, employees who keep a job for only a short time, and then move on are considered higher risk.)
  • Claims history from previous years. (A Group Policy issued to a brand-new company may cost more, since the Insurer will have to guess how high the first yearly payout of claims will be.
  • Company financial stability

And about you. Since it’s illegal to ask specific employee health questions, the insurance company will ask questions about the members of the group:

  • Gender
  • Age
  • Race/Ethnicity
  • Percentage who have dependents.*
  • Other general demographic questions

* Dependents are important because their – both children and spouses – costs are calculated at a higher rate than that for the primary insured. This is because since employees come to work on a regular basis, they are assumed to be generally healthy. But no such assumption can be made for dependents. Spouses and kids, as a group, tend to have more or higher claims than employees. (The kids I know definitely get sick or injured more often than the adults, but I am not sure why the spouses do. Dad didn’t know, either.)

These and other factors are all thrown into equations when the insurance company calculates the cost of the individual benefits offered in the policy, and the premium for the policy overall.

Once the sales rep has collected all the information from the employer, they send it to the underwriters. Underwriters determine how risky it will be for the Insurer to cover the group.  Keeling over from a heart attack is more likely in a sedentary cube farm than on an active factory floor. But losing a finger is more likely on a factory floor than in a cube farm. Unless you’re using the copier wrong.

Or, if the Company is located, say, in Florida, the group may have a more employees with respiratory conditions than in, say, in the Colorado Rockies, where the air tends to be purer. 

The underwriters start with “standard rates”. They take the gathered information and use complicated algorithms to determine how much risk of a claim is likely for each type of coverage that the employer wants in the policy. They then assign higher degrees of risk for any elements of the group that don’t fit the algorithm.  Then they send their calculations to the actuaries.

The Actuaries are the mathematicians who figure out how much to charge. Actuarial tables are always being updated. As treatments and knowledge around a condition improve, probabilities of severe consequences are adjusted and sometimes costs go down. But there are also new conditions that can’t be treated that have to be factored in. They create their own algorithms around the Law of Probabilities -- that you will need X treatment, based on current national or local (industry) claim experience. They create rates to be charged to the group based on a series of calculations of the probability that employees and dependents, as a group, may at some point need all or most of the insurance for the conditions covered by the policy. Then they figure out the rates for your employer’s Group Policy. 

With the rates in hand, the sales rep for the Insurer finally presents the policy package to your Benefits Manager. The package includes rates, definitions, and descriptions of what will be covered. These are the sections that specifically explain the insurer’s LIMITATIONS on what’s covered and lists of the risks that it will not cover at all (EXCLUSIONS), as well as a whole host of administrative requirements and other explanatory material.          

A squeaky wheel can impact your insurance policy.

So, after two pages, why does all this matter? Because you’re not as powerless as you think.

There is a long negotiation involved once the initial figures are given. Both sides are worried about competition. Insurance companies don’t want to lose clients to another insurance company because of lower prices, and your company doesn’t want to lose good employees to a competitor with better benefits. 

And that doesn’t even touch on unionized industries. Unions will often negotiate on the cost to employee and breadth of coverage. Like better maternity coverage for a younger employee pool or better rehab coverage for an older employee pool.

So, if you have an opinion, tell your employer. Start with the Benefits Coordinator or someone in Human Resources for companies that aren’t big enough to have a Benefits Coordinator. We had issues a few years ago with the pharmacy provider my company was using, and after a few years, there were enough complaints that my employer switched providers. [CS1] 

It’s not a guarantee, but it never hurts to speak up.


Every policy has an incurred but not reported (IBNR) reserve for health insurance claims, commonly referred to as a ”tail.” The tail covers late claims submissions. Sometimes I just don’t have the time and energy to submit claims, especially the out of network ones, so I wait until I do. The tail, based on the size of the policy, covers those late filings. The length of this grace period, called the IBNR runoff, varies with the policy, but is often six to twelve months. So don’t give up on reimbursement if you’re a little late. Know your IBNR runoff period, and give yourself a break.

Conversations with a Retired Healthcare Executive (Who Just Happens to be My Father)

Health insurance plays an outsized role in our lives. But does anyone really know how it works? Or, for that matter, what it really says? In this series, I will be talking to my dad, a retired healthcare executive, about a variety of topics to get some clarity on private (employer-supplied) health insurance.

Jeremy Sachs spent 30 years working for a Fortune 500 insurance company. During much of that time, as House Counsel for the Employee Benefits Division, he advised corporate managers of the Division on a wide range of legal issues relating to the Company's group health insurance policies, including during the times when the Health Insurance Portability and Accountability Act (HIPAA) and the Americans with Disabilities Act (ADA) were passed and instituted.

This series does not apply to Medicare, Medicaid, Obamacare (The Affordable Care Act, or ACA), or individual health insurance, unless otherwise specified.

Chapter 1: What is health insurance?

All insurance is about risk. A company that sells homeowner's insurance charges premiums to accept the risk that a tree might fall on your house. A company that offers car insurance accepts the risk that you might get into a car accident. Those insurance policies are contracts between you and an insurance company; group health insurance, the kind that is offered by your employer, is a contract between your employer and a private insurance company. Most commonly, you and your employer share the cost of a monthly insurance premium. In this case, the insurance company accepts the risk that you might need the type of medical treatment specified in the policy, treatment that you may not be able to afford otherwise.

But keep in mind that health insurance companies are also businesses, like all for-profit businesses: responsible to their shareholders. It’s not easy to wrap your mind around the fact that something so personal to you is business as usual to them, but understanding that is vital to understanding how insurance works.

A Brief History

Insurance used to be a lot less complicated before the proliferation of technology and advanced treatment methods, like platinum-based cancer treatments. It was also a lot less expensive before those advances (you know, platinum). 

Now we live in an age where, in many cases, our quality of life has improved exponentially. The downside is that chronic and autoimmune conditions have become a competitive market. We will always fuel that market, looking for the next drug or procedure or device that will alleviate symptoms, reduce pain, or extend lives that otherwise might be shorter than average. Insurance often is the only way for people who need the latest treatments to actually be able to afford them.

So, where do you fit?

You’re the risk. Sort of. I mean, is it really a risk if you already know the outcome? You will definitely need medical services. Health insurance covers the “care and treatment” of “accident” or “illness.” The tricky part is defining the “accidents” and “illnesses” that are covered by the plan, and what is “necessary” to treat them. Before managed care options like HMOs and PPOs, the patient’s physician decided what was necessary. Now, it’s up to the insurance company and a committee of outside medical professionals.

When the insurance policy’s definitions of “accidents” and “illnesses” are uncertain, a committee inside the insurance company looks at similar cases and the circumstances around your case, and makes a judgment call that will (hopefully) serve both the company’s interests and your own, as the patient.

When the doctor and the insurance company disagree on what’s “necessary”, they negotiate payment. This is labor-intensive, and a common reason that some doctors’ offices, especially private practices, do not take insurance. In those cases, reimbursement from the insurance company goes through you.

In both instances, you can appeal the decisions made by the insurance company, but it’s an uphill battle. For example, in the “necessary” instance, I used to take an expensive injection for anemia ($1,200/month). My symptoms were mild, but without it, there was always an underlying tiredness every day, even when I got enough sleep. The insurance company decided to set their standards against the medical community’s recommendations and make it harder to qualify for the medication.

I was not the only one who fell into the mild category. Several people with my conditions were also affected. The doctors tried to negotiate coverage with the insurance company, but it didn’t work.

It was really hard to accept that someone I’d never met had switched out the experts who knew my situation for their experts, who had no idea how it felt to drag through every day. For all intents and purposes, strangers had made a judgment call that would restrict oxygen flow to my body, including to my brain. (That’s what anemia is: lack of iron in the bloodstream, and iron delivers oxygen.) It was so personal. My day-to-day functionality, and the only option I had, was to pay the $1,200/month. The only way I could get there was to stop paying rent.

Understand that, when you enroll in an insurance plan, you become what is called a "third-party beneficiary." When your plan goes into effect, you become entitled to certain rights and coverages that your employer negotiated to be included in the policy. However, what they don’t tell you is this: no health insurance company accepts every single possible health risk. The company’s professionals -- actuaries (mathematicians) and underwriters (risk evaluators) -- decide how much risk the company can assume and still earn a profit. Because of that, every insurance policy contains specific sections that detail limitations and exclusions on benefits payable under the plan. Sometimes that means specific things like my anemia drug.

And when you are evaluating which policy is right for you, remember that these limitations and exclusions are not just found in the obvious sections. There are others listed throughout the policy. Make sure you’ve seen all of them before signing up for health insurance.

So, next time you are considering enrolling in private group health insurance, start your evaluation with the definitions section to help you understand what your plan does cover. Look for the limitations and exclusions section to see what your plan doesn’t cover. This will help you set expectations as to what doctors and treatments you will be able to afford under the plan for the coming year.

If you still have questions about the policy, reach out to your employer’s benefits coordinator or Human Resources department for clarification.

And don’t be afraid to ask questions about your specific condition and circumstances. It sucks to buy insurance and then find out after the fact that the cutting-edge treatment your doctor wants for you is out of financial reach.

So, Why Yet Another Blog? And Why This Blog?

Because if you have an autoimmune or chronic condition, the likelihood is that I have been where you are. 

When you were diagnosed, were you scared? Bewildered? Confused? Angry? Numb? Did you feel helpless or stupid? I was too young to understand completely, but I remember clearly how angry I was. Very angry. Furious. I didn't know then that it was a defense to cover helplessness. It was so big. DIABETES (it always seemed weird that it's never capitalized in print). I didn't know what it was, how it worked, or what it meant for the rest of my life. Everything was changing. I thought, what do I do now?

There was other stuff, too -- subconscious stuff. I didn't realize it until recently, but I also felt a deep sense of betrayal. It makes sense. What's worse than when you betray yourself? And what else can you call it when your body turns on you and literally attacks itself? You are supposed to be able to trust yourself more than anyone else on the planet, right? But you can't. Nothing works like it's supposed to anymore. 

My situation was made even worse by the fact that I thought I had already paid my medical "dues." You know those commercials for the meningitis vaccine? I had that. Eight years before my diabetes diagnosis, I got B strep meningitis. I was the only kid who survived it that year, and even then I ended up in a wheelchair for 18 months. It was only through my family's support and sacrifices that I won that vicious, ugly war.

It was a real slap in the face to realize that wasn’t the end of it, that instead of winning a war, it had just been the opening salvo, a mere battle in a conflict that would last the length of my life.

Decades later, it makes me sad sometimes to think about who I might have been if I had been healthy. Then I think about how far I've come. Yes, my conditions (I have several now) are hard. Inconvenient. Time-consuming. But I like the life I have and the person I have become. I am proud of the strength that came from the crucible of my medical issues. I am grateful for the relationships I have, every one of which is worthwhile and valuable (you tend not to waste time on superficiality when your time and energy are limited). And maybe, just maybe, I have learned enough to trust myself again.

So, why this blog? I want to use my experience and contacts to arm you with the tools you will need to navigate both your condition and our ridiculously complicated healthcare system. I figure that if I can help just one person avoid my mistakes or come through the low points better than I did, I can consider this a successful venture.

The Challenges of an Invisible Condition

Most of the people reading this blog have conditions that are invisible. If I had a nickel every time I heard, “you don’t look sick,” I wouldn’t be driving a teenage Honda. I am always pleased to hear it, as it is a testimony to my good control, at least most of the time.

But, no matter how “normal” I look to others, the fact is that I have a lot more mandatory work to do to live every day than the average human being. For example, I can’t just skip a meal when I’m not hungry. I have to either alter my insulin or make adjustments so my body doesn’t get mad at me (yes, sometimes I think of my physical self as a separate entity with its own agenda, especially when I have blood drawn and my veins run away, like they’re playing hide and seek). This might not matter most days, but when it does, it REALLY does.

How do you explain to a boss that no, you don’t have a fever, and yes, you are probably functional enough to work from home, but you can’t come into work today because you have to deal with the side effects of your condition? I do not like to be around people if I just can’t get my blood sugar down. It’s a very vulnerable place to be. I feel like crap and I am scared because I can’t figure out what’s going on. Also, I like the people I work with, but not enough to let them into that particular corner of my life. If nothing else, it would totally undermine their view of me as a competent co-worker.

Or how do you handle the looks you get if you park in a handicapped parking space, but you don’t look handicapped? The world has a lot of righteous judgment for people they’ve never met.

Then there are the times, especially if you are seeing a provider who doesn’t know you well, when you feel like you have to justify the reason for your visit. I remember going to see my GP—who does know me well—for a sore throat that had lasted upwards of three weeks before I went to see him. I’d been checking my temperature and it didn’t seem like I had much of one, especially since I tend to run about a point lower than average, so 98.6 is actually high, more like 99.6. When he checked my throat, I told him I wished I’d come earlier in the day because it didn’t hurt in the afternoons as much as it did in the mornings, and I assumed the inflammation would be more visible. He told me I didn’t have to justify myself, that he  believed that I had what I said I did. I think I almost cried, which is not something I do publicly. Ever.

I have always coped by leading with my chin—thick skin, don’t care what others think, defensiveness as an end in itself. This is not a position I would recommend. It can be very isolating. To give you an idea, the people who are closest to me aren’t there because I invited them in; they are there because they thought I was worth the effort of pushing past that rough exterior. They have stuck with me through a lot, and I will never be able to express how grateful I am for their friendship.

I think... I think that the healthiest way to cope is to accept that everyone has their own version of normal. You can share as much or as little as you are comfortable with. But without your health, you have nothing. Don’t push yourself so hard that it affects your condition. Accept help from the people who love you. Teach them how. They are your safety net. And know that there are going to be days when you have to put yourself first. This is not something to be ashamed of, it just is.

How did Henry David Thoreau put it? “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms...”[1]

 It’s hard to hear, but our lives are limited. Do what you need to do to get as much as you can out of what you have.