A Dirty Game Is Still A Game: Behind the New Senate Healthcare Bill

I’m speaking of the power game, of course: politics.

There’s a lot going on right now on Capitol Hill. The House has passed a terrible bill that, if enacted, will leave a whole lot of us out in the cold, unable to pay for the care we need to survive, going back to emergency room treatment for everything, making hard choices between food and our meds. The Senate – supposed to be the more reasonable chamber – has presented a version that is even worse. Medicaid would be cut more slowly, but cuts would be deeper. It would be easier for states to get waivers to opt out of the essential health benefits. And the governors would be able to apply for waivers without the consent of their legislatures. It’s scary and stressful.

But there is a difference between government and politics. Government is that set of terrible bills, which have support from no state. Politics is what might save us. I truly believe that the majority of politicians pursue office because they think they can make their constituents’ lives better. In order to do that, they need to stay in office. Therein lies the rub.

Keep in mind that the man behind the bill, Senate Majority Leader Mitch McConnell, is a master strategist. He shrouded the bill in secrecy and kept its substance even from the panel he appointed to write it until the last minute. By keeping the text under wraps, he stunted discussion in favor of rife rumor, and kept us from a deeper understanding of the bill by disallowing public debate. He wants to adhere to a very short timeframe – eight days from unveiling to vote -- barely enough time to digest the independent analysis produced by the nonpartisan Congressional Budget Office. McConnell can only afford to lose three votes. Two to make it a 50-50 split, and one to put it past intervention by tie breaker Vice President Mike Pence. (No Democrat will cross the aisle to vote for this bill.) If people don’t understand what’s in the bill, they are less likely to lodge complaints with their Senators.  

On one side of the Republican opposition, you have the ultra conservatives. Four have publicly opposed the bill on the grounds that the it is not conservative enough: Ted Cruz of Texas, Rand Paul of Kentucky, Mike Lee of Utah, and Ron Johnson of Wisconsin. Don’t count on these folks to stand on this. Political posturing is important to shore up your base, but these are safe states, and in the end, the bill is a big step toward their ultimate goal of killing government funding for basically everything.

On the other end of the opposition, there are the Senators for whom it would not be politically expedient to vote for this bill. Dean Heller of Nevada has already said he won’t vote for the bill as it is because he knows how many of his constituents would be negatively affected. There are others. Shelley Moore Capito of West Virginia, Lisa Murkowski of Alaska, Susan Collins of Maine, Jeff Flake of Arizona, Rob Portman of Ohio, Ben Sasse of Nebraska, Andy Gardner of Colorado, and Bill Cassidy of Louisiana. Some of these states would lose too much if Medicaid was cut as deeply as the bill proposes. Some of them are facing such severe conditions in the opioid crisis that their constituents literally won’t survive without the federal funding provided by existing law. Whatever the reason, these are the Senators most open to persuasion by their constituents. That’s not to say that there won’t be certain concessions made for those specific states during negotiations, but we are not there yet, and there is little time for that on McConnell’s timeframe.

Possible not-worst-case-scenarios:

• Certain states will pick up the funding slack if the Federal government drops the ball. The ones with the budgets to will keep as many of the exchanges open as possible, especially the states that built their own, as opposed to relying on the Federal marketplace. Budgets may be limited, but a lot can be accomplished through state regulation. Regulations are only limited by the chambers who write them. And state government usually moves much faster than Federal.
• And the big one: all of this might be political posturing. McConnell knows very well how difficult this bill will be to pass. But at least if he puts it up for a vote by Friday, most Republicans can go home and say that, after seven years of talking about little else, they voted to repeal Obamacare. The Senators who opposed will be cast as the villains (“We tried – it’s their fault the bill didn’t pass.”), or more likely heroes to the majority of constituents who are against the bill. 

The bottom line is, hope for the best, but prepare for the worst. Our community is good at that, as we have all had to sit in doctors’ offices waiting on test results. Now is the time to call. Crash their switchboards (Washington, DC and state offices). Overload staff with civil protests and requests to oppose the bill. And if you don’t live in one of the states listed above, call/text/email a friend who does and ask them to call. This is the power that you have, and exercising it can help relieve that knot that seems to rest permanently in the pit of your stomach.

NOTE: The Senate has already added provisions to their bill to encourage healthy people to sign up for insurance by instituting a penalty for allowing coverage to lapse. The original bill didn’t have that. And the Congressional Budget Office has released its report, which says that 22 million fewer people will be insured (15 million from loss of Medicaid coverage). The deficit will also decrease by $321 billion over 10 years (mainly by not insuring 22 million people).

Senator Contact Pages                                 

Shelley Moore Capito (WV)                                                                                                            

Lisa Murkowski (AK)              

Susan Collins (ME)

Jeff Flake (AZ)                                         

Rob Portman (OH)                                

Ben Sasse (NE)

Cory Gardner (CO)                                               

Bill Cassidy (LA)

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 . . .

The Book of Love* Never Had A Chapter for This

*Monotones, 1958.

Note: This article was written for philly.com where it originally appeared on June 16th, 2017. 

Dating is hard enough without the extra baggage of a chronic or autoimmune condition. Since long-term relationships have always seemed beyond me, I’ve had my fair share of dating experience. It starts out the same way as everybody else. You get ready, distracted enough to keep your nervousness at bay. Checking blood sugars every few minutes to make sure the stress isn’t making them go haywire.

Wait. That’s not like everyone else? OK. Well, you just want to make sure they don’t go too high or too low while you are trying to get to know your date. Oh, don’t forget to take a look at the menu of wherever you’re going before you leave. You need to know what you can have if diet is a concern, and how much medication you will need to cover it. If you can do the estimation beforehand, you might be able to dose yourself without your date noticing. You keep your fingers crossed that you guessed right. You can always excuse yourself to take a blood sugar in the restroom, but you only want to do that once. Any more might seem a little weird. One more finger stick before you get out of the car.

Then you get there, that knot in your stomach eases, and you have a good time. Hopefully more than good.

Next round. You want to see them again. When do you tell them what you’ve got? How much do you tell them? How do you drop it casually, offhandedly? Because whenever you decide to tell – it’s such a pain to go to the restroom every time you need to check a blood sugar – it’s way too early to tell them how serious it really is, about how there will be times when your symptoms will keep you from seeing them. You might want the company, but you don’t want them to see you like that. Or that you have more doctors than any five of your colleagues put together.

You’ve gone out a few times and now you want to take them home. Using protection should be a given – the pill and condoms. Our immune systems hate us. We can’t afford to make mistakes. Ever. Does anyone really want to risk chronic or autoimmune symptoms imploding over a $1.50 condom, do you?

I also have the special challenge of being permanently attached to an insulin pump. I’ve found that guys don’t really care, but I am self-conscious about it. And where do you put it? I still don’t have a good answer for that, although attempting to find a good answer can lead to a certain kind of funny.

But the funniest part? It's all self-imposed. While I work myself up looking for the Book of Love, no guy I have ever dated blinked twice at my "big reveals." And yet, I do it every time. Just like every girl on the planet, but with that extra chapter.

Nothing Can We Call Our Own But Death

-- Richard II, Act III, scene 2

Thinking about death is hard, even for those of us who are a few steps closer than most, or maybe especially so. We recoil to consider the possibilities. Harder is discussing the death of someone close to you. Hardest is having the discussion when there is no time left to decide. Advance Directives can help alleviate this worst kind of stress. Even if you're not quite ready to consider the possibility of death, Advance Directives can be preparation for a surgical procedure as common as cataract surgery or even a "just in case" measure for people like me whose chronic and autoimmune conditions may cause temporary incapacitation. 

When I was 20, I didn’t know it, but I was taking a medication that artificially lowered my blood sugars. It resulted in the only times I ever passed out (two days in a row over the reading period my sophomore year of college). Not knowing there was a problem, I took the issue home with me for winter break. One day I had a low blood sugar and my mom wanted to administer Glucagon, which is the opposite of insulin and would bring me up to normal levels. I didn’t want it so I began to run in circles around the bottom floor of our house. My mom chased me for about 20 minutes. At some point, she must have caught up with me. In the middle of the den, she sat on my legs while my dad stabbed me in the thigh with the needle. He wasn’t gentle about it, either. She told me later that my teenage smartass disappeared for a few hours. It was the nicest I'd been in years.

The next day, the same thing happened. However, since there had been no time to refill the Glucagon prescription, they had to take me to a 24 hour urgent care office. It was raining and I went in one sock because I couldn’t find the other one. Or my shoes. When we got there, they wanted a full blood draw instead of a finger stick. I was always afraid of blood tests, and the nurse started slapping the tourniquet against her hand. It didn’t help. I said, and I quote, ”Get away from me with that thing.” And because I was over 18, they had to do exactly that.

My parents took me home and we just rode out the low. (This is when I found out how big a blood sugar range I have. The reading I took then was 19. Most people wouldn’t be conscious that low. When I’d first gone into the hospital at 14, it was 850. Normal is 80-120, or at least under 200.) It took a while. After that my mom swore never again, and she and my dad drafted a Durable Medical Power of Attorney so she could make decisions when I was not capable, as well as a Living Will because, well, it seemed like a good idea at the time. We never actually used them, but that's the Murphy's Law of peace of mind, isn't it? If you have it, you won't need it, but if you don't you will.

The Paperwork

When you hear people talking about Advance Directives, they are usually referring to a Living Will alone or a Living Will combined with a Durable Medical Power of Attorney.

The easier of the two is the Durable Medical Power of Attorney. This document designates someone to make decisions about your health in case you can't due to physical or mental incapacity. There are only a couple of steps to this one.

1.       Pick someone you trust and who knows you well. This is usually a family member, but sometimes if you are not close to your family or you think they will have trouble doing what you ask, choose a friend. (Not someone who is part of your provider network.) Also think about an alternate in case your proxy isn’t available in an emergency.

2.       Have conversations with your chosen proxy(ies). Make sure they have heard your choices from your own lips and you get a sense of whether they will be able to do as you ask even if other parties disagree.

Then there is the Living Will. This is a sensitive, grueling topic. If I let myself dwell on it, it can bring on panic attacks -- full blown, can't breathe, eyes watering panic attacks. Try dealing with that in Washington, DC traffic. Making these decisions before you need to will spare you the influence of undue stress and overwhelming emotions. A Living Will can be a complicated and nuanced document. If possible, include a trusted provider in your process to help you interpret impacts you may not understand.

There are many places you can find a standard form, but I encourage you to expand on those. Making these decisions before you need to will save you the influence of undue stress and overwhelming emotions. You will be able to consider all the options thoughtfully and deliberately. A Living Will can be a much more complicated and nuanced document.

1.       Do Not Resuscitate (DNR) Order: Do you want CPR performed if your heart stops?

2.       Ventilator: Do you want a machine to keep you breathing if you can’t on your own?

3.       Feeding Tube: Do you want intravenous (IV) nutrients if you can’t eat?

4.       Dialysis: Do you want a machine to clean and filter your blood if your kidneys can’t?

5.       Antibiotics/Antivirals: Do you want doctors to treat infections aggressively if you are at the end of your life?

6.       Palliative Care: Do you want to be treated only for pain and discomfort? (This one is usually specifically for end-of-life care. It’s what my mom wanted when her cancer could no longer be treated.)

7.       Tissue/Organ/Body Donation: Do you want to donate your tissue or organs to those in need of a transplant, and/or your body to science?

Advance Directives are legal documents, so they need be witnessed and notarized in some states. You may also want to consider a Physician Orders for Life-Sustaining Treatment (POLST) form, which is posted near a patient in the hospital. These documents should be revisited after every major life event --  marriage, kids, retirement, etc. – and annually as you get older or the status of your condition gets past a certain point.

The Health Care Decisions Act and the Uniform Rights of the Terminally Ill Act protect the decisions you lay out in your Advance Directive.

I know it's depressing. I don't want to deal with it, either. I haven't actually updated my documents since I was 20, which is bad since my proxy is no longer available. But the alternative is letting someone else decide for us. We exert little enough control over bodies that don't work properly. Do we want to cede even a little of the control we do have? I know I don't.

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.

Costs

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.

Anchors, Aweigh

My mother was my anchor when I was growing up. She was the one I leaned on for nearly all of my emotional needs, for better or worse. Don’t get me wrong. My father was also very present in my life, but thankfully could not teach me anything about being a chronic patient. He was the booster and Mom was the safety net.

Mom had severe Crohn’s disease from the age of 12, although it was only diagnosed when she was 27. During the course of her condition, she went through four surgical intestinal resections, countless hospital stays, and some horrifically burdensome (then-)experimental drug treatments, like mercaptopurine (6-MP), a cancer drug which was just starting to be used to treat Crohn’s back then. She couldn’t have both a career and kids in her condition in the 1970s, so she chose us (me and my brother). Everyone should know what it feels like to be loved that much.

It was my mother who taught me how to exist with a chronic condition, even though I didn’t do very well for the first several years. She taught me the rules of hospital stays and that, if at all possible, you should never allow the drain of your symptoms to keep you from your day-to-day life. Do what you are going to do, and deal with a flare-up or a low blood sugar if the time comes. (This from someone for whom it was necessary to know the location of every clean restroom between our hometown and where my grandparents lived, some 600 miles.)

It's been 16 years since she died, and my anchor was cut out from under me. I floundered for a while, which is dangerous. Extreme emotions can have negative effects on diabetes, driving up blood sugars. In fact, stress -- including strong negative emotions -- can exacerbate symptoms of many chronic and autoimmune conditions, especially the ones in which parts of the body are inflamed. For my mother, stress could make her gastric issues almost as bad as eating the wrong thing, or make a flare-up worse.

Eventually, I had to choose. Sink or swim. Live or die. No one else was going to take care of the diabetes for me. So, I slowly allowed people in, something I do very badly. At first, it wasn’t on purpose. My family, of course, but friends who had weathered the storm with me, others who had gone through similar losses. Eventually, I distributed the weight of my emotional needs to enough anchors of varying sizes to feel my life stabilizing again. I still add anchors sometimes, with each new friend, and each new niece or nephew. Now if one fades or dies, there are enough to catch me before I go drifting out to sea.

Even so, this time of year is difficult. It varies, depending where I am in my head every May, but this year I’m struggling. I have done everything in my power to ignore the feelings I have, which is not healthy. I knew it wasn’t right and I let it take me anyway, that frantic need not to deal with it. I strategically blocked the commercials for flower bouquets, the promotions for spa treatments. It was weird. I heard them. I read them. But somehow, I never let them connect to my own mother. My way of refusing to acknowledge the hole that still exists. But ignoring it doesn't make it go away.

What I’m trying to say is that for all of you who struggle with the loss of a mother during this time of year, or a father (Father’s Day isn’t that far off), or anyone who was an anchor in your lives, it’s ok to let it come, the sadness. It feels like lying in wet sand at the edge of the ocean. Sometimes it, like the surf, eddies gently over me, and sometimes it crashes, blinding me, filling my nose, my ears, my mouth, until the rage of it is all that exists. But the only way over it is through it. It recedes eventually, as all tides do, and then you get up and walk away, exhausted and renewed.

There's Nothing Wrong With You (That Isn't Wrong With The Rest of Us)

So, did I mention that I’ve been in counseling since I was 16?

My mother had a degree in sociology, and was a big believer in mental health treatment. She realized that, whether I was diagnosed with a psychological condition or not, sometimes it was just good to have someone there to help you figure it out.

Back then, I was in the throes of diabetes non-compliance. I was struggling with the ‘why me?’ that every chronic and autoimmune patient goes through, especially after having survived meningitis. My monster was in a growth period as I ate whatever I wanted (maybe 5,000 calories/day) and purposely didn’t take the insulin I needed to break down the food. I also faked blood sugar readings on my meter. It was a very dangerous place to be, but I had to be the one to pull myself out. There was only so much she could do.

I needed professional help. The first therapist I had was nice enough, but he believed me when I lied – I’d perfected the art – and so, he was ineffective. I only went a year in college before major complications began surfacing. The first round was retinopathy (eyes) and neuropathy (nerve damage commonly called “diabetic nerve pain” in commercials). I was scared straight, and in an effort to help keep me there, the Joslin Clinic – the world’s gold standard for diabetes -- recommended a psychiatrist close to my college. I remember that the college supplied a van to take me to and from appointments. This one was good. Very good. It was in his office that I began to discover how my own brain worked.

After college, my mother was sick, terminal actually. After living most of her life with serious Crohn’s disease, she was going to die of pancreatic cancer. Under the circumstances, I thought it would be better if I continued counseling, but I’d moved away from my college town, so I started going to the first therapist I found that had the right background. It wasn’t what I needed – the therapist and I didn’t mesh well – but I didn’t have the time or energy to go looking for a better fit.

As an aside:the relationship between a patient and their counselor or therapist is a bit trickier than the one with their physician. With your physician, personality is important, but there are not many methods. Approaches to your condition, yes, but not methods. If the method your therapist uses is not right for you, it is hard to build the trust essential to dig into your psyche.

After my mother died, I called the Joslin Clinic. They had connected me so well the last time. They didn’t let me down this time, either. I knew in the first visit that it was going to be a good partnership. My first clue was that, when she asked me why I was there, and I said because of some issues around the diabetes. She called me out. She told me that I was using the diabetes as an excuse, that I was really there because of a lot more than that. I was taken aback for a minute. Thought about it. Realized she was right. A good start.

But it was the good end that sealed it for me. She told me that if I didn’t feel the appointments were working for me, she would help me find someone who worked better for me. And that was it. It’s been 16 years, and I know myself so much better than I did then. It’s a gift – to understand the motives behind my own behavior and be mindful enough to be the seat of my own power. Well, mostly, anyway. I – we – still have work to do.

But that’s me. My issues pale in comparison to the dire straits some of my friends have struggled with. I am close to people who have depression, thoughts of suicide, post-traumatic stress disorder (PTSD), bipolar disorder, and more.

I was listening to a sermon last year in the synagogue I attend sometimes, and the rabbi spoke about the unreasonable stigma that still surrounds mental illness. There is a section of the service that allows us to speak aloud the names of the sick we are praying for, but he pointed out that people rarely speak the names of the person who survived a suicide attempt, or announce to their friends that their kid just got out of rehab.

Why not? There’s as much to celebrate in someone successfully being treated for mental illness as there is in someone surviving a heart attack. They can be just as fatal if not treated properly. There is a chance of relapse with both. Both can be hereditary, though neither is contagious. And often both are caused by an imbalance in the body.

I can only speak directly to my own experiences, so I will ask: What is the difference between a chemical imbalance causing depression and my body deciding that it is its own enemy and attacking until part of that body (my pancreas) is dead?

If there is a difference, I don’t see it. I think that people who survive mental illness should be just as proud of their hard work as I am when I hit my stride on my regimen.

But what I think isn’t going to fix the stigma attached to mental illness. Because that is the issue, isn’t it? It’s an artifact left over from a time when we understood much less about how our brains work, back when we were afraid that mental illness reflected the patient’s character or morals or that we would be tarred with the same intolerant brush if we got too close.

We know better now, or we should. It’s up to all of us, patients and not, to educate ourselves, raise awareness, and make it known that we don’t see mental illness as any different from the more “accepted” chronic conditions.  May is Mental Health Awareness month, so it’s a perfect time to join the conversation.

Start here.

The Energy for Outrage

I don’t often have the energy for outrage. I balance a slate of autoimmune conditions, a full-time job, this blog, and an active personal life. It usually takes more than the energy I have on any given day. There’s never a lot left over.

But I went to a conference last week, Health Datapalooza, and one story reached down and dredged all of my outrage reserves.

There had been considerable discussion around data transparency, especially regarding patient records. Patient records are the paper or electronic notes taken by each provider you see: doctors or hospitals, nurse practitioners, physicians’ assistants, nutritionists, physical therapists, psychologists, anyone in your medical life. There are test results, medication lists, condition status notes taken during the appointment, instructions to the patient, and other highly personal information.

These records can be vital to tracking the patterns of your condition, and may be necessary foundation if you begin a course of treatment with another provider or seek a second opinion. With access, you can also make sure that the official records of your condition are accurate. I didn’t realize that, until recently, those records were not considered property of the patient, but rather the provider.

I have not been in a situation that required my medical records. When I was a kid, I had a few doctors who were less than competent, but the medical bench where I lived wasn't deep enough to offer the expertise for a second opinion. Now, I am so particular about my providers, I haven't needed one. Besides, my doctors now either send me their notes after each visit, or give me access through a patient portal. The closest I’ve come to wanting my records is a sort of nostalgic desire to see the records from when I was in a wheelchair. (Back then, I wanted no evidence that it had ever happened.). But most hospitals and practices do not hang on to medical records for 30+ years.

I had heard some discussion about records transparency – liberating your data -- throughout the conference, and in a Friday morning breakout session about integrating patient voices in data, the problem was brought down to a personal level. During the Q & A session at the end, a woman talked about her daughter’s rare condition. In the universe of rare diseases, it is even rarer to find local physicians who have the necessary experience to diagnose, let alone properly treat the patient’s condition. Often, patients bounce from doctor to doctor to doctor, looking for answers and relief. Each doctor has a separate set of notes.

The woman described the situation of one family with a similarly diagnosed child. They were seeking their child’s complete medical records from a hospital so they could provide them to another specialist. The hospital said they would be happy to provide the records, for about $1,000. The fee was for administrative costs, they said. How many people dealing with chronic conditions do you know that have a spare grand for something like that? Probably no one, and the lack of access or a delay could mean the difference between life and death. At the very least, it could affect the patient’s (and the family’s) quality of life.

I was outraged. I understand that there is a cost for the staff to make copies, but where is the sympathy, the understanding of possible consequences to the denial of access? These people are medical professionals. Was there no way to send the records immediately, and work out the details afterward? The sad truth is that if a doctor’s office were to make the request, there would be no issue. There is an understanding of reciprocity in many cases. But because it was the patient making the request, it was a ”service.”

The group ended up receiving a grant through the Patient-Centered Outcomes Research Institute (PCORI) to hire an investigator. The investigator, who had the time to harass the doctors’ offices for the patient records, was successful.

Luckily, there is a push to change this situation. The history of the issue is long. One of the most pivotal events came in 1996, when the Health Insurance Portability and Accountability Act (HIPAA) gave us the right to see and receive copies of our medical records. We can review them with our doctors, check for accuracy, and have more in-depth discussions about where our conditions stand and where to go from there. Since then, slow but steady progress has been made toward open access. According to OpenNotes, an organization working toward unlimited patient access to their records, 12 million patients across 20 hospital systems can now view their medical visit records. This number continues to grow daily.

If you would like to find out how to access your own records, please visit some of the resources below:

Blue Button: https://www.healthit.gov/patients-families/faqs/how-can-i-access-my-health-informationmedical-record

OpenNotes: https://www.opennotes.org/notes-you/