It's All About The Benjamin's (revisited)

There have been a LOT of discussions about medical expenses and questions about finances lately from some of my newer readers. I wrote a post back in May of 2012 in regards to finances re: chronic illness. So much has happened since then, so I thought I would write a more coherent explanation that reflects the current situation.

LET ME BE CLEAR - this is not a plea for pity or financial help. But, I feel strongly that many fear or oppose universal health care because they have spent most of their adult life in the secure confines of group insurance, local physicians, and short-term health problems. It's not a political thing. But I find the financial woes of the chronically ill are either horribly misunderstood or a complete mystery. That's not fair to the patient, their families, and those who look on helplessly. I hope to shed a bit of light on the link between illness and money (or lack thereof).

It's ironic that money was not too important to us in the early years of marriage. Now it looms over every decision we make. It's not an uncommon story. When I was diagnosed, we owned a successful service business and I was making money playing music for the first time. We had a comfortable lifestyle, a nice rent house, and expendable income. However, we were only six years into our marriage. We were on the brink of building savings, buying a house, investing a little.

When I was diagnosed, everything changed. Our potential rent-to-own situation collapsed, we had to sell the business to break even - meaning we both lost our jobs. Because we worked for ourselves, we did not have group insurance. We had a single-user policy that covered clinic visits and hospitalizations, but no maternity or prescriptions. Christie was excluded from any substantial coverage due to pre-existing conditions. This doesn't seem like a bad deal until you realize that my diagnosis and testing, though extensive required both co-pays and deductibles, and a lot of them. My medications exceeded $800 per month. This was during a period where we had absolutely zero income. It took Christie some time to find a job, but by then, we were behind on car payments, credit card payments, taxes, and utility bills. We moved in with her parents (1.5 hours away from our previous life) and spent a lot of gas money driving back and forth to work and the ministry we were involved in at the time. It took me 2 years to be approved for disability, and I was not allowed to work during this period without jeopardizing that.

Our families helped us when they could and we eventually got back on our feet to some degree, but it was hard to catch up, meaning we went without a lot during those following years. There were few procedures and Christie's insurance paid some for prescriptions - even then they still exceeded $450 per month.We struggled during that entire time to meet medical expenses and monthly bills, mainly because we were living on two small incomes and trying to continue pastoring a small church with no compensation. 

Fast forward to 2010. Realizing that Christie needed a dependable career, we sold our house and spent it all to put her through nursing school. Many eggs - one basket. Though we had grants, I couldn't work, and we had to fund basic living expenses with student loans and credit cards. During Christie's last semester my health took a downward turn again. We were almost completely out of the financial mess that started 10 years earlier. Now we had to finance a trip to Boston because I needed to see a specialist - there was no one in the mid-south who fit the bill. Plane tickets, transportation, hotel, food for several days. Some friends helped with these expenses but it was just the beginning of several years of financial ruin.

We tried to work with a transplant team in St. Louis, hoping I could be treated there and avoid a move to New England. We made five separate trips to St. Louis between 2010 and 2011. We estimate that between gas, hotel, food, co-pays, deductibles, and lost wages, each of those trips cost us in the neighborhood of $1000-$1200 (not including out of network payments and the medical expenses). That's conservatively about $7000 in six months - on a nurse's salary and just starting to pay off student loans. Christie had started a new job - no personal days, vacation days, or sick leave saved up. We moved from our nice rental into a cheap-o apartment to make ends meet. We were still trying desperately not to fill up our credit cards again.

When we realized St. Louis wouldn't list me for transplant, we had to look to Boston. Christie took a job with a travel company hoping we could scope out a town nearby to settle. Crap insurance, massive deductibles and prescriptions co-pays. When a normal person is sick, they may go to the doc one or two times. When you're chronically ill, scarcely a week goes by that you don't have some type of appointment, consultation, blood draw, or test. Those small co-pays pile up quickly.

And think about the way prescriptions work for chronically ill people: I was hospitalized three times in January of  2012 for atrial fibrillation. There's danger of stroke after such incidents so they prescribe a blood thinner to keep your blood from clotting and sending a Clot of Death straight to your brain which will kill you within seconds

"So," says the doctor, "there's a generic thinner we can prescribe, but it's not as successful in preventing Brain Clots of Death and gods forbid you should get one of those while driving down the road with your kids in the car and crash into an old folks home where the local children's choir is singing...OR, we can prescribe the name brand drug (Pradaxa) which almost certainly guarantees that you will not in fact accidentally commit vehicular man-slaugther. Which one would you like?"

Well, that's not a trick question. Problem is, the co-pay for the name brand that keeps The Clot of Death at bay was a whopping $90 per month. As for the ER visits, Christie was between contracts with her travel nurse employer and we had minimal insurance coverage for the gap. (Next month, I will finally pay off the bill that I started in February of 2012. It was nearly $8000). 

I take 8 pills every day (some several times). I'll leave you to guess how many of those are generic and how many are name brand to prevent such things as The Clot of Death. When it comes to medicine, it seems like we were behind from the get go. I remember some of the early months of illness when I desperately needed to get a prescription filled but we didn't have $550 laying around and had to wait until the absolute last moment, thankfully the day before Christie got paid, so we could write a check that wouldn't bounce. Hand to mouth is a conservative description. My parents helped when they could, but they still had two kids at home. Most people fill prescriptions 90 days at a time, or buy them early, but we were always so far behind that it just wasn't possible.

While we traveled, we made trips to Boston about every six weeks for two years from wherever we were. Pennsylvania, New Hampshire, Norwalk Connecticut, Springfield, Massachusetts. Depending on the driving distance, we estimate (setting aside medical bills) that each trip cost somewhere between $800-$1000. That's another $8000 per year. It's no mystery where our "expendable" income went. Hotel rooms at $200 a pop in downtown Boston, food for 4 - not fast food because I have to watch my sodium - at $50 a pop for 2-3 days. $20 here and there for subway passes and taxi fares. And by trying to make the trips not such a drag for the kids, probably another $100 for admission to aquariums, children's museums, and anything to offset dragging them around all over the place. On a nurse's salary and less than part time disability, it's simply untenable. Some years, nearly an entire 3rd of our income has been sucked away by medical related expenses. Even now, with good insurance, our out of pocket is $3000 per person or $6000 for a family. Looks like we'll hit the $6000 first, but that's nothing to be thankful for.


So we settled in Springfield, MA. Rent deposits, utility deposits, new household expenses, the cost of moving our furniture there from Arkansas. That whole fiasco was another $8-10,000, not including deductibles with a new insurance plan. Eight months later, we were told my Boston listing was essentially useless for reasons I have explained previously on this blog.

This spawned a whole new set of expenses - we decided to move back to PA, but we had to find a house. Cue another four month round of gas, meals, hotels, and lost wages as we made 4-5 trips to PA to house hunt. Our friends, the Foleys helped us out a TON by housing and feeding us during this time, but there were weeks when they were out of town or otherwise committed and we had to do a hotel. We tried to find a rent house, but my physical limitations necessitate some fairly specific features in regards to stairs, bathrooms, etc. Rentals are scarce in this part of PA to begin with. So we gave in and got a loan to buy a house. Another $8-15,000 for down payments, deposits, moving expenses. The home is older and we've already spent nearly $5000 just on repairs, electrical and plumbing issues, etc. - but we were in a frenzy trying to find a place to live and couldn't examine the house as closely as we should have. But again, the illness forces you into frenzied situations where you have to make quick, often expensive decisions to get the medical care you need - everything else is secondary, but it eventually catches up with you. The piper WILL be paid, one way or the other.

Current day: Not only am I unable to work and incurring medical bills, Christie has had her own problems. The worst, worst, worst thing that can happen to a family with a chronically ill member is for another member to have health problems. She's the breadwinner. Since July, she has suffered an extreme reaction to poison ivy, requiring antibiotics and 2-3 weeks of lost wages, a concussion - another 5-6 weeks of lost wages, and tomorrow she is admitted for gallbladder removal and a possible biopsy which could result in another 5 weeks of lost wages. And we've not yet met our deductibles - it's February. She's had this job for 7 months - again, no sick pay, no vacation time, all personal days used up.

The kicker to all of this is that transplant financial advisers tell us that our part of the transplant procedure will be around  $25,000 - $30,000, AFTER both our primary insurance and Medicare have paid their part. We can't even begin to think of saving for that while buried in credit card debt and previous medical bills. Then there's the exorbitant immuno-suppressant medications post-transplant that I will have to take for the rest of my life. There's the issue of the boys as well - HCM (my disease) is genetic. They will be tested again for signs of the disease in a month or so. There is a 50% chance that we could be looking at similar medical expenses for one or both of them - probably not a transplant, but if they are diagnosed, it's entirely possible we're looking at septal ablation, pacemakers, defibrillators, and more expensive medications. I don't want to borrow trouble, but as the Van Halen song says, "No light at the end of the tunnel due to budget constraints." 

There is nothing to show for spending this money. I am not "better" than I was at the beginning (though I'm receiving much better care), and there's no guarantee I will be in the end. There is no big screen TV, no new car, no vacation, no college fund, or savings accounts. We've been very creative in trying to simplify, have fun, and do the best with what we have. But Medicare doesn't pay for hotels, gas, meals, or lost wages. The fact that my disease is rare and we've had to travel half the country to get knowledgeable care is the root cause of our debt.

 I really hope I don't sound bitter in any of this - it's no one's fault, so being angry about it is just wasted energy. And money still doesn't matter to us all that much. We're not concerned that we don't have all the latest gadgets and a new car. But it's frustrating when your income disappears into thin air and you're still trying to figure out how to pay your kid's orthodontist bills. On the one hand, I'm grateful to live in a country where kids can even get affordable dental care. It could be much worse, as I am acutely aware from seeing so many worse situations in my years of ministry.

The point is, money isn't the point. Knowledge and information is. Healthy people just don't get it sometimes, which adds to the frustration of the chronically ill. Politicians and conservative news channels constantly lump us in with welfare leeches, illegals, and lazy people who defraud the system. Even Mike Huckabee - someone I consider a friend - once referred to the handicapped as "burned down houses," on national television. I have a great deal of affection for Mike. But that hurt. I've developed a thicker skin since then. It's not that sick people necessarily want anyone's charity. They just want a little bit of compassion and benefit of the doubt when it comes to their finances, rather than assumptions and stereotypes.

Here's my advice. You have a friend that's chronically ill? Knock it off with the flowers and cards. That's just more money in the trash. Pay their water bill. Watch their kids for free. Buy them gift cards to clothing stores and shoe stores. Buy gift certificates to restaurants. Take their car to get detailed and oil changed. Notice the things they can't or don't do that healthy people take for granted. We feel so grateful to be part of a community that has done many of these things for us - they pay attention. But these are the little things no one thinks about that get put off or neglected altogether to avoid going to collections for medical bills due to the very clinic from which they're receiving care.

And above all  - don't assert to them that their insurance should or does pay for everything. Unless you've hit the out-of-pocket limit years in a row or had to travel 300 miles to the doctor, they have forgotten way more about medical insurance policies than you will ever learn in a lifetime. Just assume that they're doing the best they can considering the situation and mow their lawn. They'll be more grateful than you can imagine.