Consider some numbers for a moment. In 2011, the estimated cost for liver transplant was over $500,000(source). Even with good health insurance, it is naive to think that all of those costs are covered. Additionally, medical costs are insanely expensive. For example, the typical lab draw for Luca means our insurance is billed $1700 - EACH TIME. She gets those typical labs at least once a month, and earlier this year was getting labs once per week. That is just for blood to be taken and tested. Think about the amount of hospitalizations these children endure. The last overnight stay with Luca the hospital did not intervene with any IV, fluids, or treatment other than to follow her normal feeding schedule at home and provide her medications. They were essentially monitoring her. That one overnight stay was billed for over $8000. One night.
That is just to give you some perspective as to the amounts for transplant patients. Now, consider this:
1. Loss of work. When receiving a life-threatening diagnosis for a child, a large percentage of parents make a decision for one parent to stay home. But, this is not really a decision but more so it happens because it is absolutely necessary at the time. There are so many doctor appointments, tests, lab draws, phone calls, insurance calls, etc., and often there are hospital admissions. Being a parent requires that you are there for your child and getting that child better is the first priority, and it is a full-time job. Even if both parents continue to work, likely one parent needs to take time off and may have to cut back on hours. This is especially true when it comes time for the actual transplant and year following transplant. There are tons of admissions and lengthy hospital stays and sometimes parents have to take unpaid leave from jobs. In an age when so many families are two-income households, and survive because of that, cutting back to one income or a loss of income can be devastating for that family. For Ian and I, it was a no-brainer that I should take a leave of absence from school. Ian has a stable job (thank God) and has great insurance. While that decision was the best one at the time, it means that my student loans have just been sitting there and I have had to fight to put them on hold. Soon, that hold will run out and we will have to start paying my loans back because while there are a lot of exceptions when you yourself face medical crisis, there are no exceptions when you are the parent of a minor child facing medical crisis.
Then, think about when both parents are able to go back to work. The child, unless in school, needs to go somewhere for childcare. But now that the child is immunosuppressed and requires medications to be given during childcare hours, the options for quality care are few, and typically expensive. Just another issue to consider.
2. Travel and relocation. Also consider that at least in transplant cases, many families travel to a transplant center that has experience in treating disorders and diseases that their child has been diagnosed with. Often, these institutions are in larger cities and hence are more expensive to travel to and through. Gas is expensive, and sometimes people need to even fly or take the train to their transplant center. Also, parking at these hospitals can add up very quickly, especially when your child is inpatient (although some hospitals cover parking costs once you have been inpatient for a certain number of days). In our case, our transplant center is in our nation's capital. I love Washington, D.C. Our transplant center is fantastic. But getting fantastic quality care in the DC area also comes with a price - a hefty price.
Some families end up relocating to be closer to their transplant center. We were living over an hour away from D.C. and that first year post-transplant required trips and admissions at least once per week. It was too much stress so we decided to relocate to Montgomery County, which is right outside of D.C. Living close by to our center is expensive. Living in this area without the added costs of having a child with medical needs is hard. Then factor in the medical expenses and making ends-meet proves difficult for many families.
3. Medical Expenses. Even with great health insurance, there are medical expenses. There are bills associated with deductibles, co-insurance, prescription coverage, medical equipment and home delivery. Personally, we take out a portion of every paycheck to pay for our deductible and co-insurance. And with the recent federal enactment that places a $2500 limit on money that can be put into an FSA account, 2013 will mean more money out of pocket for families in our position.
Further, not all medications and supplements are covered by insurance. In our case, immediately following transplant, Luca needed a special supplement to help her absorb the fat in her diet. We only needed a small portion, but the smallest bottle cost us $90. We used it for about 2-3 weeks and have about 3/4 of it left in the bottle (and I refuse to throw it because it cost so much, even though we have no use for it now. These children often need special supplements or formulas and very rarely are they covered by insurance. In terms of medications, one of Luca's medications is not covered by insurance whatsoever. We have appealed the decision on more than one occasion and her doctor has written letters arguing for it to be covered. But when one's disorder or medication is so rare that few people in the U.S. or within that medical plan require that medication, the insurance company is not required to cover it. And so far, we have been unsuccessful in having it covered at all. This is not uncommon among families facing a rare disorder or treatment for a loved one.
As if families were not under enough stress, families often have to argue with insurance companies and medical providers about costs. Hospitals make mistakes and insurance companies do as well. Things can get billed more than once but under a different medical code. Things can be deemed out of network and thus you pay more. I make calls to our insurance company or place of service (hospital or doctor's office) at least once per week regarding bills and questioning certain items. Inevitably, I have to be the middle man between our insurance and medical provider in order to get something sorted out. I have to call every three months to get an override for Luca's immunosuppression so that it can be covered. But often the override takes 3-5 business days and we need the medications more quickly than that as her medications have a very short shelf-life because they are compounded into a liquid form. So while we wait for approval, we pay out of pocket for her meds and then have to go through a lot of phone calls and paperwork to be reimbursed.
4. Other things to consider. With medical costs and your child's health at risk, these bills often take priority. These leaves families in a state of panic sometimes for simple things like gas, car payments, grocery bills, mortgage or rent, personal items, etc. Families still have to live their lives! And unfortunately, the bills are not often spaced out nicely. For example, we get hit massively from January to March of every year as the medical bills come in that meet our deductible. So we pay a ton during those months and then have to kind of recover after that. You cannot plan when your child needs an admission or transplant so often bills come in all at once. Further, think about the age group of parents who are facing organ transplantation for their child. Typically, the parents are on the younger side so they do not necessarily have huge amounts in savings for these types of emergencies. They might have older cars or have just bought their first house. They might just be getting more settled in their careers. It is an age of change and excitement and then boom, you have a child that is medically unstable and as scary as that is (and it is really freaking scary), you also have to worry about all of the finances associated with this new life.
I hope this information provides some insight as to what transplant families go through. Unfortunately when you have a child who requires organ transplantation, the financial consequences are life long. Medications, doctor visits, complications, etc. are all issues that will continue to be part of a transplant family's life. While this information is clearly not the rule for every family, I can hardly imagine that families have not had to deal with any of these burdens. And finally, I just want to say that all of the financial concerns we have, it is all worth it.
Luca is here. We have a roof over our heads, food in our bellies, great healthcare, and a happy girl on our hands. Life is hard sometimes, but so worth it.
