What does it cost?
A lung transplant costs anywhere from approximately $200,000 to $1,000,000, depending on whether or not there are complications resulting in multiple hospitalizations, critical care, repeated surgeries, etc.
Obviously this is not an impulse buy, and somebody has to pay.
Most insurance plans cover medically necessary transplantation. If you are insured under a typical group health insurance plan, the only possible problem might be if you have a lifetime or perhaps even annual cap on expenses, which if it is under say, $200,000, would compromise your ability to either pay or even be accepted at a transplant center.
HMO's, contrary to common opinion, seem to be relatively transplant friendly, as long as you stay within their coverage area. PPOs seem to be more flexible, however. Things to look for are whether or not the plan covers housing for your spouse if you should be transplanted at a distant location where temporary housing would be necessary. Also, the insurance plan might require that the transplant center be Medicare-approved.
Medicare is confusing. If you are on Medicare, which would most likely be as a result of your being approved for disability under Social Security since normal Medicare-eligible citizens are too old for a transplant at age 65, and if you have no insurance outside of Medicare, then you must go to a Medicare-approved transplant center. If you are not sure whether or not the center you are considering is Medicare-approved, ask them. Let me repeat that--ASK THEM. Similarly, if you are in the service of the military, you most likely would be transplanted at a VA hospital. Recent reports on typical care at VA hospitals are frankly frightening, as the VA hospital industry as a whole seems to have become a safe haven for incompetent doctors that can not obtain employment in civilian hospitals or have been dismissed individual states for continuous errors and unending lawsuits. Be that as it may, the financial reality of your individual situation may dictate where you go as much as anything else.
One reason to try to go to a Medicare-approved transplant center used to be that Medicare would pay for post-transplant medication for a period of three years from the date of transplantation, provided you were not covered by another insurance prescription plan and were on Medicare. To get on Medicare at an age at which you can still be transplanted--typically under 60 or 65--means that you have to be officially disabled for a period of two years (if you are under the age of 55). Therefore, an important thing to do is to apply for Social Security Disability as soon as possible.
UPDATE--As a result of changes made during the Clinton Administration, Medicare now pays for post-transplant anti-rejection and immunosuppressive medications at 100% for the life of the transplantee, providing of course, that the transplantee is on Medicare. So being on Medicare becomes as much a matter of prescription coverage as medical insurance coverage after you have been transplanted, which is another reason to pursue Social Security Disability (SSAD) approval prior to transplantation.
Prior to the changes outlined in the above paragraph, what used to be Medicare's policy of providing three-years of post-transplant prescription coverage was somewhat of a mock benefit, as most people that leave work on a disability would go on COBRA (which covers them for a period of 18 months with an additional eleven months if they are disabled, for a total of 29 months). If they then got transplanted at, say one year from then (best case), they would stay on COBRA for another seventeen months (29-12=17), and then be forced to go on Medicare seven months later, since they need to be disabled for 24 months to qualify (17+7=24), and would be at that point, so the 36-month coverage of post-Tx meds they used to get under Medicare would only run for another twelve months (36-24=12). Confusing? It no longer has to be--coverage is provided for the life of the transplantee. This benefit represents the only significant change in the Government's approach to taking better medical care of its citizens in decades, and was but one of the contributions of the Clinton Administration for which we, as transplantees, must be grateful. Typically, this extends to Cyclosporin and Cell-Cept and their equivalents (ProGraf and Imuran) only. Of course, under the Pharmaceutical Industry-friendly Republican Bush Administration, this could all change (and will, unless they are changed).
In any case, in Supplemental Medicare plans that have a prescription benefit, and I assume, some single and group non-Medicare plans, the two most costly anti-rejection and immunosuppressive medications are typically "carved out" of the medical part of the plan's coverage rather than out of the prescription part of the plan, and are paid at 100% minus a copay. This benefit, if available, typically falls under the category of chemotherapy coverage, and is not publicized nor easy to verify. It is impossible to get it stated in writing, but it exists. Be sure to ask your carrier what coverage options are available. Be persistent. In the end, you may need to apply for SSAD and Medicare to get adequate coverage.
In any case, why would you stay on COBRA as long as possible? It's expensive, and perhaps you think you can find something cheaper on the open market. Well, a Federal law known as the Health Insurance Portability and Accountability Act (HIPAA)--also known as the Kassebaum-Kennedy Act--guarantees that a patient insured under a group plan that leaves employment at the company that provides that plan is then able to be covered under another group plan at another company without any pre-existing condition restriction, providing that they run COBRA out to the end, or until a qualifying event occurs (such as qualifying for Medicare or being rehired). If you are planning on returning to work after a transplant, this is a major consideration. What you don't want is to have a gap in your coverage for say, six months, during which time you experience rejection and are hospitalized without insurance. Oops.
What will the bottom line be if you have average coverage and do everything right? Generally this will be determined by the annual in-network out-of-pocket and out-of-network out-of-pocket maximum caps provided in your insurance plan. Up until that point, you will pay either 10% or 20% of all charges in any given year until you hit these caps, after which the insurance company will pay 100%. So if you have great coverage, you might pay $1000 in-network and $1500 out-of-network, plus incidentals such as spousal housing and out-patient housing and living expenses (two months of which cost me over $4500). That comes to a total of about $7000 in the year you are transplanted. Your mileage may vary.
My advice? Get help. Get a lawyer. Talk to EVERYBODY--HR, the transplant team, other transplantees, friends, family, you name it. Many times help will come from unexpected places and from unexpected sources.
And above all, if they aren't screaming for their money, you paid too soon.