When my husband first began experiencing the catastrophic complications related to Type 1 Juvenile Diabetes, I of course began to panic. The costs of the best care were astronomical. In those 11 years I saw statements (not bills) that were larger than mortgages on 5000 sq ft houses. Some things really stick out in my mind but only one was related to the insurance industry. There were lapses in things with the hospital, stupid human mistakes that I caught because I lived at the hospital when he was sick.
When Rich's kidney's failed, we had an excellent, older nephrologist who admitted him to the hospital as an Emergency. He read the policy closely and understood what it would take to make the system work. The emergency meant that we paid $100 and everything associated with the situation would be paid at 100%. That included Paratenial Dialysis which is the best but not, at that time, the standard of care in the industry. Hemodialysis was the standard but would have made it impossible for him to keep his job, which had the insurance. he knew how to guide us through the system and protect us, making the insurance company do what they were supposed to do.
We waited 25 months for a pancreatic transplant and received one in July of 2002. We lost it 8 days later and he nearly died from intestinal leakage into his abdominal cavity. Then in September of 2002 we received a second pancreatic transplant, we lost it the first week of October on Richard's birthday. It encapsulated and they told me we would know in 72 hours if he would live. He was a immunosuppressed man who went septic. The pancreatic transplant is the only medically known and accepted cure for diabetes, thus the only thing that would stop the train.
The cost of the pancreatic transplants was astronomical. The "cost of procurement of the organ" for the first pancreas was $33,000.00 and the second was $28,000. What a family gave at the most horrific time in their life out of the goodness of the heart, the health care industry charged this much just to get. I understand the doctors and the helicopters etc. But the price to get it was patently ridiculous. Between the dialysis, kidney transplant and pancreatic transplants, the costs was over 2 million dollars.
Richard's kidney surgeon was doing research at that time on "pancreatic isolitte cells" to cure diabetes. Its complicated, but involves cells and a biopsy needle. He was a perfect candidate and was so excited about the procedure. Then the right wing, the drug companies and the insurance companies started pressuring the government regarding stem cell research being inhumane. The news came down that the insurance company decided it was "experimental" and would not pay for the expense. Since it was a study, the procedure was free. He was already on anti rejection drugs for maintenance of the transplanted kidney. The cost of this program compared to the "standard of care" a brittle diabetic in end stage renal failure was minuscule. We will never know if it would have worked for Richard, and we will absolutely know they will not cure diabetes in his lifetime at this point.
All together, though all of the bills have not come in from the entirety of Richard's illness. At last count it was around 5 million dollars. His work changed their insurance 3 different times to keep him from "topping out" the lifetime maximum. The health care industry is filled with doctors, nurses and staff that spend their days trying to save lives. Between the malpractice insurance, health care insurance and drug companies, they set the "standard of care" in the United States. Now, I don't pretend to know the answer to all of the questions regarding health care reform. But there are a few things I know about a chronically ill human being. We were dependant on drugs to keep him alive that cost in the neighborhood of $4500 a month for almost 10 years, or $520,000. I know that his hemodialysis for the last 10 months of his life cost in the neighborhood of $180,000 just for the sessions. There were shots that they gave him on and off that cost $5000 a piece that are also used on chemo patients. Just for transport it cost well over $25,000 for ambulances and med-flights. What I don't know is where the money is going. I don't know why there hasn't been a baby born in my hometown in over 20 years because there are no OBGYN's there due to malpractice insurance premiums making it impossible. I don't understand why the hospital in my hometown has been driven out of business for the same reason and my father has to be flown in a helicopter when he has a stroke or a heart attack.
I don't think the current Health care reform package is going to fix this issue. I don't think that socialized medicine is the answer. I don't think that health care should be run by the government as they are the people who paid $1200 for a toilet seat. I think someone needs to get the insurance companies in check. I am a simple widow woman without the answer to these questions. But an open intelligent conversation needs to start and it needs to start now.
