This an open letter that I have sent to all my representatives, senators and local newspaper(lets see if they print it) September 19, 2013 I’m writing to all of you because I’m outraged. I’m even writing to Congressman Cohen, even though he isn’t my Congressman, but all of you have failed my kid and every person that deals with some sort of an illness. Let me start by telling you that my daughter has Cystic Fibrosis. Cystic Fibrosis is a cruel illness that robs the patient the ability to breathe, the ability to naturally digest food. The respiratory and digestive system are both compromised but morbidity is higher due to lung involvement. My child Achilles heel is her lungs and hemoptysis. Hemoptysis is, pure and simple, bleeding from the lungs. My child has had horrible lung bleeds, so horrible once she had to have three blood transfusions and three embolizations, embolizations occurred in different years. An embolization is done by an interventional radiologist who goes in with an emboli through a major artery in the groin area and effectively cauterizes bleeding veins in the lungs. This is a minimal invasive procedure but it’s expensive and has certain risks. This is only done when the infection of the lungs, which triggers the bleeding, isn’t controlled with antibiotics. When my daughter starts bleeding, immediately she is put on antibiotics. In the past, the bacteria she is colonized with, has been pretty much resistant to all oral antibiotics but it has sensitivity to inhaled and intravenous antibiotics. My daughter started coughing up blood last week, September 05, 2013. We went to see the doctor on September 06, 2013. My daughter had two choices, go into the hospital and receive intravenous antibiotics or go home on inhaled antibiotic. It was decided she would go home on inhaled antibiotics. On that same day, the doctor’s office faxed the orders for the inhaled antibiotic to the pharmacy. Today, thirteen days later, insurance has YET to make a decision to approve the antibiotic. She should have had started inhaled antibiotics, at least a week ago. She should have only waited for the time that takes an antibiotic to go from the mail order pharmacy to our door steps. Her condition is certainly not improving and she is facing the possibility of going in the hospital because a bureaucratic system is miserably failing her and every other patient in her situation. This is something that you may not understand, meaning the implications of someone being admitted into the hospital vs. being treated at home with an inhaled antibiotic. I’m not even talking about the inconvenience for the patient, nor am I talking about the dangers of going in with one infection and picking up three other bacterias while in hospital. Cross contamination for the regular population is pretty much a possibility, for a Cystic Fibrosis patient the probabilities are even higher. So, let’s not take into account the wellbeing of the patient as a whole, let’s considered the financial burden to all involved. The inhaled antibiotic in question here cost is $6,000.00, yes, you are reading correct six thousand dollars of which 25% is our responsibility. On the other hand a hospitalization for two weeks would probably cost the insurance company, on a short stay, around $30,000.00. I can’t say exactly our part, how much we have to pay, but it’s at least, conservatively 20% or six thousand dollars. It is not good business to push, ignore, overlook the need of getting the patient to receive, not only the easiest way but also the cheapest, after all insurance companies are all about money. This attitude only makes me assume that they (insurance) is hoping for the patient to not need the drug or perhaps for the patient to just go away. This has got to change, once and for all. No patient should be subject to the whims and capricious ways of a few. When a patient has been prescribed a medicine it should be dispensed, particularly when is a med that is widely used in Cystic Fibrosis. I want all of you, my representatives to do something about situations, as the one my child is going through at this very moment. This has got to stop! You are all responsible for the bureaucracy of a system that is totally screwed up where people’s lives are decided as business decisions and not as human beings. You all are responsible for your constituency and not the big pockets of insurance companies that fill your bank accounts giving you an edge when it comes to elections, big bank accounts + advertisement = a seat in Washington.
Posted on: Thu, 19 Sep 2013 15:43:06 +0000
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