We have a saying that don't kill the messenger. But sometimes the message is bad and not easy to accept, then people kill the messenger. In medicine I have seen it personally. In spite of advances in medical science, we have diseases that are simply bad and no matter what treatment you offer, it is not enough and certainly no cure. I have had that experience in past and I am sure I will have that in future. This brings me to the story for today.
I saw this 70 plus years old male patient ,who had some cough and some shortness of breath. He had moved here from near by place and was seen by lung specialist and followed by them for 2-3 years. He was ex smoker and had not smoked for may be 10 plus years. He had breathing test done and CT scan done in past. He was started on inhalers and he was OK. Then he started coming to me . I saw him and then I felt that he did not have much of COPD or obstructive lung disease which is related to smoking, but had FIBROSIS. I did do new CT scan of chest - called NRCT -HIGH RESOLUTION CT scan and also did breathing test. The Ct scan showed fibrosis and that was significant. I got hold of old CT scan reports and he did have FIBROSIS IN OLDER CT SCANS ALSO. We di assessment for need for oxygen and he needed oxygen. So now he was on oxygen and I discussed with him on the diagnosis of fibrosis and told him that he had it in past and seems like he was getting worse ,and so we needed to start him on medicines for fibrosis. The problem with medicines for fibrosis is 3 fold . Number one is that it DOES NOT CURE OR REVERESE the process. It slows down the decline. I tell patient that the reduction in lung function continues and does not stop , but the rate of decline is reduced - it continues rob dollars but instead of $100 , it now takes only $50 or so. Then second issue is it does not reverse anything. So the damage which is there does not get better , And lastly , it is expensive. My be as much as $25000 per year. So we need forms to be completed and get patient approved and then copay and other things that are associated with these orphan medicines. There are 2 medicines for the fibrosis - now for last 3 months 3 . I ordered one and the insurance denied the coverage. I was not sure why and we appealed and went through circle of calls and transfer and did not come to any conclusion. Then I realized that they covered other medicine and not one that I had asked for.
In between there was a drug trial going for the medicine - same one but as nebulizer and not a pill and we got him in it . He continued to have cough and continued oxygen . He did not get worse on his breathing test, but he felt he was NOT GETTING BETTER OR CURED. I had to tell him that he is not going to be cured and the disease will continue to get worse INSPITE of medicines .
He was not happy and dropped out of the study and decided to seek second opinion.
The message was not good and so he did not like it .
