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My father was diagnosed several years back with advanced stage Hepatitis C. They believe he acquired it from a blood transfusion he received after losing a lot of blood during hernia surgery in the early 80s before blood was screened like it is today. As a result of having the disease and not knowing about it, he now has not only Hepatitis C, but cirrhosis of the liver.
The original treatment plan of Ribavirin and Interferon they tried him on a couple of years ago (even though it had only showed improvement in 7% of people with his genotype) nearly killed him twice. The result of the treatment was 15 days in the hospital on each occasion. Against his doctor's suggestion, he stopped treatment completely, as most people with a sense of reason would.
I was desperate to find out if there was an alternative treatment method, and after a lot of research I found out about this amazing plant called Milk Thistle. When they do a blood viral count for Hepatitis C, they are shooting for the lowest number possible. His initial test before any treatment had his count off the charts at over 6.5 million. He was in bad shape. After two years of Milk Thistle twice a day, he was getting better. He looked healthier, he felt better, and his resulting blood test showed a count of 240,000. Doctors were baffled, and refused to accept the fact that Milk Thistle was the reason, and kept urging him to quit taking it. Eventually, they scared him into stopping it, because they said it could cause severe internal bleeding issues. After he stopped, his count in the following year has gone from 240,000 to 4.9 million. He has lost weight rapidly, regardless of his diet, and feels like giving up.
Actually, I should say he felt like giving up. About 6 months ago, after more research, I found out about an experimental drug being trumpeted as a possible cure for the disease, not just a treatment. The problem was, it was still not FDA approved. This was with a 98% cure rate. I guess it wasn't killing enough people for their liking. Even better news, for his genotype, it has a 100% cure rate in 237 patients. This was great news. Then the hurdles appeared. The treatment is a combination of two drugs. Sovaldi and Olysio. Sovaldi is $85,000 a bottle for a 4 week supply, and Olysio is $25,000 a bottle for a 4 week supply. Treatment is 16 weeks long, and the fact it was not FDA approved at the time for anything other than clinical trials, made it moot anyway. All total, treatment would cost $440,000.
Entry to the clinical trials was closed, so I thought all hope was lost. Out of pure desperation, I started emailing politicians to see if they had any kind of pull. They pretty much all told me they didn't, but Mark Warner informed me of something he said was a way for people with advanced stage diseases to get special approval for medicine, but the approval rate was less than 5%. My dad was lucky enough to be approved.
Since the medication was not publicly available yet, insurance would not cover it without jumping through what seemed like billions of hurdles, so I put my jumping shoes on and got to work. After months of fighting the insurance company (Anthem for those wondering) they agreed to pay all but $100,000 of it. Yeah, that's nice, that's a huge chunk. But where do you come up with $100,000? Apparently there are grants available for situations like this. Back in April, we spent days online applying for every grant we could find for this situation. Finally, last month we got enough to cover the $100,000.
Today, the bottles of medicine arrived from UPS. The road to a cure begins right now, and now that the hard part is over, I'm just hoping it all works out. Seriously though, $440,000 for two bottles of pills? Our broken system just got more broken I believe.
The original treatment plan of Ribavirin and Interferon they tried him on a couple of years ago (even though it had only showed improvement in 7% of people with his genotype) nearly killed him twice. The result of the treatment was 15 days in the hospital on each occasion. Against his doctor's suggestion, he stopped treatment completely, as most people with a sense of reason would.
I was desperate to find out if there was an alternative treatment method, and after a lot of research I found out about this amazing plant called Milk Thistle. When they do a blood viral count for Hepatitis C, they are shooting for the lowest number possible. His initial test before any treatment had his count off the charts at over 6.5 million. He was in bad shape. After two years of Milk Thistle twice a day, he was getting better. He looked healthier, he felt better, and his resulting blood test showed a count of 240,000. Doctors were baffled, and refused to accept the fact that Milk Thistle was the reason, and kept urging him to quit taking it. Eventually, they scared him into stopping it, because they said it could cause severe internal bleeding issues. After he stopped, his count in the following year has gone from 240,000 to 4.9 million. He has lost weight rapidly, regardless of his diet, and feels like giving up.
Actually, I should say he felt like giving up. About 6 months ago, after more research, I found out about an experimental drug being trumpeted as a possible cure for the disease, not just a treatment. The problem was, it was still not FDA approved. This was with a 98% cure rate. I guess it wasn't killing enough people for their liking. Even better news, for his genotype, it has a 100% cure rate in 237 patients. This was great news. Then the hurdles appeared. The treatment is a combination of two drugs. Sovaldi and Olysio. Sovaldi is $85,000 a bottle for a 4 week supply, and Olysio is $25,000 a bottle for a 4 week supply. Treatment is 16 weeks long, and the fact it was not FDA approved at the time for anything other than clinical trials, made it moot anyway. All total, treatment would cost $440,000.
Entry to the clinical trials was closed, so I thought all hope was lost. Out of pure desperation, I started emailing politicians to see if they had any kind of pull. They pretty much all told me they didn't, but Mark Warner informed me of something he said was a way for people with advanced stage diseases to get special approval for medicine, but the approval rate was less than 5%. My dad was lucky enough to be approved.
Since the medication was not publicly available yet, insurance would not cover it without jumping through what seemed like billions of hurdles, so I put my jumping shoes on and got to work. After months of fighting the insurance company (Anthem for those wondering) they agreed to pay all but $100,000 of it. Yeah, that's nice, that's a huge chunk. But where do you come up with $100,000? Apparently there are grants available for situations like this. Back in April, we spent days online applying for every grant we could find for this situation. Finally, last month we got enough to cover the $100,000.
Today, the bottles of medicine arrived from UPS. The road to a cure begins right now, and now that the hard part is over, I'm just hoping it all works out. Seriously though, $440,000 for two bottles of pills? Our broken system just got more broken I believe.
