Every day on TV, ads for Hepatitis C treatments promise me a new life.
I contracted Hepatitis C in 1980 when given a transfusion during a D and C--a procedure to scrape out my uterus. I'd been bleeding heavily since giving birth to my first son, and when Dr. Townsend saw me in the recovery room after the D and C he said there'd been placental material inside, most likely from Jason's birth but also possibly from a miscarriage. In any event, I bled a lot and was given two pints of blood from the Red Cross blood bank in Washington, DC. In those days, blood wasn't tested for AIDS or Hepatitis C because neither disease had been identified or named until AIDS in 1983 and Hep C in 1989.
Luck of the draw, I guess.
Recent studies have found that most Hep C transmission is due to medical procedures, not risky behaviors. For more information on this, see this article in Internal Medicine News.
Throughout the years I've had this blog I've been searching for answers to the weird symptoms I've had, many of them neurological. Only recently have doctors found HCV, the Hepatitis C virus, replicating in the brain. That probably means my white matter/demyelinating disease, and probably my diagnosed hypersomnia--which though called idiopathic is now known to originate in the brain--are due to the decades large quantities of HCV that have been circulating in my blood. Despite this, I have never been treated.
I have HCV genotype 1a, the most difficult to eradicate. In the past, the only treatment was some 49 weeks on Interferon and Ribavirin, and the treatment frequently led to flu-like symptoms, depression, and a bunch of other problems I didn't want to invite into my life. While I was working full-time, I couldn't even think about doing that. I was already so run down with my hypersomnolence, lack of energy, and host of other diagnoses that I was pretty sure the treatment would kill me, and I was still alive (barely) without it, and being alive is better than being dead. I think. Even after going through that treatment, the odds of clearing the virus were only 50 percent.
Now, of course, brand-new treatments are available, and one is highly effective against genotype 1a and is administered over only a couple of months rather than nearly a full year. And I'm on disability now, so even if it does knock me on my ass I can absorb that for a brief period of time. I went to my gastroenterologist, though, and he informed me of the following:
I contracted Hepatitis C in 1980 when given a transfusion during a D and C--a procedure to scrape out my uterus. I'd been bleeding heavily since giving birth to my first son, and when Dr. Townsend saw me in the recovery room after the D and C he said there'd been placental material inside, most likely from Jason's birth but also possibly from a miscarriage. In any event, I bled a lot and was given two pints of blood from the Red Cross blood bank in Washington, DC. In those days, blood wasn't tested for AIDS or Hepatitis C because neither disease had been identified or named until AIDS in 1983 and Hep C in 1989.
Luck of the draw, I guess.
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| I need to get this publication! https://www.opensocietyfoundations.org/publications/hepatitis-c-treatment-price-profits-and-barriers-access |
Recent studies have found that most Hep C transmission is due to medical procedures, not risky behaviors. For more information on this, see this article in Internal Medicine News.
Throughout the years I've had this blog I've been searching for answers to the weird symptoms I've had, many of them neurological. Only recently have doctors found HCV, the Hepatitis C virus, replicating in the brain. That probably means my white matter/demyelinating disease, and probably my diagnosed hypersomnia--which though called idiopathic is now known to originate in the brain--are due to the decades large quantities of HCV that have been circulating in my blood. Despite this, I have never been treated.
I have HCV genotype 1a, the most difficult to eradicate. In the past, the only treatment was some 49 weeks on Interferon and Ribavirin, and the treatment frequently led to flu-like symptoms, depression, and a bunch of other problems I didn't want to invite into my life. While I was working full-time, I couldn't even think about doing that. I was already so run down with my hypersomnolence, lack of energy, and host of other diagnoses that I was pretty sure the treatment would kill me, and I was still alive (barely) without it, and being alive is better than being dead. I think. Even after going through that treatment, the odds of clearing the virus were only 50 percent.
Now, of course, brand-new treatments are available, and one is highly effective against genotype 1a and is administered over only a couple of months rather than nearly a full year. And I'm on disability now, so even if it does knock me on my ass I can absorb that for a brief period of time. I went to my gastroenterologist, though, and he informed me of the following:
- Insurance companies will not approve treatment unless I have evidence of liver disease. My liver has held up pretty well through all of this, though I'm going for a biopsy in the morning. It has been something like 10 years since my last biopsy.
- Treatment for Genotype 1a costs $45,000.
- If I am liable for 20 percent, that means I'll owe close to $10,000.
- I am on Disability and have a three-hour-a-week part-time job, so my income is just barely over the poverty line--but is OVER, so I am not eligible for any state or federal assistance with the cost of drugs that are making some CEOs out there very, very, very rich.
Let me be straight: I don't begrudge the poor people their subsidies. I am damned close to poor, and it is damned hard. I know what it's like to be comfortable; I grew up in a middle-class home; my father was an electronic engineer and my mother a homemaker. I know the difference.
Blaming the poor and begrudging them the help they get from the rest of us just distracts us from the main problem: the fact that the wealthy do not pay their fair share of taxes (thanks to Reaganomics) and the other fact that far more of our tax money goes to the war machine and sketchy crony contracts than to help the poor, old, and sick among us.
Meanwhile, if I lived in Australia, the treatment would be paid for by my government, no matter how I contracted the disease.
Meanwhile, if I lived in Australia, the treatment would be paid for by my government, no matter how I contracted the disease.
So here's my dilemma now.
I really do want to have this disease treated. I really do want to feel better. I would love to be able to go back to work full-time and make some decent money so I could fix up my rapidly crumbling home and pay off my current bills and be able to enjoy my last days without constant financial worry on my mind.
But $10,000? How the hell am I going to do that? I don't even have good credit, thanks to my then-employer's terminating me when I became too sick to teach full-time anymore. I had to declare bankruptcy and am slowly working my way back to half-decent credit--but who the heck is going to give me a loan?
This is why universal health care needs so badly to be instituted in this country. There is no reason for drugs to cost that much when pharmaceutical CEOs are bringing home gazillions of dollars every year in salaries and bonuses. There is no reason for insurance companies to limit their coverage when insurance CEOs are bringing home gazillions of dollars every year in salaries and bonuses.
We are a stupid people, we Americans, to let this go on. We keep electing puppets into Congress who don't have our interests at heart--not the tiniest bit. And we are paying for our stupidity with our very lives. When are we going to wake up? I did my part--I voted for Bernie. I just hope he is the beginning of a wave of awareness in this nation. We the People need to take back health care from the vampires sucking our blood--even mine, chock full as it is of a deadly virus.
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