My thoughts exactly, Dee! The pre-existing condition ban is huge, and cannot be understated.  I happen to live in a State that banned this practice before - but I grew up in Texas, and my sister still lives there.  If she was Dx as a current uninsured person, getting help would be nearly impossible.    An Emergency room cannot treat you for leukemia.    If I ever chose to move back, could I have been denied coverage?     I think this fact gets glossed over way too often in the health care debate.   Denying health insurance to an infant, is nothing short of evil (IMHO).

I have no wish to debate on this issue, everyone is entitled to their opinions - and I normally keep my mouth shut when politics come up - but from my perspective, Obamacare is a good thing for the majority of those with HCV.     Just the peace of mind in knowing you can not be denied health  insurance coverage alone is worth it. 

*steps off of soap box & returns to my normal non-political self*

-- Edited by LTChaos on Thursday 27th of February 2014 05:27:57 PM

Our health care system is still a wreck. However, the one indisputable advantage of the ACA is that a person can no longer be denied an insurance policy solely due to preexisting conditions; nor can their policy be cancelled willy-nilly. That is a huge change for the better, even if things are still not where they should be...

Dee,

I'm glad you were able to finally get the insurance you so desperately needed. I'm afraid IMO the jury is still out on OBAMACARE/ACA. I've had nothing but problems and denials from it. The roll out has been all but stellar. I wish everyone luck that has to rely on it.

I did attempt to increase my life insurance coverage and was told I was too high of a risk because of the HCV. I haven't tried to obtain LTC coverage. I'm sure the insurance database has me red flagged and if on the off chance a plan was offered, it would be prohibitively expensive. Those of us living on an extreme budget can't afford those additional expenses anyway. Our grandparents and great grandparents didn't have those options in my experience and managed. So for the time being, I expect to do the same. It will take continuing education and if necessary, legislation (ugh), to convince these corporations to see the light. There should not only be advancements in medical care, but also to the care of the patient following these successful advancements. It doesn't serve much purpose if the horses are free to run while the wagon is stuck in the mud...

Tig

I forgot to add something important. For me, like many of you, this diagnosis has caused many headaches with health insurance. Over the years, I have sometimes had group insurance via employment, but for many years I have worked part-time and freelance and had to get my own insurance. Until "Obamacare," Hep C made me (like all of you) uninsurable on the individual market, so I was in an inferior "high risk pool." I followed the passage of the ACA/"Obamacare" legislation closely, and this year, for the first time, I was able to buy insurance for my daughter and me with no questions asked. This also is what has allowed me to get the treatment. By the way, I hope anyone wondering about costs has contacted PAN (Patient Access Network). They covered my considerable copayment for Sovaldi.

When my daughter was a baby, insurance was denied to her because she was anti-HCV+, even though her PCR tests were negative. I finally got insurance for her after multiple doctors/specialists wrote letters to the insurance companies stating she was not infected anymore.

I have also recently learned that I cannot get long-term care insurance due to HCV. It will be interesting to see whether LTC companies will agree to insure those who are SVR with minimal liver damage. Anyone have experience with this?

Female, age 59, genotype 2b, contracted in 1974 or 1975, diagnosed 1993. Treatment naive, fibrospect 0-1, persistently normal enzymes, started Sovaldi + ribavirin February 1, 2014

Hello Dee, Welcome to the forum.  I am relatively new here too.   You & I started treatment within a day of each other, so I suspect we will be posting our SVR results around the same time :D!

I have only told 3 people in my personal life, my husband, my daughter & my sister.  Who you tell is totally up to you.  One Dr told me to tell people I had inflammatory liver disease if I ended up having to miss work during treatment.  This was my children's pediatrician.  Once you tell, you can't 'untell', & you don't know how someone might take it, who else they may tell, etc.  You are justified in keeping it as a closely guarded secret.  We had to test all 3 of our kids for Hep C, because I likely had it when they were born.   All came back clear, thankfully, but that was probably the worst part of this whole ordeal.

I agree this place is wonderful!   I started searching for online forums as soon as I had a confirmed Dx, and was pleasantly surprised to find this community. The folks here are so knowledgeable & warm hearted.    They removed so much of the uncertainty & fear I had early on.  I can't express enough how much it has meant to me.

We are 1/3 of the way through - this remaining 8 weeks will pass in no time at all!!

Hi Dee,

Welcome again to the forum! We are also glad you found our group and look forward to following you onward to SVR! You're on one of the most effective strategies and considering your minimal liver damage, the future health of your liver seems assured. WOOT!

Many of us here understand the stigma you spoke of and have experienced it, as well as the endless questions from the critical in our society. There is the group that doesn't care what others think and there are those that, like you, have decided to keep it private. I think both schools of thought are appropriate. However, the one shared by those in our society that chose to stigmatize others needs to be silenced. The best way to do that is through education and hopefully the recent push by Gilead to do that will go far.

As for your teenager, I would have the test repeated. It will help to put your mind at ease and it's best to confirm the original results. Is it possible to ask her doctor to include the quant. PCR in a group of tests during a standard check up? That would minimize the questions but it won't get you out of range of the teenage complaints because you're making them go to the doctor, lol!! Good luck with your decision!

I'm glad you're here and look forward to following you through Tx and the coming SVR results from it. Good luck and I hope you were finally able to get some rest!

Best,  Tig

Hi everyone,

Time for my formal introduction. I am SO happy to have found you all. Recently joining this forum has been a relief, and made me realize how much this disease has been a lonely 40-year journey. It feels great to have met a group of people with whom I can talk openly about treatment and concerns. There is NO one else in my life  I can do this with. No one.

I've been very lucky. Although I became ill when I contracted HCV 2b in 1975, and I had a series of abnormal liver enzyme tests early on, I seem to have caught a break. Since the late 80s my enzymes have been normal, and an ultrasound and fibrospect test in 2008 showed me with f0-f1 and no apparent cirrhosis, but with a viral load of 9 million (last quant test I can find was many years ago). I was diagnosed in 1993, after discussing my erratic liver history with my MD at the time.  I'm still infected and grateful to have started Solvadi + ribavirin a month ago. I have followed the research keenly for years, and made the decision not to do IFN-based treatments, despite some pressure from MDs, because I have been lucky not to be actively ill.

HCV has been a big secret in my life. I'm divorced now, but my husband knew, and only one friend who, sadly, died of cirrhosis from HCV in 2006, and another who is HIV-positive from a single one-night stand in 1990. Apart from that, I haven't shared with anyone, aside from doctors. The stigma associated with HCV is very real. Though I work in healthcare myself, and tend to have a very non-judgmental attitude to anyone I work with, I have heard plenty of disparaging comments--even from close friends--about people who have this disease. So I keep it to myself, but now I have you.

One worry I have (which I shared last week with my MD) is my teenager. She tested positive for the antibody at 18 months and again at 3 years, but PCR tests were negative, indicating exposure (quite likely at birth) with subsequent clearance. I haven't worried about it all these years, but when I mentioned it at last week's MD appointment, the doc said the tests back then (1999-2001) were less sensitive. I believe the cutoff was <6000 copies. So it is eating at me. Getting her tested again (do I need to?) will open a whole series of questions between me and her, but if it needs to be done, it does. The MD is going to get back to me. The odds are that she doesn't have it, but of course, I want to be sure.  Of course I will appreciate your knowledge and thoughts on this.

Right now, I'm wired and tired from the tx (typical day: to bed at midnight, up at 5:30) but feeling very, very lucky and grateful. Thank you all for being here.

--Dee

Female, age 59, genotype 2b, contracted in 1974 or 1975, diagnosed 1993. Treatment naive, fibrospect 0-1, persistently normal enzymes, started Sovaldi + ribavirin February 1, 2014