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That is my reason too - even with the astronomical amount of money I pay for coverage because of pre-existing hep C, I still can't afford it since I'd be out-of-pocket the price of a new car. But you would be amazed at how many people have insurance and are just plain too scared - and honestly, I don't blame them. Thanks for your feedback and insight. Lucinda
I am also an RN who has Hepatitis C. I have worked in Harm Reduction and also worked with HIV positive clients. I had heard all the horror stories of Hep C treatment when I worked in GI Nursing and had seen the liver biopsies being done and patients who complained of the side effects and once I was diagnosed and presented with treatment, I was scared out of my mind. Would I be able to take care of my kids as a single Mom. How would I live on disability and pay the bills. I was diagnosed in 2003 and started on Pegasys and Ribviron. It was a long year and the side effects were not horrendous, but I lost a great deal of weight, had trouble swallowing and suffered from terrible headaches. I think that one of the problems that keeps patients from getting treatment is the horror stories they hear from others who have done treatment. Education is the key to getting patients into treatment and getting those who are at a high risk to test. I am currently at undetectable levels and a stay at home Mom. I plan to continue my education in a few years and go into Public Health. I do provide harm reduction education to an online website for IVDU and others at high risk. I enjoy being able to help those who are high risk and feel I am advocating Harm Reduction, which is so important if we are to eradicate this virus. Thanks for letting me share.
well lucinda, it is not fear that is stopping me from seeking treatment; it is funding to get that treatment. i work for a living and do not make enough to pay the 450 dollar a month premium for pre-existing condition coverage(texas) quite frankly, the people i have encountered with hcv ALL say that this the reason they have not sought treatment. i am afraid that many more will have to die before big pharm and the government wake up. thank you for all you have done for us.
Lucinda K. Porter, RN
Thank you for taking the time to write - your thoughts/insights were so well-expressed. The Harm Reduction community is richer for having you on their side.
January 11, 2013