My question comes at the end of this inquiry. I am moved to write to my congressman concerning my non-inusuarable state of health. Not only do I want to send a letter, but I desire to belong to a coalition fighting to move the hearts of our congressmen so they may have enough empathy for people like me that may see the necessity of create new laws or reforming old ones in the realm of health insurances. Can you suggest where I might start to do that. I am a single mom, still raising a twelve year old son. I worked to support my family while enduring not one, but two treatments, and although I have not been checked for over two years I know my body well enough to know my hep has returned after a brief hiatus from the disease. Trying to work full time is now becoming a struggle for me. I have no family to speak of to help me. Working is my key to freedom. Disability takes a long time to get. I have no one to put a roof over our heads for the length of time that process takes, let alone the fact that I have no left over money for doctors or insurance. I have resolved myself to the fact that this disease will take my life and in the process reduce any quality of life, not only for me but for my son as well. It seems likely we will end up living homeless on the streets of St.Louis. Not quite the demise one wants. My son becomes then too becomes a victim. My question. If I cannot make a difference for myslef, what can I do to make a difference for my sons generation? A medically educated opinion/veiwpoint or map to follow is welcomed. God Bless you all.
you would get disability before you ended up homelesss. we all have thoughts like those. what will happen to us if we dont get well, if we are left alone, if we cant work, if we lose our mental capacity.etccc.....
there is one site that does some activism i believe. its the national hepatitis coalition. they used to do a yearly march at wash. d.c. i believe. this disease is not getting the funding it needs for research like HIV is. and many more people have this. baby boomers especially.
youve been thru so much with and must be a very determined person to have worked thru 2 treatments. your son is one blessed boy.
you should really get checked to see how you are doing with your blood work. it may not be as it seems... will be saying a prayer for u....
There are a couple of local women who are politically active in raising the awareness of HCV. They started a local HCV support group in Minneapolis, MN called LiverHope. At the national level they have gone to Washington several times to participate in legislative hearings and workshops surrounding the issues that people with HCV have. Nationally the group they work with is the National Hepatitis C Advocacy Council, North Miami, FL, Andi Thomas, 954-931-8463. Either this group or the people locally could give you more direction if your interested in getting more politically active in this area. Address for the local organization is : LiverHope Support Group, Helen Clark & Pat Buchanan (Co-Facilitators), Website: www.liverhope.com
I believe as long as you keep "continuous" coverage, you cannot be denied a new policy. I switched insurance twice early in tx and it was scary, but all was OK. Even if you were to lose your job, you could pick up your COBRA (that's what I was on when I began tx) and they could not deny you. With a new job, they also cannot legally deny you as long as you have had continuous coverage. Then, when my COBRA ran out, I went onto an individual policy and again, they could not deny me due to pre-existing because I had kept continuous coverage. Very important to keep coverage without lapse!! Cost me an arm and two legs, but was less than the meds would have cost.
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