My daughter has been diagnosed with Hep C. She is unable to find financial help to help her with the expense of the treatment. She lives in Clarksville, Tn. Can anyone tell me where to turn or where to look?
Sorry to hear of your daughter’s diagnosis. HCV therapy can be relatively expensive; the meds can be obtained for low income patients from the manufacturers; I’ll list phone numbers here:
Pegassist (Roche Pegasys system): 1-877-734-2797
Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157
Finding a doctor to prescribe them and manage her treatment for a reasonable fee might be more difficult; I’m not sure where Clarksville is, but she could try contacting a large teaching hospital and ask for the GI department; they might have indigent or subsidized care program available.
Do you know her genotype as well as how much fibrosis has developed? As an alternative, she might want to consider participation in clinical trial; they offer cutting-edge care and meds for free, and often cover travel expenses as well.
Just a small correction. Roche was bought out by Genentech and now goes by that name. Presumably the old numbers will work for now but maybe in transition. A week ago the old refill number worked but a new number was given to use in the future.
You would not believe the packaging surrounding interferon now. They must be shipping from the Gobi.
Thank you so much for your reply. The doctor that diagnosed her didn't give her a genotype are tell her much of anything else. She has an appointment to see him but is stressing because she is unable to work and her bf isn't working as much as he was due to the economy. She has applied for state insurance but was denied. She is suppose to have 250 dollars for her first visit. The doctor at the health department told her that she is seeing a doctor that works with the low income-no income patients but it doesn't sound like it to me. I live in upstate New York and she lives in middle Tennessee and so my only communication with her right now is by phone and she was tewlling me that everything in her body was hurting. It was even getting hard to walk around the house. Everything I have read, this seems to happen after the treatment but should it be happening now? Thanks again for responding.
No, HCV is largely asymptomatic; most of us aren’t even aware we’re infected until the doctor tests and informs us we have it. If your daughter is suffering from body pains, it’s unlikely a direct result of the Hep C.
There are other issues such as fibromyalgia and rheumatoid arthritis that are sometimes associated with HCV, but the virus alone isn’t especially noted for body pain. Was she hurting like this prior t her diagnosis? If not, the pain might be a result of stress over her newfound illness? She should definitely discuss this with her doctor though…
Regarding any participation in clinical trials, if she sticks to ‘phase 3’ trials, many of the safety issues have been resolved already in earlier studies; at that point, it’s more about studying efficacy than safety concerns. Wikipedia has a decent overview of how these studies work:
If she decides this might be worth considering, she should definitely discuss this with her doctor at her first appointment; he’/she might be able to guide her and possibly point her in the right direction.
You might suggest she request hard copies of all lab and procedure results, and start a personal medical file; this will help her track progress and the data might come in handy in the future to communicate more effectively with other specialists should the need arise.
Good luck, and feel free to ask questions here in the future,
I am not sure how are your daughter is? But if she is under 26 you may be able to get coverage under your health insurance plan.
Under the new health care reform law, plans that offer coverage for children and that begin or renew after Sept. 23 must cover young adults until their 26th birthday—regardless of where they live and whether they are students, financially independent or married. This requirement applies to individually purchased plans and group plans offered through employers.
If your child has lost coverage, watch for a notice from your employer or insurance company announcing a special enrollment period. Plan administrators are required to give young adults at least 30 days to enroll for the new plan year as of Sept. 23.
The timing has been tricky for some families with young adults who lose coverage because they leave college or reach their family plan’s current age limit before the new rule kicks in. In many cases, they will have to wait for coverage until the new plan year begins, typically on Jan. 1.
FYI: I agree with Bill that the symptoms (everything in her body was hurting... It was even getting hard to walk around the house) she is experiencing are not typical of HCV.
Hi there Bill...well you were right, my daughter just went to the hospital last night and she has infection of the kidney. The doctor on call said that one of her kidneys was inflamed and that is what was probably causing her body pain. She did some more blood work and compared it to the last her liver enzyme number is still high ( she said 495) but it was over 500 last time. Does the number go up and down? I am so glad I have found this sight and all this supprt and help...thank you so much from a mom that is worried but praying.
Okay, well at least they found out what was wrong, and should be able to help her deal with it now. Hopefully this can be resolved with a course of antibiotics.
Yes, liver enzymes tend to be dynamic, and will bounce around quite a bit; regardless of whether the patient is in the acute or chronic phase of the disease.
If there is any immediate urgency with her HCV infection, it’s to determine if she’s in the acute stage or not. It’s difficult to know this with any accuracy, it’s more of a guess-and-by-golly diagnosis. If acute (infected for less than six months) there might be an advantage to her entering therapy for it in the very near future. If chronic, or infected for longer than six months, then she has probably has months, or even years to deal with this.
HCV progression is usually something measured in years; even decades, and doesn’t typically require immediate action. Many of us in here were infected in our twenties and thirties, and are only now dealing with it in our fifties and sixties. Generally there isn’t a big rush.
Much better for her to take some time, learn about the disease and it’s treatment, and hopefully let medicine progress a bit more. There are some really exciting advances in HCV management; at her age, she could possibly take advantage of some of these as they mature.
I'm very sorry this has happened to your family. My daughter is 22 but the day after her 21st birthday (when they kicked her off my insurance plan)she had appendicits and ran up a 12k hospital bill - you are NOT ALONE in this (sadly) too many of us know how you feel.
Anyway, she is young I presume (compared to us oldies in here) and probably doesn't have too much liver damage yet. She should live as healthy a liver lifestyle as possible (no alcohol, etc.) to try and keep her liver in good shape while she seeks a solution.
Just know that most of us have had this 20 to 30 years and were OK. Next year new drugs will be hopefully coming out that will make the odds better and work faster.....I don't know how she would get a liver biopsy to determine the amount of damage she already has but with high liver enzymes like they are they can be indicative that a lot of cell death is happening now. when a liver cell dies an enzyme is released so the higher the number the more cell death. I dont know however if the meds she is on for the infection or the infection itself could raise them but you said she had the same number relatively last time so I doubt that is it although I am not sure.
The number (once she begins to kill the virus) will go down tremendously. Mine are now about 15 and 18 but before treatment they were in almost 300.
it's a lot to comprehend but all I am trying to say it likely you have plenty of time.
That is the good news this disease generally moves very slowly and people usually die of something else long after they have had HCV.
Hopefully she can get into a trial somehow that would be the best bet if you really want to do treatment now - they would cover it all but make sure you pick one that is extremeldy promising and in latter stages of the trial if possible.
There are a number of clinical trials in Nashville, not too far from you, as well as several good teaching hospitals, including Vanderbilt University Medical Center.
Check out the website:
In the search box, type in Hepatitis C Nashville and you'll find a bunch of results.
Here is another place that I see coming up in many clinical trials:
Nashville Medical Research Institute
Nashville, Tennessee, United States, 37205
Contact: Ronald E. Pruitt, Site 073 615-383-1727
Give them a call and tell the the situation. I bet they'll ask her to come in for a test to see if she is eligible. Also, most clinical trials will perform all the same tests any liver doc would, except they'll do them at NO COST to your daughter. Hard to beat.
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