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Avatar universal

In need of advice- no health insurance- mom newly diagnosed- Clinical Trials??

Hi- today is my first day here. So many questions. My mom was recently diagnosed - geno 1, stage 3 fibrosis. She is 64 and only known risk factor was a blood transfusion she had as an infant- if that's where she got this she's had it all her life and not known.
I am wondering if someone can tell me the name of this study that is being talked about in this thread by Renee, Willy, and many others. I THINK I've found it on clinical trials and it says they are recruiting some in our area- the study number i see is NCT01701401 - is that the one everyone is talking about??What is the best way to try to get into a study- tell her doctor or email the contact person listed with that study on the clinical trials sight?
. We are beyond frightened and confused- she got a phone call from her doctor explaining the stage 3 biopsy results and recommending the triple therapy with incivek. A quick phone call though was not enough time for her to come up with questions and understand what we are getting into here. In addition to being so scared about the side effects she has NO health insurance. My second question is..Has anyone here gotten through treatment without any health insurance??She is supposed to meet with the nurse at the gastro/hepatologist's office to discuss charity care and drug company assistance for the actual drugs but it seems like with all the side effects and health problems it could cause (possible need for Procrit, etc...) it might be disastrous for her to undertake the triple therapy tx with no insurance. maybe she should wait till next year when she gets on medicare? Does medicare pay for these drugs?? I feel so lost and have no idea who to ask. I am thinking this study would be the way to go- no interferon or incivek side effects and it all appears to be paid for. She feels absolutely fine- should she wait for a study or the new sofosbuvir to actually come out, or at least wait till she's 65 and on medicare before undertaking treatment? Any answers/ thoughts would be so very appreciated.thanks
36 Responses
2059648 tn?1439770265
Go to "DiscoverHepC.com" or call 1-877-309-5705.  "ClinicalTrials.gov" can
give you lists of trials and how to access them.  The "discoverHepC.com" site
just appeared on Television.  They are looking for participants.  It might
be in your area.  Also, it sounds like your mother has been referred to a doctor and I would see what kind of assistance she can obtain.  You might be surprised at the assistance now being offered.  I don't know about the Medicare and I'm sure someone on the forum as that knowledge to confirm if it would be covered or not.

Best to you and your mother
3159077 tn?1356034731
I did my whole treatment (triple w/Incivek) with no health insurance. I started out at a free clinic where I got diagnosed, was referred to a county hospital for biopsy, and treated through the hospital's hep C program. I think most cities have these types of clinics for the poor or uninsured. My Incivek was supplied by Vertex through their patient assistance program. My PegIntron and Ribavirin was supplied by the manufacturers at no cost and was obtained by the hospital for me. All tests, exams, visits, etc., were at no cost to me because I was low income. I think a trial covers all costs for patients too. I was stage 3 and chose to treat instead of waiting. I don't know anything about Medicare. I'd say a trial or a county clinic might be her best bet.
1815939 tn?1377995399
Welcome to the forum. I am sorry that your mom has Hepatitis C and is having these problems. I won't go into the study question because others who know more about the studies can respond to that. I will try to adress some of your other questions.

"My second question is..Has anyone here gotten through treatment without any health insurance??"
Yes, people have. Most large medical centers, especially university affiliated medical centers, give free care and/or financial assistance to those who need it. I do not know where your mom lives but there should be a university affiliated medical center within driving distance. Contact that facility and ask for their social services department and/or their financial assistance department, tell them your situation, and ask them if your mom can get free or sliding scale medical assistance. If her income is low enough, she will probably get everything free.

"She is supposed to meet with the nurse at the gastro/hepatologist's office to discuss charity care and drug company assistance for the actual drugs but it seems like with all the side effects and health problems it could cause (possible need for Procrit, etc...) it might be disastrous for her to undertake the triple therapy tx with no insurance."
She should still meet with the nurse and see what they will offer. Have a list of questions to ask the nurse in terms of assistance with all of the medical problems, not just the Hep C meds, but everything that could come up.

"maybe she should wait till next year when she gets on medicare? Does medicare pay for these drugs??"

If your mother gets Medicare Parts A and B then Medicare, generally speaking, will cover 80% of costs such as hospitalizations, lab, X-rays, tests, office visits, etc. (Be sure the doctor accepts Medicare assignment (agrees to what Medicare will pay). Your mom gets Medicare Part A free but she will have to pay for Medicare Part B. It is about $100 a month, but she must get it. It is deducted from her Soc. Sec. check. She will need to get what is called a Medi-gap insurance also. This is insurance that covers what Medicare does not cover (that 20%). She should shop around and find a good plan that picks up the part of the bill that Medicare does not cover. Neither Medicare Part A or Part B pays for prescriptions. Therefore, she also needs to buy Medicare Part D insurance, which is the prescription drug insurance for people on Medicare. She will need to shop around for this type of insurance also. But she needs to buy it. If she does not buy Medicare Part D prescription drug coverage when she first signs up for Medicare (actually I think there is a 6 month grace period) then every month that she waits before she buys it, she will get penalized. In other words, as an example, If she signs up for Medicare in 2014, but does not buy the Medicare Part D in 2014, then, if she buys it in 2015 or 2016, she will pay more every month for Medicare Part D than if she had bought it in 2014. Anyway, this is a long explanation, but you can see that just waiting for Medicare is not a magic bullet. Medicare is complicated and they do not pay for everything. She will still need that Medi-gap insurance as well as Part D.

Now, another thing about waiting. Your mother is 64 and she has Stage 3 fibrosis. Liver fibrosis tends to pick up speed as we age. At 64 she is probably progressing faster than she was 20 years ago. Also, there are only 5 stages.

The fibrosis score is assigned a number from 0-4:
0 = no scarring
1 = minimal scarring
2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
4=cirrhosis or advanced scarring of the liver

In addition, your mom could have Stage 3 in the part of the liver they biopsied, but she could have Stage 4 in another part that was not biopsied.

Stage 4 is cirrhosis. Your mother should definitely treat before she progresses to cirrhosis. One does not want to wait around to treat and develop cirrhosis while waiting. It is more difficult to treat people when they are cirrhotic (they tend to have more complications) and the cure rate is considerably lower in cirrhotics than it is in people who do not have cirrhosis. So she should treat sooner rather than later.

Please come often to the forum and ask as many questions as you wish. Hopefully we can help you and your mother.

Wishing the best for you and your mother.
766573 tn?1365170066
I am very impressed how you picked up that treating with the currently available protease inhibitors comes with the potential for side effects. Not having the resources to treat them can be very scary and could have an effect on treatment adherence.

The only think I can think off offhand is why her doctor recommended Incivek (Telaprevir) as opposed to Victrelis (Boceprevir). Vicrelis comes with its share of sides but they are different than the Incivek sides. If waiting is not an option and a trial does not come up then I would ask.
Avatar universal
Wow, thanks so much everyone for taking the time and writing me- I've already learned a great deal from your comments and have a better idea of what to ask the doc now (if we can manage to get an actual appt to discuss results and treatment- so far it was just a phone call!)
Avatar universal
Pooh, can't tell you how much I appreciate you taking the time to give me all that info- I actually think I understand Medicare now somewhat!
And most importantly you explained what was not explained to us by the doctor that stage 4 WAS cirrhosis. He told us that in 5-10 years it COULD progress to cirrhosis and he recommends to treat. Do you hear of anyone who just stays at stage 3 at it never really progresses to cirrhosis?
Avatar universal
Thanks- it is good to hear that it can be done if need be without insurance. If you don't mind me asking how did you do with the treatment? Were there meds you needed as a result of side effects and were they paid for? I keep thinking what if she became anemic and needed Procrit - would the clinic pay for that too I'm wondering. Also, I am new to this site and tapped the screen in the wrong place I think and the REPORT icon came up next to your post!! I really hope I didn't report your post lol! If so I'm so sorry- I didn't mean to!
Avatar universal
Thanks for the info on the 2 different PI's..I didn't realize there were even two choices and I tried my best to research the two kinds. To me it seems , but i have only started research so I'm not sure, that the incivek can cause an awful rash and diarrhea issues, but the other one is more likely to cause anemia? The incivek looked to be slightly more effective but maybe the other one was somewhat better tolerated despite the anemia risk??
Unfortunately I'm worried that my mom won't have much of a choice on this and a lot of things with this treatment with the no insurance issue. Wondering if the 11 months until medicare kicks in when she turns 65 is too long to wait.
3159077 tn?1356034731
No problem on the report button--I've done it myself. I treated for 24 weeks and was Und. at weeks 4, 12, and 24. I'll know in Sept. if I attain SVR. I didn't need any rescue meds but if I did, they would have been provided to me at no cost. I paid for some prescriptions for rash and itching but they were cheap. I would rather have had health insurance but I picked a good time to be unemployed and broke. I feel my care was excellent.

It's great that you've already learned so much about things like Procrit and you'll be a great advocate for your mother. You can look at my labs by clicking on my name and going to the photos section in my profile. It does take some time to get things in motion, so if you're considering the clinic/county route I'd try to get an appt. or walk your mother in soon. You can always go another route if you change your mind later.
1815939 tn?1377995399
"He told us that in 5-10 years it COULD progress to cirrhosis "

That is possible (that it would take that long), but it is not something I would want to take my chances on. We have people on the forum who have progressed from Stage 1-2 fibrosis to cirrhosis in only 2-3 years. Liver fibrosis is not linear. No one knows how fast anyone is going to progress, but at stage 3, it is urgent to treat sooner rather than later.    

The other thing is, just because she had Stage 3 fibrosis in the biopsied part of her liver does not mean it is Stage 3 all over the liver. She could already have Stage 4 fibrosis (cirrhosis) in part of the liver that was n ot biopsied.

"Do you hear of anyone who just stays at stage 3 at it never really progresses to cirrhosis? "

I suppose that is possible, but I don't know of anyone. Liver fibrosis picks up speed as we age. That we do know. There are other things to consider too. The longer she waits, the more likely she will develop cirrhosis. Also, her chances of getting liver cancer increase the longer she waits. Plus, the earlier one treats the better chance one has of the damage regressing (liver function and histology improving). In addition, at age 64, other health problems could start to arise and some of these health problems may preclude her from doing treatment. There are many people who cannot treat because they developed a health problem that excludes them from treating. She would want to treat before developing any of these problems. In addition, treatment can be a lot harder on cirrhotics, and the SVR rate is lower in cirrhotics. If you ask any cirrhotic, pretty much all of them will say to treat now, before becoming cirrhotic.

We have a lot of cirrhotics on the forum. Many of them had tried treatment in the past when it was just Interferon and Ribavirin and the treatment did not work for them. Some had tried treatment 3,4 ,5 ,6 or more times. When the new Protease Inhibitors came on the market (Incivek and Victrellis) in June/July 2011, many of these cirrhotics were ready and  waiting to treat with the new drugs. This group of people who started triple med treatment in the summer and fall of 2011 have now finished treatment and many of them have attained Sustained Viroglogic Response (cure). Some did not and some are waiting for transplants. It is in your mother's best interest to treat as soon as possible.

I realize you need to get the financial part figured out. But there are ways to get the care. If you tell us which state your mother is in, someone may have information to help you out.

As far as the meds go, the Incivek can cause more rash issues and more anal rectal problems. But you take the Incivek for only 3 months and then you are done with the Incivek. You have to continue the Interferon and Riba for either 24 or 48 weeks total depending on certain factors. The Victrellis has more issues with anemia than the Incivek and you have to take the Victrellis longer, either 24 weeks or longer depending on certain factors. They both have somewhat comparable results in terms of SVR.

180992 tn?1383377657
1-(800) GILEAD-5  ( 800-445-3235 ) between 8:00 a.m. and 5:00 p.m. Pacific Time.

Renee, Willy and I are in the Gilead trial.  There are also others on clinicaltrials.gov.
1652596 tn?1342015226
i'm so sorry that your mom has hep c.  i went through a clinical trial with scripp's research in san diego.  i had the best care and my study nurse was fantastic.  i reached SVR last november 2012.  so i got cured and i was paid for my participation.  i had no health insurance at the time.  good luck to your mom.  p.s. i was 62 at the time.  belle
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