Hepatitis C (1 Viewer)

boutte

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I was recently diagnosed with Hep C. I've probably had for 30-40 years. (I let a girl I was "dating" talk me into shooting me up with cocaine back in the late 70s) Thankfully there's a cure now. I just have to take one pill a day for three months and I'll be cured. But, my liver is in stage 4 (out of 5) non-alcoholic cirrhosis. Stage 5 and you're only hope is a transplant.
There is big problem the cure. My copay with Medicare is $3700 a month! Almost everybody is able to get a grant from a private foundation (Health Well in my case) but is that really the best solution? In India you can get the full 3 month supply for $900 dollars and no where in the world pays close to the amount that we do. Actually the UK is pretty close.
I'm grateful for all the help I'm getting but the question of why we, the people who paid for most of the research and development, are the ones who have to pay the most of any country in the world have to once again carry the burden remains.
Even if you nor anyone you care about is dealing with Hep this an issue affects you in ways you may not know. Watch this film. The guy in it is a hero and it exposes the pharmaceutical industry for blood suckers they are and raises questions of Govt corruption and greed.

 

Denzien

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I'm sorry to hear about your liver; I hope this is a miracle cure for you
 

Zack Lee

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Sorry to hear that Boutte but I’m glad there is s way for you. As for our healthcare, well there is too much to even say it’s all tied up to a mess we aren’t supposed to talk about.

my liver was in dire condition when I stopped drinking. Thankfully that thing regenerates in awesome fashion. I will keep you in my thoughts as you battle your way out of this.
 
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boutte

boutte

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Thanks. Once I'm cured (98% cure rate) the damage will stop progressing so even if my liver doesn't heal itself (which is likely because of my age) my liver is fully functioning so I'll be ok.
 

Saint_Ward

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I was recently diagnosed with Hep C. I've probably had for 30-40 years. (I let a girl I was "dating" talk me into shooting me up with cocaine back in the late 70s) Thankfully there's a cure now. I just have to take one pill a day for three months and I'll be cured. But, my liver is in stage 4 (out of 5) non-alcoholic cirrhosis. Stage 5 and you're only hope is a transplant.
There is big problem the cure. My copay with Medicare is $3700 a month! Almost everybody is able to get a grant from a private foundation (Health Well in my case) but is that really the best solution? In India you can get the full 3 month supply for $900 dollars and no where in the world pays close to the amount that we do. Actually the UK is pretty close.
I'm grateful for all the help I'm getting but the question of why we, the people who paid for most of the research and development, are the ones who have to pay the most of any country in the world have to once again carry the burden remains.
Even if you nor anyone you care about is dealing with Hep this an issue affects you in ways you may not know. Watch this film. The guy in it is a hero and it exposes the pharmaceutical industry for blood suckers they are and raises questions of Govt corruption and greed.

FYI, if you haven't already done this for yourself, try the options in note 5.

https://www.healthline.com/health/hepatitis-c/treatment-costs#5.-Help-is-available

5. Help is available​

If you don’t have health insurance, your insurance company refuses to pay for your hepatitis C drugs, or your out-of-pocket costs are too high for you to pay, assistance is available from the following companies and organizations:

Some pharmaceutical companies also offer their own patient assistance or support programs to help cover the cost of their drugs:

Some doctor’s offices have a dedicated staff member available to help patients cover their medication costs. If you’re having difficulty paying for your hepatitis C drugs, ask your doctor for advice.

My wife was on a few different meds for mild psoriatic arthritis, and was always able to get her meds for free or cheap going through various programs.

Outside of that, it gets too political. The simple part that no one should argue, is that Medicare can't negotiate prices (the individual part D administrators can, like blue cross, but not as strongly). Unlike Medicaid, VHA, or DOD, who can negotiate. It would save the Gov't money too. I can't find the medicaid list price, so it's hard to know how much the difference is. All I find are the retail prices.

 

TXSAINTFAN

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Sorry to hear of your diagnoses. There are A LOT of people that have Hep C and aren't aware of it. My liver enzymes were always high when I did blood work back in the day because I drank like a fish. One day the Dr took the extra step to test for Hep C and sure enough there is was.

Oddly, myself and two of my friends had the same Genotype 3E. A rare one as I understand but we obviously shared something or many things :)

Thankfully these days the treatment is so much more advanced that you can do a 3 month course with minimal sides and clear. In 2000 it was a self administered shot of Interferon in the thigh every week and a daily hand full of pills for everything from helping to sleep to keeping me awake. Sick 5-6 days of the week then do it again for a whole year.

The good news about the liver thing in my case was it regenerated a lot after I stopped drinking for a year and a half including the year on treatment so I hope you have similar results with that regeneration.

To your point, there is no reason life saving drugs should cost what they do and thank goodness there is help out there.

All the best with your treatment and clearing this horrible disease.
 
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boutte

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FYI, if you haven't already done this for yourself, try the options in note 5.

https://www.healthline.com/health/hepatitis-c/treatment-costs#5.-Help-is-available



My wife was on a few different meds for mild psoriatic arthritis, and was always able to get her meds for free or cheap going through various programs.

Outside of that, it gets too political. The simple part that no one should argue, is that Medicare can't negotiate prices (the individual part D administrators can, like blue cross, but not as strongly). Unlike Medicaid, VHA, or DOD, who can negotiate. It would save the Gov't money too. I can't find the medicaid list price, so it's hard to know how much the difference is. All I find are the retail prices.

Thanks I got a grant from Healthwell If I didn't mention that in my post I need to do so.

edit: Yeah I mentioned (briefly)
 
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boutte

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I want to thank everybody for their thoughts and responses.

I doing well. No serious side effects from the Epclusa.

The Flomax made me feel like I had Covid or something. Had to quit that stuff. (Typical old man prostate stuff)

All of this is new to me. I'm almost 68 and have never been on meds on my life. (Except antibiotics and couple times I needed pain pills because of an injury.) My doctors were all impressed with my labs till they saw the Hep.
 
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boutte

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FYI, if you haven't already done this for yourself, try the options in note 5.

https://www.healthline.com/health/hepatitis-c/treatment-costs#5.-Help-is-available



My wife was on a few different meds for mild psoriatic arthritis, and was always able to get her meds for free or cheap going through various programs.

Outside of that, it gets too political. The simple part that no one should argue, is that Medicare can't negotiate prices (the individual part D administrators can, like blue cross, but not as strongly). Unlike Medicaid, VHA, or DOD, who can negotiate. It would save the Gov't money too. I can't find the medicaid list price, so it's hard to know how much the difference is. All I find are the retail prices.

I read somewhere that the savings would run into the billions.
 

CajunInVA

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I had Hep C because of a blood transfusion when I was just a week or two old (jaundiced). Didn't discover it until I was in my late 30s, but liver was healthy enough after a biopsy that treatment via interferon wasn't necessary. Then all the new medications showed up and my liver was too healthy to justify the $93k price with insurance. Finally, went on vacation and drank like a fish and did my labs and an ultra sound of my liver right after. Got the liver looking bad enough that the insurance okayed the treatment. It was three 30 day courses of a pill a day. $31k per little bottle of medicine. My copay was supposed to be $3k per prescription, but I called some phone number they gave me and it was reduced to $5. About the best time spent vs. money saved ratio I ever had. No idea how much the insurance company really paid on the remaining $84k. I took Harvoni for 12 weeks, no side effects that I remember, and it was done. I've been limiting my alcohol consumption since and started doing intermittent fasting to try and trigger autophagy with the intent of helping my body heal. Now, my liver labs are all in normal ranges and the last ultra-sound also showed my liver to be as healthy as most people's my age.
 
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I had Hep C because of a blood transfusion when I was just a week or two old (jaundiced). Didn't discover it until I was in my late 30s, but liver was healthy enough after a biopsy that treatment via interferon wasn't necessary. Then all the new medications showed up and my liver was too healthy to justify the $93k price with insurance. Finally, went on vacation and drank like a fish and did my labs and an ultra sound of my liver right after. Got the liver looking bad enough that the insurance okayed the treatment. It was three 30 day courses of a pill a day. $31k per little bottle of medicine. My copay was supposed to be $3k per prescription, but I called some phone number they gave me and it was reduced to $5. About the best time spent vs. money saved ratio I ever had. No idea how much the insurance company really paid on the remaining $84k. I took Harvoni for 12 weeks, no side effects that I remember, and it was done. I've been limiting my alcohol consumption since and started doing intermittent fasting to try and trigger autophagy with the intent of helping my body heal. Now, my liver labs are all in normal ranges and the last ultra-sound also showed my liver to be as healthy as most people's my age.
A couple of months on a Keto diet will burn any remaining fat from your liver.
 

Merl

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My sister was diagnosed with Hep C in the late 80's. She was given at that time an experimental drug, unfortunately she had a bad reaction that caused her to lose about 100lb's (she was a "big" girl at the time) in less than 3 months so they had to take her off it. They later were able to cure the Hep C but not before she later got liver cancer and had to have 2 tumors removed while she waited on the transplant list. Thankfully she got the transplant 3 years ago and has been has had no issues with it at all. Something else I forgot to mention is that she has been HIV positive since '85 and thankfully had a son that is now 35 that has never tested positive and now 2 grandsons.
 

CapitalCitySaint

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I just wanted to post in here some information re: the cost of research and development and correct some wrong information. Contrary to popular belief, the research and development phase of clinical development is lengthy and costly with zero return on investment and *generally* funded by private investors, federal grants, etc. and most treatments never even make it into human trials.

It is not until a product is approved for use in humans that any money can be made - and predominantly FDA approved for commercial use (i.e. no longer in clinical trial phase) as reimbursement for experimental drugs/therapies is different than non-experimental.

It gets convoluted once the product is approved for use in humans and gets acquired by big pharma. The goal then becomes for the investors to recoup their money and have the product become profitable.

Just to provide some visualization re: the length of development:

1623080284931.png
 
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boutte

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Meanwhile just thousands upon thousands of people to suffer and die.

generally* funded by private investors, federal grants
 
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boutte

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A couple of months on a Keto diet will burn any remaining fat from your liver.
I've been on Keto since March 2020 and have lost 100 pounds. I thought the same thing but Hep C has it's own rules.
 

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