Hep C is there new med.comming this fall 2014?

[Sunnyshadow77]

Is it a for sure thing im gynotype 1a  I hear there will be a new medication out in Oct. where  i wont get sick or loose my hair is that true or possible my doctor wants me to start ribavirin sovaldi pegysys , then he tells me about a new med that will be out in the fall  im greatful that my insurance is going to pick this up so I can get cured. IF there is a chance that the side effects will be much better 3 months from now hopefully im praying no hair loss or if so very little that  i wont get sick or weak I really cant efford to loose my job . My work is very physical  6 to 9 hour workout is what it seams I cant loose it . So my fingers are crossed anyone with any new information about this new treatment side effects? when ? Is all insurance going to pick it  up ?  Is it that close to being available that I should wait? Thank you for your help

[AWorriedMom]

The new combination drug was approved on Friday. It is called Harvoni and is manufactured by Gilead. Your question about access to the drug is hard to answer. It seems that for people on Medicare or Medicaid, it depends in which state you live in. For example, if you live in Alaska, you have to prove that you are drug and alcohol free for at least 6 months before the drug will be available for you. In some other States you may need a biopsy to prove extensive liver damage, as some policies will only approve treatment for those with Stage 3 or 4 liver disease.  Some insurance companies are only approving 12 weeks even if your doctor feels your case warrants a 24 week treatment. The Fair Pricing Coalition continues to fight hard for access for all patients.

It is true, that side effects, compared to the old interferon treatments, are much easier with the all oral meds. There is no hair loss reported. The most common sides are fatigue and headache. For those previously treated with interferon, side effects are almost nonexistent. For those who are previously treatment naive, they report more side effects but stil very doable.

I hope you have an easy time getting access to treatment and an easy time with side effects.

[Livelife777]

Tnx Lynn
....Kim

[flyinlynn]

Bluemetal has gone away for about a month now I think he was suggested to take some time off from the site

[Livelife777]

Whoa
Back up a minute here. Blumetal are you saying that with the new meds they are going to go lottery style (kidding) or denying Tx because we are not whacked out in the head enough?  Not attempting a debate, rather wondering is there such a shortage of these new meds that only the very ill have accessibility?  Do hope that's not the case but am honestly uninformed regarding specifications related to rationing.  If this is so, shame on our
country and the governing powers that be.

Interferon as far as I know has been deemed unsafe in certain situations
and my impression was that it is soon to be taken off the market.  In certain
genotypes understand that has the best chance for a "Cure" but at what
physical and emotional expense to the patient.

Please tell me this isn't so.
.....Kim

[flyinlynn]

Well it is a lot to do with how much liver damage you have and your genotype. If you are GT 1 probably Harvoni just approved on Friday

But your doctor knows more than me especially about your condition

Good luck

[slotgirl]

Reading all these posts has me so confused. It sounds like their are so many treatments available but certain criteria must need to be met for the better treatments. I also have PCT Porphyria caused from the hep C and iron is my enemy. I have waited 3 months to finally get to the gastroenterologist and will be meeting with him on Monday to discus what my course of treatment should be. I guess Im trying to read here what the best treatment seems to be .

[flyinlynn]

Why is it so difficult
Because the FDA wants to try to make sure a drug is safe before it is released.

Is it going to be too late
I have known I have hep c for 25 years and probably have had it for 36 years. From what you have said it sounds like you are still early so yes you should have time as long as your liver is still functioning well hep c is a very slow moving illness and even those who have had liver failure some have been able to get transplants. So yes you most likely have time what does your doctor say they are most likely correct.

Good luck
Lynn

[flyinlynn]

I have no thoughts about depression and treatment I have no knowledge or experience with that area.

[Sunnyshadow77]

Why does it have to be that difficult to get well are they ever going to put this med on the furmilatories? Is it going to be too late by the time they do this

[bluemetal]

A test result or other document showing that you once were treated for anxiety or depression in the past may be insufficient to persuade the insurance co. They are probably going to require something from a psychologist or psyc-related therapist stating specifically that you cannot take interferon/ribavarin due to current psyc condition. You can rely upon old records if you want but remember, the fact that your no longer being tx forv any psyc-related issues suggests that you have no psycrelated issues anymore. As such, if there are no other serious physical medical conditions, you will have a difficult time getting the Sov/Led tx due to new stricter guidelines rationing this drug.

[flyinlynn]

Hi Sunny

Most of us have copies of our tests for reference. They are your records all you have to do is ask for a copy.

Good luck
Lynn

[bluemetal]

you had me worried there for a minute girl. 65 billion copies of the virus in your blood stream at your age would have given u the world record i beleive.
Get an appt. with  a psyc or psyc-related therapist. Your having real bad off-on anxiety and occasional depression. Do not ask for meds, let them decide whether to give any. In fact let him know that your concerned about your liver condition and that drugs may tend to build toxins in your system. He could always suggest meditation stuff, etc. The main thing u need is an official letter in record from him stating to the effect that interferon and ribavarin would not be suitable for you in your mental condition. The truth is that either of those drugs wouldnt be suitable or safe for anyone in my opinion, especially someone with prior psych history.  Ask for that letter during the second or third visit. Just get it in record. When its time for insurance reveiw for tx on Sovaldi/Led, you can get a copy of the letter. Good luck and take care.

[Sunnyshadow77]

your right it is  1290000 .I did type it wrong how do I get that on paper do I just tell my gastroenterologist  I have been on antidepressent in the past for anxiety depression NOT NOW. Should I go to my primary doctor and get a  prescription for Zoloft . I hope its that easy . Will a doctor put me on it when I tell them I have had prior diagnosis of anxiety depression or is there other steps to do this I forget Am I going have to go to a psychologist and get rediagnosed??????  Thank you

[bluemetal]

See: http://www.unboundmedicine.com/harrietlane/ub/citation/9840128/Factors_associated_with_severity_and_disease_progression_in_chronic_hepatitis_C.  Also: Medscape:Predicting Progression to Cirrhosis in Chronic HCV Infection.  See also: Tassopoulos NC, Papatheodoridis GV, Katsoulidou A et al. Hepato-Gastroenterology 1998:45 (23)

[bluemetal]

Are u certain that HCV RNA number is correct? 12900000 ? Did u type that correctly? iu/mL is mililiter which is 1/1000 of a liter. If there are nearly 13 million copies of HCV in 1 ml of blood (approx 1 drop), how many do u think are in 1 full liter?  Yes, 13 billion. There are roughly 5 liters of blood in the human body.  Im not pointing this out to alarm you. Number of copies have little bearing on overall health and immediate liver functioning.  But as a realist I must direct you to the link in this reply-post in regards to HCV genotype and number of copies in blood being an indirect cause of cirrhosis. This particular genotype proliferates replication and aggrivates ALT/AST levels which in turn ARE direct causes. It annoys me when people downplay the gavity of a situation in order to provide a patient with a false sense of security.   The reality is that although your not in any immediate danger, you are at a crossroad or threshold. flyinlynn and 48 hours are correct--a drug tx will be ready for market this autumn, early winter latest thats specifically designed to kill this genotype of the virus. The only real obstical your faced with is insurance because new laws and guidelines on who get this drug will be enforced to the letter. You must build a case for the insurance reveiw board and be aggressive with your doc in having him present it. If u dont have any serious physical conditions to be exempt from interferon/rib, than get a psych eval (anxiety, depression, etc) and have it on paper.

[Sunnyshadow77]

thankyou for responding to my post no I don't have cirrhosis my doctor ordered an ultrasound last month and he tells me my liver is healthy blood work is normal except AST is high 80 reference range is (15-37)   Genotype 1a  on my ultrasound paperwork HCV RNA Detect/Quant, is 12900000  whatever that is  my doctor did say im not gonna die if I don't get treated asap . I AM GOING TO GET TREATED I WOULD MUCH RATHER TAKE THIS NEW MED THAT IS GOING TO BE OUT SOON THE ONLY QUESTION IS WHEN  AND WILL MY INSURANCE PICK IT UP HOW LONG WILL ALL OF THE APROVAL TAKE I DO WANT TO GET STARTED BUT ILL WAIT IF ITS LESS THEN A YEAR JUST GOTTA STAY ONTOP OF MY INSURANCE THANK YOU FOR RESPONDING TOO MY POST MUCH APPRICIATED

[flyinlynn]

Hi Sunny
Welcome to the community.

There are new drugs in the pipeline which are expected to be approved this fall.

One is a fixed dose combo pill of Sovaldi Ledipasvir which is having near perfect results with genotype 1 hep c. This med is supposed to be FDA approved on October 10 but will take several weeks to become available and be added to insurance formularies. Hopefully November - December timeframe. The side effects reported in clinical trials have been relatively mild for most patients. As far as if your insurance will cover the meds that will be the companies decision. But currently the maker of Sovaldi has been offering help for patients to afford the medicine if they are having problems getting coverage and I believe they would do the same for the new unreleased medicine.

Are you seeing a hepatologist? Do you have cirrhosis? Have you treated before? These questions about your health can help to decide what is the best treatment for you and also if you can afford to wait.

What has your doctor said about waiting for the new meds? If you don't have cirrhosis you may be able to wait.

Good luck
Lynn

[scottie24]

In a group of Eat German women who were infected in the 1970s, less than 4% who had normal Body Mass Index developed cirrhosis after 35 years.  About 22% who were obese had developed cirrhosis after 35 years.  Of 287, 9 had died of hepatic liver failure after 35 years.  

The above figures come from a free-text journal article in Med Line.  

http://onlinelibrary.wiley.com/store/10.1002/hep.26644/asset/hep26644.pdf?v=1&t=hz4zkbyk&s=5be2a368ca1ea085846bc2cc20107b3c0e83ff81

Similar numbers come from a group of Irish women - 2% had definite or probable cirrhosis after 17 years.  Most were fine until they were diagnosed, whereupon they developed severe anxiety.  Their diagnosis was made during a period of highly publicized scandal over their initial infection, which may have added to their anxiety.  

http://www.nejm.org/doi/full/10.1056/NEJM199904223401602#t=articleDiscussion

A reasonable mind could conclude that a smart course is to take really good care of yourself, enjoy life and wait for a drug that doesn't whack out your immune system.