For You New Guys: Now What?

I wrote this article for www.hepatitiscnews.com.  Visit their site for more information.

You have hepatitis C (HCV) and have only heard scary things. Your best friend is knowledge, not just facts. It is no good to just bring your liver to treatment. You must bring your mind as well.

Quit drinking or taking drugs? If not, come back when you do.

What to learn:

Doctors: Your insurance will pay the same amount for a hepatologist or a gastroenterologist. Go for a hepatologist. All he thinks about is the liver.

Treatment Lingo: Learn it. This language is the only way you have to talk with your treatment team.

  • VR: Viral load – number of viruses per ml of blood is written      in logs
  • Log: simply a way to not write all the zeros in a number. 1,000,000 is 1 million viruses per ml of blood, is 6 logs
  • RVR: Rapid Virologic Response – hep C undetectable at week 4 of  treatment
  • NR: Null Response – no decrease in virus at week 12 of treatment
  • PR: Partial Response – small decline in virus at week 12 but still detectable at week 24
  • SVR: Sustained Virologic Response – undetectable virus 6 months after treatment completed. The goal!
  • Genotype: Most people in the US are Genotype I. Learn yours. Treatment choices are based on genotype

Depression: If you are like me and inclined toward depression, ask your doctor if you can start antidepressants before treatment. It’s easier to get ahead of depression than try to catch up to it. This can make the difference between completing treatment and not.

Available Treatments: Currently the standard of care (SOC) includes Interferon, which is harsh. Soon treatments will be available without Interferon. Can you wait? Talk to your doctor. All treatments include at least 2 drugs to attack the virus at two different sites in the life cycle (think of killing fleas on your pet).

flea life cycle

Another approach: I am a scientist as well as a treatment success. Here is what I did and why: I looked up clinical trials in my city at clinicaltrials.gov. I found a research site and participated in trials there.

The advantage: Newest treatments and a team focused on my health with close monitoring of my whole body, not just my liver. All treatment is free and you can opt out if you don’t feel comfortable.

The disadvantage: You must commit to follow the protocol. My first treatment drugs were SOC and didn’t work so I went through treatment again. But, this was successful and I am cured!

One note of warning: They are researchers and so they don’t know all the answers to treatment outcomes. Phase III means that many patients have experienced this drug and more is known about safety. Phase II means the drug has only been in a few humans, so less is known about safety. I suggest only participating in a Phase III trial if you aren’t comfortable with the unknown.

I wish you the best and suggest taking it one day at a time.

on the farm

on the farm

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Things Not To Say to Someone Who Just Completed Hepatitis C Treatment

Now What?

Now What?

  • You were in treatment?  I just thought you were aging badly.
  • Now make sure you don’t get it again (my personal favorite)
  • How do you celebrate without alcohol?
  • How can you be sure you are cured? I’ve heard it comes back.
  • I heard of a guy that went two years then his liver blew up.
  • Some guy finished treatment then killed himself.
  • Can you talk to my husband?  He won’t quit drinking and drugging.
  • I saw a website that says St John’s Wort works better.
  • Want to volunteer at the hospice?
  • Too bad you have to give up your handicap placard.
  • Glad you finished.  Maybe you won’t be such a moody A Hole now.
  • You should have waited for newer treatments.  They are better.
  • Now, shut up about your symptoms.
  • Good, now get off your butt and do something.
  • Now what?

And Now For Something Completely Predictable: Law Suits with Hepatitis C Treatments

Hepatitis C Research:  This  trend to law suits was completely predictable, but right?  I think not.  In the words of a friend of mine “Fuck me, what do I know?”

Artwork:  Lapland Hand

I don’t know the answers, so I raise my hand to ask

Hepatitis C patients want to sue drug companies post  research treatment, claiming permanent emotional and mental damage. How do they know which came first? 

  Here is one site I found while looking into the topic, www.lloydwright.org    At the end you will note an absence of comment from me. I don’t know why I am lacking compassion. Am I a patient?  Am I a scientist?   

http://lloydwright.org/messages/content/i-was-better-hepatitis-c  I was better off with the Hepatitis C!

Name:

Mariel

Your Question for Lloyd

I was wondering how I get involved in the class action against interferon. While taking the drug, I dropped down to 79 lbs, and now have Gastroparesis and Crohns disease as a result.

The interferon paralyzed my stomach, and I am considering having a pacemaker put in because I am constantly vomitting and nausea us, and dropping dramatic weight. I am on disability because of this, and its caused me immense mental distress, as well as my daughters.

Please tell me what I need to do to get involved. I can not work and there for am unable to provide the life I wanted. I was better off with the hepatitis C! 🙂

I have just finished taking Interferon and Ribavirin for Hep C

I have just finished taking Interferon and Ribavirin for Hep C. I took it for 6 months and was cured of HEP C; however, no my liver and kidneys are suffering. Two months ago I had a perfect liver besides some fat. Now, I have Cirrhosis spots and the dr. said it has acquired 2 YEARS of damage in 30 days.
I was wondering if there was any lawsuit I could join or any other programs? I now am facing cancer most likely and have 4 children and nothing to leave behind to help them.
Thanks you. -Jim Thomas

Long Term Sides that ruined my life after hep c treatment

i WANT TO SUE FOR PAIN AND SUFFERING!!!!!

Can you help direct me?  “They never told me that I would be disabled permenantly when I treated in 2006,  My nervous system is a mess.  I have severe panic attacks, depression, eyesight is really bad, still ache all over, agoraphobia.   This has brought me down from being a productive & employed ‘to being below poverty level (cause I’m unstable i cannot hold a job for long) and I have been on the brinks of homelessness for the passed months;  I’ve been suffering since 2006.

This treatment ruined my life!

Sent: Thursday, November 10, 2011 3:55 PM To: LloydWright Subject: [Contact Lloyd] Severe disability resulting from Interferon + Ribavirin treatment in 2003. I was never warned and I’m seeking legal advice and/or recourse
_Smith sent a message using the contact form at  http://lloydwright.org/messages/contact.
post Interferon nightmare

In September 2008 I started Peg Interferon. I stopped after 6 months. Here is my story:
My name is Nick I am a now 30 year old father of an almost three year old little girl named _____. ( D.O.B.: ) and husband of a 32 year old wife named _____  (D.O.B.: ) I was 27 going on 28 years old when I found out I got the Hep. C Virus. About 6 months to a year before that I was giving plasma every 6 months until finally the next time I went in to give it I found out that recently I caught the Hep. C virus.

phase II clinical trial SOC and Boceprevir – Join the Suit

Lloyd Wright, An email friend referred your site. I am currently in a federal law suit for permanent injury sustained from my participation in a clinical trial of PegIntron / Rebetol / Boceprevir. I suffer multi-system sarcoidosis with occular, renal and pulmonary involvement caused by PegIntron and Rebetol treatment.

Lee Prokaska The Hamilton Spectator Canada (Jun 3, 2010)

It is virtually impossible to put an accurate and true dollar value on a loved one lost.

But when a mechanism is set up to try to do that, when responsibility is accepted by government, it is unacceptable for families to lose yet again by failing to receive the full compensation they deserve.

Group to sue over hepatitis C

People with hepatitis C have formed a group to sue the government and drugmakers for damages over their infection during mass vaccinations even though they have no clear evidence, such as medical charts.

  www.heplikeme.com

Hepatitis C: Is that a Real Poncho or is that a Sears Poncho?

Mothers of invention, Theatre de Clichy, Paris...

Mothers of invention, Theatre de Clichy, Paris, 1970-1972 (Photo credit: Wikipedia)

“Look here brother,
Who you jivin’ with that Cosmik Debris?
Now is that a  real poncho or is that a Sears poncho?  Hmmm, no foolin’?”

Frank Zappa and the Mothers of Invention

Do you have a liver doctor (hepatologist) or a gastroenterologist?  Many people start out with a liver doc then over to a local gastro for long-term treatment management.  Kinda like selling your mortgage to a broker that does home mortgaging on the side but commercial financing is his bag.  I know, lame example.

Now a gastroenterologist is trained on the liver but probably hasn’t thought much about it since his fellowship at school.  Why?  Because his specialty is the GI tract (esophagus to anus).  In fact many gastroenterologists spend so much time with endoscopy or colonoscopy, they are refered to as “Scope Monkeys”.   The liver is not part of the GI tube.  No foolin’

Follow the GI tract from esophagus to anus. Then look at the liver.

Members of the two GI national associations, the American Society of Gastroenterology and Endoscopy (ASGE) plus the American College of Gastroenterology (ACG), do not attend meetings with the American  Association of the Study of Liver Disease (AASLD) and visa versa, unless presenting new research data.  But they don’t attend each other’s lectures. I know. For decades I attended the joint meetings of ASGE and ACG. It is difficult for a gastroenterologist to stay current on evolving treatments for Hepatitis C.  And these days the treatment (r)evolution is on.

Two weeks ago the AASLD and the EASL (European Association of the Study of the Liver) met in Prague to discuss Hepatitis C and:

  • Global scale intervention and control of HCV – OK
  • Prospects for a preventive HCV vaccine – OK
  • Review of new drug treatments in development such as Nonnucleoside inhibitors of HCV RNA polymerase, NS5A inhibitors, and Cyclophylin inhibitors – Important to you
  • Effectiveness of triple combinations in cirrhotics Important to a lot of you

Why do I mention this?  Here is an example of why.  Treatment of Hepatitis C is complicated and lasts a long time. The ribavirin induced anemia is treated by dose reductions based on your weight.  If your red blood cells (RBCs) drop below 10 mg/dl, Ribavirin is reduced by 20%.  If the RBC number does not increase in a few weeks, dosing must decrease another 20%.  But the dose cannot drop below 600 mg.  Now adding the protease inhibitors telaprevir and boceprevir,who knows what happens to RBCs in you?  Does the gastroenterologist know that?  Doubtful.  Does he know about the new drugs that work at different sites on the virus?  No.

Your insurance co-pay is probably the same regardless of which specialist  you visit.  Why not go with the real poncho?  BTW I couldn’t find a real poncho, only a Sears type poncho.  No foolin’

References

http://www.songmeanings.net/songs/view/78854/#mjbJdWKO6aRwIzk0.99

http://www2.kenes.com/PRAGUE2012/SCIENTIFIC/Pages/ScientificProgramme.aspx

http://www.natap.org/2012/APASL/APASL_08.htm

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_anemia.pdf

Hepatitis C: Beware the Jabberwok

 Hepatitis C:  Beware the Jabberwok

Through the Looking Glass

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

‘Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!’

He took his vorpal sword in hand:
Long time the manxome foe he sought 
So rested he by the Tumtum tree,
And stood a while in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One two! One two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

‘And hast thou slain the Jabberwock?
Come to my arms, my beamish boy!
Oh frabjous day! Callooh! Callay!’
He chortled in his joy.

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.    

  

If you listen to a scientific lecture for an hour, you can begin to believe nonsense is science, but don’t.

I believe that the average Hep C patient (whoever that is) has a triple cross to bear.     1. You feel like shit on a stick  2. You have to go to unimaginable places like a liver biopsy suite and 3.You are thrown into a parallel universe where the language is almost understandable, but not really. It’s Jabberwok.

I was listening to a lecture yesterday on Hepatitis A through E. I was reading the slides as Dr. Nice Lady from pharmacy was talking.  And then I heard it:Hepatitis B and C are predominately associated with percutaneous and permucosal transmission”.  Translation:  Hep B and C can be caught through blood and through sexual contact.  Permucosal  is medical lingo for via mucous membranes.  The problem was that fifty pharmacists were about to  leave the lecture and tell their worlds that you can catch Hep C through sex.  I couldn’t let that happen so I said through the chat box “Hep C can be caught through sexual contact?  Is this new information?”  She said no, you are right to point that out, it is not transmitted that way.  So why did she say it?  The slide looked better that way.

In reality, the way one gets Hep C through sex is through rough sex and I mean rough.  Percutaneous means blood transmission.  I will pause here so that you create your own image.

Now I was willing to let it slide when she said that Hepatitis A and E were transmitted through the oral-fecal route.  In reality it is fecal-oral route.  Think about that for a moment.  But my point is that there is a lot of slightly non-true information out there.  What can you do about it?  Ask questions wherever you go.  Even if you have asked the same question before.  Remember how your doctor’s office always has that sign in English and Spanish that says Questions/Pregunta?  They really want you to ask.

Boy, did spellcheck light up Jabberwok!

http://en.wikipedia.org/wiki/Jabberwocky

Lewis Carroll Through the Looking Glass

Viral Hepatitis:  Keeping Your Patients Safe www.freece.com

Hepatitis C: Does “No Detectable Virus” Equal Cure Or Is It Smoke?

Am I cured or is it just smoke?

Hepatitis C cure?

 If my hepatitis C virus test shows non-detectable virus 6 months after the end of treatment, am I negative?  Will I  stay negative?  Am I cured?  In the recent past only “non-detectable virus” was declared. Now doctors are adding “cure” to the jargon.  This is with the addition of Incivek and Victrelis, and depending on the discussion.  No two clinical trials are alike and so Hepatitis C researchers use (they say utilize) sustained viralogical response (SVR) to compare outcomes.  Most trial design is by the company developing the drug.  One goal is to ask the study questions just right to get scientific and marketable answers.  “GodZillapravir had a non-detectable  SVR at weeks 12 and 24 in 85% of patients including those with mild to moderate cirrhosis”. “KingKongViracide cleared Hepatitis C virus in 94% of patients at 24 weeks including children 12 to 18 years of age”.  Which is the better drug?  You can’t tell by the claims because two different patient populations and time lines .  But they have  SVR in common.  That is why researchers use SVR.  BTW I made up the examples.  Now don’t get down on industry just yet.  Academics are accountable to department heads and medical journals.  That can be as powerful as a stockholder.

Industry is different: Stock holders in towers

When it comes to patients , the word “Cure” has emerged because research shows that if you have no detectable virus after six months, the chances of Hep C returning is about 1-2%.  And the argument is that it was never cleared, just so low that it was undetectable.

So with Hepatitis what does this mean?

Successful treatment for Hepatitis C hasn’t been available for long, so doctors are just starting to understand the long-term outcomes.  Do cancer survivors say cured?  I think they say  cancer-free for 2 years, 5 years, etc.  Am I a Hepatitis C survivor or am I cured?  Is it still a pre-existing condition?   A research site, not insurance, paid for my treatments.  But my medical records say Hepatitis C.

So at 24 weeks can I tell the insurance company that I no longer have Hepatitis C?  I can’t find the answer to that question without talking to them directly. I will wait until 2014 (I think that is the year) when they cannot cancel me for pre-existing conditions.  Insurance politics are so confusing, I am not clear if that stipulation is on the potential chopping block.  In speaking with my mental  Dr, I realize that I do not have confidence in my treatment and I am waiting for it to come back.  I am at 4 1/2 months post treatment.   I have been Hep C positive for so long, I don’t know how to have a future in which chronic debilitating illness isn’t a key player.  What is the world like with only mild hypertension and chronic but manageable depression?

Below is a good article for defining end-of-treatment terms, although it is a bit dated.  Newer drugs are not addressed but the terms are the same.

 Hepatitis C: What Is a Sustained Virologic Response or “SVR”? (From Charles  Daniel, former About.com GuideSVR) 

SVR is the closest you’ll get to “a cure” for hepatitis C.
 Sustained virologic response, or SVR, is the goal of hepatitis C treatment.  Conventional treatment (a combination of interferon and ribavirin) doesn’t  necessarily eliminate the hepatitis C virus from your liver. It can, however,  suppress the virus to undetectable levels for an extended period of time. In clinical language, this is called a “sustained virologic response,” or sustained  response. It means that during the six months after you complete treatment,  there is no detectable hepatitis C virus in your blood.                                         SVR is a good thing.
Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them. However, for these people, the
virus never really left. The medicine was able to eliminate most of the virus (so much that medical tests couldn’t detect it), but after treatment ended, for whatever reason the virus was able to continue replicating itself.

Early SVR is beneficial
Since the liver has incredible regenerative ability, achieving SVR
 as quickly as possible is important. This is important because some liver damage can be reversed if the cause of the damage is removed. After SVR is reached and depending on the degree of damage from the virus, the risk of hepatocellular cancer is reduced and about 25% of people see an improvement in fibrosis.

SVR compares one treatment to another. For those in treatment, SVR is the goal. However, for physicians and scientists researching new hepatitis treatments, SVR is also used to evaluate new medicines and compare them with proven therapies.
 For example, depending on the genotype, treatment with interferon alone usually achieves SVR in 15% of the patients. When interferon is combined with ribavirin in the same genotype, SVR is increased to 70% in some people.

Jana L. Lee, R.N., CCRC Clinical Research Nurse St. Luke’s Episcopal Hospital Advanced Liver Therapies, my practical answer source and demon fighter.

http://www.hepcadvocacy.org/factsheets/HepatitisC.pdf

http://hepatitis.about.com/bio/Charles-Daniel-37713.htm

Hepatitis C Lingo: What is a Log?

Okay, you are going into treatment.  You must understand the language of treatment progress. No one values your health more than you.

Getting information off the Internet is like taking a drink from a fire hydrant.   Mitchell Kapor

 Treatment response is a topic of great importance to me, you, and doctors.  They need  to see if the treatment is working enough to keep poisoning you.

Viral load is how to measure response. It’s done  by looking at the amount of virus in your blood. Viral load is checked before treatment,  at week 4, 12, and either 24 or 48, depending on duration of therapy, then 24 weeks (6 months) after therapy.   The response is measured in log reduction.    In fact log stands for logarithmic.  So what?  Each log corresponds to a factor of 10.  So what?  A 1-log reduction means virus decreases by 10 times; a 2-log = 100, a 3-log = 1,000, a    6-log reduction = 1,000,000 = 1 million.  Log is a way of not writing down all the zeros.  Just count the zeros gone and you get the number of viruses that died per ml of blood and went away.  Sort of.  There, in one paragraph we discussed a concept that took me some time to learn.  And you thought you would never use that math junk.

When I was in middle and high school, I had it in my head that my brain wasn’t “smart enough” for math and chemistry, even though I skipped kindergarten and the 2nd half of my senior year.   So I avoided the hard sciences.  Remember I was still GOD, grown up on duty, at my house. Then in my 20s, I went to college and I decided I didn’t want to fear math and chemistry any more. I took inorganic chemistry with algebra on the side to understand the language of thermodynamics.  This is an example of how my childhood perceptions always played down my abilities even though my family said I was smart (which I loved but didn’t believe) . I graduated from pharmacy school at 30,  then went back for a Dr. of Pharmacy in my 50s (while traveling around the country for work and, unaware that Hep C was dragging me down).

Why am I interjecting these little stories in the middle of scientific drama?  Because there is no scientific drama!

All measures must have units:  pounds of pressure per square inch (PSI), miles per gallon (MPG), ears of corn per stalk (one).  Notice the word per in each. The  Hepatitis C virus (HCV) is number of copies of the virus per ml of blood. The hepatitis C virus, like all viruses, cannot reproduce by itself. It must first infect a living cell, such as the hepatocyte, and take over the cell’s “machinery.” Using the genetic information in your cell, the hepatitis C virus is able to make copies of itself which can go on to make more copies.  The virus is measured in copies per ml of blood.  I know, weird.

Lindenbach B, Rice C (2005). “Unravelling hepatitis C virus replication from genome to function”. Nature 436

BTW, kids in Middle School know this stuff.  Amazing.    We will talk about RNA another time.  I know you can hardly wait.

Source:  Vertex website, Wikipedia

http://www.vrtx.com/assets/pdfs/VRTXHCVTreatmentResponse.pdf

www.wikipedia.com

and my brain: no link