Back from Boston

[JennyPenny2009]

Just returned from AASLD. It was so much quieter this year than in previous years. Got to see the fibroscan machine and hear all about how it works. Some interesting but not really new info....just a different take from some of the docs. All of the pharmas met with the advocates so networking was good. AND, the viral hepatitis bill was dropped on Thursday. It is important that all of us call our representatives and ask them to sponsor HR 3974.

[BellaMamma]

I am new to my Hep C and starting treatment in two weeks.  Really interested...can you tell me what the viral hepatitis bill is?  And what is the HR3974?

[tashka]

I am curious about fibroscan machine. Did they say if it is going to be available any time soon? What was the scoop on this?

[JennyPenny2009]

BellaMamma, HR 3974 is the number the bill was assigned in the House of Representatives. The actual name of the bill is the Viral Hepatitis and Liver Cancer Control Act of 2009. The bill was developed to reduce the significant morbidity and mortality from end stage liver disease and liver cancer caused by chronic hep B & C. Its aim is to increase awareness and prevention for the millions of people who are infected with over 50% unaware that they have these viral diseases. The bill asks for $90,000,000 FOR 2011, to establish, promote and support comprehensive prevention, research, and medical management referral for hep B & C. It asks for support of state health departments to do surveillance, prevention and immunization.

Tashka, I don't know the answer to your questions about the time line for approval of fibroscan. We were just shown how it works with sound waves and they have to get at least 10 cuts with 6 good ones to give the most accurate results. It is very good for Stage 4 and less good for stages 1 through 3. The presenter made reference to the fact that it should not be used without biopsy, but is good to confirm biopsy results. None of these tests, including biopsy are 100% accurate. Best use is to use them together.

[BellaMamma]

I am calling my representitive.  thanks!

[jdwithhcv]

I'll be sending off an email to my rep tonight.  Thanks for the info.

jd

[JennyPenny2009]

You can reach your Representative by calling the Capitol Switchboard at 1-202-224-3121 or email Representatives directly from http:/writerep.house.gov. If you don't know who your Representative is, go to www.congress.org and enter your zip code in the upper right corner. If your representative is already a sponsor, thank him for his sponsorship and offer to provide your experience/expertise in this issue as needed. Use your social and professional networks to get more people like you to call their representatives!

Take a sentence or two and tell your Rep why this is important to you. You can ask for his or her staffer who takes care of health issues.

Thanks. Your voice does count.

[Bill1954]

Thanks Susie--

I’ve e-mailed my representatives, and voiced my support for HR3974.

Bill

[tashka]

Jenny, who was presenter for fibroscan?
I agree with you that the best approach is to use several tests together: combination of fibroscan, biopsy, ultrasound, labs, and symptoms.
Thank you for providing this info.

[JennyPenny2009]

I saw the machine on the exhibition floor. The presentation was part of the Hepatology Associates Course and was given by an RN named Colina Yim, from Toronto Western Hospital.

[newleaf09]

Here's what I did about the dropping of the house bill:

Go to: http://www.house.gov/house/MemberWWW_by_State.shtml#la
to find your representative.  I wrote:

"What's happened to HR3974, the viral hepatitis bill?  We still have vast numbers of unknowing citizens who were infected with this deadly disease before medical screening became available.  If we are going to keep health care costs down we need to find these people before they develop liver cancer and put an unnecessary drain on resouces.  Please see what you can do to revive this important bill."

I used the cost angle because they all seem to be obsessive about that now.

JennyPenny, thanks for going to the meeting.

[smaug48]

thanks for the info, told my rep that I support HR 3974

[JennyPenny2009]

Thanks guys. This is wonderful. For those who haven't contacted their Congressmen yet, please ask them to co-sponsor the House Bill #3974. We need co-sponsors and bipartisanship.

[mike716]

Hi, Tash. I know a bit about Fibroscan, which I had done here in Argentina (I am a New Yorker living in Buenos Aires), and am re-doing this week. I have also had ultrasound, ecodoppler, and biopsy, all at my hospital here, and am doing APRI (AST-to-Platelet Ratio Index) myself. Here are some of my own experiences, which may be of use to you.

18 months ago, after being diagnosed with hep C, I had a biopsy that gave A2,F1 (Metavir scores meaning moderate inflammation and slight fibrosis). Ultrasound showed a normal-looking liver. Ecodoppler showed normal blood flow in the portal vein (an important measurement for judging whether esophageal varices are developping). My blood analyses showed slightly elevated transaminases (AST & ALT), as well as slightly lower than normal platelets, but no other abnormalities. My hep MD took all this together to mean that I had early-stage fibrosis and that I could wait, without worry, for the new meds to be approved.

In an attempt to try and confirm the F1 diagnosis and his decision, I paid for two computed tomographies and sent the results to Spain, where a FibroTC was done (the results are on my images page). The FibroTC gave me a Metavir equivalent score of F0/F1.

Then recently my hospital got a Fibroscan machine, and two weeks ago I was one of the first patients for it (actually, number 115 according to my hep MD). The results were F3/F4! Shocker.

My hep MD is now trying to back-peddle, saying that the biopsy probably underestimated the fibrosis and that I was probably F2 18 months ago, and that the Fibroscan may be overestimating fibrosis (which is why they are re-doing it). However, the fact remains that he (my hep MD) and the Hepatology Department at the hospital based a mistaken decision to postpone treatment (if I really am F3/F4 now) on the results of these various tests.

Conclusion: None of these tests are very good, and it is highly dangerous to make treatment strategy decisions on them.

I would have been better off, it turns out, using only a simple test called the AST-to-Platelet Ratio Index (APRI), which anyone can calculate for themself from their blood tests (as long as the hepatic transaminase AST and platelets are included in them). The formula is AST divided by ULN (the Upper Limit of Normal for AST, which is 42), divided by the number of platelets in thousands (for example 150), times 100. For example, if your bloods gave AST as 50, then 50 divided by 42 is 1.19; divided by 150 is .0079; multiplied by 100 is 0.79.

The APRI cutoffs are: 0.5 and 1.5. That is, an APRI score of less than 0.5 means no or very slight fibrosis, and an APRI score of more than 1.5 means cirrhosis. The intermediate scores approximate the intermediate fibrosis stages.

I have now calculated my APRI score for the seven blood tests done between 2006 and now, and the graph of the scores shows a steady progression from early to later stage fibrosis, which is apparently what has happened. That is, I'm a fast progressor (65 years old, geno 1b, etc.).

APRI has been shown in various studies, including a recent one in Vietnam, to be quite as good as any other test for differentiating between early and late stage fibrosis (I have article citations if anyone's that interested).

If I had used APRI, calculating it from my blood tests, instead of trusting my hospital with all their confounded machines and minor surgical techniques, I would have been better off, maybe even saved years of my life. Because treating now, with F3/F4, is not the same as if I had treated 18 months ago, when my fibrosis hadn't progressed much yet.

So, judge for yourself whether Fibroscan or biopsy or any other test is worthwhile. To me, it's a dangerous lottery. And since you can't trust any test by itself or even together with others (as in my case), the best thing is just to treat as soon as you can, either SOC or a PI trial.

Unless you're an asymptomatic twenty-five year old with normal bloods and everything else.

Mike

[JennyPenny2009]

Thanks for an excellent post. They talked about these kinds of things happening in the presentation. The only thing I wonder about is why your doc seemed to ignore the low platelets which are usually a big tipoff that cirrhosis is near.

[mike716]

Re the low platelets and my hep MD, your guess is as good as mine :-)

He has been telling me all along (from platelets 160,000 in 2008 to the recent 121,000) that even down to 100,000 is no big deal. Duh!

What happens with these hep MDs is that they see so many people with cirrhosis and liver cancer that they grow innured to milder cases. And that is very dangerous for those of us who don't have cirrhosis or cancer yet.

Plus, hardly any of these hep MDs have the time to read all the pertinent articles that are being published every month about hepatitis research. For example, how many of them know that several studies, not all that recent, have shown that fibrosis progression is not linear, and that it accelerates sharply after the age of 50? One article I found, which gives the results of a large, long-term study, shows that almost everyone has cirrhosis around the age of 65 (my present age), regardless of how long they've been infected (and all the other supposed variables).

I used to do bibliographic research on HIV at the Pasteur Institute library in Paris, and I even did a year of Ph.D.-level ostgraduate study in biology at a U.S. university. Biomed researchers hate MDs. MDs are generallu uninformed, and they don't make the right use of what they do know. They aren't used to making rational use of complex data. They aren't up to dealing with this type of situation.

The fibrosis tests, for example, are probably good if used the right way. Buit how many hep MDs know the right way to use them? (I mean use the results.)

It's a sad state of affairs when patients in a medical forum like this are better informed than their doctors, don't you think?

Personally, I am depressed and furious about what has been done by the MDs in my case. Well-intentioned, they may be. But they simply do not know what they are doing. Lab tests and machines will never take the place of the brain.

Mike

[Trish77]

"I saw the machine on the exhibition floor. The presentation was part of the Hepatology Associates Course and was given by an RN named Colina Yim, from Toronto Western Hospital."

Interesting side note - I was tested with that Fibroscan machine at Toronto Western after my treatment was done and at the 6 month post EOT mark.  I was Stage 1, Grade 1 when starting treatment.  The Fibroscan had me at 0 after treatment.  Doc took 10 passes and told me he had to stop talking because it made me respond and I needed to be still and quiet to get the most accuracy.

[frijole]

Interesting discussion

Thank you JennyPenny for your take on the AASLD conference and Mike - for your most informative discussion of the fibroscan.

I am going to start calculating my APRI every time I have a blood test.  Running the numbers from my annual physical a week ago, I get .0039 -- under the radar.  Nonetheless, my AST was 10 points higher than my personal normal and concerning to me --  my internist told me not to micromanage.  I would be veryi interested in the study that showed that most people develop cirrhosis by age 65, being almost 62 presently.

frijole

[Rosebud41]

I'll email my representatives tonight.


Thanks

Rosebud

[BelB64]

I believe this is the study you're looking for:

www.medscape.com/view article/554637

It's also the same study that suggests on average women infected before age 35 who are non-genotype 1 will progress at arate that gets to cirrhosis at age 89!