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Group advises AGAINST testing for HCV

How about ten giant steps backward.
Kim

Quality Research for Quality Health Care

EMBARGOED FOR RELEASE Contact: AHRQ Public Affairs
Monday, March 15, 5:00 p.m., EST Kristie Smith, (301) 427-1246
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Farah Englert, (301) 427-1865
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TASK FORCE RECOMMENDS AGAINST ROUTINE SCREENING FOR HEPATITIS C

People who aren
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Avatar universal
I'm not sure what the day-to-day impact of the USPSTF recommendations will be but I'd expect it to be substantial. Particularly in hospital emergency rooms and public-health clinics it might set or strongly influences the "standard of care". An 'I' presumably leaves ordering the test completely to the Dr's discretion and, yes, I agree it's hard to imagine a Dr. who wouldn't order an anti-HCV on a past/current IV drug user. As a  bare minimum you'd want to inform the patient about the risk they present to others. The Task Force's 'D' on general screening however will presumably undermine any policy that recommended administering an automatic anti-HCV to everyone that walks in the door. I don't see any conflict between the quotes from the "introduction" and "discussion" included at the beginning of your last post: they're not denying the impact of the disease - they're saying the potential of current therapy to actually lessen mortality is small and still speculative, even if the odds of eradicating the virus are well established. If you put yourself in the position of someone who has to decide whether to commit money todayto anti-HCV tests, follow-up biopsies and tx vs spending it on  tests/therapy with a less speculative return the recommendation may make more sense.
I am starting to wonder about how unbiased the Chou evaluation was however. For example, in the Discussion again, they seem to discount the relevance of the long-term follow-up data from Japan - which is about the only data we have on whether getting to SVR really makes much impact. Why ? Why does the fact that HCV in Japan seems to progresses more often to cirrhosis/hcc lessen the validity of the Japanese estimates of the benefits of SVR? The difference in mortality rates in Table 2 of Kasahara, et al is about the strongest pro-tx argument I've ever seen, yet the Chou paper and the Task Force seem fairly dismissive of the relevance of this data.
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Avatar universal
ok.. pant, pant - all this scrolling is a bit of challenge...I believe they were primarily focusing on the benefit of screening asymptomatic adults. Those who experience symptoms and visit a Dr. will, probably, be screened as part of that investigation ( eh I found out I had HCV when I saw a Dr. about fatigue and joint pain). Also, I don't think their goal was to gauge the total societal cost (lost work, insurance, etc.) of leaving HCV undiagnosed. We all know subjectively those costs are real but I think they would be very hard to quantify. Their reasoning seems to turn on the fact that even if you managed, at considerable expense, to diagnose and treat ALL of the US's 4-6 million HCV carriers, you wouldn't really make much of a dent in overall liver mortality:
<em>
"The prevalence of HCV infection in the general population is low, and most who are infected do not develop cirrhosis or other major negative health outcomes. There is no evidence that screening for HCV infection leads to improved long-term health outcomes, such as decreased cirrhosis, hepatocellular cancer, or mortality. Although there is good evidence that antiviral therapy improves intermediate outcomes, such as viremia, there is limited evidence that such treatment improves long-term health outcomes. The current treatment regimen is long and costly and is associated with a high patient dropout rate due to adverse effects. Potential harms of screening include unnecessary biopsies and labeling, although there is limited evidence to determine the magnitude of these harms. As a result, the USPSTF concluded that the potential harms of screening for HCV infection in adults who are not at increased risk for HCV infection are likely to exceed potential benefits."
</em>
So what exactly is the $ cost of death by ESLD?
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Avatar universal
I always enjoy reading your analysis of the data you link us to,  a perspective we may or not agree with, but yet a valid one.

Given the decreased quality of life I had experience before dx, it is troubling to me that all they are concerned about is death from the illness.  
Death is not always the worst that can happen to those infected, but the decrease in health with chronic exhausting symptoms that require numerous drs visits and sick leave.  If they were to figure that expense in what outcome could we expect?  
As a matter of fact, when I asked my hepatology practice If my statistics would ever be used, she answered that only in a quality of life study.  not sure how she means it, though.   Quality before  tx vs post?
My desire was to live as pain and fatigue free as long as I could, not just to live to be a 100, cirrhosis free.
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Avatar universal
Susan: I'm sorry if my last post suggested I had any doubts about the severity of the firefighter's illness. I don't  - and wish him the best. My point was that failure to give him his test results  is a different issue from giving the test in the first place or from the chances of his disease progressing to a severe stage. His  case underscores that there is nothing "benign" about the disease in an absolute sense - it can lead to premature death.

Cuteus,Beathhep: thanks for the compliment, the link  to the Hadziyannis study and the correction: 50 %overall is definitely too low - the <a href="http://www.annals.org/cgi/content/full/140/6/465">Chou study</a> references 54-56 and the 61 seems to be based on more recent data.
This recommendation has been on my mind  a <em>lot</a> - it seems to make a  very strong statement and one that may have a major impact on millions of people in this country. Health policy ultimately is all about money: how best to spend a fixed amount of money to achieve the greatest benefit. By giving population-wide screening a D instead of an I, they're saying that, notwithstanding all the uncertainties, there's enough data to make spending $60 (their figure) to screen for anti-HCV a poor use of public funds. The estimates in their Table 8 seem to tell a lot of the story: from every 1000 adults tested, you'll get 15-17 positive for the virus, of which 0-1.7 will progress to cirrhosis over 10-20 years. WRT tx, of those 15-17, 2-5 may start tx and 1-3 may SVR. In those who SVR you expect a reduction in the likelihood of cirrhosis or hcc but the degree of reduction is   still unclear.
Basically, they're saying that, given what we know today, the likely overall decrease in the cirrhosis rate isn't worth the $60,000 needed for the initial screen of those 1000 people. I'd encourage everybody to read through this study and the accompanying recommendations in the  <a href="http://www.annals.org/current.shtml">current issue of Ann, Int. Med</a>. It's scary stuff:
<em>
Patients and doctors should be aware that there are no studies that prove that screening for HCV infection during routine health care improves patient outcomes. The USPSTF recommends against testing for HCV infection in patients who have no specific risk factors for HCV infection and no symptoms of liver disease. The USPSTF recommends neither for nor against routine testing for HCV infection for patients with specific risk factors for HCV infection.
</em>
(from the "Patient Recommendations"). If they're wrong, they'll be responsible for a lot of suffering. If they're right, those who don't tx or for whom it didn't work should be able to take some comfort in knowing they have a lot of company.

PS - it would be great to hear from Brits, Aussies, etc. about how widespread screening is - you have to wonder if failure to screen is more deficit spending.
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Avatar universal
see - I still can't type - though overall everything's looking MUCH better. Hope the memory of tx is fading fast and, well, just leave that tally-man  in the dust..
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Avatar universal
Dear Willing,

When I said that this guy is dying from Hep C, I wasn't just assuming that or making it up.  It been in the news a bunch down here in Fla.  This guy is actually dying and in fact was so sick that he could not even attend his own lawsuit trial.
Susan
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Avatar universal
Ok. so they gave it a "D" because they found there was enough data to reach this conclusion, instead of the "I " that states: "insufficient evidence to recomend for or against screening" and all throughout they  keep referring to there is no enough data...what am I missing?
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Avatar universal
just did a 90 day ...so will see if the odds have turned in favor in about 10 days...stay tuned and stay well
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Avatar universal
I'd sure like to believe your first GI was merely incompetent/overloaded but you may well be right. As Indiana says, I know I'm gonna get in trouble for this, but there's something OBSCENE about a medical system that makes it possible to make a profit by getting between a patient and their treatment - it's hard to understand why we don't expect something better.
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Avatar universal
Ty for that clarification. The task force is the private sector independent panel not AHRQ.

This part about AHRQ is what bothers me about this health services branch:

"What is health services research?

Health services research examines how people get access to health care, how much care costs, and what happens to patients as a result of this care. The main goals of health services research are to identify the most effective ways to organize, manage, finance, and deliver high-quality care; reduce medical errors; and improve patient safety."  
It still feels that is strongly geared towards cost saving.  That they issued this significant reccomendation based on the limited data available due to limited studies and funding is troubling to me.  They should have at least given it "I" recomendation.
This illness tx is fairly new compared to hiv and cancer, and the lack of sufficient evidence is working against those infected.
There are still no studies on svr for those with mild damage and no coinfection.  Many studies on extrahepatic manifestations do not include women.  An "I" would have made more sense.  I still believe costs was the major influence.

The lack of "enough evidence" only means, to me, that either there are no studies done or not enough studies are available from where to draw a different conclusion.  They either did not study the item or not long enough. I, and lots of people like me, on tx and done with tx will not be included in ANY statistics at this point according to my hepatology practice.  We will be numbers unavailable to any task force.
That is the problem I see with this recomendation.

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Avatar universal
WOW, I was very moved by your postings.  My regular doctor didnt seem to understand why my GI was being aggressive with my treatment.  There are some doctors that seem to care about their patients.  I hope things go well with you....Understanding how frustrated you have been....Deb
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Avatar universal
I just read that article, how sad for this people. Workmans comp will do anything not to pay up. I got stuck by a needle at work and workmans comp in denying my claim.
Evryone should read that story, you can find it at
http://www.firefighterswives.com    then look for A lesson on how life can change in an instant, its under articles on the upper part of the home page.
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Avatar universal
yup, I definitely agree, with the frustrated lab rat perspective. Hell, if you're going to be a lab rat someone should at least be paying close attention and taking notes! Being a lab rat applies as much to those who leave the disease untreated at to those who do the meds. For example, one of my pet peeves is the comment in the riba med insert on "Carcinogenesis and Mutagenesis" : with as much money as Roche and Schering have coming in from riba why aren't they completing the carcinogenesis studies?

However, wrt to this study, characterizing the authors as CYA bureaucrats seems unfounded. The full article is available from the www.annals.org link above under "recommendations" above. The authors are 3 MDs with academic affiliation who did this work on an AHRQ grant. The study is a comprehensive analysis of HCV publications and clinical trials through 2/2003. To me it looks like a  balanced assessment of what we know, globally, about the disease, its progression and treatment. This may not be much, and yes, they do emphasize this repeatedly, but nationally, as well as individually, you have to act on what you do know. We do know that with 6.7M infected in the US we see a very low percentages of major complications and we do know that, overall, tx only benefits about 50%, and we're <em>absolutely sure</em> tx is a pain. There's also partial data indicating those who SVR feel better overall (Table 6 in their study and lots of comments on this forum!) and have a "moderately lower" chance of progressing to cirrhosis or HCC(their refs <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12407587">120</a> and <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10094956">141</a>).

None of this argues against doing tx if that's an option for you. However if you can't do tx, or if it doesn't work, the silver lining seems to be that things will probably be OK anyway: all the more so if you adjusted your life to reflect the presence of HCV (no alcohol, healthier habits, etc.). Subjectively, what doesn't ring true to me about this study has nothing to do with tx. Never mind the meds: anti-hcv tests are cheap and there's lots of posts indicating the benefits of a healthier, no-alcohol, life are significant.

Susan : not releasing the results of the test may well be incompetent or unethical but it doesn't seem to bear on the chances that his HCV would become a serious health problem.
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Avatar universal
as best I can tell, <a href="http://www.ahrq.gov/about/">AHRQ</a>is an agency of Dept. of Health and Human Services charged with <a href="http://www.ahrq.gov/about/whatis.htm">health services research</a>. This AHRQ-sponsored task force explicitly recognized the serious problems that can result from the disease. The basis of their 'D' <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15023713">recommendation </a>(don't screen) is that these problems occur rarely, combo tx is not effective in many cases, and the degree of long-term benefit, even if you SVR is unclear. The US population is about 293M. If 2.3% of those have HCV (6.7M) and about 70% are 1s, we have 4.7M 1s and 2M non1s. Assume the meds work for 55% of 1s and 75% of non-1s. Even if the government made tx compulsory, the number of HCV carriers would only go down to about 2.6M. On the other hand, the frequency of serious complication is low and the degree of long-term benefit from clearing the virus is still largely unknown. More studies like <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14996350">this</a> or better drugs might well change this recommendation. As it stands, I saw it as very encouraging news to the many for whom combo tx fails. Life with HCV isn't a death sentence and you can look forward to dying in your 80s of a stroke or cancer even if your VL is in the millions.

beathepc: similarly, I don't believe they're trying to "hide" any of the extra-hepatic effects (there's lots, here's an older but pretty impressive <a href="http://www.geocities.com/HotSprings/5670/Disease/diseasesindex.html">list</a> someone put together). It all comes back to frequency and severity vs likelihood of benefit from tx.
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Avatar universal
These people who wrote this article, did this study, etc., really get me mad.  There is a firefighter in Orlando, right now,who is dying of Hep C because in Orange County, FL a group of firefighters were not told that they'd tested positive for the Hep C virus.  So, this guy is suing Orange County due to the fact that if he'd been told about it years ago, he might have had a chance at fighting the disease and now he's dying from it. Apparently, the lab in Orange County had tested these guys years ago, they all tested Hep C positive and those morons never told these poor firefighters.  Susan400
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Avatar universal
GREAT INFO... amazing just amazing!!!

Funny thing about the medical/insurance systems. i was an HMO insured patient. this means the dr. gets a certain amount of money for me YEARLY,and if i need treatments, they come from that pool of money laid out for the dr. so there is NO motivation to find any thing WRONG with me.

after i found i had hcv, ACCIDENTLY, at an infertility visit, and recieved my GI, he would only spend 2 min per visit with me. he never weighed me on visits or even checked my blood pressure or listened to my heart. just a nod, look at my blood work, and "i'll see you next month.  making it very clear he was in a hurry...

Right off the bat he did not think it necessary to do a biopsy on me. than he said it wasn't essential that i go on tx cause i probably will die of something else. i insisted on the biopsy and found i have bridging fibrosis.  at my 12 week point he denied me of my EVR TEST even after i begged him for one. i was already preparring for a fight over my request to be on tx longer because of no evr test and being so fat...(which changes my prospects of clearing at 24 weeks)  

well, i finally,changed insurance to a PPO,(one where the dr. actually gets paid for each thing he does to me by the insurance co.) and switched to a dr.in this system. i went to see my new GI a couple days ago.

now my new GI on my very first visit has already suggested i get put on a transplant list and have gastrobypass surgery after tx. he also says i have early cirhosis.

the other guy acted like i was perfectly fine...

turns out i will have to be on maintainance thereopy even if i  clear. this will keep me from dieing until i get my transplant! unless, of course, he can bring down my alt/ ast... with high dosing of extra interferon,over the next few months.

Oh, and now i will definately be staying on full tx for at least 3 extra months.  all this before he even knows if i cleared yet. just based on my liver enzymes being still high at 24weeks. (type 3a).

i would have been done with tx next week if i had stayed at my old GI.

very funny... i'm not laughing though... my lifes at stake and all they care about is money.

gee, i wonder why they want to give me more medical proceedures now? i think that really stinks! but, i am greatful to now be treated more agressively.

somehow my life is worth more now that i put more money in thier pockets, and before i wasn't even worth a 5 min visit.

i watched my mom die of liver disease last year and she wasn't even offered a possibility of a liver transplant...she was in a nursing home, state paid by the way...

i just wonder with all the HMO insurance garbage if this doesn't some how play into the reasoning for not "NEEDING" to check people for HCV???  biopsies,c-scans,endoscopies...many, many blood tests...meds...referals...future medical proceedures... all that costs the dr.to check up on. and comes right out of his pockets,when his patient is an HMO with a serious medical condition.

NO WONDER WHY THEY WOULD RATHER NOT KNOW!!!! it's cheeper for every one if i (and people like me)...just die...



GOOD THING GOD LOVES US!

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Avatar universal
This was not concluded by the Dept of Health and Human Services, but by an independent panel of private sector "experts"  funded by ....?
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Hey guys...and Kim TY for the info. I'm glad in going to Duke to be a case study!!!!!! Love you all, Cindee
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Avatar universal
Thanks Kim.
Yeah...I guess the 8,000 to 10,000 dead people every year don't mean much to them.
And the fact that it's the single biggest cause of Liver Transplants probably isn't shakin them up either.
Their own statement that most folks don't even know that they have this is astounding since they go on to say that testing isn't needed.
Bureaucrats amaze me sometimes.
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Avatar universal
Kim - thanks for the post. I hope you, along with Cindee, Schenectady, Susan and all others for whom the meds didn't work find some comfort in this. That a Dept. of Health and Human Services agency finds insufficient evidence of benefit to recommend routine HCV screening says a lot about the effectiveness of current tx relative to the risk of no treatment. Sure, it's great to clear the virus, but if a national public health recommendation sees no value in even testing this suggests focusing one's energy elsewhere.
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Avatar universal
TY eyedeas for this latest info.  
Unfortunately the key phrase was "not enough evidence", which really translates to; there have not been enough studies to form a different conclusion.
Not enough studies due to no funding= no evidence=no funding for studies...a little vicious cycle... because no funding will bring less data from studies. Head is spinning, but not surprised.

I always wondered about the estimated #, how do they come up with them if no routine screening is done?  They say out of est. 4 mil infected, the majority don't know they are infected...huh?  then where do the numbers come from?

Another problem seems to be that hcv is looked upon as mostly a liver disease with little acknowledgement that there are extrahepatic disorders that can cause dissabilities. Because there is not enough evidence!

This panel of private sector "experts" have taken the cheapest way out!!!
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