The HPV Test: A Piece of My Mind

peace of mindWhat’s the new mantra for marketing health care testing to American women? “Peace of mind”.

That’s right. Forget medical necessity. Forget that your doctor feels it is not needed. Or that your insurance may not cover it. Get the test “for your peace of mind”.

Digene is tapping into women’s inherent anxiety and fears about cancer by suggesting that they routinely get the HPV test, even if their pap is normal, so that they can sleep at night.

Digene’s web site for women is a cross between Women’s Day Magazine, 20/20 and a pharmacetical rep training manual. It’s absolutely brilliant marketing. Chock full of anectodal survivor stories to warm the heart and scare the bejesus out of the reader. If you weren’t worried about cervical cancer before you came to the site, you sure are now. Then, once they’ve got you good and scared, they sweep in on the white horse to offer you the cure – the HPV test.

But there’s one problem – Routine HPV testing, although FDA approved, is not the only strategy recommended for cervical cancer screening. And there’s the little problem of that darned doctor…

Not to worry. Digene is going to coach you so you can convince your doctor to give you the test. Here’s just a little bit of their advice:

Call your doctor’s or nurse’s office before your next exam to find out if the HPV test is offered as part of routine screening for cervical cancer, along with the Pap. Remember: Make sure the office understands that you want the HPV test no matter what the Pap test shows. Some doctors and nurses only order an HPV test when your Pap results are inconclusive (called an “ASC-US” Pap).

If your doctor or nurse says the office does not order HPV testing for all of its patients who are 30 and older, indicate you’d like them to make an exception for you.

If your doctor or nurse (or the office staff) responds by saying he/she doesn’t think routine HPV testing is necessary, the simplest way to respond is to say that you would still like to have the test “for my extra peace of mind.”

That didn’t work? No problem. Digene has a full page of strategies for women to use to convince their doctor to give them the test. I swear, it reads like a pharm rep training manual. Every possible response from the doctor is covered, and Digene has an answer for each one of them. And they all end with telling the doctor that you want the test for “extra peace of mind.”

“Talk to your doctor” has turned into “Sell our test to your doctor”.

And the survivor stories? Well, if you have ever read the cancer stories in Women’s Day or Glamour, you know how they read. Anectodal horror stories that will convince anyone reading them to run out and get the HPV test right away. All implying that if these women had gotten an HPV test, things would have been different. Maybe…

Digene can take the story of a woman whose HPV test added absolutely nothing to her health care and make it sound like a survivor story. This woman got not just one, but four HPV tests over three years for a transient HPV infection that never resulted in a single abnormal pap smear or any need for treatment. Here’s what she says about it:

This experience taught me the importance of not being afraid to ask questions and make decisions with my doctor, rather than letting him make all of the decisions for me. Demanding the HPV test may have saved my life.

She never had an abnormal pap. She did not develop cervical cancer or even cervical dysplasia. But the HPV test “may have saved her life”.

Now, I could give you a few anectodal stories about women whose HPV test was negative, but whose pap showed high grade dysplasia. (No test is perfect, not even the HPV.) Or women whose relationships were broken up by an HPV test that added nothing to their health care. Or physicians who do the HPV test on every patient, only to have patients get angry at them for finding a condition that basically has no cure and hasn’t changed anything except to creat anxiety. I could even make a website about it, and coach you into talking your doctor out of that routine HPV test.

But I won’t.

Because you should talk to your doctor about the HPV test, not me. Someone who hopefully knows you, knows about the test, and together with you can decide if having the test is right for you. Because routine HPV testing is not necessarily the best strategy for every patient and for every medical practice.

And for the record, do I ever order HPV testing on a woman with a normal pap smear? Sure I do. But that’s a decision I make on a case by case basis, one that the patient and I make together after discussing the reasons for and against the test, the cost implications, and what we will do about the results if they are abnormal.

It’s not a decision she has been talked (and coached) into by a company trying to market that test.
__________________________________________________________________

For patient information about the HPV test, see the American Cancer Society Website.

Clinician information from the Centers for Disease Control.

Financial disclosure: I used to own Digene’s stock, and even made a few bucks on it back before the test was being used in clinical practice. I knew HPV testing was going to become part of women’s health care. I didn’t know Digene was going to annoy me this much…

Category: Second Opinions

41 Responses to The HPV Test: A Piece of My Mind

  1. This is a great blog!

    I struggle with the same question(s) every day. One of our nurses asked me last week if I had done the HPV test when I did her pap. I explained that I hadn’t, and why, and current CDC recs (no evidence for routine HPV testing). She said, “Then why did the ad on TV say that every woman needs the HPV test?”

    Seriously, she said that.

    I said, “Because the company makes money for selling their product and they are using you as a pawn to make money.”

    Sounds ugly, I know, but I was steamed. Digene, shame on you!!

  2. And they want us to tell them the date of our next GYN appointment! Thanks you for taking on this issue. Now I have a new one. I just read that DES daughters need a four-quadrant Pap test in addition to a cervical Pap. Who makes this determination?

  3. Anonymous:
    I’m not sure what you mean by a “four quardant test”. If you mean a vaginal as well as a cervical pap, that’s not a bad idea for a woman with DES-exposure and vaginal adenosis. (A condition where the transitional zone that normally resides on the cervix extends onto the vaginal wall as well.) Talk to your doctor about what is best for you.

  4. I believe it’s short sided to allow a marketing campaign cloud the clinical data that supports adding HPV testing. With mountains of clinical data and support of ACS, ASCCP and ACOG, I think there is reason to take a second look at why there is a need to market direct to women.

    In fact, instead of trying to understand any marketing strategy, a better question would be; why would a provider not want to change a subjective, 50 year old technology?

  5. Anonymous:

    Thanks for your comment. My intent was never to cloud the issue. Lest anyone be mislead by my post, I have no issue with the HPV test itself, or even with it being marketed to women. It is the manner of the marketing to which I object.

    According to ACOG, women over 30 have three options for cervical cancer screening:

    1. Women with 3 negative annual Paps can be rescreened with cytology alone every 2-3 yrs; or

    2. Annual Paps; or

    3. Cytology plus HPV test. If both are negative, rescreening no sooner than three years.

    How do I choose which strategy? Based on what my patient and I decide is best for her. What do I consider in making the choice? A lot of things – her sexual activity (a lot of my over 30 single patients are acquiring transient HPV), the inherent faith I have in our cytology lab (I would put it up against any lab in the world), her pocketbook, her history, her concerns and her understanding of the implications of a positive result.

    Digene is using anectodal stories and fear-based marketing to drive that choice in their direction, couching it as female empowerment, and discounting the doctor’s role by making any doctor who might choose one of the other options appear to be a dinosaur (just as I believe you are not so subtly implying in the second part of your comment). It is a highly sophisticated marketing campaign that deserves to be examined.

    One more thing – While I respect your right to remain anonymous, I wonder if you would tell us if you have any financial conflicts to disclose?

    And if future commenters to this post would do the same, I think it would be helpful… a simple “no conflicts” or “NC” at the end of your comment would be great, thanks. (Or a disclosure of conflicts if they exist.)

    Thanks for visiting.

  6. Maderine:

    You are correct. As of Nov 2006, the CDC and US Preventive Services Taskforce finds insufficient evidence to recommend for or against routine screening with the HPV virus. They do, however, acknowledge the recommendations of ACOG and ACS, both of which treat it as an option.

    Thanks for visiting.

  7. TBTAM, I am curious, do you tell women that they could do the test less often than once a year? Because my ObGyn has never brought it up. I am aware of it, but I am reluctant to bring it up – I guess I am one of those shy people who don’t want to waste doctors time or argue with them. It’s easier to just comply. I am not even sexually active (nothing against sex, really, just don’t want to do it casually and finding the right guy is tough with everyone wanting sex on the 3rd date…) and I had several years of negative pap smears since the last time I had sex.

    My 70-something mother’s (faithful to my father who is older and no longer can have sex) doctor does pap smears on her every year and my mom doesn’t feel strongly enough about it so she goes along even though USPSTF says that after 65 risks outweight the benefits. I mentioned it to her, but she isn’t used to argue with doctors.

    It’d be nice if doctors actually volunteered this information. Also, I think doctors should be more forthcoming about risks associated with the tests, about false positive rate, overdiagnosis, numbers of people that needs to be tested to save one life, etc. Because tests are not risk-free, even recommended ones, even those that are proven to save lives. I think if more people had known about risks of all tests, they’d be less likely to request some unproven tests.

  8. Anonymous:

    What I discuss with my patient depends a lot on why she is there and what else is going on during her visit. Many of my patients have a lot of other issues that take our time during the visit, so we don’t spend as much time batting around which cervical cancer screen I am going to do while I have her up in stirrups.

    I suggest you talk with your doctor about which strategy is best for you.

    There is a bit of disagreement among the professional organizationsas to when, if ever to stop paps. Although the ACS and USPSF say that one can stop screening at 5 or 70, they are clear that the recommendation is based on level D evidence, and that there really is little data on which to base a decision. ACOG does not set and across the board upper limit, and in my practice, I take it on a case by case basis. Have you mom talk to her doctor.

    Remember that just because a pap is not being done does not mean you get away without seeing the gynecologist or getting a pelvic exam otherwise…

    Thanks for visiting.

  9. I’ve had 4 kids, a couple of abnormal paps (not successively) and a cervical biopsy after the last abnormal pap. The biopsy was negative and I’ve had 4 normal paps and a smooth term preganancy since the biopsy was done. My doctor doesn’t have me do the HPV test. She probably would as part of a follow up to an abnormal pap, but I’ve not had to cross that bridge yet, thank God.
    At any rate, I’d think I would be in a higher than average risk category and I know that Dr. K is stubborn enough that if she thought I needed it, she’d insist on it. Her opinion that I don’t need it is all the reason I need not to have the HPV test done.

  10. Mel:
    It sounds like you have a lot of trust and a good relationship with your doctor. IF you had any question about HPV testing, don’t hesitate to bring it up.

    My beef is not with the HPV test itself, I use it in my practice all the time, but with how that test is being marketed to women.

  11. Since assuming is usually a bad thing – I’m curious as to your opinion of the HPV vaccine. My pediatrician wants my 11-year-old to “definitely” get it, NEXT YEAR?!?

    This seemed very odd to me.

  12. The problem with advertisers is that they are selling something. They stand to benefit from moving as many units as possible. They don’t care if they sell useless tests.

    What I would love to see is a money back guarantee.

    I am a free speech guy and hate to tell pharma companies they can’t talk about their products. On the other hand, pharma never tells the truth about this kind of thing. Knowledge is not always power. Knowing something does not always help in medicine. Having the HER-2 gene overexpression may increase a person’s risk for breast cancer. But it does not make it certain, and in fact, may not even make it likely. So does knowing help? Probably not.

    The thing patients do not understand and advertising will never tell is that sometimes, statistically you are better off not knowing.

    I suffer through the same thing with PSA levels and prostate cancer.

  13. Thanks for the advice! It’s hard to know what to believe when it comes to health care. I just trust what my doctors say without questioning. Your post is enlightening and is causing me to realize I need to take my health care into my own hands.

    I’m learning a lot from the medical blogs I read, as well as other sites that specialize in providing information on health related issues. A couple of good ones are Healthline, Medlineplus, DoctorSecrets, Science Daily, and tons more. The internet is helping bring medical information to the people!

  14. This is fantastic.

    I’m a single doc living in the city and I appreciate the perspective you bring to HPV testing.

    I know that there are no recommendations to screen women for HPV if they are <30 yo unless ASCUS + because it is so common.

    I also think that in a place like NYC with a probable higher proportion of single and sexually active thirty-somethings the whole automatic HPV testing over 30 recommendations have the potential to cause a lot of grief and anxiety for nothing.

    How much does that play into your decision making and counseling strategies? You mentioned your >30 have lots of transient infections. . . why bother then?

  15. Anonymous:

    Thanks for your comments. I do not routinely test the over 30 crowd who have new partners with anything but a pap smear. I pick up enough transient HPV that way, as indicated by their negative or low grade only findings at colposcopy. Adding the HPV does nothing. (Remember, we have an amazing cytology lab..)

    I saw a vibrant 77 year old patient last week who is in a new relationship. I’m not stopping her paps just because she is over 70, that’s for sure, and not doing HPV testing either.

    In my mind, guidelines are just that – guidelines. When you have patients who are outliers, you need to treat them individually, and not be too wed to following population-based recomendations.

    Thanks for visitng.

  16. This is a fantastic site. You have enlightened me with this whole HPV testing issue. Thank you! Thank you! So much!

  17. hi, i’m new to this blog and have been reading to catch up on the conversations…i have a few questions about hpv…

    1. can you only get hpv through sexual contact? I have heard that you can get it through using an infected person’s chapstick or glass…or just buy kissing, is this true? i also read that only 1/3 of hpv types are transmitted through sexual contact…what about the rest?

    2. i know that there are no treatments for hpv, but what are you supposed to do in the 6 months they tell you to wait until you get tested again? just wait for it to go away?

    please give me some info…i just found out yesterday that i have been infected and i’m freaking out.

  18. Anonymous:

    Sorry to ehar you are dealing with HPV, but take heart in that you are inn good company – most people get an HPV infection at some point in their lifetime, and it is only the very small inority who have long term issues from it.

    As to your questions:
    Genital HPV is contacted through genital contact.

    In terms of what do do – don’t smoke, make sure your diet includes fruits and vegetables, and use condoms. Research has shown that condom users have faster clearance of the virus (Or perhaps it’s just that they aren’t catching any new strains, which is just as good…)

    Best.

  19. thanks for your response to my questions….this may come off as a stupid question but my doctor did not specify if i had genital hpv, he just said i have it but not what type…is this a question i should ask him or is that stupid? as far as smoking…i am a cigarette smoker and i’m trying to quit and i also smoke pot every once in a while…what are the side effects of smoking and having hpv? i will def be using condoms…can i still spread or catch other types of hpv even while using a condom every single time? i will be telling my boyfriend this weekend that i got hpv while we were broken up and we are now back together…i’m going to ask him to get tested, how likely is it that he might have been infected too…unfortunetly, we had sex without condoms because i didn’t know i had hpv…also if he is positive, what can he do or how can he get rid of it or are we both carriers for life? please help…thank you so much for everything, i feel like this can be a really good support group because i have never had any other std’s and i dont know who to talk to…. 🙁

  20. Anonymous:
    That’s a lot of questions…here we go….
    The test does not specify whihc type jsut high or low risk subtypes, you can ask your doctor which it is.

    Smoking is a cofactor for the development of cervical cancer. Do your best to quit. I don;t know about pot, why smoke it?

    You can catch other tyoes of HOV even though you are using a condom. Best way to prevent hPV is to limit your number of partners. If you only have sex with men you love, that will be very few…

    There is not HPV test for men. Nothing he can do to clear other than not smoke and eat right.

    There is good info at ASHASTD.ORG and at the ASCCP.org and the CDC.Gov. There may be support groups there…

    GOod luck.

  21. I suppose I have to appreciate any strategy I see for how to deal with doctors and get what I need, even when there might be ethical issues with the source; as is pointed out here.

    That’s one of the problems here in the UK with the NHS ‘free at the point of entry’ system – the quality of service is so variable, and sometimes I feel like I have to lead my GP by the nose towards and diagnosis and then do the same for the treatment as well. In one instance, we even fell out over a disagreement about a diagnosis – when eventually referred to a specialist there was never any doubt what the prognosis was whatso ver. I know I’m going off at a tangent here, but the whole thing makes me really cross. I only go to the GP once every few years, and I’m just about to book an appointment now – gggrrr. It’s only a minor ailment, but I’ll be keeping some of these doctor persuading techniques in mind.

  22. I had a normal pap and the positive HPV test at my last exam. I did not know that I was getting this test until I recieved a call on my cell phone conveying the results. I almost drove into a tree by accident. I think I would have had less anxiety if I were told about the test before hand and what to expect. My doctor’s office automatically tests >30. I have to go back at six months for both tests. I tend to be somewhat of a compulsive worrier to begin with and this set off a reaction that required a prescription for Xanax and extra visits to my therapist. I am considering shopping for a new OB/GYN because I feel that if you are going to give someone a test that can potentially cause stress you should warn them first. I will still request the HPV test (because now I need to know my status- even though I am terrified), but I no longer trust that my doctor is doing what is in my best “emotional” interest.

  23. I had genital warts (had them for almost 8 years, when one day I decided to ask my doctor what it was, he said “well, you are married to a musician, so concerning STDs, you will have much worse problems than this to worry”) and a Pap wich had mild-medium inflammatory signs. Since that I went to another doctor and had an HPV test, I was completely freaked out and needed to know my status. Short story, now I know that I have had 2 high risk HPV strains for a long time, although no important cervical changes; started to going to a psychiatrist and my life has changed completely. So if there is a doctor reading, please, do as much as you can to avoid asking for an HPV test, it does not do any good for the women, it only get us anxious about something we can’t do anything about. And another thing, even if one has sex only with people one deeply cares about, this can happen, and it is bad enough, one really doesn’t need the doctor being so clear about what he thinks of people with this disease…

  24. If you are in your late 30’s can you still clear high risk HPV (pap normal). Also what does it mean when they say that most HPV clears within 2 years. Is that two years from when it is found on a test or two years from when it was actually contracted? This is very confusing.

  25. I am in my late 60’s and all my life I had a normal pap test. My OBGYN Doctor did not tell me prior to taking my pap smear that she was also testing for HPV?
    I received the results by mail.
    My pap test was normal but I tested Positive for HPV? I almost fainted. I did not even know what HPV was.

    I was so angry at my doctor for not informing me prior to this test, and also for not calling me to discuss the results.

    I did not know a that she could do this test without at least advising me of the the cause and treatment of HPV first?

    I will call her tomorrow. I am very disturbed and feel violated.

    I was told to come back in 6 months.

    I will seek a new doctor!

    Is there anything else I can do to report the actions of this doctor?

    Please help.

    Lee

  26. ANonymous-
    So sorry to hear that this was how you found out you had HPV – by a letter.

    I suspect the doc was well inteneded, as are most, but does not understand the impact these test results have on women. A written letter to your doc explaining how you feel will certainly get his/her attention and may change how informs his patients about tis test and how he conveys these results to his patients. I’d cc the letter to the office manager and the head of the practice, if it is not the doc themselves. Also, you can cc the head of the department or patient services if this doc is employed at a medical center.

    I’d also ask that the test be repeated. You may or may not need a colposcopy.

    GOod luck!

  27. Anonymous – HPV usually clears within 2 yrs of diagnosis, in studies that used regular prosective screening.

    Thanks for reading.

  28. Hi

    I’m over 30 and have had only two partners before my now husband. I was tested for stds before I met him as was he.
    I recently had a pap that came back irregular and my doctor ordered the HPV without my consent and I ended up with a $70 bill. Of course I was a bit miffed and pressed them as to why they would order such a thing if I wasn’t even close to the profile of someone who might have HPV and they told me it was mandatory state law. I don’t understand why they don’t just call me in for another pap? And if it’s mandatory state law and essential to my female health why doesn’t my insurance pay for it? I still feel very angry about this whole situation. I feel taken advantage of by my doctor, the state, and my insurance company. Am I wrong to feel that this test is unnecessary and a way to squeeze my pockets a little bit more? In the end I feel it is these situations that make me not go to Doctor’s annually or as often as I should.
    I was hoping you might be able to shed some light on the subject for me.

  29. Anonymous – I don’t know about your state laws, but the HPV test as triage for a slightly abnormal pap is the standard of care. An alternate and equally acceptable standard is to simply repeat the pap.

    Either way, your insurer should be paying for this test or the repeat pap. I would appeal their decision. Your doc should be able to write you a letter of support.

  30. Most doctors don’t tell their patients about how they can prevent and also help change the abnormal pap outcome- without the vaccine. As with any virus, lifestyle and dietary changes can decrease your chance of having an abnormal pap. As the above blogger stated, don’t smoke. Use condoms. Also, take immune boosing vitamins which are antiviral in nature. And the hardest one for many people. Avoid saturated fats, sugar and highly processed foods. A diet rich in fresh fruits and vegetables is best to lower your risk for cervical cancer. By taking these steps not only will you help to clear that virus, but your body will be so much stronger and resiliant to others as well. Check out http://www.trueharmonywellness.com for more OB/GYN and general wellness info.

  31. I am 27 and have had only 1 partner. I hope you can help me. I got a bill from Quest lab after going for a regular pap test with my doctor. The test should never have to cost me a dime since my insurance covers the well womans exam. instead the bill was for 333.00 for numerous tests including the HPV test. My doctor never discussed any extra tests with me. He insists that I contact the insurance company and MAKE them cover the fees. What should I do?
    My pap test was normal and there was no need to go further and test for HPV…

  32. This post really opened my eyes to the marketing side of the HPV. I'm 22 years old and was diagnosed with high risk HPV last year. The first doctor I had was an idiot [there's no other way to describe her after she called me with my abnormal pap results 3 months after it was done].

    I've been lucky to find a new doctor who sits down with me for at least ten minutes before my appointment every time I visit, so that I not only understand which tests he'll be performing, but also the implications of any results.

    I'm glad there were comments to this entry though, because at first I felt you left out many of the important components about HPV: the stigma, the fact that women *do* have to ask their doctors for what they need, and overall the importance of being properly diagnosed [HPV test, pap, colposcopy, etc.] But after your comments, I understand that the purpose was to point out the marketing schemes associated with the test.

    I have a question for you: How many biopsies can a woman have done before there is any permanent damage/interference with normalcy? I'll be having my third one next Tuesday.

  33. Anonymous – I would ask your doctor that question since it all depends on the size of the biopsies taken. If they are small then 3 colposcopies should not be a problem. Best of luck and thanks for reading.

  34. Thanks for the helpful tips on this blog. I tried visiting a naturopathic doctor for CIN 1 that I had from HPV and he put me on a program that reversed my cervical dysplasia in 4 months. I had several bad paps in a row, and his protocol helped me to finally experience a clear pap. You must be certain to see a ND that went to an approved, board certified school, and not all states are licensed yet, otherwise you may be wasting your money. Have others had similar success on naturopathic protocols?

  35. Anonymous – what your naturopath probably did not tell you is that almost all CIN1 paps will eventually resolve without any treatment at all.

    We do know that women who do not smoke, who use condoms and who eat the recommended amounts of fruits and veggies daily will resolve CIN1 faster than those who don't do these things.

    There is no data that programs from naturopaths do any better than this.

    Thanks for reading.

  36. Did I read that earlier post correctly…a woman who is not sexually active yet having annual smears?
    Do you test virgins in the States?
    Surely not…
    That must be a first if it is the case…they are certainly excluded from our program.(and every other program I can think of)
    Also, what is a annual pelvic exam?
    Never heard of such a thing…they are certainly not done in the Netherlands.
    The only pelvic exam I have had was when I was giving birth and the midwife needed to check dilation.

    Our doctors suggest pap smears for sexually active women from age 30 and 5 yearly stopping at 50…some high risk women go on to 60.
    We don't see gyn's unless we have a medical problem. I've never seen one.
    My daughters were born at home with a midwife in attendance (herself a mother of 5)…about 40% of babies are born at home.

    Many low risk women choose not to have smears rather than risk a biopsy for a false positive or have them very infrequently.
    I had my first at 40 and might have one at 50…or 55.
    Your program sounds very strict…lots of tests from an early age and continuing into old age.
    Our doctors would disagree with your program.
    I must say that I'm very relieved we don't follow your program…these sorts of intrusions should be kept to a minimum.
    I don't think they benefit us when they are done too frequently.
    I have enjoyed reading your blog.
    Thank you

  37. Years ago I visited a gynae health clinic and asked to be tested for everything. At the time I had no symptoms but having experienced the end of a difficult relationship I wanted to know my situation before getting involved (and sharing it) with anyone else.

    I specifically asked for HPV screening, and was told they didn't do it because "there's no cure and too many people have it".

    Well, two years later having been diagnosed afterwards with cervical dysplasia I was biopsied and LEEP excisioned and was told at that time my cell abnormalities had been caused by one of the problematic strains of HPV.

    What I find intolerable is that the medical profession sees this situation and thinks it's acceptable. Why aren't people researching *cures* for HPV? Undoubtedly one large factor in that is that there's so little public awareness… why?… because there's no cure and too many people have it. What?! That just doesn't make sense.

    I feel everyone should be offered HPV testing. That way, individuals can make informed decisions about their sexual health. It allows people to be responsible. Right now it seems we are defending the rights of infected individuals to continue spreading an incurable, cancer-causing disease amongst the healthy population because if we talk about it or offer screening someone somewhere might have to live without getting sex… a notion that modern society seems to find abhorrent.

    And as someone who has lived with the consequences of that, the invasive procedures, the invalidation of all emotional concerns by medics who are only interested in hacking around a piece of meat that doesn't argue, I find that situation completely unacceptable.

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