CBS News Exclusive: Study Of State Results Finds H1N1 Not As Prevalent As Feared

(CBS) If you've been diagnosed "probable" or "presumed" 2009 H1N1 or "swine flu" in recent months, you may be surprised to know this: odds are you didn’t have H1N1 flu.

In fact, you probably didn’t have flu at all. That's according to state-by-state test results obtained in a three-month-long CBS News investigation.

The ramifications of this finding are important. According to the Center for Disease Control, CDC, and Britain's National Health Service, once you have H1N1 flu, you're immune from future outbreaks of the same virus. Those who think they've had H1N1 flu -- but haven't -- might mistakenly presume they're immune. As a result, they might skip taking a vaccine that could help them, and expose themselves to others with H1N1 flu under the mistaken belief they won't catch it. Parents might not keep sick children home from school, mistakenly believing they've already had H1N1 flu.

In late July, the CDC abruptly advised states to stop testing for H1N1 flu, and stopped counting individual cases. The rationale given for the CDC guidance to forego testing and tracking individual cases was: why waste resources testing for H1N1 flu when the government has already confirmed there's an epidemic?

Some public health officials privately disagreed with the decision to stop testing and counting, telling CBS News that continued tracking of this new and possibly changing virus was important because H1N1 has a different epidemiology, affects younger people more than seasonal flu and has been shown to have a higher case fatality rate than other flu virus strains.

CBS News learned that the decision to stop counting H1N1 flu cases was made so hastily that states weren't given the opportunity to provide input. Instead, on July 24, the Council for State and Territorial Epidemiologists, CSTE, issued the following notice to state public health officials on behalf of the CDC:

"Attached are the Q&As that will be posted on the CDC website tomorrow explaining why CDC is no longer reporting case counts for novel H1N1. CDC would have liked to have run these by you for input but unfortunately there was not enough time before these needed to be posted (emphasis added)."

On Aug. 4, CBS News asked the CDC for e-mail communications to states and other documents regarding the guidance and its rationale. When CDC did not provide us with the documents, such as state-by-state numbers prior to halting testing and tracking, we filed a Freedom of Information request with the Department of Health and Human Services (HHS). More than two months later, the request has not been fulfilled.

We asked all 50 states for their statistics on state lab-confirmed H1N1 prior to the halt of individual testing and counting in July. The results reveal a pattern that surprised a number of health care professionals we consulted. The vast majority of cases were negative for H1N1 as well as seasonal flu, despite the fact that many states were specifically testing patients deemed to be most likely to have H1N1 flu, based on symptoms and risk factors, such as travel to Mexico.

It’s unknown what patients who tested negative for flu were actually afflicted with since the illness was not otherwise determined. Health experts say it’s assumed the patients had some sort of cold or upper respiratory infection that is just not influenza.

With most cases diagnosed solely on symptoms and risk factors, the H1N1 flu epidemic may seem worse than it is. For example, on Sept. 22, this alarming headline came from Georgetown University in Washington D.C.: "H1N1 Flu Infects Over 250 Georgetown Students."

H1N1 flu can be deadly and an outbreak of 250 students would be an especially troubling cluster. However, the number of sick students came not from lab-confirmed tests but from "estimates" made by counting "students who went to the Student Health Center with flu symptoms, students who called the H1N1 hotline or the Health Center's doctor-on-call, and students who went to the hospital's emergency room."

Without lab testing, it's impossible to know how many of the students actually had H1N1 flu. But the statistical trend indicates it was likely much fewer than 250.

CDC continues to monitor flu in general and H1N1 through "sentinels," which basically act as spot-checks to detect trends around the nation. But at least one state, California, has found value in tracking H1N1 flu in greater detail.

"What we are doing is much more detailed and expensive than what CDC wants," said Dr. Bela Matyas, California's Acting Chief of Emergency Preparedness and Response. "We're gathering data better to answer how severe is the illness. With CDC's fallback position, there are so many uncertainties with who's being counted, it's hard to know how much we're seeing is due to H1N1 flu rather than a mix of influenza diseases generally. We can tell that apart but they can't."

After our conversation with Dr. Matyas, public affairs officials with the California Department of Public Health emphasized to CBS News that they support CDC policy to stop counting individual cases, maintaining that the state has the resources to gather more specific testing data than the CDC.

Because of the uncertainties, the CDC advises even those who were told they had H1N1 to get vaccinated unless they had lab confirmation. "Persons who are uncertain about how they were diagnosed should get the 2009 H1N1 vaccine."

That's unwelcome news for a Marietta, Georgia mom whose two children were diagnosed with "probable" H1N1 flu over the summer. She hoped that would mean they wouldn't need the hastily developed H1N1 flu vaccine. However, since their cases were never confirmed with lab tests, the CDC advises they get the vaccine. "I wish they had tested and that I knew for sure whether they had it. I'm not anxious to give them an experimental vaccine if they don't need it."

Speaking to CBS' "60 Minutes," CDC Director Dr. Frieden said he has confidence that the vaccine will be safe and effective: "We're confident it will be effective we have every reason to believe that it will be safe."

However, the CDC recommendation for those who had "probable" or "presumed" H1N1 flu to go ahead and get vaccinated anyway means the relatively small proportion of those who actually did have H1N1 flu will be getting the vaccine unnecessarily. This exposes them to rare but significant side effects, such as paralysis from Guillain-Barre syndrome.

It also uses up vaccine, which is said to be in short supply. The CDC was hoping to have shipped 40 million doses by the end of October, but only about 30 million doses will be available this month.

[Ping to this thread for Joe & DVDMom]

I know the rule when I was an Assistant Teacher in a Montessori school was as follows — a fever of 101 or above means an automatic “pick-up” by the parents, and they are NOT allowed back in school until the fever had been gone (without medication) for at least 24 hours. (In some cases where children have been given motrin and it wore off halfway through the morning and we discovered the child was STILL sick — well, those families were kept track of and if a pattern developed we eventually required them to provide a DOCTOR’s note to return to guarantee they weren’t loading the kids up with drugs before dropping them off... Very sad, but true). I do have to say this was 18 years ago that I was teaching, so things may have changed...

As a parent I would be like you (if we didn’t homeschool) — a fever equals at least a day at home in bed with rest, and fluids.

I have friends in various areas of the country (mostly in the NW Suburbs of Chicago) that are being informed that children in their kids classes are sick with H1N1. One came home with a note today saying 3-4 kids were out sick with H1N1. I had another friend living in the same area whose son had HIVES for a week, then developed a fever of 104. She then took him to the ER with the fever and he came back positive for H1N1 — their regular doctor didn’t consider he had the flu due to the hives (thought it was some kind of allergic reaction even though Benadryl did NOTHING for the hives).

This sure is one strange virus... I’ve also heard some people come down with what at first appears to be pink-eye (conjunctivitis). Regardless, it doesn’t even seem as if many pediatricians KNOW what to look for right now if it doesn’t present as a “classic” flu right away...

Sorry to rant... I almost tempted to get out my tin foil hat again. I honestly, truly believe that this was an engineered virus, and that NO-ONE knows what the hell will happen in the future with it... Too many strange symptoms, and like you said — strange reports from schools and such as well...

All I know is that my kids are NOT getting this vaccine, and I STRONGLY urge all my friends who are pregnant and who have children to SERIOUSLY research EVERYTHING they can on this vaccine before they decide on the shot.

Thanks for your comments... I know not many people believe me either as my family caught it in early April (right when it started hitting the news). All I know is that my husband and children have never been so sick in their lives... As a parent you probably know how hard it is to keep a child in bed when they are sick. Well, I had NO COMPLAINTS from my kids who were in bed for 1 1/2 weeks!

My one daughter (after about 5 days) decided she couldn’t stand being in bed and felt “better” (plus her fever had gone down a lot). I (stupidly) let her sit outside on the front porch for some fresh air (it was nice out), she decided to walk around the block (which I specifically told her NOT to do, BTW — ugh, kids! LOL). The next day — back in bed again, and then also had a horrid sore throat to boot. She ended up in bed for a extra week.

Me? Well, the meds I’m on regularly hid the aches and the fever and it hit me in the chest after a week of taking care of the rest of my brood! I have to tell you that I literally thought I really was going to die (coughing up blood and HORRID pain with every breath). Thank God I went to the doctor when I did — they think I had a secondary infection on top of the virus (which at the time they said was “some kind of flu going around”), and in my case a really strong antibiotic was also prescribed, along with inhalers. No anti-virals because they figured we’d all been sick too long already (plus as I said this was before they realized it wasn’t JUST in Mexico).

Thanks for the info on the rapid test DVD Mom put up. I’m sure it’s probably in my pings somewhere, I’ll go check for it. I haven’t been here in a while...

Semi-silver lining for me — they ordered a Chest CT for me and found a growth on my adrenal gland by “accident”. (I go in tomorrow to see if it’s grown at all over the last 6 months...)

Sorry this post was so long, and I may have repeated things I already posted... Worrisome night for me here.

Let me add this.

When I went and saw the physician’s assistant, I had just gotten over a week of the swine flu. I didn’t have a fever. So the swine flu had passed. This was normal. This was the normal course of the swine flu.

The pediatrician had told me to send my daughter back to school after the fever had passed. Her fever was gone by Friday night. She returned to school the next Monday.

My fever had passed on the same Friday. My coughing started that weekend. On Tuesday, I saw the physician’s assistant at my doctor’s office. The cough was terrible.

I had bronchitis.

The JERK did not believe I had had the swine flu.

Now, I haven’t had to go back to the doctor, since.

But, I’ll tell you this. The next time I go back, I won’t see him. I will hold out to see my doctor. I will put my foot down and DEMAND to see her, and complain that I will not see him, I need to see her.

And when I do see her, I will tell her what he said to me, what the pediatrician said about the testing, how he treated me, what other medical professionals around the world have said about the swine flu... and simply put, I will tell my doctor that I will never see her physician’s assistant, again.

It’s dangerous when they REFUSE to LISTEN to the patients. We are NOT stupid.

Oh, and that post by DVDMom. It’s from last night.

Makes me wonder how many of us had the disease progress like that... From a flu to bronchitis/bronchial infections. From what I remember about the folks who ended up dying from this flu, it seems they were all on respirators, and had prior medical problems (I’m thinking now that it was probably respiratory problems; chronic bronchitis, asthma, COPD, and the like.) It just seems logical to me that those were these “underlying conditions” they don’t reveal... Especially with the advice out there that children with asthma should definitely receive the vaccine. [I have one acquaintance from HS that has a child with egg allergies, AND asthma — poor thing is beside herself with worry over this...]

I definitely hear you as far as doctors not thinking their patients are smart enough to know what is going on. I’ve just gotten to the point with things where, for instance, the last time I was in the ER I informed the nurses and the doctors I saw that I used to read the Merck Manual for FUN back when I was a kid (I know a little weird, but it’s true! I even have a current copy that I’ve caught my daughter reading like I used to — she told me a little bit ago she wants to be a pharmacist...).

Anyway, I informed them that while I fully realize I don’t know enough to do their jobs obviously, I do know a LOT (too much for my own good in some ways) - sorta like a “medical junkie”. I found they then treated me a lot differently than previous visits. They didn’t mince words, and didn’t bother trying to dumb things down, or wave off my concerns quite so easily. I found that they treated me as more of a “partner” in trying to figure out exactly what was wrong instead of as some object they were studying... I suppose it depends on the doctors and nurses own long personalities as to how they deal with patients like us though... Some think that unless you have an MD degree on your wall you can’t possibly know ANYTHING!

I can understand some doctors frustrations with many people too though — I’ve heard so many stories of “medical student syndrome” popping up in the “civilian” population due to the popularity of shows like House, ER, etc... People who show up after the latest episodes CONVINCED they have whatever effected the patient in the last show. Plus, I know a LOT of medical professionals HATE that information is so readily available on the internet nowadays. I imagine it is kind of hard for some whose patients are constantly second-guessing their diagnoses and such... It’s a real shame that some doctors don’t realize that this information, and educated patients can actually HELP them to help US though. As I said, I think too many just assume we jump to conclusions too quickly, or that we can’t possibly understand what we research ourselves — especially if we use the internet at ALL to research, no matter what sites we choose!

I’m actually going through something similar right now with a growth I have on my adrenal gland. I’ve done a TON of serious research and I don’t believe the “wait and see” attitude they are taking with me at the moment is right. Depending on what they find tomorrow on my CT scan, and depending on what my doctor says when she calls me with the results I will probably at LEAST get a second opinion, or make an appointment with an endocrinologist. I have mild symptoms that indicate that this growth is not dormant, and it appears to me as if my doctor doesn’t take these things into account instead attributing them to other problems I have.

Anyway, sorry to talk your ear off. I think I already mentioned on the thread I go in for my CT scan tomorrow so this topic is really on my mind tonight... It’s hard when you feel as if you may know more than your doctor about a specific situation. Like I said, I would never say that I could do their job, but when it comes to what is happening with my own body, and this particular problem I’m facing, I don’t think my general practitioner is really that educated in this particular area — it’s definitely a specialist-type case...

Anyway, I definitely urge you to tell your doctor what your experience was with her PA. She needs to know this... Even if you write a letter instead of waiting till you need to go in next time.

I wish I had done so years ago in regards to an OB nurse who put me through hell the night before I gave birth to my 3rd child. If it hadn’t been my 3rd child, and I didn’t know what was going on — well, let’s just say I was >< this close to telling my husband let’s just leave and have the baby at home. Thank God the shift changed at that point, and my next nurse was an angel (maybe even literally - she was THAT wonderful!). I think she probably got in trouble anyway because the intern who came to break my water to “induce” me took 2 steps into the room and declared (by the look on my face) that I was in ACTIVE labor even if the contractions weren’t showing on the monitor! Everything went REALLY fast after that and when my doctor arrived at the hospital he was NOT a happy camper, but I don’t think he knew just how bad that nurse was... I still feel bad about NOT writing a complaint to the hospital, because I can’t imagine what it would’ve been like had it been my first child with a nurse like her...

OK, sorry again this is so long and I’m getting off topic. I’m sure we could probably trade stories (good and bad) on this topic all night! LOL Thanks for listening! :)

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