Just the facts i guess

I was inspired to write this from a quote in a fellow advocate's blog.


It was a quote from the CDC, and not surprisingly...it doesn't make sense if read it more thoroughly.

"While anyone can get Hepatitis C, more than 75% of adults infected are baby boomers, people born from 1945 through 1965.....The reason that baby boomers have high rates of Hepatitis C is not completely understood. Most boomers are believed to have become infected in the 1970s and 1980s when rates of Hepatitis C were the highest. Since people with Hepatitis C can live for decades without symptoms, many baby boomers are unknowingly living with an infection they got many years ago.

 Hepatitis C is primarily spread through contact with blood from an infected person. Many baby boomers could have gotten infected from contaminated blood and blood products before widespread screening of the blood supply in 1992 and universal precautions were adopted. Others may have become infected from injecting drugs, even if only once in the past. Still, many baby boomers do not know how or when they were infected. "


The CDC needs to focus more on facts and less on speculative analysis. What I've underlined is what caught my eye as peculiar....

Because.. turns out Hepatitis C (HCV) wasn't ID'd until 1989.

Until then Non-A Non-B Hepatitis grouped a lot of patients together in a category they'd soon find to be far smaller when the types were made more clear. The only logic that the CDC could possibly follow would be to assume that every boomer who re-tested positive for HCV is only the tip of a then shrinking iceberg  so to speak.

Even with the boomer population slowly shrinking, the logic is still far from well formed.

With a little bit of understanding of demographics it's easy to see why baby-boomers are the largest group affected.

First reason: It's the biggest generation. Literally. (This website's kinda cool you can watch as generations impact population.)

While Millennials will outnumber boomers come 2020, Boomers have two advantages when it comes to determining diagnoses. Boomers have had more opportunities to be tested, and (if they have it) they've a higher probability of having lived with the virus for a while, so they have a higher likelihood of potential liver disease symptoms.

But it's more complex, even those numbers couldn't reach 75% of those who have it, so what else goes into that dramatic ratio?

Drugs.
Every generation has their drugs,  Millennials favor pills to injections, GenXers saw an influx of cocaine. And by the time they became adults cocaine was much more accessible.

And Boomers...love drugs, just like really love drugs.

At 21-39 Boomers had around a 30% participation rate, while Xers at the same age hit around 23%. A 7% difference is huge,  considering two more factors:
-Boomers are a much larger population, and
-"Controlled substances" didn't become a legal thing until the 70s.
Which means cannabis was not wholly part of that 30% for boomers, but it was when Xers answered the same question a few decades later.

RXs didn't become a major player in controlled substances until the 80's, which means Xers and Millennials had less exposure to HCV positive IDUs (Injection Drug Users).

Boomers also didn't just stop after the good ol' college try, they've increased the rate of drug overdose by 11 fold, and increased the incarceration rate for drug offenses similarly.


But sure, "..not completely understood..." let's go that way CDC, but drug habits aren't the only category where Boomers lead the way.

Prison.

With age comes...jail time for 1 in 37 Americans. Boomers, due mostly to the larger population, have the highest time served behind bars. Prison is a terrible environment in general, add a life threatening disease and it's even worse, and Baby Boomers are caught in the cross-hairs. Boomers have the largest incarceration rate of any generation at that same age group.
Yes, that is 1974-2001 data, which means it only taps into boomers prior to hitting 55 years of age. 

So what does HCV look like in prisons today?
in 2011/12 roughly 16% of  prisoners/people in jail reported having/had Hepatitis C.
Not 1 in 3 as the incarceration fact sheet explains.
 But that fact sheet is full of holes, as I've explained before.

Blood Tranfusion/Organ Transplant.
Boomers had decades of potential exposure through transfusion or transplant prior to 1992, while even the oldest Millennials were just leaving elementary school, and had less potential exposure to those means.

TL;DR Boomers are the largest generation, have the highest IDU and incarceration rates, and had the highest risk of exposure due to transplant/transfusion prior to 1992. Which is why they are, the generation most at risk for HCV.

Sure, CDC let's go with "...not completely understood..." CDC fact sheets are wholly wrong, they're just wrong enough.

The CDC has a responsibility to produce readily consumable fact sheets regarding disease, these sheets read more like poor advertising pamphlets than fact sheets.

Canada's CATIE has beautiful fact sheets with sources.
If you're a boomer these are just SOME of the biggest reasons why you should get tested.
The likelihood of transmission for boomers is pretty high among groups, and it's best to find out before cirrhosis hits. (trust me, advanced cirrhosis is a bummer, you don't want it if you can avoid it.)

By year's end there will be more than a dozen options for HCV treatment. If you find you're infected, find out your genotype and work with your doc to get treatment.

Google this

Last week I tried to upload a video, it didn't work properly but here's the gist of the first half in better detail:

Google has added a rather nifty little feature.


It now summarizes ailments and diseases using aggregated data.


It's easy to understand why this can be a terrible idea, but considering 1 in 20 Google searches are medical related it's not hard to understand why it was done.

For those of you not hip web-lingo, it's a scraper.  (But the article above says it consulted with doctors! Riiiiight... maybe for those high quality images, how to interpret the data, and probably for the User Interface, but not for that data.)

Scrapers copy content and aggregate data onto one platform, typically a website, however recently apps have become fantastic at using scrapers.

Let's look at the present 4/12/15 Google  high-quality medical data for Hep C.

I can see a glaring issue without having to go much further. Under contagious its top listing says that it's mainly spread by sexual contact. When you select "More about this condition" it displays below.

The main methods of transmission are in order: Intravenous Drug Use, Transfusion (in the USA prior to 1992, in Canada prior to 1990), and needle stick/Health care worker exposure.

This is the principle problem with scrapers. Even it grabs the data properly, Sexual intercourse using has the longest section when describing the transmission methods...why?
Because there is a lot of controversy around it. The most recent poll was done by the CDC in 2010, and the questions that were asked, were fairly direct.

Even in other polls that have come out through the years, this issue always comes up:  The biggest section of the Hep C population consists of Intravenous, mostly illegal, drug users. It's far less damning for someone to claim to have received it sexually than via drug use.

When studies have polled HCV patients directly, usually through a doctor, they find slightly better information, which is why we have such an interesting spread of information. They also have been examining the virus, to see how likely these claims could be. E.G. looking at the life of the virus outside the body, looking at how the HCV RNA in sperm is typically inert or non-existent. (it's around 9% of the HCV infected male population that have it, and less than 20% of that 9% excrete enough for it to potentially be transferred)

The less likely means of transmission as in order: Vertical Transfer: mother to child (it does not go father to child), Personal items (nail clippers, razors, etc..), Sexually can even further be broken down: rough unprotected anal intercourse, rough unprotected vaginal intercourse, unprotected intercourse/rough intercourse. It is not simply by means of sexual contact, which is a much larger category.

Okay Google, now...let's talk about how we correct this problem. There is a feedback button at the bottom for correcting mistakes. 

But this is also terrible, because most of the time people who Google ailments and diseases are usually anything but experts. So the idea that an under/uninformed user is going to be able to use that feature is silly, at best. In fact, many who use this method, may reinforce what Google says by repeating their new-found knowledge to others who are under/uninformed.

The feedback method is used a lot by Wikipedia. And the correction method works for Wikipedia because often times authors/experts will correct the information using verifiable credentials.
But even still, Wikipedia's accuracy is at the mercy of its users.

The other issue with this new presentation of information is the listing of sources. Google is borrowing the credibility of the top websites in its scraper. The Sources listing as "Mayo Clinic and others" uses a recognizable name to help a user view this information as accurate. 

Ethically it should list sources, as "Sources" and not disclose any of them until the user checks the sources themselves. Not only would it allow Google a better idea as to how many of their users trust this quick medical information, but it would also allow Google to randomize the presentation of sources to encourage users to verify the medical information.

Why? Because if you see Mayo Clinic, 9GAG, WebMD and Top Ten medical facts about DISEASE YOU GOOGLED listed as sources, chances are you'll look at the info with more scrutiny.

Right now sexual contact is still the main method of transmission listed, please Google Hep C, and help correct it. Also if you're a medical professional, please help correct the information you know to be false. And please ask your Doc/Specialist(s) to help correct false information as well.

It's either we do this, or I'm going to keep adding "Licking infected purple toads." to the main cause. So that users approach the information with the caution it deserves.

While there is a lot of medical information on the web at your fingertips, always tread with caution. Incorrect information, or half-cocked information should never be used for diagnosis. The internet can provide you with the questions you need to ask, the help of communities, and other resources to get help.

Misinformation for medical information is potentially deadly, and after all the internet is mostly a series of tubes.