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.

Not enough resources

The CDC's role in regards to Hepatitis C (HCV), is largely informative and occasionally it supports testing.

I often find their lack of information, or accidental misinformation disturbing.
I check the site every now and again, to see what materials they've updated/corrected. While looking at the demographic specific fact sheets i read something that didn't seem right.
According to the CDC(2013) of the 2.2 million members of the US population that are incarcerated, 1/3rd have hepatitis C.


Additionally, it claims that " ...Bleaching, boiling, heating with a flame, or using common cleaning fluids, alcohol, or peroxide will not clean needles, tools, and other instruments. These methods are not strong enough to kill the Hepatitis C virus. The virus can still spread easily from one person to another."

Hold up, what?

Canada's CATIE explains a method of cleaning after HCV infected blood is accidentally spilled.


In fact, the CDC's website contradicts the claim made in the Hepatitis C fact sheet for prisoners.


But as i've stated, fact sheets can be wrong, so this is all well and good, but here are the facts: 

 A 1:10 Bleach solution has 0% of the virus remaining after a minute, which means wipe the bleach off the surface after letting it sit in the area for over a minute.
Bleach wrecks living organisms, but what about Ethyl Alcohol? A 70% solution can knock it down to 7-19% after a minute. While there hasn't been a study using 90+, nor a longer time, it can be assumed the range is slightly lower.  

I've used bleach, and/or alcohol depending upon the spill. Often cleaning the surface multiple times. However one go with bleach will do the trick.

If you don't clean that surface off, the virus can remain on the surface, at room temp, for about six weeks.


Why the CDC gives the wrong information in their Hepatitis C for Prisoners Fact Sheet, I can't say. But let's look at that 1/3rd claim...

The truth of the matter is that somewhere between 16-41% have had contact with HCV, while somewhere between 12-35% are chronically infected.PREVIOUS INFORMATION WAS BASED ON POTENTIAL CONTACT RATHER THAN ACTUALLY INFECTED. So
CORRECTION: ~16% of prisoners + people in jail have reported HCV 


Perhaps I'm nitpicking on the 1/3rd, but lets critically understand the scope of this shitty piece of information.

The prison population is medically evaluated via physicals, and despite this fact, we don't know how many people are infected. Prisons are effectively an incubator for a disease like this.
Consider the length of treatment: 12-48 weeks. During the time, it's imperative that those receiving treatment do not re-infect themselves. Without knowing who has it, and who doesn't, those undergoing treatment run the risk of an exposure rate nearly 20 times higher than those outside of prison.

It means treatments will be less effective, and cost more for everyone involved.
It's also worth mentioning that a large portion of this population are released within a year, never having been tested despite the massive risk of exposure. When incarcerated individuals return to society they can potentially re-introduce Hepatitis C into the non-incarcerated population especially if they're unaware they have it.

So how can we help? 

It's all about testing, if we can get a national dialogue going about HCV testing, information, and care, we can get help the those who need it, and stop this epidemic. 
Testing in at-risk populations is always the first step, and while we've focused primarily on baby-boomers, the incarcerated population can be the most readily mandated and as it's rates grow, so will the entire population's.


The CDC has been upping it's game the last few years,(The CDC does have a more ambitious action plan for 2014-2016, and yes it's a division of aids.gov.  If you want the typically most accurate CDC info, aids.gov is the place for HCV CDC info) and it's started getting the ball rolling in regards to at-risk populations. But HCV advocacy needs your help, in addition to the CDC there are dozens of organizations that provide testing, information and help connect patients with the care they need. Most of which are small, and HCV is just a part of what they do.

It's a silent epidemic on two fronts: not only is it a silent killer, sometimes going decades unnoticed, the national dialogue has been largely silent. 

National Hepatitis Testing Day Site

Testing is an important part of helping to eradicate the virus. National Testing day is May 19th 2015.


When i type in San Diego, the closest test location is Phoenix, or San Francisco. Encourage your local municipality to register a testing site for test day.
If we want to make Hepatitis C history, we need to properly inform, test, cure, and clean up.