PLEASE HELP: Google presently has incorrect medical info listed for Hep C, you can help in a few seconds!

So with Lucinda RN and HepMag.com's help we've managed to knock "sexual contact" off the top contender spot for contagious, but now it's even worse!

The main method of transmission is now listed as "Spreads easily"

Please help us correct this issue! Follow the steps below:

Step 1: select the feedback button at the bottom of the app.

Once you've selected the feed back button it's time for Step 2. 

Step 2: select the "contagious" category highlighted above.

Step 3: Once you select that category a "what's wrong with this?" will prompt.
Please enter "Spreads via contaminated blood to blood contact"

Step 4: Select/click send!

Once you've clicked send, this message will display confirming you submission! 

And Voila! within a few seconds you've just helped correct a major problem! There are two more sectors with the same issue however... there's still more incorrect info.

Under common , on that first About Tab where they have 200K to 3M US cases per year its actually 21,870 cases of acute Hepatitis C virus infections reported in the United States in 2012, and an estimated 3.2 million persons in the United States have chronic Hepatitis C virus infection. 

So please put: "About 22k new cases per year, 3.2 million Chronically infected persons in the US."

Under treatment Tab, 

The Prescription category :

"Simeprevir rarely used in US. Should be sofosbuvir/ledipasvir (Harvoni) or ombitasvir/paritaprevir/ritonavir + dasabuvir (Viekira Pak), with or without ribavirin"

And for Procedures:

Liver transplantation not common.

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.

Vlogging Molly

Warning: i swear, and this video, probably has that shit in it. but whatever. i had to rerecord this thing like four times, because Google's servers kept dropping it.

ಠ_ಠ

I probably mention sex, i have no idea, i haven't watched the video, edited or anything. i don't like doing that, i feel it takes away from the vlog, Because to me, it's a conversation between me, and you.

27 MORE DAYS!

The video is down, it might come up soon, whenever Google decides the video should post.
This happened often with my older vlogs.
If this keeps up, on Monday i will be posting a standard blog entry regarding what i talked about in the vlog.

I will also be vlogging several videos over the coming weeks, in conjunction with a new youtube channel.

Numbers and one last bottle.

This is the last bottle of pills of Harvoni I will take.

In 28 days i will be finished with my fifth (and hopefully final treatment.)

Over the course of my life i have spent One year, six months, two weeks, and three days undergoing a treatment for Hepatitis C(HCV) I will have spent 23 days in the hospital, for HCV related issues that either nearly killed me, or as of a result of complications, nearly killed me. I will have spent a total of 14 hours undergoing imaging, 8 hours under the knife (surgery), and had over 200 visits to the doc.

In 28 days, i will be finished with this treatment. In four weeks, i will be able to check the second 0 off my list, and all that's left is SVR 12 in August. With three 0s in a row i will be cured.

The side effects of Harvoni were nothing in comparison the my previous treatments. The ease of a oral once per day pill makes this treatment something i hope is readied for use for children with HCV soon. Presently the first treatment (Peg-Interferon+Ribavirin) i went on, is the one available to children save special cases.

With only 28 days left, This will probably be the longest month I've had in years.


In celebration, tomorrow I will be doing a vlog, as it's been a while since I've done one.

If this title were a pattern it would be damask.

There is a long list of terrible health issues most doctors will tell you regarding the health factors of smoking cigarettes.

If the varieties of cancer, lung, heart, and throat problems sound terrible, there is one other organ that is constantly affected by smoke.

The liver. Smoking with liver disease isn't a good idea and dramatically raises your chances for liver cancer, but what about it's affects on other liver related issues?

For a time, i smoked cigars, not really realizing the full extent of the damage it was causing.
It's not hard to see that the liver would be adversely affected by smoking, as it filters your blood.

Assumptions are great, but it's better with facts.

The study looks at Cigarette smoking's affect on the liver, as well at its affect on a compromised liver (NAFLD/NASH)

Cigarette smoking, in the short term:

"...these results indicate that smoking does not cause acute effects on the liver."

Short exposure to cigarette smoke doesn't have a huge impact on the liver, which can imply that occasional/short exposure, to second hand smoke will have a similar result.

But what about the long run? 

"...These results show that (cigarette smoking) induces profibrogenic gene expression in the liver, yet does not induce liver fibrosis per se."

What the shit does this mean.

Well it means that cigarette smoking doesn't cause the fibrosis, but it can help fibrosis along if it already exists. So while i do not advocate smoking, and encourage quitting ASAP...

If you aren't cirrhotic( AKA are at F0 coming up on F1) you can slowly ease off smoking and it won't have much impact as if you were to cut it off cold turkey.

The F0-4(6 in some countries) indicates the level of liver fibrosis/cirrhosis in a liver.

F0 .	No fibrosis	You should probably stop smoking.
F1 .	Portal fibrosis without septa (mild)	You need to stop smoking.
F2 .	Portal fibrosis with rare septa (moderate)	If you haven't already, stop smoking, as you're now hindering your liver, and will result in faster liver damage.
F3 .	Numerous septa without cirrhosis (severe)	Don't smoke. see that shit up there^^ it's worse down here.
F4 .	Cirrhosis.	Don't smoke, risk not getting a transplant, smoking and alcohol can decrease your likelihood of getting a liver in time.

Additionally, as cigarette smoking is not typically accounted for in FDA approval(On page 5 are drug interactions for Harvoni) for liver RXs, there is no telling what odd side effects you may encounter.

ASIDE:
If you've recently had a physical, blood work, or check up, i recommend this handy chart. (Usually blood work has normal ranges written in, but if you ever want clarification.)

Why would it's title be damask? because it's smokin'

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.

At first i was afraid,

Over each of the various treatments I've been on, every so often the subject of willpower comes up.  Many are impressed by a never-say-die attitude. But to me, survival is only so impressive.

The inner-strength, Willpower, is an amazing force and I've come to find that there are two main manifestations.

The unyielding force that protects, and keeps you going, is resistance. It is defensive, for me, it has helped me ignore any other option but the next treatment, and getting cured. I resist the temptations that have come in front of me, that may cause my liver damage. In college, many options came before me. And for me, there is no morality regarding alcohol, drugs or anything else of that nature, there is only my mortality. How many years of my life, is that drink worth? How long can I tolerate this before I need whatever pain med they'll give me?

(There are certain pain meds which aren't as impactful on the liver. Here's a good breakdown of NSAIDs Opiates and OTCs, but there isn't exactly a standard in practice, so not every nurse understands the degree of liver damage/how much a patient may be able to tolerate a pain med. A few years ago I reframed what I told nurses: I have  HCV, my liver is decomp, and I refuse morphine, please advise on pain meds with less hepatic impact.)

I have spent so much energy on resistance, that I've lost a lot of the other very similar manifestation.

Persistence, the ability to force that willpower on the world, to keep moving forward similarly unrelenting like resistance, but in offensive stance. It is the drive, the motivation that feeds the need to be bigger than ones' self. I am finding my fuel for this, in taking the experience and understanding of other's I've gained through the introspection of treatment and its subsequent failure. In a way taking to my personal shortcomings and applying that same attitude. Much like in treatment, it is the slow grading process of constant trial that has given me more value for the goal. If I am to run, I should walk first, if am to walk, I should crawl first, and if I am to get off my ass I should probably get up first.

The two manifestations are methodically the same, but used for different purposes. When fear or doubt begins to could my vision, I find strength in review of my last choices. But rather than focus on what could I have done, I break down what I did, and turn my attention to the notion that given I've made these choices, how will each impact my future. It's part of the process of introspection that pushed me forward through treatment, and helps illuminate the path I wish to take. The light of hope and confidence does wonders to dispel fear and doubt.