We had just wrapped up a three day conference for Help4Hep, and I was wearing a shirt, a shirt I originally wore for a press conference against the BRCA.(The awful replacement for the ACA on the senate floor last year.) A form fitting black cotton T-shirt that reads: “Hello, My preexisting condition is Hepatitis C.” The shirt’s purpose was to bring to people’s attention two things: One that Preexisting conditions aren’t really visible, but they are common, and Two, That Hepatitis C is among them, and I have it. Even while being cured of Hep C, in the eyes of the medical world and insurance I will forever be a Hepatitis C patient.
Maybe it was because I was standing alone before we boarded, maybe it’s because I was visible, sitting in the front, but regardless why the next series of events happened, it’s unfortunate that they did.
I wear a mask because I’m immunocompromised due to Liver Transplant
I was seated in the front row, and I was talking with the lady seated next to me about hepatitis C. My shirt was a conversation starter, earlier I’d explained the prevalence and the cure to a few others who’d asked. She was explaining to me that her mother had it and we spoke about the cure, to which she seemed surprised, but often people are unaware of it, so I went into more detail. I explained that there’s a lot of ignorance around the virus, and the cure, largely due to stigma about even talking about.
“Excuse me sir, I’m going to need to talk to you.” The flight attendant interrupted. He and another attendant pulled me off the plane and onto the boarding ramp. he began ” A passenger expressed concern about your shirt, could you explain?” Without thinking I responded I’m a Hepatitis C advocate, I just came from a conference. Noting their faces unchanging waiting for more information I continued. There’s a lot of ignorance about the disease, and a large part of that is due to stigma, so I’m not surprised someone is concerned. They asked if it was an issue.
And I responded, unsure if they meant an issue for me or for them, as the situation implied they took issue. “It’s a blood borne pathogen, it’s blood to blood only,” I continued, still waiting for a response I explained that I was cured last year, but regardless this shirt is my status, and it’s not an issue. I’d had enough of their concerned faces, and turned around and went back to my seat.
I was far too aware of the level of control airlines have over passengers, and now being a transplant patient I only had so much medication with me, so being stuck there was a concern.…
It seems insane that something so necessary could increase in price so much over a short period of time, but Healthcare premiums have doubled in most states since 2013.
What’s worse is that for some states; Alabama, Alaska, and Oklahoma, it nearly tripled. The ACA’s three tiered structure was created to eat some of those cost increases and ensure that insurers had access to a larger market. The individual mandate helps keep prices from ballooning faster. And the premium credit gave those with low income, access to the market. The ACA was installed to slow the growth of premiums, and yet it outpaced inflation by more than 95%, this often leaves most consumers wondering…why?
There are a number of reasons for insurance premium increases, one has to do with the way companies responded to the ACA. Many retail employers began spreading out workers, opting for more employees, lowering the amount of workers available to receive full-time benefits, Ironically mostly in government-based hourly jobs. Companies began going for less Cadillac plans and focused on silver packages, which caused a sudden surge in middle package buying, increasing the prices overall. But company reactions were a drop in the bucket compared to the next two components.
An aging market
As boomers grow older, their health demands rise; and while hospital use is up, nursing and doctor shortages can create three to four month long wait times for appointments. Boomers’ reliance on pharmaceutical medication outpaces any other generation. Medicare spending in 2015 was $137.4 billion on prescription drugs in 2015, up from $121.5 billion in 2014. Medicare Part B spent $24.6 billion on prescription drugs in 2015, up from $21.5 billion in 2014. A whopping $7.03 billion was on Hep C meds alone which cured maybe ten thousand people, and with nearly 5 million Americans needing treatment it’s easier to see why premiums are rising. But it’s not just meds they need. Surgeries and outpatient services ranging from colonoscopies to knee replacement are up across the nation as our nation ages.
Valeant Pharmaceuticals’ Ativan increased by more than 1,264 percent, accounting for $5.3 million in Medicaid drug spending;
Turing Pharmaceutical‘s daraprim increased by 874 percent, accounting for $16 million in Medicaid spending; and
Hydroxycholoroquine sulfate increased by 489 percent.
Each of these increases doesn’t reflect need by the consumer, nor a need for research in development. The price increases are a measure of market control given to exclusivity of production. Investment firms purchase companies with the goal of milking them for investors as they shift focus to their new number one product: their stock. These kinds of moves produce volatility and increase the prices insurers need to set to control for.
As the individual mandate is now set to disappear in 2019, it raises a serious question, will consumers be able to tolerate Premiums which cost more than their rent/mortgage payments?
As May is coming up, I wanted to highlight the amazing changes that have happened in the past year when it comes to treatments and the bright future there is for those with Hepatitis C.
Of the daunting challenges to overcome, awareness can help address one of the largest ones. The fact that the majority of those who have the illness will go unaware until they begin showing symptoms and by then permanent damage can already be done.
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. 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 4/12/15 Google high-quality image 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.
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. Additionally there is no list, of what these sources area.
Ethically it should list sources, as “Sources” and not disclose any of them until the user checks the sources themselves.
While yes Google consulted with the Mayo Clinic, clearly not for that medical data, which is what makes this tool so useful. 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. Since then, Google has changed the main transmission method to “Spreads Easily.” Which, as a blood-born pathogen is far from the truth. 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.
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.