The Federal Communications Commission (FCC) is proposing a critical change in how the Internet is regulated, taking a vote on Thursday, Dec. 14, that could spell an end to the notion of a free and open web.
Today we're hearing from Marina Tsaplina, a fellow type 1 advocate in New York who founded The Betes Organization and is passionate about this issue and its potential impact on our own Diabetes Community and empowered patients across the globe...
A Threat to Online Patient Communities, by Marina Tsaplina
Imagine if the Diabetes Online Community (DOC) and similar online peer-connecting communities had never been able to form in the first place?
No matter when you hopped online for the first time and found the DOC, and all of those sharing their stories and tidbits about living with diabetes, all it took was a bit of Googling or online exploration to enter this 21st Century universe of information.
A free and open Internet has been key, giving everyone equal opportunity to create online content and access what's out there. That's been the foundation of the growing empowered online patient movement.
As people with diabetes, we've come to expect the stable presence of our online patient community and rely on access to online health data. We share our struggles, triumphs, hard-earned medical knowledge and wisdom of living with health condition(s) through a vibrant, ever-growing and changing landscape of blogs, health websites (such as this one), chats, non-profit org resources, and more. There are countless examples going back more than a decade.
In just one recent example, Laddie’s blog documents her experience of transitioning to Medicare. Her invaluable first-person account and research offers aid to other PWDs (people with diabetes) going through the same transition.
The resources that make up the DOC provide both vital support and critical health information. We expect equal access to these online resources. We assume that our favorite patient blog will be as easy to find and will load in our browser as quickly as the blog of any given medical device or pharmaceutical company.
Yet now, that basic tenant of an open and free Internet is in danger.
Net Neutrality 101
The principle that all online information must be treated the same way by your Internet Service Provider (ISP) is called Net Neutrality.
Since the Internet's start, great innovation has taken place online because of this principle. It has allowed any individual to be able to become an “online content creator” and all online content must be treated the same way. Your ISP cannot slow down certain websites, throttle speeds, or put up a pay wall for access to specific content.
That is what is currently under threat -- along with whatever damage comes to online patient communities, patient advocacy, innovation, and access to unbiased health data.
Without going too deeply into the nitty-gritty details, a vote on December 14 by FCC Chairman Ajit Pai aims to gut vital Net Neutrality protections that will make it legal for ISP’s such as Verizon, Comcast and AT&T to charge end-users (that's us) and content providers (such as DiabetesMine) extra monthly fees to access online content.
In essence, this could lead to “fast” lanes and “slow” lanes on the Internet.
An interesting stat: Research shows that for every tenth of a second that goes by waiting for a website to load, the visitor is more likely to go somewhere else.
So, for example: If insulin manufacturer Lilly wants to pay extra for their blog to load faster on your computer than a patient-led site like DiabetesMine, Lilly could pay an ISP to make that happen. Many people may just abandon the site that takes longer to load.
This has the potential to create a biased online environment, in which content provided by those who have the means to pay more will be prioritized.
On the whole, Internet Service Providers have claimed they would not do this.
However, there is a history of existing ISP violations showing how many have repeatedly attempted to engage in this pay-for-priority practice and were taken to court by the FCC and consumers who filed complaints.
Those violations paved the way for the current strong and enforceable Net Neutrality protections, which were implemented in 2015 specifically in response to ISP’s repeatedly violating neutrality and the FCC needing a stronger legal framework in place.
But now, the FCC chairman wants to overturn that law. He's acting as if there has been no history of ISP violations and that there was no need for the 2015 decision. Why?
Some are skeptical of the current chairman's background, as Pai was a lawyer for Verizon before joining the federal commission. One can assume that his loyalties lie elsewhere.
Just looking at the ISP violation track record and the chairman's own biased background, it doesn't look good for maintaining the integrity of Net Neutrality.
Fast Company magazine underscores the importance of this issue by asking:
Should Internet Service Providers get to decide which apps consumers can access for free and which apps incur real data costs? Should (they) be allowed to distort the market in favor of (their) own apps by offering them for free? More fundamentally, is it not unfair for consumers to pay separate fees for using email, for using social media, for watching video, and for surfing the web?
Act Now, Diabetes Community!
If you understand and support the need to be able to access all online content equally with no interference from your ISP, please take a few minutes to call your Congress members. Tell them how the Diabetes Online Community has changed your life. Demand that they uphold the protections that are currently the law of the land, and stop FCC Chairman Ajit Pai from gutting Net Neutrality on Dec. 14.
A tool created by a nonprofit called FightfortheFuture.org makes it easy for all of us to protest. Just click on their BreakTheInternet site to find a simple interface allowing you to enter your phone number to get a script of what to say to your local politician, along with contact info. More than 250,000 calls have already been made, and our D-Community can boost that number even higher in the days before the FCC vote.
We need to amplify our voices and let Congress members (and the FCC) know that Net Neutrality is a fundamental freedom important not only to our Diabetes Community, but to all Americans who need health information and patient communities.
These communities provide key learnings about how to thrive with various health conditions, and foster powerful kinship that arises from disease solidarity. The power of an open information highway and of “me too” peer support has been proven time and again, and the damage of tampering with these resources cannot be underestimated. The online community needs to be protected, and it’s up to all of us to fight for it.
Thank you, Marina. This is certainly an important issue that we need to raise our empowered patient voices about!
UPDATE: On Dec. 14, the FCC voted to kill Net Neutrality. See this CNN Money story.