Connecting the next billion - WiMAX to provide internet access for the unconnected
Some interesting points of relevance for rural America here: Connecting the next billion - WiMAX to provide internet access for the unconnected
Fighting Continues on Multiple Fronts: FDA, DTC, Telcos, Hemochromatosis
Sorry things have been a little slow lately here on Cobbsblog. I have been working pretty hard at the day job and on my "word warrior weekends."
Let me quickly explain: I have been blogging and tweeting and Facebooking on multiple fronts for the past few weeks:
1. Petitioning the FDA to ignore the lobbying of doctors who want to end Direct-To-Consumer genetic testing (i.e. the kind of testing that enables you to find out if you have hereditary hemochromatosis even if your doctor doesn't think you do). And I mean petition. Please read and sign the petition when you have a chance. That would be much appreciated. Bear in mind that this possible FDA action affects everyone in America, not just hemochromatosis patients.
2. Raising the alarm about the efforts of large telecommunications companies (telcos) such as Time Warner Cable to ban community broadband networks. Yes, your urban cable company may be taking some of your monthly payment and using it to pay lobbyists fighting to squash local efforts to install broadband in places where the big telcos have failed to do so. Read more here.
3. Continuing to battle ignorance about hemochromatosis, as evidenced by this report on the Facebook page: "Husband recently diagnosed. Saw a gastro doctor today about a possible liver biopsy. He knew almost nothing about hemochromatosis." And yet he, the doctor, probably makes over $200,000 a year.
I should also explain that's not me with the raised arm in the painting (a free Fighting Hemochromatosis mug to the first person--friends and family excepted--who comments with the name of the original painting and artist).
More updates from the front lines as time permits...
Let me quickly explain: I have been blogging and tweeting and Facebooking on multiple fronts for the past few weeks:
1. Petitioning the FDA to ignore the lobbying of doctors who want to end Direct-To-Consumer genetic testing (i.e. the kind of testing that enables you to find out if you have hereditary hemochromatosis even if your doctor doesn't think you do). And I mean petition. Please read and sign the petition when you have a chance. That would be much appreciated. Bear in mind that this possible FDA action affects everyone in America, not just hemochromatosis patients.
2. Raising the alarm about the efforts of large telecommunications companies (telcos) such as Time Warner Cable to ban community broadband networks. Yes, your urban cable company may be taking some of your monthly payment and using it to pay lobbyists fighting to squash local efforts to install broadband in places where the big telcos have failed to do so. Read more here.
3. Continuing to battle ignorance about hemochromatosis, as evidenced by this report on the Facebook page: "Husband recently diagnosed. Saw a gastro doctor today about a possible liver biopsy. He knew almost nothing about hemochromatosis." And yet he, the doctor, probably makes over $200,000 a year.
I should also explain that's not me with the raised arm in the painting (a free Fighting Hemochromatosis mug to the first person--friends and family excepted--who comments with the name of the original painting and artist).
More updates from the front lines as time permits...
Yes, Time Warner IS Trying to Ban Community Networks
Some people found that hard to believe (some of them young people who still seem to think American corporations are all about free markets and level playing fields). So here is a dose of reality people, as reported by the terrific website that is the source of the sadly "too-true" cartoon you see here. The site is Stop the Cap:
Time Warner Cable’s custom-written bill banning community-owned broadband networks in North Carolina this afternoon received a favorable vote in the Public Utilities Committee... Read the full report here.Yes, you read that correctly. Time Warner Cable is trying to get a law passed to outlaw community-owned networks. This is the same company that told me, in writing, to take a hike when I ordered commercial-grade cable service from them. (Okay, they did not use those exact words, they just told me it would cost more than $100,000 to connect me, even though I am less than 5 miles from their nearest connection point and there are dozens of other willing customers between that point and me.)
So all of you out there enjoying Time Warner Cable Internet and Verizon FiOS just remember, your broadband provider is actively seeking to stop rural communities from helping themselves while simultaneously denying those communities the kind of broadband you enjoy.
And think of my neighbors, paying 5X what you pay for broadband and getting 1/20 of the service you get. Now think about this: If those companies can get away with treating those communities so badly, how long will it take them to start behaving equally badly toward you?
API Pop-Up Box Bug in Twitter Seems to be Fixed
Since I had complained so much, I felt it was only fair to let people know of this incremental improvement in Twitter. Not that all is well at Twitter, according to this Fortune magazine cover story. But one good sign might be this quote from Jack Dorsey, cofounder and former CEO of Twitter, is now back on baord as Executive Chairman of product (development, improvement, completion, or whatever):
"We're just humans running these companies."
The Institute for Local Self-Reliance: An idea whose time has come?
Anyone who has spent time trying to get companies to bring broadband to their rural community will know that it can be a lot like banging your head against a wall. The telcos are not interested. Legislators are either powerless or in the pocket of the telcos.
And we are now hearing rumors that a lot of the rural broadband stimulus money went to "mapping studies" and "feasability projects" carried out by organizations fronting for telcos. Expect a series of reports in the next few years that declare "broadband access solved for most rural Americans" even as the decline of rural narrowband ghettos proceeds apace.
Yes, it's grim out there if you have no broadband in your community and for many people the answer is clearly not going to be the telcos or the stimulus program or even the recently announced wireless initiative. The answer may well lie in our own hands: local initiatives.
One organization that is helping folks head down that road is the Institute for Local Self-Reliance. They have a project called Community Broadband Networks. This project offers a lot of hope, some of it in the form of an impressive map of local broadband operations around the country.
That tells you these projects must be doing something right...and fiber to the home, in a small town? What better lifestyle could there be?
And we are now hearing rumors that a lot of the rural broadband stimulus money went to "mapping studies" and "feasability projects" carried out by organizations fronting for telcos. Expect a series of reports in the next few years that declare "broadband access solved for most rural Americans" even as the decline of rural narrowband ghettos proceeds apace.
Yes, it's grim out there if you have no broadband in your community and for many people the answer is clearly not going to be the telcos or the stimulus program or even the recently announced wireless initiative. The answer may well lie in our own hands: local initiatives.
This is the first map to comprehensively show the broadband networks that are structurally designed to meet community needs first. Most of the networks are owned by local governments, but nonprofit networks will also be incorporated over time.Take a look. It is encouraging. I looked at one pin on the map as an example, a small town in Pennsylvania called Kurtztown that installed Fiber to the Home (FTTH) in 2002. This is a good example because it shows what happens when you go down this road: The telcos try to stop you!
That tells you these projects must be doing something right...and fiber to the home, in a small town? What better lifestyle could there be?
Spring-ing Forward Misses DST point: Mythic origins of Deus Tea overlooked
About this time every year there is a lot of chatter about Daylight Saving Time, clocks, farmers, planting, sunlight, safety, business impact, the environment, and so on. You read these words in blogs and you hear them all over the cable news networks where talking heads explain the annual sixty minute shift in time.
All of which obscures the history behind this practice and its origins in ancient myth and legend. No longer do we tell our children about the epic struggle between the Sun god Ra, the Sea god Poseidon, and Zunga the flying lizard. I mean, how many children today know the story of how Zunga and Ra put aside their own feud to conspire against Poseidon, tricking him into arriving one horus [hour] late to their ritual Sun-day duel?
[caption id="attachment_1218" align="alignright" width="200" caption="Old text-book illustration showing Sumerian stone carving believed to depict Zunga the Flying Lizard"]
[/caption]
With all the education cutbacks and test-focused learning in America today it is perhaps no surprise that most of our kids have never even heard of the pageant of Deus Tea [literally: Deus Starticus Tardicum] let alone participated in one of these colorful celebrations.
Even that most American of Spring traditions, the Vernal Equinox [literally The Equinox of Vern] is mentioned merely in passing these days. How many children could, if asked, recount its origins on the shores of the Great Salt Lake--back before Utah was even called the Utah Territory--when the young pioneer Vern Smith used 24 egg-timers and 100 candles to accurately determine the equal length of both day and night?
Well, here at Cobbsblog we plan to do something about this parlous ignorance. At some point between now and the first of April [literally "the first pril" or prilostoria, from the Greek for short sword or possibly story] we will be posting the original DST origin myth in full, in the hopes of keeping this important piece of of shared heritage alive.
In the meantime, we would all do well to take a moment and ask ourselves the question immortalized in the ancient ballad of the Chicago Transit Authority: Does anybody really know what time it is?
All of which obscures the history behind this practice and its origins in ancient myth and legend. No longer do we tell our children about the epic struggle between the Sun god Ra, the Sea god Poseidon, and Zunga the flying lizard. I mean, how many children today know the story of how Zunga and Ra put aside their own feud to conspire against Poseidon, tricking him into arriving one horus [hour] late to their ritual Sun-day duel?
[caption id="attachment_1218" align="alignright" width="200" caption="Old text-book illustration showing Sumerian stone carving believed to depict Zunga the Flying Lizard"]
[/caption]With all the education cutbacks and test-focused learning in America today it is perhaps no surprise that most of our kids have never even heard of the pageant of Deus Tea [literally: Deus Starticus Tardicum] let alone participated in one of these colorful celebrations.
Even that most American of Spring traditions, the Vernal Equinox [literally The Equinox of Vern] is mentioned merely in passing these days. How many children could, if asked, recount its origins on the shores of the Great Salt Lake--back before Utah was even called the Utah Territory--when the young pioneer Vern Smith used 24 egg-timers and 100 candles to accurately determine the equal length of both day and night?
Well, here at Cobbsblog we plan to do something about this parlous ignorance. At some point between now and the first of April [literally "the first pril" or prilostoria, from the Greek for short sword or possibly story] we will be posting the original DST origin myth in full, in the hopes of keeping this important piece of of shared heritage alive.
In the meantime, we would all do well to take a moment and ask ourselves the question immortalized in the ancient ballad of the Chicago Transit Authority: Does anybody really know what time it is?
AMA to Control Your DNA? Asks FDA to ban direct-to-consumer genetic tests
It's no secret: I dig DNA. I'm into my genes. Deep ancestry excites me. Genetic defects perplex me. And I've spent a fair amount of time looking after someone who is suffering the crippling effects of Celtic Curse, a potentially deadly and surprisingly common genetic condition that went undiagnosed for too long (owing to a combination of medical ignorance and avaricious genetic patenting).
Lately I've been blogging and tweeting about 23andMe, a company to whom you can send your own DNA for analysis. I bought myself a ticket to 23andMe for Christmas and I've been delighted with the service they provide. I'm buying 23andMe for my wife for her birthday in April, but I'm buying it right now, before it becomes illegal.
Get Your Genome Mapped While You Still Can?
That's right, some very powerful people don't want you to have this kind of direct-to-consumer access to your DNA and they're looking to shut it down. Here's how one science writer put it:
That's how Dr. Daniel MacArthur characterized the recent American Medical Association statement on the subject of direct-to-consumer genetic tests. Just to be clear, MacArthur, who blogs for Wired Science, has a PhD in Human Genetics. He's not exactly a novice in this field. And he's not not making this up. (Here's the Wired article.)
[Update: You can submit your own comments on this issue online, direct to the FDA, at this site up until midnight February 28.]
The AMA is the largest lobbying group for medical doctors in America and it is openly urging the Food and Drug Administration to recommend that "genetic testing, except under the most limited circumstances, should be carried out under the personal supervision of a qualified health care professional."
In other words, if your doctor doesn't think you need this gene or that gene tested, it does not get tested. And if your genes get tested, the results go to the doctor, not you. Whether you get the results is up to them, not you. After all, you're just a consumer. You might take things the wrong way. According to the AMA: "the involvement of a physician is essential in achieving benefit from test results."
Gatekeeping Has Already Begun
So it is quite possible that a genetic test we regard as critical for a family member may not strike a doctor the same way. The stories I read on the Hemochromatosis Facebook page lead me to think this is not implausible. After living with this knowledge for several years it is quite clear that my wife did not hit a run of bad luck. Her case is typical. And while we remain deeply grateful to the doctor who finally figured out why she was so darn sick, our feelings towards all the others who failed her do not incline us to think there is any benefit in appointing medical doctors as the gatekeepers of human DNA. I have already described how my cardiologist sent me a form letter to let me know I had a thoracic aortic aneurysm, which I didn't actually have. Sensitive? Professional? I think not.
Free to Be Me
If I look at my face in the mirror and see it is covered with spots, that is actionable anatomical data. As an adult I am considered by my peers to be capable of assessing the relative probability that these spots are acne, measles, an allergic reaction, or something unknown. Our society says I am free to access this data (the shape, size, color, number, and distribution of the spots).
I am also free to put this data together with other medical data that I own (such as known allergies and the medical histories of myself and family members). And I am free to act on this data, either by self-medicating based on my own assessment of the spots, or by seeking further advice, perhaps from a family member, or a pharmacist, a nurse, or even a doctor.
To me, my genes are no different from my anatomy. In a very real sense they are my anatomy. I should be trusted with access to them.
UPDATE March 27: We have started a petition to express our position to the FDA. Please sign if you can. Thanks!
Lately I've been blogging and tweeting about 23andMe, a company to whom you can send your own DNA for analysis. I bought myself a ticket to 23andMe for Christmas and I've been delighted with the service they provide. I'm buying 23andMe for my wife for her birthday in April, but I'm buying it right now, before it becomes illegal.
Get Your Genome Mapped While You Still Can?
That's right, some very powerful people don't want you to have this kind of direct-to-consumer access to your DNA and they're looking to shut it down. Here's how one science writer put it:
the medical establishment is outraged by the idea of people having access to their own genetic information without the supervision of its members, and they want the FDA to stop it.
That's how Dr. Daniel MacArthur characterized the recent American Medical Association statement on the subject of direct-to-consumer genetic tests. Just to be clear, MacArthur, who blogs for Wired Science, has a PhD in Human Genetics. He's not exactly a novice in this field. And he's not not making this up. (Here's the Wired article.)
[Update: You can submit your own comments on this issue online, direct to the FDA, at this site up until midnight February 28.]
The AMA is the largest lobbying group for medical doctors in America and it is openly urging the Food and Drug Administration to recommend that "genetic testing, except under the most limited circumstances, should be carried out under the personal supervision of a qualified health care professional."
In other words, if your doctor doesn't think you need this gene or that gene tested, it does not get tested. And if your genes get tested, the results go to the doctor, not you. Whether you get the results is up to them, not you. After all, you're just a consumer. You might take things the wrong way. According to the AMA: "the involvement of a physician is essential in achieving benefit from test results."
Gatekeeping Has Already Begun
If the FDA decides you have to get a prescription to get your genes mapped, it would not be without precedent. New York State has already tried it, seeking to require residents to obtain their doctor's permission to get their DNA analyzed. I happen to know this because I live in New York and it was just before Christmas when 23andMe sent a little bottle to my village in upstate New York for me to spit into. I would then send them this sample of my saliva so they could perform a DNA analysis.
I was all set to spit when I noticed, on the 23andMe website, something about not spitting in New York. Seriously! I was warned that I could not use the kit to collect a DNA sample in New York. Fortunately, I was just a few days away from a trip to Pennsylvania. So I waited, took the DNA collection kit with me, spat into it in Pennsylvania, then mailed it to 23andMe from Philadelphia. At the time I thought it was bizarre, but I was not too worried. Then I read about the FDA hearings and I started to get very worried about doctors getting between me and my genes.
Why worry? For a start, I can give you a very real example of how this type of medical interference in access to genetic data could lead to needless pain and suffering. Because my wife has hereditary hemochromatosis our daughter is at risk for hemochromatosis, and so are any grandchildren, and so on. We want her to get tested. But what if she requires permission from her doctor and her doctor says no?
The current level of knowledge about hemochromatosis within the medical community as a whole is woefully inadequate. (This is not just a personal opinion. Studies have shown that someone with hemochromatosis has to see, on average, more than 10 doctors before they find one that makes the right diagnosis. And this is NOT some rare condition. Genetic hemochromatosis is the most common genetic killer in America!)
So it is quite possible that a genetic test we regard as critical for a family member may not strike a doctor the same way. The stories I read on the Hemochromatosis Facebook page lead me to think this is not implausible. After living with this knowledge for several years it is quite clear that my wife did not hit a run of bad luck. Her case is typical. And while we remain deeply grateful to the doctor who finally figured out why she was so darn sick, our feelings towards all the others who failed her do not incline us to think there is any benefit in appointing medical doctors as the gatekeepers of human DNA. I have already described how my cardiologist sent me a form letter to let me know I had a thoracic aortic aneurysm, which I didn't actually have. Sensitive? Professional? I think not.
Free to Be Me
If I look at my face in the mirror and see it is covered with spots, that is actionable anatomical data. As an adult I am considered by my peers to be capable of assessing the relative probability that these spots are acne, measles, an allergic reaction, or something unknown. Our society says I am free to access this data (the shape, size, color, number, and distribution of the spots).
I am also free to put this data together with other medical data that I own (such as known allergies and the medical histories of myself and family members). And I am free to act on this data, either by self-medicating based on my own assessment of the spots, or by seeking further advice, perhaps from a family member, or a pharmacist, a nurse, or even a doctor.
To me, my genes are no different from my anatomy. In a very real sense they are my anatomy. I should be trusted with access to them.
UPDATE March 27: We have started a petition to express our position to the FDA. Please sign if you can. Thanks!
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