in New York, Maryland and North Carolina. I'll go with it.
It's great to see that lobbying efforts in the community are paying off--government officials seem to be grasping the magnitude of the potential political impact of an effectively unified celiac voting block (sounds scary, doesn't it?) But if you think about it, celiacs are people who, almost by definition, are forced to be activists. Even those of us without any prior advocacy experience learn quickly that the most effective means of safeguarding our health is to speak up and educate the larger community.
There are any number of ways to celebrate Celiac Disease Awareness Month. You can: take a cooking class; attend a fundraiser; participate in a race to raise awareness; go out to eat at a new restaurant with a friend who is NOT a celiac (thus, educating both the restaurant and your friend); get tested for common vitamin and mineral deficiencies...the list goes on and on. Whatever you do--get out there and start talking. Its the best way to honor the spirit of the month and raise awareness!
Showing posts with label Impact. Show all posts
Showing posts with label Impact. Show all posts
Monday, May 3, 2010
Monday, November 2, 2009
Voting Day
A coworker recently expressed his opinion that celiac is a psychosomatic illness. While he did not say I was crazy, he did say that he thought it was all in my head. This guy is (otherwise) intelligent, has a graduate degree in-what amounts to-logical thinking and somehow believes that a verified autoimmune disease actually does not exist. Because he cannot imagine its existence. It is outside the realm of his experience and ability to empathize. Essentially, he feels that if I could just stop thinking that I have a deadly reaction to gluten, my life would be a whole lot easier.
Now, this guy is a nut. And I laughed when I heard about his insane ramblings. But it stuck with me. And it's got me thinking. What if other people felt this way? What if a lot of people decided that celiac is a choice--and a bad one? What if it became a religious issue? (The Christian Bible does talk about wheat an awful lot; it is not impossible that someone could read it literally and decide that a life without wheat was not condoned by God.) What if people got together and decided that, because celiac was not something they experienced, because the Bible suggests separating the wheat from the chaf, because food issues are an inconvenience, that celiacs could not eliminate gluten from their diet?
Now you think I'm crazy. But bear with me. Tomorrow marks a hugely important day in the life of Americans. It is voting day. A lot of you out there may be thinking that, since it isn't a presidential election, your vote doesn't matter. You could not be more wrong. In almost every state, important decisions are being made about who will be making decisions on your behalf and what you and your friends will be allowed -- or not allowed-- to do. In Maine, a vote is being held on whether your gay friends (and whether you know it or not, you probably have some) should be allowed to marry. In Virginia, there are men up for election who condone bigotry, who have publicly decried a woman's role in working society. If these things outrage you, you should go to the polls. If they do not outrage you, then I would challenge you to put yourself in the shoes of those you think are more directly effected. Imagine you are a gay person in love or a woman who is just trying to do the right thing for her family.
The verse by Pastor Martin Niemoller is relevant tomorrow. We need to stand up for the rights of others, lest there be no one left standing to stand up for us.
Now, this guy is a nut. And I laughed when I heard about his insane ramblings. But it stuck with me. And it's got me thinking. What if other people felt this way? What if a lot of people decided that celiac is a choice--and a bad one? What if it became a religious issue? (The Christian Bible does talk about wheat an awful lot; it is not impossible that someone could read it literally and decide that a life without wheat was not condoned by God.) What if people got together and decided that, because celiac was not something they experienced, because the Bible suggests separating the wheat from the chaf, because food issues are an inconvenience, that celiacs could not eliminate gluten from their diet?
Now you think I'm crazy. But bear with me. Tomorrow marks a hugely important day in the life of Americans. It is voting day. A lot of you out there may be thinking that, since it isn't a presidential election, your vote doesn't matter. You could not be more wrong. In almost every state, important decisions are being made about who will be making decisions on your behalf and what you and your friends will be allowed -- or not allowed-- to do. In Maine, a vote is being held on whether your gay friends (and whether you know it or not, you probably have some) should be allowed to marry. In Virginia, there are men up for election who condone bigotry, who have publicly decried a woman's role in working society. If these things outrage you, you should go to the polls. If they do not outrage you, then I would challenge you to put yourself in the shoes of those you think are more directly effected. Imagine you are a gay person in love or a woman who is just trying to do the right thing for her family.
The verse by Pastor Martin Niemoller is relevant tomorrow. We need to stand up for the rights of others, lest there be no one left standing to stand up for us.
Monday, October 12, 2009
The Littlest Lobbyist
Kyle Graddy has begun an early and hopefully effective career as a lobbyist. The nine-year old boy, with severe peanut allergies, described his recent Washington, DC experience for CNN. His eloquently simple description of the issues is maybe the most effective I have seen to date.
Tuesday, October 6, 2009
The Economic Benefits of a Celiac Diagnosis
I got a medical bill yesterday. You know those notices you get from your insurance company that say how much the doctor's office charged for a service, how much you paid, and how much they are willing to pay? Before I was diagnosed with celiac, I used to get at least one a week. I was going to the doctor so often, I was convinced that they had a little note on the chart saying: "This one's crazy--disregard all complaints." I had gotten to that crisis point that apparently happens frequently for celiacs--my system was essentially shutting down. In many ways, my life and health have improved exponentially following the diagnosis, yet I have health issues that remain because it took so long to find out what was wrong. So I continue to get those medical bills. Luckily, as I've said here before, I have pretty great health insurance.
Just based on my own experiences, I could have told you that undiagnosed celiac causes an enormous economic burden both for individuals and for the health insurance industry. However, you do not have to take my word for it; the Journal of Insurance Medicine published a study back in March discussing this very phenomenon. Dr. Peter Green of the Celiac Disease Center at Columbia University joined forces with CIGNA HealthCare and, using anonymous data collected from 1999 through 2003, compared more than 10 million managed care patients in the U.S. They divided patients into four sub-groups: (1) newly diagnosed with celiac disease, (2) one symptom of celiac disease but no official diagnosis, (3) two symptoms of celiac disease but no official diagnosis, and (4) three celiac disease symptoms but no official diagnosis. After analyzing the medical resources utilized by each of the four groups, including amount and cost, they found that, after the first few months following diagnosis, the first group had consistently lower resource use and overall costs than the other groups.
Clearly, the study is not perfect. But how could this not make sense? Before diagnosis, those suffering with untreated celiac are sick. The list of symptoms is ridiculous. You have migraines, stomach problems (to put it mildly), extreme fatigue, skin issues, mental health problems. It goes on and on. Of course you are going to see the doctor, if you can. And the longer you go with untreated celiac, the sicker you become. It is an autoimmune disease; eventually it will wear your body out. It has been associated with other autoimmune diseases, cancer, osteoperosis, chronic fatigue. When you get to the point of other illness involvement, the medical costs are not going to go down. And those costs are pervasive.
The conclusion of this study was that early diagnosis would be economically beneficial to the health insurance industry. Yes! An important point! The blood test that ultimately was responsible for my diagnosis cost them about $100 versus the many, many thousands that they had put out previously just looking for what was wrong. But I would take it a step further. Early diagnosis is economically beneficial to just about everyone. Besides the pure health costs, imagine the work time that would not be lost for pointless medical tests, unnecessary hospital stays, care for family members who cannot be cared for by the patient. When you get right down to it, considering that an estimated 1 in 133 people have celiac but only a tiny percentage of those are currently diagnosed, the costs of performing the test on everyone are probably lower than the costs associated with undiagnosed celiac. (That might be an exaggeration. I clearly have not done those calculations.)
While health care is on everyone's minds, its a great time to suggest that your loved ones get tested. A simple blood test might save more than your friend's life... it might just save everyone a ton of cash.
Just based on my own experiences, I could have told you that undiagnosed celiac causes an enormous economic burden both for individuals and for the health insurance industry. However, you do not have to take my word for it; the Journal of Insurance Medicine published a study back in March discussing this very phenomenon. Dr. Peter Green of the Celiac Disease Center at Columbia University joined forces with CIGNA HealthCare and, using anonymous data collected from 1999 through 2003, compared more than 10 million managed care patients in the U.S. They divided patients into four sub-groups: (1) newly diagnosed with celiac disease, (2) one symptom of celiac disease but no official diagnosis, (3) two symptoms of celiac disease but no official diagnosis, and (4) three celiac disease symptoms but no official diagnosis. After analyzing the medical resources utilized by each of the four groups, including amount and cost, they found that, after the first few months following diagnosis, the first group had consistently lower resource use and overall costs than the other groups.
Clearly, the study is not perfect. But how could this not make sense? Before diagnosis, those suffering with untreated celiac are sick. The list of symptoms is ridiculous. You have migraines, stomach problems (to put it mildly), extreme fatigue, skin issues, mental health problems. It goes on and on. Of course you are going to see the doctor, if you can. And the longer you go with untreated celiac, the sicker you become. It is an autoimmune disease; eventually it will wear your body out. It has been associated with other autoimmune diseases, cancer, osteoperosis, chronic fatigue. When you get to the point of other illness involvement, the medical costs are not going to go down. And those costs are pervasive.
The conclusion of this study was that early diagnosis would be economically beneficial to the health insurance industry. Yes! An important point! The blood test that ultimately was responsible for my diagnosis cost them about $100 versus the many, many thousands that they had put out previously just looking for what was wrong. But I would take it a step further. Early diagnosis is economically beneficial to just about everyone. Besides the pure health costs, imagine the work time that would not be lost for pointless medical tests, unnecessary hospital stays, care for family members who cannot be cared for by the patient. When you get right down to it, considering that an estimated 1 in 133 people have celiac but only a tiny percentage of those are currently diagnosed, the costs of performing the test on everyone are probably lower than the costs associated with undiagnosed celiac. (That might be an exaggeration. I clearly have not done those calculations.)
While health care is on everyone's minds, its a great time to suggest that your loved ones get tested. A simple blood test might save more than your friend's life... it might just save everyone a ton of cash.
Thursday, October 1, 2009
Online Social Collaboration Community
There's a new resource in town. Gling is a brand new social collaboration community. It is totally free and the content is member-driven. It combines several social networking forums; members can use the site as a base from which to blog, tweet and post comments. It is primarily focused on recipes, gluten-free friendly locations and foods.
So that's the short and dirty. The real story is that this resource has the potential to be a truly useful, supportive community for those who have celiac or cannot eat gluten. It is a distinctly user-friendly site. It's easy on the eyes, easy to navigate, and easy to contribute. Community members are very welcoming. Within a day of joining the site, I had four previously unknown people "friend" me, which gives me access to their resources. As noted, it is new. Which means that certain of the resources have not had time to get to maximum capacity of usefulness. The locations section is virtually empty for DC. We need members to add gluten-free hot spots. Still, there are great recipes and everyone is there for a single purpose: to spread the word about gluten-free living.
Your mission if you choose to accept it: Sign up for gling and see if we can get the DC location filled with at least twenty spots in the next two weeks. Go!
So that's the short and dirty. The real story is that this resource has the potential to be a truly useful, supportive community for those who have celiac or cannot eat gluten. It is a distinctly user-friendly site. It's easy on the eyes, easy to navigate, and easy to contribute. Community members are very welcoming. Within a day of joining the site, I had four previously unknown people "friend" me, which gives me access to their resources. As noted, it is new. Which means that certain of the resources have not had time to get to maximum capacity of usefulness. The locations section is virtually empty for DC. We need members to add gluten-free hot spots. Still, there are great recipes and everyone is there for a single purpose: to spread the word about gluten-free living.
Your mission if you choose to accept it: Sign up for gling and see if we can get the DC location filled with at least twenty spots in the next two weeks. Go!
Monday, September 28, 2009
National Family Day --
Today is National Family Day. I was made aware of this "holiday" by the security guard at my parking garage when he wished me a "happy family day." I replied-- "thanks!"-- without missing a beat, even though I had absolutely no idea what he was talking about. A little googling uncovered a rather depressing fact; National Family Day is a day designated to eating dinner with your family. As opposed to every other day?
Apparently, the day is about getting your kids not to do drugs. If you eat with them, they are less likely to do drugs, the theory being that you are more likely to talk about it if you are forced together at a table for a period of time in the form of the family dinner. (The imagery of this can be funny...imagine a family, awkwardly sitting around the table, and the dad thinking, "Well, we've got nothing else to talk about. Might as well broach that drug thing.")
It occurs to me, though, that the reason eating together as a family leads to lower rates of drug use might be more fundamental. I think food can be a really unifying--and divisive--thing. Eating together, eating the same thing, brings you closer to one another. When you initially go out on a date, how often is it over dinner? And meeting up with friends, don't you usually grab a bite to eat? Similarly, eating separately can make you feel isolated and lonely. If you're at all like me, when you cook for yourself, you eat strange little meals that you would never serve your friends. You eat quickly, not really paying attention, just trying to get it done so you can move on to the next thing.
Unfortunately, even in families that do eat together, those who cannot eat gluten often eat alone. I have heard parents talk about their child being diagnosed with celiac and they, very conscientiously, ensure that the child eats gluten-free, but do not consider changing their own diet. Or when a spouse is diagnosed, the other offers sympathy regarding the difficulties of finding delicious, healthy gluten-free food while housing a sandwich. Or when a friend who shares a house has celiac, the housemates never clean the kitchen after eating bread, pizza, spilling beer. I was very lucky that, after my diagnosis, my husband helped me eliminate every trace of gluten from our home. He's been incredibly supportive and is often more cautious than I am.
I think, in consideration of National Family Day, if you know a celiac or someone who cannot eat gluten, you should join them for a meal. Experience with them how difficult it can be to eat gluten-free. Or, alternatively, show them that it does not have to be a trial. If you have a child who cannot eat gluten, make them something delicious and eat it with them. Just imagine how much closer they'll listen if they know that you care enough to make them feel included. Maybe they won't do drugs! Happy family day to you.
Apparently, the day is about getting your kids not to do drugs. If you eat with them, they are less likely to do drugs, the theory being that you are more likely to talk about it if you are forced together at a table for a period of time in the form of the family dinner. (The imagery of this can be funny...imagine a family, awkwardly sitting around the table, and the dad thinking, "Well, we've got nothing else to talk about. Might as well broach that drug thing.")
It occurs to me, though, that the reason eating together as a family leads to lower rates of drug use might be more fundamental. I think food can be a really unifying--and divisive--thing. Eating together, eating the same thing, brings you closer to one another. When you initially go out on a date, how often is it over dinner? And meeting up with friends, don't you usually grab a bite to eat? Similarly, eating separately can make you feel isolated and lonely. If you're at all like me, when you cook for yourself, you eat strange little meals that you would never serve your friends. You eat quickly, not really paying attention, just trying to get it done so you can move on to the next thing.
Unfortunately, even in families that do eat together, those who cannot eat gluten often eat alone. I have heard parents talk about their child being diagnosed with celiac and they, very conscientiously, ensure that the child eats gluten-free, but do not consider changing their own diet. Or when a spouse is diagnosed, the other offers sympathy regarding the difficulties of finding delicious, healthy gluten-free food while housing a sandwich. Or when a friend who shares a house has celiac, the housemates never clean the kitchen after eating bread, pizza, spilling beer. I was very lucky that, after my diagnosis, my husband helped me eliminate every trace of gluten from our home. He's been incredibly supportive and is often more cautious than I am.
I think, in consideration of National Family Day, if you know a celiac or someone who cannot eat gluten, you should join them for a meal. Experience with them how difficult it can be to eat gluten-free. Or, alternatively, show them that it does not have to be a trial. If you have a child who cannot eat gluten, make them something delicious and eat it with them. Just imagine how much closer they'll listen if they know that you care enough to make them feel included. Maybe they won't do drugs! Happy family day to you.
Friday, September 18, 2009
Loud Voices
History is filled with examples of vocal minorities effecting change, so I don't know why it continues to surprise me, but this research blew my mind: "Market research organization Packaged Facts clearly sees the trend toward gluten-free formulations as more than a fad, estimating that sales of gluten-free products will reach $2.6bn by 2012. In a recent report, it said that the gluten-free market has grown at an average annual rate of 28 percent since 2004, when it was valued at $580m, to reach $1.56bn last year." The market has grown twenty-eight percent in five years!
Consider, if you will, the concurrent research indicating that only around 50,000 people in the US have yet been diagnosed, out of an estimated 2 million. Put those together and you've got a very loud minority of the population insisting that our health concerns be addressed through the market. You can see it on store shelves--Chex cereal was reformulated to be gluten-free. And we're only increasing in number. Information like this makes me optimistic that, someday soon, healthy, delicious, gluten-free fare will be standard on every menu and easy to buy.
Consider, if you will, the concurrent research indicating that only around 50,000 people in the US have yet been diagnosed, out of an estimated 2 million. Put those together and you've got a very loud minority of the population insisting that our health concerns be addressed through the market. You can see it on store shelves--Chex cereal was reformulated to be gluten-free. And we're only increasing in number. Information like this makes me optimistic that, someday soon, healthy, delicious, gluten-free fare will be standard on every menu and easy to buy.
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