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Celiac.com 10/15/2020 - A team of researchers recently conducted an analysis of US healthcare resource utilization (HRU) and costs between celiac patients and a group of matched control subjects. The research team included Katherine Cappell, PhD; Aliki Taylor MPH, PhD; Barbara H. Johnson MBA; Steve Gelwicks, MS; Song Wang, Song PhD; Michele Gerber, MPH, MD; Danial A. Leffler, Daniel MD. They are variously affiliated with the IBM Watson Health, Cambridge, Massachusetts, USA; Takeda Pharmaceuticals International, London, United Kingdom; Takeda Pharmaceuticals International Co, Cambridge, Massachusetts, USA; and the Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA. For their study, the team used the MarketScam databases to isolate celiac patients with an endoscopic biopsy and two or more medical encounters with a celiac disease diagnosis between January 1, 2010, and October 1, 2015. As an index date, the team used the date of the first health claim with a celiac diagnosis on or after the endoscopic biopsy. They matched celiac disease cases 1:1 to with non-celiac patients on demographic characteristics and Deyo-Charlson Comorbidity Index score. The team compared clinical characteristics, all-cause, and celiac-related HRU, and price adjusted costs, between celiac patients and control subject during the one year before and two years after the index date, and matched 11,008 study subjects to 11,008 controls. Study subjects averaged about 40 years old, and just over 70% were women. The follow-up data showed that celiac patients had higher rates of all-cause and celiac-related HRU including inpatient admissions, emergency department visits, gastroenterologist visits, dietician visits, endoscopic biopsies, and gastroenterology imaging. Incremental all-cause costs were nearly $8,000 first year, and $4,000 second year, while celiac-related costs were nearly $3,000 and more than $900 for the same periods. This analysis shows that people with celiac disease face higher all-cause and celiac-related HRU costs, compared with matched non-celiac patients, and helps to quantify the extra financial challenges faced by people with celiac disease. Have you or a loved one faced higher health care costs due to celiac disease? Please share your story below. Read more at the American Journal of Gastroenterology
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Celiac.com 09/03/2020 - Reading Ron Hogan’s article on ‘A Changing Paradigm’ touched my heart and fueled once again, my frustration with the state of our Health Care System. It’s not that the doctors in Ron’s article didn’t think of celiac disease that makes it so distressing; it’s the arrogant disdain for what might have been a rational, logical, scientific cause of unnecessary suffering, the rigidity about turf that is frustrating. Where is the Community when needed? Learning to care for each other as a Community where the welfare of each individual is a priority for everyone is one of the hallmarks of an advanced society. One can argue whether our current society is an advanced society. We certainly have the hallmarks of being ‘advanced’. We spend more in the US on health care than any other country in the world. And yet, according to Barbara Starfield, MD, PhD., of Johns Hopkins, in an article entitled “Is US Health Care Really The Best in The World?” published in the Journal of the American Medical Association, “of 13 countries in a recent comparison, the US ranks an average of 12th (second from the bottom) for 16 available health indicators.” Countries in order of their average ranking on the health indicators (with the first being the best) are: Japan, Sweden, Canada, France, Australia, Spain , Finland, The Netherlands, The United Kingdom, Denmark, Belgium, The United States, and Germany. US estimates of the combined effect of errors and iatrogenic damage not associated with recognizable error include: 12,000 deaths/year from unnecessary surgery 7,000 deaths/year from medication errors in hospitals 20,000 deaths/year from other errors in hospitals 80,000 deaths/year from nosocomial (in hospital) infections 106,000 deaths/year from non-error adverse effects of medications “These total to 225,000 deaths per year from iatrogenic causes. Three caveats should be noted. First most of the data are derived from studies on hospitalized patients. Second, these estimates are for deaths only and do not include adverse effects that are associated with disability or discomfort. Third, the estimates for deaths due to error are lower than in the World Health Report.” (1) And Dr. Joe Mercola, summarized this data with the caption “Doctors are the Third Leading Cause of Death in This Country Behind Heart Disease and Cancer”. (2) So I believe most would agree with me that we could have long and possibly heated discussions about how ‘Advanced’ a society we have if we use Health Care results as a marker of being ‘Advanced’. But one group that demonstrates being an “Advanced Society” is active, elder widows. These gals call each other regularly, check in and make sure that all are OK. Movie outings, rides to the Dr.’s office and church socials. They recognize the value of caring for each other and allowing themselves to be cared for. It’s community. Life expectancies increase, and perhaps more importantly, quality of life increases. We all know the more activity one has, the more the elderly “get out”, the better they feel about themselves and those around them. So here’s a Case History for you. “The Gals” came to pick up Nellie, an 80-year old widow and member of the Tuesday-night-Bingo group. They beeped the horn-she didn’t come out. They rang the doorbell-no answer. They saw that her car was in the garage so they called the police. When the police arrived and did a forced entry, they found Nellie incoherent and slurring her words (sounds like a stroke to me). An ambulance rushed her to the ER. Standard protocols were begun to minimize the damage from the apparent stoke. By the time I traveled the 6 hours to get to her and reached the hospital, I found my Mother admitted, in a hospital bed, slurring her words and not recognizing me. She was hallucinating-seeing people walking in the walls, and a burning bush. THIS DID NOT LOOK GOOD. The Dr. comes in and explains to me that there is no evidence of any brain damage. As a matter of fact there is no evidence of a stroke. MRI’s and CT’s negative for any evidence of a problem, or that she had had a stroke. As a matter of fact, he tells me that my Mother has Toxic Metabolic Encephalopathy (a good Scrabble term that means toxicity causing the brain to not function properly) and that her brain “has just gone”. We’ll have to commit her to an assisted living facility, she’ll never be the same, and we just want to make her comfortable for her remaining time. As a matter of fact, his Mother is going through the same thing and “we just have to make them comfortable”. Well obviously I was in shock, seeing my Mother in that bed, helpless and dysfunctional. Tears came into my eyes. WAIT A MINUTE. My Mother was fine two days ago when she called me. Upset and as vocal as any good Italian widow would be that her son had not called in a few days (Mea Culpa), and now you’re telling me she is doomed to a non-functional hallucinatory state for the short time she has left. And there’s no evidence of damage anywhere that would cause this? I don’t think so. Am I a Functional Medicine Practitioner or not! We checked my Mother out of the hospital, put her in a car and drove her to Chicago. Finally, I was able to run the tests on her that I’ve wanted to run for years (“Mom, I need to do a blood test on you to check you for allergies”. Oh Tom, I don’t have allergies. If I did Dr. X would have told me and checked it. He’s such a nice Dr…..”). Many of you have heard this type of story from your loved ones. After all, their “good Dr. X “is such a nice man, he would certainly have tested me if it was necessary.” You would think Marcus Welby is still with us! Well now I could run my tests. Not only was she malnourished and dehydrated, her Gliadin and Transglutaminase antibodies were elevated (hallmarks of gluten allergies initiating an auto-immune reaction). And she was positive for the HLA-DQ2 gene (genetic marker of celiac disease). My Diagnosis? Toxic Metabolic Encephalopathy secondary to Malnourishment, Dehydration and Anemia complicated by Gluten Intolerance and likely celiac disease. My Recommendation? A Modified Mediterranean Diet, 5 meals per day (eliminating gluten, dairy, sugar and caffeine) with a ‘Medical Food’ protein drink mid-morning and mid-afternoon, a few brain nutrients, 3 grams of Omega 3’s, and 5 glasses of filtered water per day. Nothing too sophisticated. Not rocket-science technology here. Just the basics to start with. My Prognosis? Let’s pray it helps. Her results? Full Cognitive Recovery in 3 weeks! Weakened from the entire ordeal (any 30 year old would be, let alone an 80 year old). Within 8 weeks she went back to her “good Dr. X” and received his “startled” OK to drive again. How many years had her gluten sensitivity been taxing her brain with no gut symptoms producing such a vulnerable state just waiting for the straw that broke the camel’s back? How many hundreds of thousands of neurons, axons, cerebellar fibers, have been destroyed by the continual onslaught of a food allergen that demanded an immune system response (inflammation and eventual tissue destruction)? How many years of borderline malnourishment? How much suffering? How many people have to die unnecessarily? How many seniors receive a doom diagnosis unnecessarily? When will we start “looking with eyes that see” and “listening with ears that hear?” When will our doctors think “gluten” as a possibility to be checked when signs and symptoms don’t add up? (3) Why do we have such a poor-performing Health Care System? No one has ever looked at this in totality. But Dr. Starfield summarizes it well when she said “The perception is that the American public ‘behaves badly’ by smoking, drinking, and perpetrating violence. The data shows otherwise…although tobacco use and alcohol use in excess are clearly harmful to health, they do not account for the relatively poor position of the United States on these health indicators...common explanations for this poor performance fail to implicate the health system” Sometimes the most “advanced overview” does not require rocket-science technology. As my mentor, Dr. George Goodheart would say ”the body is simply intricate and intricately simple” As you read the informative articles in this publication, if you suspect you or your loved ones of having a sensitivity, by spending the dollars testing them (whether insurance approves or not) you may prevent a diagnosis of “We’ll have to commit her to an assisted living facility, she’ll never be the same, and we just want to make her comfortable for her remaining time.” Starfield, Barbara, Is US Health Care Really the Best in the World, JAMA July 26,2000, Vol.284,483-485. Mercola, J. Townsend Letter For Doctors & Patients, October 2000. Lurie, Y Celiac Disease Diagnosed in Elderly, J Clin Gastroenterol Vol. 42, No. 1, Jan. 2008
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Celiac.com 09/02/2020 - In a recent blog post, the Toronto law firm, Himelfarb Proszanski LLP, noted that people with any of a number of long-term disabilities are routinely denied coverage for their conditions by medical insurance. Chronic mental and psychological disorders, which lack clear visible evidence, are the most commonly denied conditions. These include mental and psychological conditions such as depression, bipolar disorder, paranoid schizophrenia, chronic anxiety and sleep disorders. Generally speaking, the post notes, physical disabilities, like serious back and spinal problems, paralysis, or blindness, are easier to spot and see fewer denials. However, the list of physical conditions that see frequent insurance denials of coverage includes celiac disease, fibromyalgia and chronic arthritis, among others. The post notes that such conditions are often hard to diagnose, and sometimes difficult to prove in court. To qualify for long-term disability insurance benefits, the post says, people with serious depression, bipolar disorder and schizophrenia often need diagnoses from more than two physicians. People denied coverage for these hard-to-diagnose long-term disability conditions face can face an uphill legal battle. “Many insurance and legal experts say the situation is equivalent to discrimination against people who suffer from mental illness or ‘invisible’ disease or ailment,” the firm noted. Even people who have qualified, and are currently receiving benefits are subject to review and sudden denial, said the firm's post. Have you or a loved one faced an uphill insurance battle because of celiac disease or any of the conditions listed above? Be sure to share your story in the comments section below. Read more at the LATimes.com
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Celiac.com 10/11/2019 - These three things don't seem to go together, but really they do. Recently, Cigna Healthcare has been putting out ads with Queen Latifah about "talking to your doctor about everything". They want you to talk to your doctor about stress or anything bothering you. This bothers me, A LOT. There have been lots and lots of articles about how women are short changed in medicine. In the US, women are prescribed less pain medicine, have high maternal death rates, offered more antidepressants, and are less likely to be given CPR among other things. Women are not getting the healthcare they deserve. But it gets worse, the average time for people to get diagnosed with celiac disease is approximately 10 years from onset of symptoms. TEN YEARS! Because there are so many celiac symptoms and it can present in a variety of ways, I can see how this might happen. But now there are inexpensive blood tests for initial screening of celiac that are really, really good. Not 100%, but well over 90% accuracy for the blood tests alone. (This is an average of all tests combined.) Also, when I got tested in 2012, the tests were over $1,000 and took a week to get back. Now, you can get an at home screening test for $100 and back in two days. So, I'm a little upset that Cigna is asking us to tell them when something is wrong. I might be telling them and they aren't listening. An undiagnosed celiac patient might be getting dismissed with IBS or antidepressants. A first degree family member to someone with celiac might be asking for testing. Because they don't fit the "classic" profile of someone super skinny with diarrhea all the time, they can't get the tests run. It infuriates me that this is put back on us as if we aren't telling them there is a problem. Its like when someone is newly diagnosed and their TTG IGA doesn't go down quickly enough, they say that person is still eating gluten--maybe but maybe not. It is hard to completely eliminate gluten from someone's diet because of all the crappy labeling laws in the US. It takes at least a year to really figure out the diet. And then give it another year before the numbers get into the normal range. So, for me, it should take someone no less than 2 years to get their blood test numbers into the normal range. Some people do it faster and if they can, great! That's awesome! I have some health issues I need to get checked out. Specifically, I need to get checked out to determine if I have an amoxicillin allergy. I had a bad allergic reaction that sent me to the ER. I even asked when I was in the ER if he was sure it was an allergic reaction, he was certain. We believe the reaction was to amoxicillin and I need to have some allergy testing. If I am allergic, the next time I get one of the "cillin" antibiotics it could be really bad. I don't know. I am nervous because I'm afraid I'm going to get told there is nothing wrong and we don't need to do testing, just tell your doctors in the future you are allergic. Great, do I need a medic alert bracelet? I'd hate to be unconscious and they give me a "cillin" and I have an anaphylactic reaction. Or maybe I'm crazy. I don't know, but I should not be afraid of going to the doctor to find out. As patients, we have a responsibility to tell our doctors what is going on in our bodies. In turn, doctors have a responsibility to listen and speak to their patients as if they were their parent/children. I'm not saying its a perfect system. But we need to advocate for ourselves to make sure we get the care we deserve. So, that's my rant today. I needed to get that off my chest! Thanks for listening.
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Celiac.com 07/03/2019 - Ever thought about gluten-free insurance? Ads for a Canadian company called Apollo offer the first ever 100% gluten-free insurance policy. If you're thinking, "Great, it's about time someone created gluten-free insurance," then you might have missed the joke. Apollo's gluten-free insurance is not a policy for people who are gluten-free, it's a policy that contains no gluten. Get it? The ads read: Apollo offers first ever 100% gluten-free insurance policy! Apollo claims that a "complete digitization of the entire insurance purchasing process" has left the policy 100% gluten-free. “There’s no gluten on the internet,” says Apollo CEO Jeff McCann. “By taking the insurance policy from its physical form, which is full of gluten, and translating it into a cloud-based digital form, Apollo is able to guarantee that there is no way gluten could possibly contaminate the policy.” Apollo adds that the company's policy was tested in a third party lab, which confirmed that there was no gluten whatsoever contained in the final product. The ad ends with a claim that Apollo is now interested in partnering with Beyond Meat to offer a vegan insurance policy later on this year. Anyone curious or interested can contact: Jeff McCann, CEO (778) 554-9640 jeff@apollocover.com About Apollo Insurance Read more at: Canadianunderwriter.ca
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After my GI doctor told me nothing was wrong with my blood test, even though i was feeling very ill, i knew it was time for a change. This doctor had recommended me to eat products that had wheat and gave me samplers of probiotics that stated "contained wheat" on the back! The doctor i really wanted to see.... Dr. Crowe at the UCSD celiac clinic. This wonderful place seemed to be the solution to all my gastrointestinal needs. The only problem i faced, my insurance. The battle began with my authorization, who was sent by my primary doctor because i didn't trust the GI doctor to even do it right. Of course as i suspected it got denied. I then call the insurance in a sudden moment of fire, anger, and GI symptoms, demanding to know why they had denied my case. They claimed it was "Not medically necessary". Feeling undeterred i sent in an appeal to prove them wrong, sending in my abnormal blood work, but to no prevail. The next day i got a call saying that it was still ruled "Not medically necessary" because i had other doctors in my group that could handle my case. Unsatisfied with my defeat i sent in a complaint to the CA GOV, who makes sure insurance are doing their job, and opened a case file. 30 days they told me, 30 days till i could have an answer. An answer, the man on the phone said, that would possible be no. Finally feeling defeated by the money loving insurance, and more ill then i could stand i transferred to the highest recommended doctor in the group for patient with celiac. To my surprise and delight my new GI doctors, Dr. Kim not only use to work at the UCSD celiac clinic, but is in close relations with Dr. Crowe. Dr. Kim was immediately intrigued by my test results and about my cluttered family history of autoimmune diseases. My case is so puzzling and abnormal that she is going to share the case with the doctors at the clinic to make sure i get the best treatment possible. I'm still a bit sad that i couldn't go and see the doctor i wanted, but in the end Dr. Kim looks to be the doctor to solve my case. A cause that from my visits with her could be more than anyone ever expected.
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Celiac.com 09/18/2009 - Little did the parents of 17-year-old Brianna Rice realize that her February diagnosis for celiac disease would make her into a poster child for insurance reform. That's because when Brianna was first diagnosed, she was covered by health insurance. Thanks to some extra scrutiny by her insurance company, that is no longer the case.

 In the months following her diagnosis, Brianna's insurance company, American Community Mutual Insurance, took a microscope to her medical records and canceled her policy after it ruled that her parents had lied on her application last November.

 American Community not only canceled her policy, effective in May, but also denied coverage all the way back to November 1st, 2008, the day Brianna's coverage began. After Brianna was diagnosed with celiac disease in February, American Community initiated a review of her medical files and found instances of dizziness, elevated cholesterol levels, ongoing fatigue and a persistent cough. The family received a letter from American Community dated 12 May announcing their choice to rescind coverage.

 The letter stated that "coverage you applied for would not have been issued for Brianna if we had known this medical history at the time of application." 

Dale Rice claims the firm cherry-picked the instances from different doctors' visits, and that Brianna had no ongoing health issues. He noted the dizziness to was due to a brief bout with dehydration, the fatigue a result of Brianna staying up late surfing online, and the elevated cholesterol due to an inaccurate test, and said her cough was short-lived. 
The Rices insist they were honest and forthcoming on Brianna's application and say American Community is trying to back out of covering their daughter because of the February diagnosis.

American Community claims it would not have granted coverage based on Brianna's full medical record. 
The Rices have lodged a complaint with the Illinois Department of Insurance. "We are livid," said Dale Rice, who, along with his wife, is out of work. "When a private insurer gets legitimate claims and seeks to find excuses not to pay them, they are clearly demonstrating morally and ethically bankrupt behavior." Insurance companies look for "anything that they could say 'you didn't tell us about,'" says Rice. "They hope that people just lay down and die and don't fight." The Rices are not alone. The director of the Illinois Department of Insurance, Michael McRaith, notes that his department has investigated about 400 rescission-related cases industry-wide since 2005. He calls the rate at which customers have complained about American Community 'alarming,' and calls American Community Mutual's rescission numbers 'cause for concern.' 

 The family's situation shows just how quickly health insurance problems can lead to financial ruin. With their daughter's unpaid medical bills exceeding $20,000 and mounting, the Rices fear losing their home. Brianna's mother, Pat Rice says she has liquidated some of her retirement account to pay bills.

 "The next step is really bankruptcy," her husband said. This story should strike a nerve with everyone who has celiac disease, or knows someone who does. I wonder how many people with celiac disease might risk cancellation of their insurance if they lost their jobs? How many people who obtain insurance in good faith, and later find they have celiac disase, risk being with a 'pre-existing' condition label? It seems to me that a crafty insurance company could make an argument that nearly all celiac disease is 'pre-existing,' especially in older people. Let us know your thoughts by commenting below. Source: Chicago Tribune
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