Team:Danzi Kesh 8/Practices
Lorem ipsum dolor sit amet, consectetur adipiscing elit. Suspendisse varius enim in eros elementum tristique. Duis cursus, mi quis viverra ornare, eros dolor interdum nulla, ut commodo diam libero vitae erat. Aenean faucibus nibh et justo cursus id rutrum lorem.
Human Practices
background-FACTS AND STATISTICS
Celiac Disease A worldwide problem
Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. According to National Foundation for Celiac Awareness (NFCA) one out of every 133 Americans has celiac disease, equivalent to nearly 1% of the U.S. population. Unfortunately, 83% of the 3 million Americans living with celiac disease remain undiagnosed or misdiagnosed. Celiac disease is a genetic disorder, in some cases, stressful events such as pregnancy, surgery, infection, or severe emotional distress can trigger the onset of the disease. Damaged villi make it nearly impossible for the body to absorb nutrients into the bloodstream, leading to malnourishment and a host of other problems including some cancers, thyroid disease, osteoporosis, infertility and the onset of other autoimmune diseases.
Unfortunately,6-10 years is the average time a person waits to be correctly diagnosed. (Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center) 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac.
The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. ( Datamonitor Group, 2009).
Beyond the health difficulty and dealing with the illness, and the associated symptoms, an additional problem of celiac disease families is keeping up with the cost of celiac-free food.
Over a four-year period, people with undiagnosed celiac disease cost an average of $3,964 more than healthy individuals. ( Long et al, 2010)
Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015. (Packaged Facts, 2011).
Celiac and Food Businesses
The attitude of the food business such as restaurants, cafes, pubs, etc. to the celiac disease is not anchored in the law in many countries such as the State of Israel. A person who enters a restaurant may accidently eat food containing gluten in this case, sometimes, the end result could be critical. Currently there is no law that requires businesses in most countries to sell gluten-free food.
On the other hand, many food products are labeled as "MAY" contain gluten, which requires the patient to buy the same product, gluten-free. The financial implication is significant.
Education and Celiac
From 2009 through 2013, the National Foundation for Celiac Awareness (NFCA) proudly educated a variety of healthcare professionals on celiac disease via the accredited Gluten-Free Resource Education and Awareness Training (GREAT) Healthcare programs. Through healthcare professional education, NFCA sought to advance its dual mission to increase diagnosis and improve the quality of life for those on a lifelong gluten-free diet.
In 2014, NFCA shifted its focus to maintain a patient-centered approach to achieve its mission of increasing diagnoses. NFCA has vastly increased its gluten-free community through a variety of methods which have allowed the organization to expand its reach and messaging. By educating people diagnosed with celiac disease on the genetic nature of the condition, NFCA is able to reach one of the most at-risk populations - family members.
While the following healthcare professional programs are no longer a focus for the organization, NFCA continues to offer its online gluten-free training program for foodservice professionals, GREAT Kitchens. Unfortunately, in schools in Israel, there is no such awareness for food allergies, also any reference to celiac. In fact awareness has grown thanks to the alertness of doctors and public small talk, the information is passed on by word of mouth. The Israeli Association for Celiac is based entirely on volunteers and is mainly engaged in the monitoring and treatment of patients. The association has no prevention activities or public explanation to the general population.
Celiac in the Educational System
The educational is not progressing at the rate of the development of medical information. As far as we know there is no law in the field of food allergies, no obligation for school to offer non-allergy foods.
In Israel the food offered to students in the educational system is standard, and definitely contains allergy food components, the do not have any substitute. In America there is mainly reference to nuts in foods, however, no reference to gluten or milk for those who have a sensitivity.
The outcome for students who have the disease are to be different, not to use the school cafeteria, eat only at home or stand in line and attempt to use judgement from an early age.
Conclusion
- A.The awareness towards the celiac disease in Israel and the world over is increasing, that is why there is a constant increase in diagnosed patients from year to year. This data increases the target audience that will use the “Alergln” kit in the future.
- Since there is no legislation that requires food businesses in marking products containing gluten, there is no legislation requiring the sale of products for people suffering from allergies, the necessity of our kit is vital, even life-saving.
- Selling food containing allergenic in the food may embarrass students or prevent them from eating food they can eat. The kit may resolve the dilemma and avoid the embarrassment of a student who is standing hungry in the cafeteria.
- Prices of gluten-free food are very high, most food products are labeled as suspected presence of celiac allowing food manufacturers to often increase profits for food products that do not necessarily contain gluten. The "Alergln" will save quite a lot of money for celiac sufferers and their families in the future.
- There must be an ain the activity dealing with awareness of food containing allergens in order to find more patients and to prevent life-threatening situations.
Alergln as a social project
The State of Israel in 2015 is home to approximately -60 000 celiac patients and their number is growing from year to year. Celiac disease does not require being reported and therefore there is no official data, and the existing data is constantly changing. According to the evaluation of the Celiac Association in Israel there are approximately 35,000 diagnosed, of which 30% are adult patients (over age 30), 50% of children aged up to age 18 and the rest in different age groups.
In the last decade there has been a rise in awareness of celiac disease, this is the reason that the diagnosed is increasing. Knowing that this is a genetic disease makes it possible to expand in the area of the family the explanation for colic and diarrhea attacks to the family members diagnosed.
In this way the target population has grown from year to year and therefore the awareness of routine life of celiac patients. It is not easy being a celiac sufferer, the expenses are high and the social awareness has grown, however not in favor of the patients, on the contrary, the celiac sufferers community has become a cynical economic potential where food manufactures take advantage over them.
On the background data we collected through a few activities (survey, interviews, contacting the Celiac Association in Israel, Canada and the United States), we decided to focus on the following four aspects:
A. Raising awareness of celiac disease.
B. Striving for student equality rights for celiac sufferers in the school food nutrition.
C. Raising awareness of the disease in the restaurant industry.
D. Reducing the costs of gluten-free food prices.
Raising awareness of celiac disease
There is primary importance to raise awareness of the disease. Raising awareness will allow early detection of the disease and save the patient's suffering. In addition to early detection we may prevent comorbidity that characterizes the celiac disease, a fact that will save the state huge amounts of money in the continued treatment of patients.
Awareness has been done by us inside the primary school, "Meginim" in Kiryat Shmona during the month of June. During the activity, students learned about the sensitive topic of food, with focus on the celiac disease. The school principal is a celiac patient herself and spoke of her difficulty as a sick child, until the disease was diagnosed.
In the framework of the summer camps we had a "Day on the subject of celiac disease" (07.21.2015). The Scouts Summer Camp hosted the IGEM Team on a day of activities related to the topic. The students prepared gluten-free brownies, held a "Treasure Hunt" on the gluten issue, and held a conversation with a celiac patient. Surprisingly, two students admitted being celiac patients themselves, and spoke mainly about the difficulty in avoiding foods they love.
The tourist season has begun in our town of Kiryat Shmona; people from around the country come to northern Israel these days. We decided to raise awareness of celiac disease also at the mall through ongoing publicity about the disease and of course about our project. The crowd showed interest, and expressed great appreciation in what is being done. It seems that quite a few people certainly understand the difficulty of the disease both in health and economics. Through the activities we were able to convey the message about the disease and extra scientific knowledge about the global Igem competition, and in particular synthetic biology. As part of the publicity we signed up 3000 people!! A petition calling for a change in public policy towards people with celiac disease and achieving social justice for them.
Striving for student equality rights for celiac sufferers in the school food nutrition
Data: In most educational institutions (kindergartens and schools) in Israel, lunch is provided to students. The lunch meal is devised of a meat menu and vegetarian menu, but there is no reference to students who are sensitive to food. High school cafeterias and also academic institutions have no reference to people with celiac disease.
Vegetarianism is a choice however intolerances to foods such as celiac is a disease which can cost human life. Student celiac patients cannot participate in the project because it does not show any sensitivity to gluten and there is no provision of gluten-free food. There is no reference by the Ministry of Education to provide a menu for food-sensitive children. In Canada and the United States there is a severe reference to peanuts sensitivity out of concern for human life, but no reference to celiac patients who are also limited nutritionally (according to publications of Celiac Associations).
Student celiac patient actually considered unusual, especially his sense growing through the Ministry of Education advocate and educator for equal rights of the child in all enlightened countries and amended. This student must prepare food differently when everyone else eats the catering provided. He cannot buy gluten-free food in the cafeteria. It is possible to avoid embarrassing moments for the students by offering suitable alternatives at least for younger ages.
Raising awareness of the disease in the restaurant industry
Data: As of today there is no law binding restaurants to offer gluten-free items, awareness has increased in this issue, however not enough. Few restaurants offer a gluten-free menu, which prevents patients with celiac disease enjoy sitting in a restaurant and sometimes prevents them from this experience.
We want to change the status quo by increasing public awareness and create public pressure on this issue. Like the vegetarian and vegan age who are not statutory, but are slowly penetrating the consciousness of the Israeli restaurateurs.
To do this, we met all high school students in the city to talk about the gluten disease; there has been serious marketing on the Team's Facebook account and Facebook page. Also mall marketing activities helped raise awareness of the hundreds of people from all over the State of Israel coming to the mall.
Reducing the costs of gluten-free food prices
Most of the food chains that sell gluten-free products at inflated prices and without any sensitivity towards the families where there are a number of celiac patients. Here are some selected food products to illustrate the differences in prices between gluten-free products compared to basic food products with gluten.
You can see clearly that the cost of gluten-free food is significantly higher for all products checked. Tens of thousands of people with celiac disease carry the burden of disease both in the medical and economic terms. The government’s attitude to this situation must change. Government ministries are ignoring the needs of celiac patients and therefore it is necessary to change the laws.
Due to the background described above, we decided to take action and contact the Children's Rights Committee of the Parliament to change the status quo. As part of our appeal to the Israeli parliament, the Igem Team was invited to a general assembly at the Parliament. The meeting at the general assembly helped propose a bill by a MP who is a celiac sufferer, and is working to improve the attitude towards celiac sufferers by lowering gluten-free food prices. As part of this visit, we met with the Israeli Minister of Education and discussed the issue of students with celiac disease in the country and the ability to help them improve their feeling at school during meal times.
ACTIONS TO RAISE AWARENESS OF THE DISEASE AND THE LIMITATIONS OF THE LAW AMONG CELIAC PATIENTS
Activity Day at "Meginim" Primary School
On Monday, the 8/6 group Alergln invaded combustion. The activity included the subject of food allergies, particularly gluten sensitivity (celiac disease). The school principal, a celiac patient herself opened the day and explained about herself as a celiac patient, and about the society and government ignoring the needs of celiac disease patients as health disabled.
After that we moved to the classrooms with an opening game related to allergies. We gave an overview of allergies in general and in particular for gluten sensitivity. Then the children watched a presentation and learned new things from it, we held a competition between classes. The competition included relay races with challenging tasks and questions on the subject of celiac disease.
At the end of the day, the Team Alergln students posed for pictures with the students and the photo was published in the local newspaper.
Scouts Summer camp Activity
On Tuesday, 21/7/2015 the Team went to the Scouts Summer Camp. Students took fourth-grade students from around the city for a day of fun and enjoyable activities which were engaged in celiac disease (gluten sensitivity).
The activity was based on the theme that the Team is developing a product as part of the Igem competition. In the beginning our group of Team members explained to the students the subject of activity.
Presenting the topic included explaining the disease and its symptoms. As activities progressed the students played the "Treasure Hunt" with the pupils, the game included, a questionnaire on gluten and celiac disease, writing the word "Scouts" with wheat, the invention of songs containing words related to the topic and more.
After each task the students received an ingredient to prepare gluten-free brownies which were prepared at the end of the game (food in a celiac patient's diet), after they prepared the brownies, the pupils ate and enjoyed the gluten-free dish which was prepared with their own hands. The Alergln group of students finished the day with a feeling of satisfaction.
Public Opinion Survey
In order to learn better about public opinion regarding celiac disease, how much the community understands and knows the details of the illness, we held an extensive survey among local residents and high school students where we learn. As part of the survey we visited crowded places, such as malls, shopping centers, parks, markets and more.
It turns out that most of the audience knows about the disease, however, they are unaware of the difficulties it has on celiac disease sufferers.
The survey also included questions about the feasibility of our product being developed in our laboratory. The answers were diverse and varied, but one thing was clear and complete, our product will help the quality of life of celiac patients.
Public and parliamentary action to change the existing situation
In Israel, like other developed countries in the world, policy change requires thorough field work and intense parliamentary activity. Reality change will take place in an orderly fashion only after it will be anchored in Israeli law, and therefore there is a need to propose a bill.
The bill seeks to compare the rights of celiac patients to similar rights in comparison to those with health disabilities. To reach the stage of proposing the enactment of the "Celiac Law” we must take a number of preliminary steps:
Public Parliamentary activity to advance the rights of celiac patients in the Israeli parliament
At the request of Member of Parliament Dr. Yifat Biton Shasha, chairman of the Committee for Children's Rights, we organized a day of activities to promote legislation on behalf of celiac patients in the State of Israel and increase public and parliamentary awareness. With the understanding that there is a need for social justice and equality for this group of consumers, we decided beyond doing local community activity in our town, Kiryat Shmona, and social networks, there is place to begin activities that encourage the topic at large through the all channels in Parliament. During the activity in the parliament we met with Member of Parliament Sheli Yechimovich and Opposition leader Yitzhak Herzog where we exposed them to the ambitions and goals, in response they supported and gave us their blessing, showed pride in us and promised to support when the law will come up for discussion.
Then we attended a discussion by the Committee of Children’s' Rights headed by Dr. Yifat Shasha Bitton. When the discussion ended, the Team members met with Naftali Bennet the Minister of Education, MP Meirav Ben Ari and MP Erel Margalit. We described the data we collected concerning the financial difficulties, the embarrassment of children in school, failure of early detection of the disease and the cost to the government, and of course a solution we offer to celiac disease patients.
During the conversation we brought up several possible solutions to correct the current situation:
- Adding gluten-free foods in all schools across the country.
- To lower the prices of gluten-free products.
- Striving for early tests of the disease among families with celiac disease (for it is a hereditary disease), to save the patient the ongoing pain or the development of associated diseases.
During the meeting we emphasized the importance to promote the law on the topic of celiac disease and increase awareness of the disease. MP Meirav Ben-Ari spoke to us about the important issue and advised us on the legal aspects of the issue, she told us that she herself is sensitive to gluten and she intends to work actively on the development of the issue and supports us all the way, the Minister of Education was very impressed by the idea and initiative, and also promised to support and help as needed. The Education Minister promised to consider the Knesset also gluten-free as well as the education system even though it is very complex and costly.
We returned very satisfied from the activity with the exposure we gave about our project and our field of activities. We are convinced that our meeting has created a buzz among members of parliament and made them think deeply about this matter.
As public opinion on the subject will grow, even greater pressure on MPs will increase to create a real change.
Participation in the Knesset general assembly discussion
The topic of discussion: initial creation to change legislation regarding celiac disease based on the following points. The speaker in the discussion was celiac patient Knesset Member who testified about her difficulties as an allergic to gluten. During the discussion the points were raised and a date was set for the discussion of the Knesset after the summer recess.
Signing Citizens for promoting the legislation to ease the lives of people with celiac disease
In July, Team Alergln signed citizens on a petition calling on the government to change the way it treated celiac patients.
The petition calls for the government to lower the prices of gluten-free food, enriching the menu of schoolchildren and gluten-free food day care centers the same way that vegetarian students are treated, even though vegetarianism is not a disease and celiac disease is.
The petition refers to the date of the initial test for identifying celiac, in compliance with our proposal to all those who will carry the disease genetically should perform a test to identify the disease. In our opinion, early diagnosis is worthwhile for the country as well as for the patient. Early diagnosis would save the State related diseases to celiac such as thyroid problems, cancer and more.
The petition was distributed on all social networks: Facebook, Google +, Instagram, Twitter. We also distributed the petition around Kiryat Shmona. Kiryat Shmona is considered a significant tourist city so there are a large number of citizens passing through in the summer.
Media Exposure
The media is the most meaningful way to expose an idea to the public in Israel and abroad. To this, we worked intensively to spread the idea to as many people as possible. At the same time exposure as an entrepreneurial product was equally important for us to raise awareness of the problem of celiac disease as described above.
Articles were written about the team in the local and national press. We were interviewed for an economic program on Channel 10 (Israel's second largest TV channel) and for the main news program on Channel 2 (Israel's largest and most popular TV channel). In addition to being in the main daily news, our story was aired on the popular children's channel in Israel and a radio program on "Reshet Bet".
It appears that exposure to the media enabled us to increase its sphere of influence which we wanted to achieve. Here are some media reports:
