World CML Day 2013…a great success
World CML Day 2013 was a huge success. It was a day full of excitement, but also of learning, reflection and hope. All over the world, many activities were carried out on this 22/9. The new logo and new name of World CML Day (previously known as “CML Awareness Day”) underlined the global nature of the campaign, and lend further weight to its slogan “all united, all unique”. We were all unique, but felt united by sharing what we all do!
Check out this section and learn about everything we have accomplished together!
Thanks to the whole community for everybody´s active contribution!
World CML Day Activities 2013
Germany: On Sept 21, German Leukämie-Online will host a very special evening event in which we will launch our new book “Quite an act sometimes: 16 walks on a tightrope with Chronic Myeloid Leukemia” that portraits the life of 16 German CML patients. The book was jointly developed by Jan Geissler and photographer Bert Spangemacher who was himself diagnosed with CML in 2009. The book will be presented above the roofs of Munich in a photo exhibition with portraits of CML patients. We are expecting about 80 guests from all over Germany, mainly CML patients, relatives and CML experts. The program during the day (21st and 22nd of Sept) will not be less interesting, as we will be offering interesting medical lectures focusing on clinical trials, therapetic options and new methods of diagnosis. We look forward to an inspiring Word CML Day!
France: On 22 September 2013, LMC France will launch several activities throughout France: several new videos, announcement of the Laureate of “the financial support for research LMC France 2013”, launch of the book “What is my PCR”, LMC France organizes the First General State of CML (Chronic Myeloid Leukemia) throughout France during the year. The General State of CML organized by LMC France sees itself as a space to meet and exchange information in order to improve our current situation, through debates, ideas, experiences, proposals and projects. The General State of CML is a new concept because it stems from the patients themselves while at the same time reassembling doctors, hospitals and the government. The objectives of General State of CML are: to make a multidisciplinary evaluation of the reality of patients and their families lives with CML / to make patient care a priority / to inform the general public about CML / to give visibility to patient with CML / to set up quickly concrete actions within the government, hospitals and the health community / to publish testimonies from patients and their families. The General State of CML consists of two steps: 1.) discussion meetings to collect testimonies and grievances from patients and their families which will be published in a book, 2.) in September 2013, at the occasion of the third Worldwide Awareness Day, LMC France will present to the government an appraisal of CML in France as well as proposals intended to improve the quality of care, and support for patients and their families. On 19 September, Lab tour with INSERM (National Institute of Health and Medical Research). Then to cap off the third World CML Day,on October 6, 2013, LMC France organizes a foot race lively and friendly: „become a hero! “. The goal of this day is to relay information about CML among patients and the public, in a moment of conviviality and entertainment.
Israel: In Israel we will have two big events. Because 22/9 is a holiday in Israel, we have shifted the events, and our first event will be a gala dinner with our members and families, guests and a show, entitled: Singing for life. We expect about 250 participants. On September 25 CML patients and families, and hematologists and other health care providers will participate in a bicycle ride in the streets of Tel Aviv. This is the first time we organize such a sport activity. We estimated there will be total of about 120-150 participants.
Lithuania: Every fall COHP “Kraujas”, Lithuania, commemorates awareness days of various blood diseases: World CML Day, World Lymphoma Awareness Day and organize myeloma patient education. For World CML Day 2013 we have planned: 1.) To focus on adherence to treatment and the importance of molecular monitoring. For this purpose we will send a letter to our patients containing information about CML day and compliance, CML handbooks and patient passports. We also wish to add CML day pins to every letter. The letters will also be sent to the healthcare authorities. 2.) On September 19th we are inviting all patients and their relatives, healthcare specialists, supporters, healthcare politicians and media representatives to a concert of young performers, which is supported by Lithuanian Academy of Music and Theatre. 3.) On September 22nd we are going to issue press releases about CML day aiming to educate society about CML and to draw the attention of healthcare politicians to CML and funding of its treatment. 4.) A 64 sq m social billboard featuring the faces of our patients will be displayed in Lithuania’s capital from September up until November. We will be seeking attention of the society and healthcare politicians that healthcare system does not receive sufficient funding and that modern and that effective treatment would be initiated in a timely manner.
Thailand: The Thai CML Patient Group will arrange the event for 2013 World CML Day under the motto “No Thai CML Patient left behind”. The event will be held in 3 hospitals located in Bangkok during 16 – 20 September 2013. The activities include press conference, patient educational session on “Basic Monitoring for CML Patient” by the committees of Thai CML Patient Group under the consultancy of Prof. Saengsuree Jootar, MD, Chairperson of Thai CML Working Group. Moreover, CML patient handbooks will be distributed to all patients who attend to the event as well.
Slovenia: In Slovenian Lymphoma and Leukemia Patient Association, L&L, we are preparing a whole day event on 22/9 named CML DAY 2013 to gather CML patients, their families and medical specialists for CML. Event will contain education about treatment and living with CML and social gathering with picnic. The aim of the event is to connect the CML patients, their families and their hematologists personally, and to establish ‘Slovenian CML community’. The aim is reachable in a small country Slovenia, while the number of CML patients is about 170 altogether. We wish to show CML patients that they are not alone. Moreover, we wish to raise awareness at patients, that it is important to know their CML disease, treatment options and treatment results, in order to collaborate at treatment with the doctor well. We will include WHAT IS MY PCR campaign into event. On our CML DAY 2013, introductory educational session will be followed by a set of ‘counseling corners’, each lasting 45 min, partially in parallel. Each counseling corner will be led by one of the hematologists and dedicated to particular theme, for a small group of patients and family members. On another, picnic area, a social gathering of the patients, families, doctors and other medical staff working with CML patients, will take place. Music for entertainment and a children program will be provided. Now the program of the event is prepared. The hematologists from all eight main hospitals in Slovenia have already confirmed to come and collaborate on the event. Hematologists will give written invitations to their patients, so that personal invitations will reach all CML patients in Slovenia. We expect at least 200 people on Slovenian CML DAY 2013.
India: The Max Foundation India will be organizing several initiatives in different cities, covering the four main regions of India. One initiative with oncologists in Tata Medical Centre in Kolkata will combine Awareness, Education and Entertainment for over 200 participants. Tata Medical Centre is a newly established centre in the city of Kolkata. The Kolkata City Chapter of Friends of Max is already busy inviting CML survivors and their caregivers to attend the event on the 22nd. Apart from that, The Max Foundation India will organize an event in Jodhpur in the Western state of Rajasthan and another one in Chandigarh, up in the North. They are also having a meeting in the Southern city of Hyderabad on the 2nd of October. Physicians have been expressing their willingness to join and make the events a success. The whole team of The Max Foundation India looks forward to this year´s World CML Day! The MAX India Office in Bombay is planning to release dozens of Orange balloons with WORLD CML DAY 2013 emblazoned on them over the Arabian Sea and cut a cake with everyone involved in the care of over 16700 CML survivors in India. This will happen on Monday 23rd as on Sunday our offices remain closed and also we are in a couple of other cities of our vast country. Bombay being the hub from where we manage our patients , we feel that any CML Day celebration is incomplete unless it is marked here.
Venezuela: On the occasion of World CML Day, ASAPHE has planned the following three activities:
- Media campaign from September 1st through the end of the month, including radio, newspapers and digital media.
- Lunch-meeting on September 21st with hemato-oncologists, patients and people related to the Association. There will be a talk about the LMC conscientization day and recreational activities.
- A meeting within the Venezuelan Hematology Congress with patients from neighboring states near the site of the congress where hematologists will be present and conversations may take place.
USA: In observance of CML Awareness Day (US) and World CML Day, the National CML Society will hold CML Awareness Day 2013: A National Day of Advocacy on 22 September 2013 in Washington, D.C., our nation’s capital, to raise awareness of the issues US patients face in obtaining CML care and to encourage our country’s lawmakers to support legislation that will make it easier for US patients to obtain CML medications. The day will also include an evening ceremony on the West Lawn of the Capitol Building in which 5,000 luminarias will light the path walked by US lawmakers to represent the approximately 5,000 US patients who are newly diagnosed with CML each year. A lantern serves as the symbol of the society, and the luminarias are lanterns consisting of a candle or light set in sand inside a paper bag.
Fundación Esperanza Viva, Colombia, will 1. provide a cycle of speeches for CML patients on patients’ rights and on continuous quality treatments in the cities Bucaramanga, Barranquilla and Medellin. 2. make people know about CML and alert signals through the media: Radio, TV, Newspapers, Internet, Social Networks (Facebook, Twitter), emails… . Additionally, Fundación Esperanza Viva has organized an awareness campaign which aims to show that there are thousands of people in the world fighting for their lives and for proper quality treatment. Participants were asked to take pictures of themselves holding up a board on which in a very personal statement they wrote what they are passionate about. The initiative showed that CML does not keep people from dreaming and being passionate. Photographs will be published on the organization´s blog (www.fundacionesperanzaviva.blogspot.com), Facebook (www.facebook.com/fundacion.viva) and Twitter @FUESPERANZAVIVA. Photographs will also be exhibited in front of the palace of justice. With this, the organizers are publicly claiming for proper treatment for every CML patient.
On this Sep. 22 TSUBASA, Japan, in cooperation with IZUMI (patient organization) and Novartis Japan, will organize a lecture open to citizens under the title of ‘Living with CML’. The event will take place in Tokyo and will be broadcasted live to six locations. Our booth will display a poster of ‘Cover make-up’ that is for patients who fear operation scars or pigmentation of anti-carcinogenic agents and the impact on their QOL. Our member will also wear the new World CML Day pins on this occasion.
CML Association of Serbia: This year’s World CML Day in Serbia will be painted by the generic drug colors. We are organising the big meeting for patients, their family members and caregivers who will travel to Belgrade from all parts of Serbia. The first color are hematologists who will give us the results of 6 months treatment with generics (luckily good ones) and answer the questions of the patients in the friendly and personal relationships. Second color will be the promotion of What is My PCR? campaign and the raising of the awareness why PCR testing is so important, especially in treatment with the generics. We will promote 2 new hematological centers (clinics) where PCR can now be done. In Serbia there is 6 referent centers for treating CML and only 1 does not have PCR testing now! The third color, and the most important one, are our patients who will share their experiences and have a nice time in the friendly atmosphere with good food and drinks.
Each year, AMAL (Morocco) organizes CML World Day on Jamaa Lafna, an historic square in Marrakech, Morocco to make known the disease and raise awareness about leukemia and blood cancers. We had a fantastic support from all stakeholders: medical bodies, authorities and medias. And because many patients and relatives cannot attend, reinforce the message of hope and support us on stage on the square. AMAL DECIDED TO TAKE THE PLACE JAMAA LAFNA TO THEM. This year, AMAL organizes the third edition of CML World Day on Sunday, September 22, 2013 from 9am to 13pm at the Mohamed 6 Hospital of Marrakech under the theme: Jamaa lafna in the hospital to support CML patients. A rich and varied program: presentation of AMAL, folklore, heritage, artwork, stands, and entertainment. Media coverage is planned (Radio and TV), several journalists will be present. We hope to see you there and rely on your generosity to help us in this day (donation of medicines, diapers, toys, food, clothes, sponsorship, membership…). For donations, please contact directly the AMAL association: firstname.lastname@example.org, 00212663278290. Thank you for supporting us to make a difference.
The 9/22 as CML Awareness Day is celebrated around the world. In Guatemala, ASOPALEU will have a wonderful day celebrating together with patients, families, physicians and volunteers. Within the expected activities, we will provide conferences that will help the patient to have a quality life, but most important, we will share joy, fun and hope. This year has been integrated to all members of the family to the celebration, with activities where children can have a great time. Singers, Magic Show and of course Clowns, will make this day a memorable day. This year in which ASOPALEU continues to grow in many ways, is expected to the attendance increase. The activity will focus around a very important subject, “To make Known that CML transforms us into people of faith and strength, that we have decided to live with enthusiasm and commitment”. We know it will be a perfect day to increase awareness on this September 22nd to be held at Hotel El Conquistador from 8 am to 6 pm, so we can join the worldwide celebration.
In Romania, RONARD/ARCrare/RPWA initiated a series of exciting activities:
- Activity 1. Organizing an information campaign in the virtual environment: posts on facebook, websites: 22 posts until 22/09/2013.
- Activity 2. Designing and distributing information to the public, street campaigns in hospitals;
- Activity 3. Organizing a campaign video message: What does LMC campaign for you? Replies short recorded video will be uploaded to the website.
- Activity 4. Press conference on the theme: Life with CML (we’ll talk about the campaign and its role, we invite specialists to present all treatment options currently existing + CML patients to talk about their personal situation (hope to have patients with different treatment medications, and of those who needed transplants) + authorities that tell us about what is currently done for CML patients in our country + media) location: Bucharest.
- Activity 5. Organizing a group of patients with CML at NoRo Center for a period of 10 days.
- Activity 6. Translation and access to blog: Resource & Knowledge Center on CML generics, copy http://www.cmladvocates.net/generics drugs and substandard drugs.
Russian Federation: As a part of the World CML Day 2013 9/22 the 8-th All-Russian Forum for CML-patients will take place in Moscow (September, 19-22). This year participants of the Forum in the capital of Russian Federation will be not only citizens of Russia, but also guests from Ukraine, Kazakhstan, Tajikistan. In other words, this meeting will have the status of the International conference. About 150 delegates are expected to come. Representatives of Healthcare Ministry and Federal Service on Surveillance in Healthcare of Russian Federation; leading experts in the CML area; regional leaders of CML-patient communities; members of the All-Russian Union of patients will take part in work of our Forum. The issues to discuss at the conference:
– Experience of generics’ applications in Russia and other countries and the organization of therapy monitoring on generics in RF;
– Joint efforts of medical and patient communities against the CML;
– New kinds of CML therapy.
A dancing flash-mob “Continue to live!” in support of the CML patients will be organized on the territory of the hotel complex Izmailovo on September, 20th at 1.15 p.m. The uniqueness of this project is that CML patients from all the territory of Russia and some other countries in company with Moscow volunteers will dance on the same dancing place.
As the symbol of longevity the red leaves oak alley will be planted by the guests of the Forum on September, 22nd in the park of Izmailovo. The alley will be called Overcoming. The red colour of the leaves has symbolic meaning as well. Afterwards the solemn dinner will take place. The Conference and the activities devoted to the World CML Day, will be widely covered in both mass media and TV. Video and pictures will be here on our site: www.sodeystvie-cml.ru
Shanghai Roots & Shoots, China, invites 100 CML patients to join us on September 22. We will make a one day trip to an old town Shao Xing. We plan to visit Fu Mountain Park and Former Residence of Lu Xun, hoping the tour will give our patients a relaxing time and a chance of bounding with each other. Also, on our way from Shanghai to Shao Xing, which shall be around two hours, we have prepared warming up games, including quiz of CML, and little surprises are prepared for winner of every around. Before the games, we are going to introduce World CML Day as well as what CML organizations are doing for the day this year worldwide.
Leading Oncologists & hematologists in India will be organizing a CME for physicians on Chronic Myeloid Leukemia (CML) at Jodhpur, India on the eve of World CML Day (21 Sept) and a CML Patient Education Program on 22 Sept at the Jodhpur Medical College, India. CML Advocates greatly appreciates these initiatives!
To help raise awareness of World CML Day, the Leukaemia Foundation of Australia is providing extensive information on their website (see http://www.leukaemia.org.au) and giving away World CML Day badges.
Hong KongAdult Blood Cancer Groups´ World CML Day-events will include a series of talks by doctors on CML treatment and monitoring, nutritionists on healthy diets and sharing by patients, plus a press conference to kick off the event.
Gruppo AIL Pazienti LMC – Italian CML Patients Group will hold a webinar to celebrate the WORLD CML DAY 2013. The webinar, short for “web seminar”, is a live interactive presentation over the internet and it will take place on September 19 from 6 pm to 8 pm. After the welcome message from Professor Franco Mandelli (President of AIL – Italian Association against Leukaemia, Lymphoma and Myeloma), Professor Giorgina Specchia (Head of Department of Hematology University of Bari) will talk about “CML from present to future”. Plenty of time will be left for questions at the end of session. To read the whole agenda of the event and to sign up to join the webinar (http://www.lmconline.it/index.php?option=com_content&view=article&id=71).
The Philippines: Touched By Max (TBM) PHILIPPINES will celebrate World CML Day 2013 by organizing a T3 Parade: Tarpaulins on Tricycles Tour in the morning of 9/22. Tricycles are 3-wheeled mode of transportation for the lower segment of the commuting public. Since they are relatively small in size compared to cars, they can easily navigate narrow streets and byways. These tricycles are walking “sign-advertisements”. In order to cover their passengers from the searing heat of the sun or constant rain, they have tarpaulins installed as segment roofs. The symbol of World CML Day will be placed in these tarpaulins. Awareness will be carried out by fifty (50) of these tricycles in the densest city per square kilometer, in the Philippines, Navotas City. Even after 9/22/2013, the tarpaulins will still be in place for one year, constant awareness to extend until 9/22/2014. Approximate audience numbers will number in the thousands. The parade will be highlighted by inspirational messages from our sponsors and will culminate with a dance/aerobics rendition by the tricycle drivers, depicting the acronyms of “TBM, CML & 9/22” in a separate venue. We will try our best to do the choreography, ala Gangnam Style. The whole event will be videotaped and edited for uploading at YouTube in the days to follow. Also, on the night of 9/22, we will inaugurate TBM’s new Office inside the compound of St. Luke’s Medical Center in Metro Manila. This new office will be closer to the patients that are availing of medical services in the same hospital. Truly, it is going to be a very busy 9/22 for us!
The Cyprus Alliance for Disorders will organize a Press Conference for the Chronic Myeloma Leukaemia Day. Dr Marcoullis, haematologist and oncologist, will be at the press conference to talk about CML in order to educate and inform people in Cyprus regarding rare leykaemias, their symptoms, and their treatment. The Press Conference will take place on the 22 September 2013, at the Union of Cyprus Journalists Office, at 11 a.m. Cyprus Time. A representative from the Ministry of Health will also be present at the event along with members of C.A.R.D and the Medical Community.
Associação Portuguesa Leucemias e Linfomas (APLL), Portugal: Our association APLL is preparing a press release and a special information with all the contact of CML Advocates Network to be shared in our website www.apll.org and in our facebook. We are congregating more patients and survivors to work together – we updated our logotype to express this major goal of APLL. – “+ pelos doentes” – meaning ” more for patients”.
Macedonia: The Association for help in treatment of patients with CML will mark the international CML day on 23-rd of September with a Press conference in Skopje. We deliberately chose 23-rd Monday as a working day to have a greater presence of journalists. We invited all the patients from Macedonia, Ministry of Health, Health Fund, Biro for drugs and the doctors from the Hematology Clinic. We are expecting to have a great response by the journalists, and we are also planning a TV appearance. We want to inform Macedonian public about the great injustice done on CML patients in the Republic of Macedonia. Here is a list of a few anomalies & injustices:
1. Imacrebin doesn’t have a recommendation by the European Medical Agency – EMA
2. Imacrebin doesn’t have Indication – Chronic phase for CML
3. Macedonia is the only country in Europe that gives Imacrebin to the CML patients
4. The price difference is only 167 Euros, we require for a right to choose to be allowed with a surcharge.
5. Placing Tasigna on a Positive list.
6. In case of side effects, the CML patients don’t have a choice of having another drug. These are the basic things that we would like to inform the Macedonian public about, and to make our Ministry of Health think seriously what they are doing and to accept our arguments or al least do something to improve the treatment of patients.
Henzo Kenya celebrated the second World CML Day in Kenya with an event held at The Nairobi Hospital on 14th September 2013. A total of 202 people participated in the event including patients, caregivers and supporters. Prof. N.A.O. Abinya and Prof. Mwanda gave talked on CML and GIST, while Mr. Phillip Odiyo gave a talk on therapies available for cancer patients at Faraja Cancer Support Trust. Henzo joins other CML advocates around the world in celebrating our uniqueness and togetherness as a CML Community – SOTE PAMOJA HENZO – TUKO KIPEKEE NA TUNASHEREHEKEA! meaning “All United, All Unique” and we are Celebrating.
In Sudan an event for patients and the public was held. Also there was a special program in the local radio.
The Ethiopian CML Foundation organized a meeting to celebrate the anniversary for the third time on World CML Day (9/22). During the meeting issues related to the membership of the society were discussed and new leaders of the society were elected. Prizes were given to the outgoing leaders. Complications and the importance of adherence to treatment with Tyrosine Kinase Inhibitors were presented and discussed by a GIPAP physician. Then “Questions and Answers” session was followed. The GIPAP physicians responded and answered to the many questions forwarded by the members of the society. Soft drinks and sweets were served. The meeting came to an end after 3 hours. We had a successful meeting. Thank you for encouraging us to celebrate the World CML Day (9/22).
On September 22, 2013, the Beijing New Sunshine Charity Foundation, China held their first China CML Patients Meeting to celebrate World CML Day 9/22. Approximately 200 people, including CML patients from 14 provinces, domestic experts in CML treatment field, government officials, and our special invited guest Ms. Cheryl-Anne Simoneau from The CML Society of Canada, along with academics in public health policy, attended this meeting. The main theme of the meeting was to share the latest CML treatment information, and to promote the medical insurance reimbursements of TKI drugs.in China. Our celebrations included announcing the winners of our essay contest “Live and Love” and the three winners shared their essays with the audience. We also took the opportunity to recognize the work of our patient representatives who have worked to help promote patient rights. Ms. Cheryl-Anne Simoneau shared with us the story of how CML Awareness Day began and told us about how the day is observed in Canada to meet with federal and provincial health ministers and other stakeholders to ensure that Canadian CML patients have equitable access to TKI’s in Canada. The afternoon session included a panel discussion covering the topics of public health policy, especially medical insurance reimbursement of targeted drugs from the perspectives of domestic, international, and academic experiences. Last but not the least, patient representatives submitted a petition that was signed by over 1100 Chinese CML patients advocating TKI targeted drugs into medical insurance reimbursement, with a report about economic burden of China CML patients, to the deputies that attended the meeting. This meeting has played a significant role in introducing CML Day to China, and making it well-known by Chinese CML patients and public. We have gained a precious chance to express our voice to the public, and have raised government’s consideration to review the policy of including TKI into medical insurance reimbursement thereby ensuring equitable access to these important treatments for all Chinese CML patients.
- translated and adapted the press release «International CML Community promotes global unity and local action through World CML Day celebrations taking place on 22 September 2013» and posted it on the website – http://cml-stop.ru/viewforum.php?id=44
- made and sent the video (“Vitali states what World CML Day 2013 means to him) – http://cml-stop.ru/viewtopic.php?id=861 and http://www.youtube.com/user/cmladvocates/videos
- received and posted interview Anna Turkina, Doctor, Professor, Head of the scientific advisory department CML in HRC – (Hematology Research Center, Federal State Institution of Ministry of Health and Social development, Moscow), see http://cml-stop.ru/viewtopic.php?id=870. She talked about the past, present and future in the treatment of CML in Russia. We will have a third-generation drug – PF114!!! See http://community.sk.ru/net/1110108/