World CML Day 2015

9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukaemia (CML).
Since 2008, patient organisations around the world have initiated events and projects on “CML Awareness Day” on September 22 to raise awareness of the needs of patients living with CML. Since 2011, the worldwide community unites to celebrate “World CML Day” on that date.  – from CML Advocates Network

Sitting down to write a post for World CML Day, even if there are only a few hours left, is always a daunting prospect. Ultimately it’s not just one day for patients, but I understand the sentiment. For patients like Khalid Younis it brings more attention to his cause to get the drug (ponatinib) he deserves – you can read his story here.

So, when it came to writing I was in danger of either repeating myself or simply bashing governments and organisations again. PING. An email arrives. It’s a blog post from my good friend Greg Stephens, the executive director of the National CML Society in the US. Greg is one of the good guys, a really good guy. That’s the thing about CML, it brings people together. I would be a poorer person for not knowing Greg. His fiery determination, humility and wit makes for great company which come in handy when the sensible people have gone to bed at conference.

His blog post was a complete inspiration and I asked him if I could post it here, he said yes in the most beautiful way. Here it is, he said things I wanted to say in a much better way. Cheers Greg x

Kris

Some things to ponder on World CML Day
by Greg Stephens

Today, 9/22, is a day that is known well among those of us in the CML community. It’s a day set aside for awareness activities and a time to call attention to the many challenges faced by anyone living with Chronic Myeloid Leukemia. Over the past seven years, today’s awareness initiatives have grown in scope, rising from the first CML Awareness day in Canada to a global emphasis. Right now, activities are going on around the world and key issues are being discussed. So, what are some things to consider on this day set aside as a day of awareness?

First off, it’s not for us. While we benefit from raising awareness, the true purpose for promoting blood cancer and CML awareness (year round, actually) is so the public and those who know nothing about blood cancers can learn more about this group of diseases, recognize the amazing progress that has been made through medical research, have a better understanding of the realities of blood cancer, and dispel myths and misconceptions that may exist. For those of us in the CML community, it’s an opportunity to share our “reality” – truths if you will, with friends and family, medical professionals, the makers of our treatment drugs, and countless others who need to know just how much CML impacts one’s daily life. While there is focused attention on CML, we have a great opportunity and responsibility to create awareness for those outside our community.

Here are a few things to think about:

1. Eighteen! Today, 18 people will be diagnosed with CML* in the United States. There will be 18 more tomorrow and the next day, and the next….all throughout the year.
2. For the majority of those people, their CML will be brought under control with treatment, however, a small portion will not have that experience.
3. The current costs of our CML treatment drugs are unsustainable and many, even WITH insurance coverage and other assistance, are suffering financial ruin as a result.
4. There is no “GOOD” leukemia. Did I just say “GOOD” and LEUKEMIA in the same sentence?
5. Side effects are an ever-present reality that impedes many patient’s daily lives.
6. Drug parity legislation and fair access to oral chemotherapeutic drugs at a national level is needed, now more than ever.
7. Some may be able to achieve a treatment-free remission (TFR) and go months – even years without treatment. Others will be dependent upon treatment for their lifetime.
8. Quality of life issues are widespread and more attention must be focused on addressing them.
9. Learning about CML from reputable resources and becoming knowledgeable about the disease is imperative for anyone diagnosed.
10. We aren’t “finished” with CML – we not only need curative research to continue, we need it to increase.

This list could go on for countless pages and not even begin to cover all the things our community deals with on a daily basis. You probably have a list of your own. It may seem overwhelming, but together we can bring greater awareness to these and other realities we face every day. To succeed, we must look beyond ourselves and our community and boldly speak up so that those who minimize the life with CML or know nothing about it will know the truth. Yes, great things have happened and will continue to happen for our community, but much work remains.

I hope you will join us in making a difference for anyone living with CML.

Greg

On World CML Day Leukaemia Patients Worldwide Unite

Taken from www.cmladvocates.net – an important hub of CML advocate activity:

On World CML Day 9/22, leukaemia patients worldwide unite to address the courage and hope required to live with chronic myeloid leukaemia, and call for access to best available treatment and care for all patients 

 

Group by group, advocate by advocate, and survivor by survivor: on World CML Day on 22 September, the global patient community is raising awareness about the needs of people living with chronic myeloid leukaemia (CML). Simultaneous events, publications and meetings on all continents put a spotlight on the real needs of patients and their relatives, and demonstrate the power and unity of a unique worldwide community that knows no borders. Their brand-new book “Faces of Courage and Hope” further provides an insight into the journeys of 16 CML patients in 15 countries.  

 

Members of the CML Advocates Network, which is today comprised of 90 patient advocacy groups in 68 countries, are honouring World CML Day on September 22nd 2014 through actionable events taking place in their communities. All events worldwide aim to underscore the importance of the needs of people living with CML. The needs of patients in different regions vary largely – from basic challenges of access to treatment and care, over uncertainty on the quality of treatments, to living with cancer as a chronic disease.
 
Although CML is today often referred to as a model disease how blocking essential mechanisms of a tumour can bring cancer to a halt, not all that glitters is gold. Even though there has been a medical revolution in treating CML over the past decade, not every patient has access to best available treatment and care, and many patients struggle to live with cancer as a chronic, life-long disease.

 

There are obvious disparities in terms of access to treatment and diagnostics. We cannot turn our eyes from the fact that socio-economic barriers are present in many countries, where patients are lost in debates around high drug prices and drug quality of copy drugs, combined with the lack of access to quality diagnostics. Just in May 2014, CML patients worldwide called for quality and consistency when new drugs are introduced to treat their cancer. Since none of the new drugs provide for a cure of CML yet, even in countries where access to expensive cancer treatments is ensured, patients are facing challenges with the impact of a life-long treatment on their quality of life. The community’s goal is clear: All CML patients shall have access to optimal and affordable treatment and care, giving them a quality of life as close as possible to normality. There is still a long way to go.

 

Key initiatives on World CML Day 2014

Again in 2014, plenty of events are being carried out by patient organizations throughout the world in order to raise awareness of the needs of people living with CML worldwide. The initiatives are listed on the CML Advocates Network website at  http://www.cmladvocates.net/worldcmlday2014/worldcmlday2014/initiatives
 
On World CML Day 2014, the CML Advocates Network publishes an English-language book Faces of Courage and Hope that illustrates the faces and cancer journeys of 16 CML patients from 15 countries. Men and women of different ages, ethnicities and backgrounds, each share their unique experience in coping with life-altering circumstances and how they refocused their lives. The book has been shipped to CML patient organizations in 56 countries, and will be available on Amazon.co.uk for worldwide shipping from 22 September 2014. For more information see: http://www.cmladvocates.net/book-faces-of-courage-and-hope

On 9/22, the CML Advocates Network also publishes a patient-friendly summary of the European LeukemiaNET’s CML Treatment Recommendations in English, Italian, French, German, Hebrew, Dutch, Russian, Polish, Spanish, Portuguese and Arabic. The summary will allow patients to understand the consensus recommendations provided by a global group of CML experts, coordinated by the European LeukemiaNET.

In addition, the CML Advocates Network provided buttons with the community’s World CML Day logo – a total of 35,000 ‘World CML Day’ buttons were distributed to organisations in 34 countries on all continents to raise awareness about CML.

22 September – the global date for awareness about CML

The date chosen for World CML Day (9/22) adds symbolic significance to the campaigns of the patient community: World CML Day is honoured on September 22nd because 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukemia (CML), a rare cancer that is characterised by an unregulated growth of white blood cells. Just about 15 years ago, CML was a lethal disease for the majority of patients. Nowadays, CML is no longer a death sentence. If patients are treated effectively with recommended treatments, they can have a life expectancy similar to that of the general population.

 

Since 2008, patient organisations around the world have initiated events and projects on World CML Day to raise awareness of the needs of patients living with CML and to sensitize not only the public, but also politicians and medical professionals regarding CML. “All united, all unique!” is the theme that brings the groups together. It is a reminder of how each person and each group experiencing a rare cancer will have their own journey. As Jan Geissler, CML patient and co-founder of the CML Advocates Network shares, “Since the first meeting of a handful of CML groups back in 2003, it is impressive to see the growth in intensity of activity in the CML patient community. Today 90 groups are members of the worldwide network. We are not only meeting once in a year at our CML Horizons conference – we are supporting each other across borders, and are jointly collaborating with all stakeholders, throughout the year. Working together is the key to improving support and care for CML patients in all regions.”

 

Thanks to all the groups around the world participating in World CML Day, together we are, “All united, all unique!”

 

About the CML Advocates Network

The CML Advocates Network is a patient-run network and platform for patient organisations supporting patients and relatives affected by Chronic Myeloid Leukemia (CML). Launched in 2007 by four founding patient organizations, it has now grown to a network of 90 leukaemia patient groups in 68 countries, offering support to patient leaders by sharing of best practice, information and advice for CML patient leaders. Individual patient support as well as country-specific policy work is being covered by its member organisations on the country level. The CML Advocates Network is hosted by the patient-driven, non-profit Leukaemia Patient Advocates Foundation in Bern, Switzerland.

 

Members of the CML Advocates Network 

See the list of all 90 member organizations here: http://www.cmladvocates.net/cml-groups-list

World CML Day

World CML Day 2014

Early next year it’ll be 7 years since I was diagnosed with Chronic Myeloid Leukaemia. I was 32.

Today is World CML Day. The story goes that, for no reason, two of my chromosomes had broken, swapped over and created a new, naughty, one called the Philadelphia Chromosome. This sent rubbish message to my body and could have easily killed me . My white blood count was 192 on diagnosis. It should have been 7.

The (nearly) 7 intervening years have been life changing. I grew up a lot. Got married. Had a son. Fund-raised. Lobbied government. Met great people. Got better. And became a better person.

For me and a small amount of people it’s CML day every day. There are only 650 of us newly diagnosed in the UK every year. But the breakthroughs being made in the CML world have implications on cancer treatment everywhere.

I’m treated daily with two small white tablet called dasatinib. They’ve put me back together. Two small white tablets are treating my cancer. All being well I should have normal life expectancy. My hopes and dreams, outside of Luca playing for Norwich one day, are that all cancers can be treated and cured with two small white tablets. Imagine that. That’s why I keep working, volunteering and supporting, we’ve achieved so much but there is still a long way to go.

Thanks to everyone who has helped me on my journey. I’ll finish with three photo, possibly the three biggest moments in my life – all three happened after diagnosis. Have a great day everyone. K.

Wedding Day

Luca was born

Major molecular response to CML

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#‎worldcmlday‬ ‪#‎leukemia‬

WORLD CML DAY

International CML Community promotes global unity and local action through World CML Day celebrations taking place on 22 September 2013

Group by group, advocate by advocate, and survivor by survivor, World CML Day is raising awareness about the needs of people living with CML around the world through numerous simultaneous events being organized by leukaemia patient associations on all continents on 22nd of September.

Members of the CML Advocates Network, which is comprised of 79 patient advocacy groups in 63 countries, are honouring World CML Day on September 22^nd 2013 through actionable events taking place in their communities. Events aim to underscore the importance of the needs of people living with chronic myeloid leukaemia (CML), such as the significance of local and global health policies around access to treatment, care and support for people affected by cancer.

World CML Day is honoured on September 22nd because 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of CML. Therefore, the date of 9/22 adds symbolic significance to the campaigns. Since 2008, patient organizations around the world have initiated events and projects on “CML Awareness Day” on September 22 to raise awareness of the needs of patients living with CML. Since 2011, the worldwide community unites to celebrate “World CML Day” on that date.

“All united, all unique!” is the theme that brings the groups together. It is a reminder of how each person and each group experiencing a rare cancer will have their own journey. As Jan Geissler, CML patient and co-founder of the CML Advocates Network shares, “Since the first meeting of a handful of CML groups back in 2003, it is impressive to see the growth in intensity of activity in the CML patient community. Today 79 groups are members of the worldwide network. We are not only meeting once in a year at our CML Horizons conference – we are supporting each other across borders, and are jointly collaborating with all stakeholders, throughout the year. Working together is the key to improving support and care for CML patients in all regions”.
Erin Schwartz, Vice President of Strategic Partnerships and Global Advocacy at The MAX Foundation and co-chair of the CML Advocates Network’s World CML Day workgroup adds “Together, we are able to share lessons learned, help each other to advocate for policy changes, and to create a louder collective voice with which to make our needs known to the world. World CML Day demonstrates the power and unity of the community.”

How can I engage in World CML Day?

No matter if you are a patient organization, a research group, or are caring for CML patients – if you or your organization is interested in joining the World CML Day campaign, here are some examples of ways to get involved:

• Creating your video message about what “World CML Days means to you” and submitting it for the world to see at http://www.cmladvocates.net/worldcmlday/worldcmlday2013/video.
• Promoting World CML Day through your websites, events and social media channels. Visit the CML Advocates Facebook page (https://www.facebook.com/cmladvocates) or Twitter (http://www.twitter.com/cmlnet) and share our posts within your networks. You can find World CML Day logos and posters for download at http://www.cmladvocates.net/worldcmlday/worldcmlday2013.
• Tells us about the event you are organizing on September 22^nd in order to raise awareness of the need of people living with CML worldwide. We are happy to list it here:
  http://www.cmladvocates.net/worldcmlday/worldcmlday2013/initiatives.

To learn more about how World CML Day is being honoured around the world, visit the CML Advocates Network website at http://www.cmladvocates.net/worldcmlday/worldcmlday2013.

Thanks to all the groups around the world participating in World CML Day, together we are “All united, all unique!”

About the CML Advocates Network

The CML Advocates Network is a patient-run network and platform for patient organizations supporting patients and relatives affected by Chronic Myeloid Leukaemia (CML). Launched in 2007 with four founding member groups, it has now grown to a network of 79 leukaemia patient groups in 63 countries, offering support to patient leaders by sharing of best practice, information and advice for CML patient leaders. Individual patient support as well as country-specific policy work is being covered by its member organisations on the country level. The CML Advocates Network is hosted by the non-profit Leukaemia Patient Advocates Foundation in Bern, Switzerland.

Members of the CML Advocates Network

See the list of all 79 member organisations here: http://www.cmladvocates.net/cml-groups-list

About CML

Chronic Myeloid Leukaemia (CML) is a rare cancer affecting blood cells. It is characterized by a genetic disorder in chromosomes 9 and 22, which leads to an unregulated growth of white blood cells. Most cases of CML occur in adults, but very rarely it occurs in children, too. Just about 15 years ago, CML was a lethal disease for the majority of patients. Nowadays, if patients are treated effectively with recommended treatments, they can have a life expectancy similar to that of the general population.

CALL FOR VIDEOS: What does World CML Day mean to you?

A request for help from the CML Advocates Network:

As World CML Day is approaching quickly, we hereby would like to introduce you to a video challenge in preparation of World CML Day:

What does World CML Day mean to you?  … this is the question we would like YOU to answer and record in a short video message!

We intend to collect very short video statements from around the world. In those videos, people in the CML community from patients to doctors to caregivers are invited to express themselves by stating what World CML Day means to them. The individual statements will be uploaded on the CML Advocates Network’s World CML Day YouTube channel where we can all share it with everyone else around World CML Day.

With this initiative we aim to demonstrate unity among the CML community, which includes patients, doctors, caregivers and groups all over the world and – at the same time – demonstrate that every CML journey is unique, providing a different view and perception of CML and of World CML Day. “All united, all unique!”

The community world-wide will be able to share your video on their websites; patients, physicians and carers will be curious what everyone has to say about CML and World CML Day.

Each video should not exceed 1 minute in length and should start with the following sentence: “My name is xxxxx (name) from xxxx (country), and to me World CML Day means…”

See more details on how to record the video, how to submit the video, etc here:
http://www.cmladvocates.net/worldcmlday/worldcmlday2013/video

Please let the community know what World CML Day means to you, and spread the “CALL FOR VIDEOS” in your community.
We look forward to receiving your videos and seeing you and your peers on video.

Update on the International CML patients adherence survey

Received today from Giora at the CML Advocates Network, a fantastic study and well worth reading:

It is my great pleasure to update you on the great success and the recognition that our adherence survey has received at the EHA conference last weekend in Stockholm.

Here are some key facts related to our study:

• We launched the survey on World CML Day, 22.9 2012. We had 2 arms – the on-line survey where patients were recruited by CML patients groups and CML forums on the Internet, and the same questionnaire as hard copy, which was distributed by physicians in 3 countries: France, Germany and Italy. The survey was prepared in 12 languages. The on-line recruitment closed on 3 January 2013, and the deadline for paper questionnaires was 31 January. In just a short time, we have received 2151 responses on-line from patients in 79 countries, and 395 responses on the hard copy questionnaires. We couldn’t have done it without your help and support.

• We submitted an abstract to EHA and it was one of the 8 % which were accepted for an oral presentation in the CML scientific session. I had the honour to do the presentation at the EHA this last Sunday morning, 16 June. You can find the abstract here: http://www.cmladvocates.net/news/3-news/newsflash/250-eha-2013-adherence

• For those of you who are interested to see the web-stream of my presentation and see the slides which contain some of the main findings and the messages we wanted the haematologists to understand, you can go to the following link and see the slides and hear my talk and see some pictures: http://www.cmladvocates.net/3-news/newsflash/261-adherencesurvey

• You can also download the PPT file of the presentation there, so feel free to use it and to translate it. You can also hear my talk about the results of the survey, which I gave at CML Horizons 2013, which brought together more than 100 CML advocates from 60 countries, and was held in Prague last month. http://cmladvocates.net/cmlhorizons2013

• Most of the patients groups in many countries did an outstanding and remarkable work on recruiting patients to answer the on-line link. Some of them have translated the survey to their languages, printed it and had patients complete them, and then inserted the data to the on-line link. Some of these groups who did a remarkable work are: The MAX foundation, the patients groups in Thailand, Lebanon, Serbia, Slovenia, Venezuela, Philippines, Mexico and many more. Thank each of you for your help and support!

• We have also received a great support from the following CML forums on the internet and many of the patients who visit these forums have completed the survey: The Asian CML support group lead by Anjana and Roy, The UK CML support group led by Sandy Craine, the NewCMLDrug website and forum Led by Jerry Mayfield, and the CML2 forum. We also received support from Novartis, Pfizer, BMS and Ariad to contract a logistics agency that helped to collected and analyse the questionnaires.

• Special thanks to those who worked very hard to carry out the hard copy survey in 3 countries:
  • Mina Daban the head of the LMC patients group in France and the FI LMC- the CML haematologists group in France.
  • Felice Bombaci the head of the Italian CML patients group and the GIMEMA group – the Italian CML Doctors.
  • Jan Geissler of Leukemia Online, the German CML patients support group, and to the German CML Study group.

• Special thanks to the advisers who have accompanied us during this special journey: Joelle Guilhot from France, Lina Elliason from the UK, Fabio Efficace from Italy and Verena Hoffmann from Germany. These experts advisers are all involved heavily in CML research and publications, and their experience has contributed a lot to our success.

• This is no question the largest study done with CML patients on any topic, and the largest study ever done on adherence to medications like TKIs. The data base is huge and we have so far done only initial descriptive analysis, a submission to EHA, and a publication on CML Advocates Network. In-depth multivariate analysis has just started now, with collaboration of the GIMEMA work group in Italy led by Fabio Efficace.

I am very glad that with your help we have increased the recognition of the CML community as one of the most active worldwide patients communities. Thank you all so much. We will keep you updated on further developments as we are now aiming to prepare a publication at one of the scientific magazines and also submit an abstract for ASH.

International CML Awareness Day becomes World CML Day in 2013

Reflecting the great initiatives on 22 September in 2012, many used the expression “World CML Day” for their activities on 9/22, as it translates more easily into some languages. The CML Steering Committee has discussed this and came to the conclusion to use “World CML Day” from 2013.

Check this link for updates: http://www.cmladvocates.net/cml-awareness-day

9/22 represents the genetic change of Chromosomes 9 and 22 that causes Chronic Myeloid Leukaemia (CML). On September 22 (9/22), patient organisations across the world will unite to raise awareness of the needs of patients living with CML.