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

Chronic Myeloid Leukemia patients call for quality and consistency when generics are introduced to treat their cancer

PRESS RELEASE (from CML Advocates Network)

On 2-4 May 2014, patient organisations from 58 countries supporting patients and families affected by Chronic Myeloid Leukemia (CML) met in Serbia to learn from medical experts, share best practice in patient advocacy and grow their organisation’s capacity. An important topic of increasing attention discussed between patients and health professionals was the introduction of generics in CML treatment. Patients welcome that generics may improve patient access to more affordable therapies in many countries. However, patients also raise concerns about impact on their cancer when switched between different products for non-medical reasons, if these products’ equivalence in terms of quality and efficacy is uncertain.

With the imatinib patent expiring between 2013 and 2019, the introduction of generic versions is inevitable in many countries. Generics to treat CML have been introduced recently e.g. in Argentina, Bosnia-Herzegovina, Canada, Chile, China, Colombia, Costa Rica, Croatia, Cyprus, Dominican Republic, Guatemala, Ecuador, Egypt, Estonia, India, Kazakhstan, Lebanon, Latvia, Lithuania, Macedonia, Malta, Nepal, Philippines, Peru, Russia, Romania, Serbia, Slovenia, Slovakia, South Africa, Turkey and Uruguay.

Following intensive discussions at the global CML Advocates Network’s global meeting of representatives of CML patient advocates on 2-4 May, CML patient groups call to governments, health authorities and healthcare professionals to minimize potential uncertainties and risks for patients with the following five measures:

1. No generic drug to treat CML should be provided to patients without reliable proof of quality as well as equivalence of pharmacokinetics and bioavailability. Generic drugs should be approved by the appropriate authorities of the respective country or region, also reflecting a narrow therapeutic range of these cancer drugs.
2. When treating severe cancer diseases like leukemias with generics, further comparative clinical data should be collected, demanded by regulatory bodies, and published, to ensure comparable clinical efficacy of products with the same compound.
3. A CML patient should not be switched between products with the same compound for non-medical reasons, provided this patient already responds optimally to the current product and tolerates it well.
4. If a switch for non-medical reasons between products with the same compound is enforced, this should not happen more frequently than once in a year, to allow a consistent follow-up of responses and side effects on the same CML treatment. If a patient loses its response or experiences a significant increase of toxicities after switching to the other product, the patient must have the option to return to the previous treatment, or switch to another treatment if available.
5. After switching between products with the same compound, more frequent monitoring should be conducted to detect potential differences in effectiveness or side effects early.

This declaration complements the “Baveno Declaration”, signed by more than 50 CML patient organisations in 2008 to call for best practice in CML care, improved access to cancer treatment, and better adherence to international treatment guidelines.

About CML

Chronic Myeloid Leukemia (CML) is a rare cancer affecting blood stem cells. It is a form of leukaemia characterized by the increased and unregulated growth of cells in the bone marrow and the accumulation of these cells in the blood. It is caused by a genetic rearrangement in chromosomes 9 and 22.

Current oral treatments have turned CML from a lethal into a chronic disease. Still in the early 1990s, only every fourth patient survived 10 years following the diagnosis with CML. The introduction of targeted therapies in 2001 have improved the 10-year survival to 84% today, if treated effectively. However, as demonstrated in clinical trials, maintaining a stable response requires continuous effective treatment. Suboptimal dosing, low adherence or cessation of treatment has shown to lead to recurrence and acceleration of the disease in most patients. Performing a bone marrow transplantation is still the only cure of CML, and the only feasible treatment of the disease in advanced phases.

About the CML Advocates Network

The CML Advocates Network is the global network for leaders of Chronic Myeloid Leukemia (CML) patient groups. It connects more than 80 patient organizations in more than 60 countries on all continents. Its aim is to grow capacity in patient advocacy organizations, to stimulate collaboration and best practice sharing, to provide educational resources, and to work with key stakeholders in the area of leukemia care and patient advocacy.

To help patient advocates to understand the background on CML generics, it has launched a Resource & Knowledge Center, pulling together all information that is known to the patient community to date. See www.cmladvocates.net/generics

The CML Advocates Network was set up in 2005 and is run by CML patients and carers. It is hosted by the Leukemia Patient Advocates Foundation, a patient-led global non-profit organization registered in Switzerland.

Here we go again…

Didn’t crazy eighties hair rockers Europe write a song like that?

Sorry about my absence, no excuses really – simply a case of balancing all of the things I’m involved in and sadly my gorgeous little blog got bumped down the list. It doesn’t mean I don’t love you. I’m good, had a bit of blip with my blood but all OK now. I’ve got some cool things going on so the blog will spark back into life now. Hurrah!

Firstly I’ll be at Impact Day for Leukaemia & Lymphoma Research this Saturday doing a speaky bit about my journey and their online patient services which are fantastic. Find out more here: www.leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2014 If you are going please drop me a note or tweet me – I’d love to catch up with people.

The following weekend I’m off to Serbia, as a delegate, for CML Horizons 2014. I’m a 3 year veteran of this remarkable event which regularly attracts over 140 participants from almost 60 countries. It’s 3 long days with even longer evenings but it provides a great opportunity to network and get up-to-speed on the latest developments in the CML world. I’m being sponsored to go by Leukaemia & Lymphoma Research (LLR) along with their patient engagement manager. I’m delighted LLR are attending, I’ll be sharing my daily blog entries on their website.

Finally, I don’t do things by half, I’m pursuing some issues with the finance industry about life insurance cover for CML patients. Whilst traditional cancer patient are able to get cover after being in remission for a number of years, it is incredibly difficult to get cover if you have had blood cancer. I think this is partly down to the sector not understanding the new treatments available to us, I’m hoping to work this out. I’ll keep you posted.

I trust you are keeping well? Thanks for sticking with the blog. I’ll post at the weekend from Impact Day.

Kris

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.

NEW CML Resource & Knowledge Centre

Trust those great people at CML Advocates Network to drop a brilliant new resource in our lap. This is well worth checking out. K

Over the next three years, CML patients in more and more countries will be facing the use of generic TKIs and copy drugs to treat CML.

To provide patient organizations with background information on this important issue which has so far been quite difficult to find, we have launched a Resource & Knowledge Center on CML generics, copy drugs and substandard drugs.

Please see new section here: http://www.cmladvocates.net/generics

It provides:

• an unofficial directory listing all CML tyrosine kinase inhibitors (TKIs) that are – to our knowledge – available to date:  http://www.cmladvocates.net/generics/cml-drugs-register
• the results of our survey on generics, copy drugs and substandard drugs in CML which was conducted by CML Advocates Network in collaboration with iCMLf in March 2013. The survey summarizes 86 responses from 55 countries – the data is also available for download.
• the webstreams of our session on CML generics and substandard drugs at “CML Horizons 2013”, which featured a presentation of the WHO, of the CML Association of Serbia and the CML Advocates Network
• an index of scientific articles on the use of generic drugs in CML treatment: http://www.cmladvocates.net/generics/generics-publications
• our blog on CML generics. (This is only available after login for members of the CML Advocates Network to keep discussions private in the community) http://www.cmladvocates.net/generics/generics-blog
• a glossary with key terms and definitions in the area of drugs and generics: http://www.cmladvocates.net/generics/glossary

We will soon complement this by a “Best Practice Toolbox” for advocacy on generics in a few weeks, which is currently under construction. The “toolbox” will provide useful advice and tools on how to address this topic as an advocacy organization when generics or copy drugs are being introduced in your country.

Finally, we would like to stress that the Resource & Knowledge Center on CML generics, copy drugs and substandard drugs is a purely patient-driven, non-commercial initiative. It has no interest to promote, or assess, any of the drugs. The only intent is to increase transparency in a confusing environment.

We hope that you will find this Resource & Knowledge Center very useful!
We are looking forward to your active participation in the blog and the new knowledge center, and are happy to receive your feedback!

Nicole, Giora and Jan
CML Advocates Network –
http://www.cmladvocates.net

Press Release: Kris Griffin speaking at CML Horizons conference in Prague 2013

A leukaemia survivor from Kidderminster has spent 3 days at a conference in Czech Republic speaking to delegates from 60 countries about his experiences.

Kris Griffin was invited to the Chronic Myeloid Leukaemia (CML) Horizons conference in Prague where he spoke to an audience of 150 patient advocates, nurses and physicians about using social media and being a ‘connected’ patient.

CML Horizons is a community-run and multi-sponsored conference, which has evolved from the “New Horizons” conferences 2002-2011. It is run by the CML Advocates Network and hosted by the newly established, non-profit, Swiss-based, patient-driven “Leukaemia Patient Advocates Foundation” in Switzerland. The conference demonstrates the great power of the global community: inspiring best practice presentations, materials, marketplace sessions, interactive forums and updates by CML experts from all over the world.

Kris, who is treated at the Queen Elizabeth Hospital in Birmingham, also works as an advocate and parliamentary lobbyist fighting for other cancer victims to have access to the drugs they need.

He said, “This conference provides patients with much-needed scientific knowledge and advocacy skills and over the years has developed a great collaborative spirit across borders and regions, it is a unique global family and I am proud to be a part of it.”

Kris has been battling chronic myeloid leukaemia (CML) for over five years and is winning the fight having been declared in remission from the disease. In recent weeks the 38-year-old father of one has also spoken at the Leukaemia and Lymphoma Research annual conference and counts Wyre Forest MP Mark Garnier and Deputy Chair of the Labour Party Tom Watson MP amongst his supporters.

“In the UK there are only 650 of us every year diagnosed with chronic myeloid leukaemia so it is a rarer form of cancer. It’s hard to get our voice heard but this disease is a cancer that is being treated more and more successfully with tablets. The potential impact of this on other forms of cancers is great so it’s important we network, fundraise and support the life-saving progress and innovation that is being made every day.”

Mr Griffin, who is also director of marketing and communications at Ormiston Forge Academy in Cradley Heath also has a blog where people can stay up-to-date with his campaign efforts: www.accesscmldrugs.wordpress.com

Kris Griffin speaking at CML Horizons 2013

CML Horizons 2013 – Day 1 report

After an omelette breakfast and a catch up with some friends we settled down to the first session of the day chaired by the irrepressible Tony Gavin from Leukaemia Care. This European group meeting on Health Technology Assessments (HTA) and cross border healthcare was a healthy start to the day, unlike my breakfast. HTAs and cross border healthcare is a hot topic and lacks clarity and vision, simply bringing the threads together is the challenge, perhaps digital is the answer and both speakers Martin Visnansky and David Ryner alluded to this.

The always impressive Sarunas Narbutas from Lithuania expanded on the issues of cross border healthcare by presenting the key issues and explaining the complex legal technicalities. The structural differences of healthcare systems in each EU country means that there is much work to do before legal implementation on 25th October 2013. After this date we must prepare ourselves for an influx of healthcare visitors to the UK but conversely this opens an opportunity for us to access dasatinib (a drug not readily available in the UK) from another country.

As the main conference got underway we were treated to a video message from the legendary Spanish tenor Jose Carreras, who is a leukaemia survivor. Giora Sharf then provided updates on the inspirational work of the CML Advocates Network.

After a very broad overview from the World Heath Organisation on generic and counterfeit drugs, Jan Geissler took the bull by the horns and presented hard data collated from 55 countries on the availability and occurrence of generic drugs. My concern still remains, are we debating the right issue here? Surely the proliference of generic drugs CAN be a good thing, the pharmaceuticals who developed the drugs would obviously disagree. We should be asking how we ensure standards and quality control the generic drugs. If this leads us to first-class drugs at reduced prices then I don’t have a problem, making sure this happens is the challenge.

The anzovip case study in Serbia presented by Jelena Cugurovic simply highlights the issue of regulation, transparency and quality control. How can a drug be made available to patients when it is not supported by documentation or trial data. This is an opportunity to put pressure on the pharmaceutical industry and drive prices down using the threat of quality generics. It’s clear that this issue needs some very strong guidance and legislation, the organisation in the best position to provide this , the WHO, seem incapable or unwilling. Lives are being put at risk…and I’m tired of writing that.

The final session of the day gave us an update on CML drugs and clinical developments by 3 well respected medical Doctors from Israel, Italy and Australia. We were presented with a number of areas that included the debunking of myths, the efficiency of combination therapy (with Inferferon) and the latest drug efficiency. Doctor Tim Hughes from Australia was particularly impressive with key studies showing how we can predict response rates in the first 3 months of treatment (TIDAL 1 study). The second study (TIDEL 2) showed the importance of switching treatment (from imatinib to nilotinib) after a set period of time if an optimum response isn’t achieved. The survival rate in TIDAL 2 over 4 years is 97%. Time and time again we are seeing that imatinib is a drug that is being superseded by vastly superior 2nd generation drugs. Imatinib has done a wonderful job for us in the past but ultimately we wouldn’t be using it if cost wasn’t an issue.

The day is over; dinner, beer and bed to come. The day has been intense as expected, lots to think about, take home and action. I’m looking forward to tomorrow but I’m going to have to bring my ‘A’ game when I present to over 100 delegates tomorrow. The pressure is on… Have a good evening and thanks for reading.

Kris
PS. I’ll tag the photos when I get home.

TKI survey on behalf of CML Advocates Network

A request from the CML Advocates Network who I fully endorse and would ask you complete the survey. Many thanks, Kris

—-

Imatinib, dasatinib and nilotinib are a tyrosine kinase inhibitors (TKIs) that have been established as effective therapies in chronic myeloid leukemia. While imatinib (marketed as Gleevec/Glivec), and in some markets nilotinib (marketed as Tasigna) as well as Dasatinib (marketed as Sprycel), have been available for some years, non-original copy versions of these drugs have also been provided to CML patients in a number of countries. With the patent ending on Glivec/Gleevec from 2013 in some markets, the use of generic TKIs in CML is becoming more and more widespread.

With the CML Horizons 2013 patient conference putting a spotlight on the situation of generics and copies in CML therapy, this survey intends to understand the availability of original TKIs and other non-original TKIs for the treatment in CML in countries all across the globe. It also aims to understand how CML patient groups are addressing the issue of quality assurance when generics and copies become available.

This survey is run by the CML Advocates Network without any commercial interest and without support from any pharmaceutical company. The results of this survey will be presented to the community at the CML Horizons 2013 meeting in May.

It should take 10-15 minutes of your time to complete the 10 questions. We would like to cover as many countries as possible – your contribution is greatly appreciated and will help us a lot!

Please respond to the survey here: http://www.cmladvocates.net/tkisurvey
(and please also respond if NO generics/copies are available in your country, which is equally important to know)

Can you please respond latest by 12 April 2013?

Many thanks and best wishes,

Jan (on behalf of the CML Advocates Network)