Apply for an EHA 2019 Fellowship until 9th April

EHA 19The European Hematology Association (EHA) has already opened the Fellowship Application and Registration process by providing 60 free congress registrations for leaders of hematology patient organisations. This year, EHA has increased their fellowship and is offering an additional 10 fellowships, to provide patient advocates the opportunity to attend the 24th annual EHA congress which is taking place in Amsterdam from June 13-16, 2019.

 

If you are a representative of a CML patient organisation interested in attending this Congress, you have the possibility to apply for an EHA Fellowship and attend the 24th EHA Congress HERE.

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UPDATE: Falsified Iclusig traded globally, discovered in Malaysia (new), Turkey, Switzerland, Argentina and Internet sales with UK/Ireland product batch numbers PR072875 (45mg) and 25A19E09 (15mg)

The World Health Organisation (WHO) has issued a medical product alert today that falsified versions of ICLUSIG (Ponatinib) have been discovered in Turkey, Argentina and Switzerland, and in Internet sales. The falsified (counterfeit) medicines do not contain any of the CML drug ponatinib, but only low quantities of paracetamol. These falsified medicines are not going to have any effect against CML. The falsified English language packs contain the lot/batch numbers

  • PR072875 (UK/Ireland pack, English language, 60 tablets á 45mg, Expiry date 12/2019) and
  • 25A19E09 (UK/Ireland pack, English language, 30 tablets á 15mg, Expiry date 10/2020).

In addition, on 20 February 2019, we were notified of a new falsified Iclusig pack:

  • PR0834170 (German pack, German language, 30 tablets á 45 mg, Expiry date 06/2020).

The WHO page which is available in English, French, Russian and Spanish provides photos of the packages and pill bottles so patients can find the batch numbers. The WHO page has not yet been updated on the third falsified pack, which is expected those days.

To identify falsified product batches both the batch number and packaging (language, country of the pack) are important.

No UK/Ireland ORIGINAL product has been produced by the manufacturers Incyte/Takeda that carries those batch numbers in languages from those countries and with these languages. Products with the above batch numbers, country and language are most likely falsified.

In case of PR072875, the counterfeiters used this genuine lot number originally issued on a German ICLUSIG box and created a falsified UK packaging. In case of 25A19E09 and PR0834170, no original products were manufactured wih those batch numbers.

And so far, the manufacturer and medicines authorities are NOT aware of additional FALSIFIED ponatinib products bearing different batch numbers, so patients taking Ponatinib with other batch numbers than those listed above should NOT yet be concerned.

WHO alert No. 2

WHO alert No .3 (22.02.2019)

Incyte Press Release

Patients, physicians and distributors should make sure to obtain CML medication from validated and reliable sources that are able to demonstrate the authenticity of origin of the products.

In case of any concern, check the batch number against the two identified falsifications, and contact Incyte Medical Information in case of persisting suspicion at or +800 00027423.

Please let the CML Advocates Network know via if you come across the falsified product with these batch numbers, so we know whether the falsified medicines have been shipped to any other regions or countries. National CML patient groups are also encouraged to notify their local health authorities and leading physicians.

 

Free EHA congress registrations for CML patient organisations representatives: Deadline 27 February 2018!

ehacongress1

 

Again this year, the European Hematology Association (EHA) is providing around 50 free congress registrations for leaders of hematology patient organisations, to give patient advocates the opportunity to attend the 23rd annual EHA congress which is taking place in Stockholm from June 14-17, 2018.

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Sincere condolences to Kazakhstan CML community

 

 

Our hearts go out to Kazakhstan and members of the Association of Patients with Hemoblastoses and especially to the family of Lyubov Mizinova who has passed away this month.

We have lost a dear friend and valued patient advocate.

Lyubov Mizinova was the President of the long-running organisation in Kazakhstan and our member for many years.

She was a commendable CML advocate who was active in both Kazakhstan and part of the CML Advocates Network many years.

We all are very proud of every single CML patient advocate who dedicates time, resources, skills and love to the CML community worldwide.

We will all miss Lyubov very much and her loss will be felt by the CML community.

Our thoughts and prayers are with Mrs Mizinova's family at this time.

picture Ljubov MizinovaMizinova2 

 
 
 
 
 
 

Very engaged patient advocacy activities at the European Hematology Association’s Annual Congress 2017 in Madrid

EHA MadridThe European Hematology Association’s (EHA) Annual Congress was held in Madrid, Spain on 22-25 June 2017. More than 10.000 hematology professionals from around the world gathered and discussed the latest developments in hematology research and clinical practice. For the last 7 years, EHA together with its EHA Patient Organisations Workgroup, have conducted Patient Advocacy Sessions within the Scientific Programme of the EHA Congress. With its Patient Advocacy Track, EHA Fellowship Programme, Capacity Building Programme for Patient Advocates, the EHA is one of the leading medical societies in terms of patient involvement in its congress. 

EHA presentations available in this article.

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ASCO: US perspective of TKI therapy discontinuation in CML patients

ASCO17 tki discontinuation posterThe 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago and our cofounder Jan Geissler has collected all the highlights of this important meeting for chronic myeloid leukemia community.

In the recent past, not only hematologists but also patient groups have expressed their concern that "stopping CML therapy out in the field" may lead to bad practice by doctors not following expert recommendations, and have suggested stopping TKI therapy should only be done in clinical trials.

Of course, especially after NCCN has updated its CML guideline and has given guidance on stopping treatment despite the prematurity of data, we could expect that this would be largely ignored out in the field.

So here is Jan Geissler's shock poster at #ASCO17: The high arts of CML therapy and the sad reality - we need to be grateful for investigators spelling it out so clearly. He is shocked, as his gut feeling about bad practice is now supported by data.

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