Stopping treatment: Presentation about the state of play in stopping in the CML satellite symposium at EHA
Francois-Xavier Mahon was presenting about the current state of play in stopping CML treatment at the EHA Satellite Symposium on CML, hosted by Novartis. Here is a brief summary of Jan attending the session just now.
In terms of what we know about stopping Imatinib, Francois-Xavier Mahon presented the data of the first STIM (STop IMatinib) in France, where about 38% were able to successfully stop treatment without having detectable disease with a median follow-up of 65 months. Similar rates were observed in other STIM studies like STIM2 (50% still undetectable at 24 months), TWISTER (47% still undetectable at 24 months), A-STIM (61% without loss of MMR at 36 months), KID (59% without loss of MMR at 24 months), STOP2G-TKI (57% without loss of MMR at 24 months) and DADI (Dasatinib, 48% without PCR rise above 0,0069%), ENESTop (58% without loss of MMR) and EUROSKI (51% without molecular relapse at 24 months). So depending on therapy re-initiation criteria, across studies there seems to be roughly a 50:50 chance that stopping treatment in deep molecular response is successful.
Welcome, MOHA (Hungary) - now 109 patient organisations from 82 countries in the CML Advocates Network
We hereby proudly welcome a new member organisation in the CML Advocates Network: MOHA based in Budapest / Hungary is our second Hungarian patient organization. The CML Advocates Network now counts a total of 109 member organisations in 82 countries worldwide! See the list of CML groups in the Network on our world map.
Please sign the petition to reconsider India's government decision of levying customs duty on donated CML drug
Please sign this petition run by the Indian patient organisation "Friends of Max", calling on the Indian government to reconsider their government decision of raising significant import taxes on free Glivec donated to Indian CML patients through a patient assistance programme. For the past 13 years, Glivec was provided for free as a donation to CML patients, but now the Indian government may raise import taxes on a hypothetical financial value of the donated Glivec. This threatens the continuation of the free donation of the drug to thousands of CML patients in India. Please sign the petition at Change.com.
Welcome, "MIELOPRO" (Romania) and CML-Armenia (Armenia) - now 108 patient organisations from 82 countries in the CML Advocates Network
We hereby proudly welcome two new member organisations in the CML Advocates Network: 1. "MIELOPRO" - Asociatia Pacientilor cu Neoplazii Mieloproliferative based in Romania and 2. CML-Armenia based in Armenia. The CML Advocates Network now counts a total of 108 member organisations in 82 countries worldwide! See the list of CML groups in the Network on our world map.
Patient-friendly summary of the ELN CML Treatment Recommendations now also in Croatian language - and 19 other languages
It is now available in 20 languages: English, Arabic, Albanian, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Croatian, Danish, Dutch, French, Georgian, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Croatian, a big thank you to Dražen Vincek (president of CML Club in Croatian Leukaemia and Lymphoma Society (HULL)) and his colleagues for translating, reviewing and approving this new version of the lay-friendly summary!
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
Free EHA congress registrations for representatives of hematology patient organizations: Deadline 3 May 2016!
This year's EHA Congress will be held 9-12 June 2016 in Copenhagen, DK. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program.
As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Copenhagen. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.
Deadline for free registrations is 3 May 2016! There will be no extension of the deadline and no late registrations. EHA, MDS Alliance and CML Advocates Network will do their best to allocate the 50 free registrations fairly amongst organisations and advocates. Please note that registrations are to be confirmed by the EHA office -- the MDS Alliance and CML Advocates Network just collect statements of interest on behalf of the patient community. We will let applicants know as soon as possible.