TODAY is our Big Day!!!!

The Touched by Max, Inc. (TBM) was one of the many patient groups around the world who joined the 2016 Maximize Life Campaign which we also dubbed as Celebration of Life. On October 16th, around 200 patients/caregivers from different parts of the country braved the public storm signal warnings raised by the weather bureau. Based on Wikipedia, around 19 tropical cyclones or storms enter the Philippine Area of Responsibility in a typical year and of these usually 6 to 9 make landfall. It is not surprising that most of our patient gatherings are threatened with bad weather. However, all these have not stopped us from celebrating for the last 13 years. We have every reasons to celebrate…extended lease on life, friends and families, job and many more to mention. But amidst our celebration, there were feelings of anxiousness and uncertainties for the majority of CML and GIST patients under the new program of Novartis called OATH. Under the new program, the patients have to share a minimum of one contribution on the treatment cost. The co-pay could be more depending on the result of the financial evaluation. Majority of the patients do not have health insurance and only rely for support from the Philippine Charity Sweepstakes Office (PCSO). This government institution provides medical subsidy to all the patients. More than two months ago, the support for Nilotinib and Imatinib was suspended. It has been a very challenging time to our patients. They  have not been able to take their
medicines and the treatment for newly-diagnosed patients were likewise
deferred. You could just imagine the messages that I have been getting from patients who were worried of the health risks of stopping treatment.
 
The patients resorted to calling the office of the newly-elected President and write a petition letter to address the issue. We are lucky that one of the TBM board members knows important personalities from the government.  A dinner meeting was arranged with the General Manager of PCSO and he together with TBM President presented the challenges faced by the members of the group. Through the collaborative efforts of TBM and Novartis, the suspension was officially lifted today!!!!!!!!!!!!!!
 
Join me to celebrate this successful turn out of event for the welfare of the CML/GIST patients. It is a baby step to achieving a more sustainable program for the all the patients.
 

 

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