This is in reaction to the story, “Yolanda hero Dario Raagas fights for his life vs giant drug firm Novartis” (News, 4/12/14). To remove any confusion and anguish the article might have caused patients and caregivers under Touched By Max Philippines (TBM), allow me to share my thoughts about the treatment.
TBM is currently working out possible arrangements with Novartis and some government agencies so Raagas can avail himself of his new treatment. Our international partner, The Max Foundation, is also working closely with him. (It appears that he might have been misquoted or misunderstood. Raagas has strongly denied any knowledge of the petition filed by a certain Joy Margate Lee [at change.org] on his behalf.)
TBM is a patient support group with more than 2,500 members, all suffering from a rare blood cancer called chronic myeloid leukemia (CML) and gastrointestinal stromal tumor. Through various activities (e.g., blood-letting, outreach, bonding, laughter yogas, scientific medical fora) we at TBM make our members forget the disease, albeit momentarily. And we would like to believe that TBM, founded in 2003, is making the lives of these patients as normal as possible. If you know people with cancer, they will tell you that from the day they were diagnosed, they felt like having been given the death sentence and are just waiting for its execution. My 15-year-old son is among them. He has been battling leukemia for eight years.
Raagas was never a “guinea pig” in a clinical trial. The drug that has been saving lives around the world for 14 years now, Gleevec (generic name imatinib), was approved by the US Food and Drug Administration in 2001 and by the Philippine Bureau of Food and Drugs in 2002 before it was made available locally under Gleevec International Patient Assistance Program (Gipap). It can be bought from leading drug stores, but our members are getting the drug for free (or partially-free) from Novartis through the Gipap and Novartis Oncology Access (NOA) program. This miracle drug has been featured in numerous medical journals. Time Magazine in its May 2001 cover story called Gleevec “revolutionary.”
Instead of the previous first-line treatment of bone marrow transplant which we cannot afford (P4 million to 8 million here in the Philippines), Gleevec, as with other tyrosine kinase inhibitor drugs, is long-considered as the gold-standard for CML care worldwide.
We appeal to media to work with us to ease the fear of cancer patients under Gipap and NOA. We need all the help we can get to increase awareness of the needs of cancer patients in the Philippines. From my own experience, I can tell you: Suffering through the worst, unimaginable nightmare, and with very little help from our government, cancer patients in our country and their parents and their loved ones feel all alone. But I can attest that with this treatment, it is possible to live a productive life.
—ROD PADUA,
president,
Touched By Max Philippines,
rod_padua@yahoo.com