Through the grant of Novartis, the first CML lay forum in Davao City was held on June 30th . It is located in Mindanao, the second largest island in the country. It was a little bit a challenge to organize the activity. The GIPAP patients I know live quite far from the area. Fortunately, the physicians were very supportive and helped me with the logistics. From sending out the invitations, looking for caterer, venue and equipments, which could have otherwise been extremely difficult. The patients along with their caregivers came to listen and learn more about their disease. Although internet is available in the city, many patients still do not have access to relevant information pertaining their disease. The lecture was made very simple and easy to undertand by the guest speaker. Prior to the discussion, I distributed a piece of paper where they can write their question. Initially, they were shy but it took only one patient to stand up and questions started pouring in.
A representative from Novartis also came and talked about NOA. Several patients raised their concerns on the application procedure and result of the financial assessment. The Novartis staff handled it well and emphasized the issue of sustainability.
The testimonial of one patient and the video presentation of patients stories have touched the hearts of the participants. After hearing so many patients stories in the past, sometimes I get obliviuos to it. However, newly diagnosed patients or even those who have been diagnosed many years ago and yet do not have the opportunity to attend a patient meeting will always appreaciate the stories of the journey of other CMLers. I think this is an important component of the program that we cannot do without.
One of the highlights of this activity is the formation of another patient group which will represent the entire Mindanao region. They were inspired to create their own after I did my presentation and the showed the TBM activities. They felt the strong need to have a continuing patient activities in their region. They have identified their core leaders and one of the hematologists agreed to become their adviser.
I really wish that this new group will grow and become good advocates for the entire CML community in this part of the country.