I never thought that I would be sitting at the same table with Senators from my country while voting for a law that will potentially dramatically change the lives of cancer patients in Chile. I guess I could say that this is one of the many blessings I have received after being diagnosed, more than 24 years ago, with cancer, and especially with GIST.
ADVOCACY IN ACTION!
On January 10th, a group of cancer patients, together with the National Cancer Forum and the Chilean Association of Cancer Groups (ACHAGO, of which I am president), organized a Seminar called: “National Cancer Law – A Critical Analysis and Proposals within the Government´s Presentation”. The goal of the meeting was to gather representatives of the different health sectors in Chile and hear their ideas about the project of law presented by our President.
In the first part of the seminar, Senator Carolina Goic welcomed the audience, highlighting the importance of this meeting, one in which we were witnesses to a huge step our country is taking after more than five years of advocacy work: To consider cancer a “national priority”, which will mean a qualitative change of how cancer is dealt with in Chile.
In the same tone and spirit, Dr. Paula Daza, Subsecretary of Health, and Dr. Jorge Jiménez de la Jara addressed the audience. Dr. Daza highlighted the importance of having an equitable, robust and integral National Cancer Plan, that will ensure access to health to everybody, independent from their economic and migratory situation.
After these presentations, it was my turn to speak as president of the ACHAGO. Speaking in public is one of the things that most stresses me in life, but it seems that life has had a mission to make me go beyond my comfort zone and it challenges me again and again to overcome my fears and insecurities.
After I was initially asked to speak, I spent many sleepless nights not knowing what I would say, and finally, I had one thing clear: I would present no technicalities, no numbers, no statistics. I wanted to talk from my heart and my feelings, trying to be the voice of many cancer patients who, as myself, desperately needed a law that would protect our rights.
In the second part of the program, Mr. Sebastián Pavlovic (the former Superintendent of Health) made a comparison between the project of law presented by the civil society, and the one presented by the government. This was followed by a workshop in which the audience was divided randomly in three groups. Each group brainstormed ideas. Everybody had the chance to analyze and comment what each one of us thought of the project of law presented by the government. We worked hard to summarize all of our comments and on Tuesday, January 15th, I was invited to a session of the Senate Health Commission at our Congress in Valparaiso, where I was chosen to present a summary of the work done by the three groups in the seminar.
It was an amazing experience. As I said at the beginning of this article, it is one of the blessings I have received in my life: to be a part of the process of a law that in the future will change the lives of cancer patients. It was just amazing and overwhelming!
Sitting at the same table with senators when they said: “I approve” and hearing senator Carolina Goic, who was leading the session, ring a bell and say: “This commission approves the legislation of the law.” It was BREATHTAKING!
Carolina and l looked at each other and I could feel and see that we both had “watery eyes” – HUGE APPLAUSE!
“When I was asked to speak today, two words came to my mind: In the first place: Gratitude.
Gratitude – for the opportunity of being here representing many people that like me, have cancer.
Gratitude – for being part of a very special day in which we are a part of a huge challenge: we are giving the first steps that will take us to having in Chile, a National Cancer Law, that will protect the rights of all cancer patients, with no distinctions.
Gratitude – for all those, who for many years have been working, without lowering their arms and losing enthusiasm, even through the many difficulties found on the road.
Gratitude – for all cancer patients, their families and friends, who all along Chile forgot their personal needs and didn’t hesitate about being a part of the National Cancer Law Movement, and dedicated many hours to organize the March in December 2018, demonstrating the huge strength that can be accomplished when we can count on unwavering commitment to reach a common objective.
Gratitude – to our President for signing the National Cancer Plan and the National Cancer Law, enabling this project to start its parliamentary process looking forward for it to become a reality.
The second word was Hope.
Hope – that the National Cancer Plan and the National Cancer Law will address the real needs and hopes of cancer patients.
Hope – that the parliamentary process won´t take long, that the congressmen understand that we cancer patients do not have much time to wait.
Hope – that all cancers will be considered, with no distinctions among them.
Hope – that the law will consider creative financing strategies, so that all cancer patients will have access to the treatments we need to live, to see our families grow, and to continue working and making a positive contribution to our society.
Hope – that the law will consider tributary incentives, which will encourage donations to develop projects to benefit cancer patients.
Hope – that the assignment of resources to develop the National Cancer Law will be quick, transparent, and focused on the patients’ needs.
Hope – that cancer patients won’t be the object of employment discrimination.
Hope – that the law will favor investigation, patient registries, tumor banks, and oncology fellowships, making it possible to have enough oncologists to cover our country’s needs.
Hope – that once a patient is diagnosed, they will receive the necessary support to navigate the Health System, especially regarding the complicated administrative paperwork we need to go through.
Hope – that representatives of all sectors related to cancer will be considered, and that we will all be able to sit at the same table to talk, discuss, make decisions together, and leaving aside individual benefits, be able to reach patient-centered agreements.
With huge Gratitude and Hope, I welcome each one of you and I invite you to be part of this big challenge: having in Chile
a National Cancer Law.”
(Translated from Spanish)