Today, May 8 is World Thalassemia Day and I would like to wish everyone a very good day and a very good life.
Today we celebrate, but tomorrow what happens? Do we go back to our lives with nothing changed or do we go back with a determination to make the necessary changes?
"The right for quality health care for every patient with thalassemia, major and beyond,"
We see this slogan often these days and it is a wonderful idea, but it has to become a reality and not just a pleasant saying, and those entrusted to make it so, must understand that it has to be more than meetings and parties. It has to be the day to day hard work that is needed if this idea is to ever become reality.
We can have nice slogans that support a patient's right to care, but why at the same time are some of those using this slogan not also defending the rights of patients to full access to all information about their disorder and its current and potential treatments? Why are patients being denied access to scientific programs at international thalassemia conferences? Surely, we are not expected to treat patients and families with a patronizing attitude that basically says "we will always treat you like a child. We will never acknowledge that you have just as much, if not more right to information about thalassemia as any doctor or researcher." How can true progress move efficiently forward when the very reason the conferences exist, the patients, are denied access to information? How can anyone claiming to represent thalassemics be so arrogant as to even consider this policy, let alone make it THE policy?
I feel we have a long way to go. We have a nice catchy slogan but what is being done to help patients right now? Is there an international directory of thal centers and thal doctors available to the public, so that the most basic task of referrals can be accomplished? No. Is there an international organization delivering needed chelators and supplies like good quality thumbtack needles and blood filters to patients who cannot afford them? No. Is counseling help available to parents and patients to help them deal with the many obstacles that appear in their paths? No. The list goes on. As one man with very little funding, I have accomplished many of these tasks on an individual scale. It is possible and an international organization should be able to accomplish far more than one person.
In the U.S. we have a tremendous asset in the Cooley's Anemia Foundation. Their only limits come from the limits of funding. This model should be used internationally and duplicated everywhere it is needed. It is not too much to ask that parents and patients everywhere have access to an organization that can at the very least, direct them to the doctors and hospitals that can help them. When a parent from Calcutta or Kabul or Ho Chi Minh City tells us they don't know where to go to help their infant with thalassemia, we should be able to say more than we don't know what to tell you. When a patient asks where to go to find needles, we should be able to answer that patient, and perhaps help the patient acquire them. It is not too much to ask that we change things today.
On the international scale will we dedicate ourselves to these goals that are needed here today, or will we concentrate on grand goals while ignoring the individuals? Will we say the scope is so large that we help very few in the end or will we make real efforts to make sure we drop our parochial views and see the world that really exists? Will we acknowledge the immense scope of the thalassemia problem in Asia and attack it, or continue to mostly ignore the needs of the very poor whose thal children still die at very young ages?
How do we proceed? On what will we base our decisions? Is the international effort only for a chosen few or is to be for every single thal on earth, as reads the slogan? At present, it's no more than a slogan. Health care should be a basic human right for all people and not only for those who have been smiled upon by life. Are we all willing to do the hard work or are we more interested in "what's in it for me?" and that includes those in the medical field? Is about yourself or is it about a larger goal? How will you proceed?