Haemophilia treatment for all and the role of tolerance, difference and education

The World Federation of Hemophilia (WFH) has established a long-standing commitment to the advancement of those living with haemophilia and since its inception; much has been achieved to improve the lives of those living with a bleeding disorder. In the last 2 years, we have seen an incredible increase in multiyear donations of treatment products to the WFH Humanitarian Aid Program. Between when the programme was created in 1996 and before this expansion in 2011, the yearly average volume of international units (IU) donated was 10.5 million. Then, between 2012 and 2014, it went up to 25.5 million IUs, with another increase to over 116 million IUs over the past year. This will ensure that more people with bleeding disorders will have continued access to treatment for emergencies, acute bleeds, corrective surgeries and importantly prophylaxis for young children. The strength of an organization is one that can build on the foundation. The goal, therefore, must be to keep pushing to eliminate the challenges and barriers for those with inherited bleeding disorders. It is in this regard that the WFH has added an additional focus; this year, I announced during my plenary at the WFH 2016 World Congress in Orlando that the WFH has chosen to examine another side of the equation: Discrimination. As a community, I believe too many continue to face frustration, discrimination and intolerance. We need more inclusion, tolerance and continuous education. We must eliminate the stigma associated with having a bleeding disorder and anything less should not be accepted. For individuals and their families, it can feel like society is at odds with you. Sometimes, it is one's own lack of awareness of how to separate the facts and myths about the bleeding disorder that creates havoc. These challenges are not only simply felt in developing countries but also in already developed cities and communities around the world. It is not only the under-privileged in emerging countries that face hurdles, but also countries that have wealth we will find patients and their families who have to pay full-price for clotting factors. They spend their entire life finding the resources to pay for treatment. I have had the opportunity to meet many people with a bleeding disorder and their families. I have heard first hand that in some countries a person with a disability cannot get a bank loan or if they do, they must pay extraordinarily high additional insurance premiums. Faced with this insurmountable hurdle, some opt not to disclose their disorder and chose to take the risk for lack of other viable options, not realizing the harsh consequences if something happens to them and their omission is discovered by the bank after the fact. The majority in the bleeding disorder community have a story to share and can relate to the challenges that families and primary caregivers deal with. It is not just financial hardship there are likewise the social ramifications. In a significant number of countries, I have spoken with members of the community where it remains that once a child is diagnosed with a blood disease the father leaves the household in shame, abandoning child and mother. To compound the problem, extended family members also desert the mom and infant. There are cases of uninformed teachers who incorrectly believe bleeding disorders are to be feared and if they hear the mention of the disorder uttered, will not allow the child into their classroom or into their school. Many even believe it is a communicable disease. Or if the child is permitted to go to school, others see bruises and assume the worst, and jump to incorrect conclusions to what must be happening at home. It is hard to reach your potential if you do not attend school. Children cannot be punished because someone else does not understand the disorder. It is our responsibility to prevent this. There are parents who do not want their child to play with children who have the disorder for fear their child may too become ‘afflicted’. So these children do not get invited to a friend's house to play, they sometimes do not receive an invitation to celebrate a birthday party; instead they ‘learn’ that they are not equal to their peers. Already having to deal with their bleeding disorder, many children find themselves confronting anxiety, depression and isolation. Unfortunately, these barriers do not disappear with age. In numerous countries, I have learned that it is not uncommon for a haemophilia patient to be denied services out of fear on the part of the care provider. Be it from a paramedic who will not help an injured person or a dentist who will not perform an extraction or a physiotherapist who will not provide rehabilitation. There are many paramedics, dentists and physiotherapists, who are committed to their patients and dedicated to changing perceptions. They should be commended but for each professional that does, there is someone who would not or does not have the training to do so. Tragically, in some countries, there are health care professionals who do not know or understand the disease and in turn make the wrong health care decisions. Those that are unaware cannot make informed choices. These hurdles are mentioned because it needs to be kept in mind that patients and their caregivers know what it is like to live with the disorder, to manage the day-to-day. Health care providers understand the science behind treating bleeding disorders. Our aim must be to do a better job bringing the different sides together so that ‘one’ becomes more team-like. The patient's voice is a powerful and valuable one. The health care team plays a vital role. The WFH, National Member Organizations (NMO), regulators and industry can continue to champion the cause, to connect and to bring together. To empower all sides and overcome barriers, we can and we must use existing tools that will allow this to happen. Individuals should not have to file discrimination complaints in order for action to be taken, or for a basic human right to be upheld, but when necessary to change the dialogue, a first step is to use the legislation that has already been enacted in the way of International Treaties and conventions. As it stands, many are not aware these treaties can be used to help. Where possible, our community should work with existing legislation, regulations or international conventions that are designed to protect the very individuals and groups that need it. A few such examples include: The Universal Declaration of Human Rights 1’ Article 1 adopted on Dec. 10 1948, states that ‘All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood’. More specifically, the United Nations Convention, Article 19, Rights of Persons with Disabilities 2, adopted in December 13, 2006, clearly stipulates that ‘all persons with disabilities have a right to live and participate in their community’. Significant to this convention is the following wording: ‘To take all appropriate measures including legislation to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities’. In addition to principles of nondiscrimination, full and effective participation and inclusion in the society, respect for difference, there has been specific mention of children: ‘In all actions concerning children with disabilities, the best interest of the child will be primary consideration’, and goes on to state that ‘parties shall ensure that children with disabilities are not excluded from free and compulsory primary education or from secondary education on the bases of disability’. To date, 193 countries have ratified this convention. The question remains how many do comply? It is also noteworthy to highlight the United Nations Educational, Scientific, and Cultural Organization (UNESCO) Declaration of Principles on Tolerance 3 Articles 4.1 and 4.3 with respect to the power of education in increasing tolerance. Under Article 4.1, it states ‘Education is the most effective means of preventing intolerance. The first step in tolerance education is to teach people what their shared rights and freedoms are, so that they may be respected, and to promote the will to protect those of others’. Article 4.3 states: ‘Education for tolerance should aim at countering influences that lead to fear and exclusion of others, and should help young people to develop capacities for independent judgement, critical thinking and ethical reasoning’. When the WFH Board of Directors met in October 2015, February 2016 and July 2016, we committed to working within the framework of ‘WFH Transform 2016’. This will mean an increase in the number of WFH Regional Managers, with some of them locally in the regions. They will now be in better position to investigate situations, suggest solutions and help our community. In addition, the WFH committed to becoming a member of Rare Diseases International 4 (RDI) whose mission is to create a global alliance to lobby and advocate for patients and their families dealing with a rare disease. Its prime objective is to convince United Nations entities to make rare disease an international health priority. Famous American author, political activist, and lecturer, and also the first deaf blind person to earn a Bachelor of Arts degree, Helen Keller wrote in 1903 in her book titled Optimism 5: ‘The highest result of education is tolerance’. If we educate those with and without bleeding disorders, we can move forward and ultimately eliminate frustration, discrimination and intolerance. Yes, it will take time, but if we do not take our proverbial first step we will never walk at all. This is a huge task for each and every one of us. It is a bold decision. Following diagnosis and access to care, this is the other side of the equation. As a global community, there are things we can do as individuals. For those who are not involved in providing treatment products, this can be your way of giving back. We have seen the virtue of investing in analysis; we hope to now see an increased number of corporate partners commit to making this a priority by engaging in education. Educate your neighbours, your family and friends. Let us help families around the world to allow their children to thrive – to make friends, to celebrate, to contribute to society and as much as possible to help them live as normal a life as possible. Let us all use our knowledge to educate so that others can see another side of the equation. For when we can educate people to see that being a patient of a rare bleeding disorder does not define who that individual is and instead see them as an active member of society who enriches their community, we will show that it is indeed true that the highest result of education is tolerance. Saint-Exupery, the famous author of The Little Prince, wrote to a friend in 1942: ‘Si je diffère de toi, loin de te lèser, je t'augmente’. Translated from French, this means: ‘far from hurting you, being different enriches you’. Almost 75 years later, I believe that this just as relevant today. Tolerance will help us all. The authors stated that they had no interests which might be perceived as posing a conflict or bias.

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