In 1942, The Little Prince author Antoine de Saint Exupery wrote to a friend: “Far from hurting you, being different enriches you.”
Nearly 75 years later, it’s still important for everyone in the bleeding disorders community to reflect on that truism, said Alain Weill, WFH president, during the Monday morning plenary “Treatment for All: Another Side of the Equation.” While much has been accomplished in bleeding disorders awareness and treatment, Weill said much remains to be done.
Recent accomplishments include the expansion of the WFH Humanitarian Aid Program. Between 1996, when the WFH started the program, and 2011, the yearly average volume of international units (IUs) of clotting factor donated to developing countries was 10.5 million. Between 2012 and 2014, factor donations increased to 25.5 million IUs per year, and they skyrocketed to 116 IUs during the last 12 months.
Along with providing more treatment options, Weill said that another objective is to use the WFH Humanitarian Aid Program as leverage to demonstrate to government officials how proper treatment enables people with hemophilia to live a normal life and actively participate in the social and economic activities of their country.
This is crucial because too many people in the global hemophilia community still face frustration, discrimination and intolerance. “This inequity drives my passion for continued advocacy,” Weill said. “We must eliminate the stigma associated with having a bleeding disorder and we should not accept anything else.”
Even in developed countries, it can feel like society is at odds with people with bleeding disorders and their families, Weill said. Factor costs can be prohibitive. Employment opportunities can be limited. In some countries, a person with a disability can’t get a bank loan. And in numerous countries, it’s not unusual for hemophilia patients to be denied services from fearful care providers.
Children with bleeding disorders continue to face discrimination, Weill said. In a significant amount of countries, when a child is diagnosed with a bleeding disorder, many families experience devastating hardships. In some cases, when a child with hemophilia reaches school age, some misguided teachers believe bleeding disorders are communicable and ban the child from their classroom. “Already having to deal with their clotting deficiency, many children find themselves confronted with anxiety, depression and isolation,” said Weill.
But there are steps members of the bleeding disorders community can take to fight this discrimination and intolerance. One way is to educate government and other leaders of existing legislation and regulations protecting people with disabilities. These include the Universal Declaration of Human Rights Article 1, adopted in 1948, and the United Nations Convention’s Rights of Persons with Disabilities, which was approved in 2006.
In addition, the WHF has recently committed to the WFH Transform 2016 action plan, which increases the number of regional program managers around the world to assess regional situations and offer solutions.
The WFH will also become a member of Rare Diseases International, which has the prime objective of convincing the United Nations to make rare diseases an international health priority.
Weill urged each member of the bleeding disorders community to also think locally when it comes to education. “As you go through the congress experience, gather the tools that you can take back to your own communities that can help to educate and make a difference,” he said.
“For when we 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.”