Hemophilia is a health condition that presents 20.000 new cases annually and prevents blood from clotting normally.
The lack of access to comprehensive hemophilia care brings with it a series of hidden costs that affect the productivity and quality of life of those who live with the condition.
On World Hemophilia Day, the World Federation and the Extraordinary Mothers initiative reinforce the importance of working for access to comprehensive care for all, through partnerships and participation in public policies.
What is Hemophilia?
La hemophilia It is a genetic disorder that makes it difficult for blood to clot and can be inherited or develop early in life due to an acquired mutation. Based on data from 120 countries (26 of them in the Americas), it is estimated that there are more than 800 a thousand people with hemophilia; however, only about 241 have been fully identified. Regarding the region, in 2020, 55.287 people with hemophilia were identified, but it is estimated that the total exceeds 103 thousand.
People with this health condition, as well as their families and caregivers, are exposed to a series of challenges that can affect their quality of life due to lack of access to comprehensive care, which promotes physical and psychosocial health, allowing them to be active and productive. Social stigma, especially when it comes to hereditary hemophilia, and the lack of knowledge about it, both in patients and in the different actors of the health system, are just two of these challenges that generate different high-impact social and economic costs.
exactly the World Federation of Hemophilia (FMH) affirms that, in addition to the direct costs related to the medical care of the condition, there are other indirect costs that become personal and social, such as school or work absenteeism, which can generate limitations in the development of the families that live together with hemophilia. In the words of César Garrido, president of the WFH, “beyond the medical challenge that a diagnosis of hemophilia entails, there is an emotional and social burden that impacts the stability of families living with this condition and imposes obstacles to social interaction, education and lead a decent and stable working life. As a consequence, the productivity, well-being and expectations of families are affected in the short and long term, which also has an unfavorable effect on society in general”.
Costs directly and indirectly related to hemophilia care
According to the WFH and the Madres eXtraordinarias community, which brings together more than a thousand people living with hemophilia in Latin America, most of them carrier mothers, among main costs that are directly associated with hemophilia care are:
- Transportation, food and accommodation to attend medical check-ups, especially when living long distances from care centers.
- Treatments, therapies or medications that are part of the comprehensive care of the condition, but that are not covered by public health systems.
- The purchase or rental of a high-capacity refrigerator at home to keep essential medications in good condition.
On the other hand, among the costs indirectly associated with living with hemophilia, especially when there is no access to comprehensive care, the following are identified:
- Purchase of physical protection equipment, such as knee pads and helmets, to prevent bleeding and related complications.
- Temporary or permanent abandonment of formal jobs and/or professional careers by people with hemophilia, family members or caregivers to dedicate themselves to caring for the condition.
- Interruptions in school or work hours to attend to emergencies or attend/accompany medical check-ups, which increases the request for permits, generating delays in the learning process and reducing economic income.
- Structural adaptations of different places, such as home or school, in order to avoid blows or injuries.
- Impairment of well-being and physical performance due to the wear and tear caused by emergency care, such as accidents that cause bleeding that require immediate medical attention.
- Payment of private classes when conditions are not in place for people with hemophilia to attend regular classes.
- Decreased time and resources to participate in social, educational, work or extracurricular activities.
Importance of teamwork in gaining access to comprehensive care for all living with hemophilia
Precisely, in the context of World Hemophilia Day, the WFH promotes work for access to comprehensive care of the condition for all those who require it, through alliances with key actors in the public and private sectors, advocacy in public policies related to the condition, so that the positive impact is greater and the hidden costs that the condition entails when it is not treated in the appropriate way are reduced. “Citizen activism, through which people with hemophilia can participate in discussions related to the management of the condition, is essential for countries and their health systems to improve the level of care for this community, which has been somewhat relegated for a long time. many years”, adds Garrido.
In this same line, the WFH highlights the importance of government entities knowing the reality of people with hemophilia and how improving their quality of life, through continuous access to comprehensive care, has the potential to positively impact society, thanks to the possibility that people who would be in medical centers, contribute to the productivity of their country from the academy and the labor sector.
Currently, the Madres eXtraordinarias initiative, which has just completed its first year of activity, has sought to bring together all people with hemophilia in Latin America to educate about the condition and promote work towards access to comprehensive care for carrier mothers and their sons and daughters, in line with the Federation's call to involve governments and integrate the necessary care of inherited bleeding disorders into national public policies.
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About eXtraordinary Mothers
Mothers eXtraordinary is an initiative promoted by and for mothers with hemophilia, with the support of Roche Latin America and the guidance of a committee of members of the community related to the condition, which aims to educate them so that they can achieve a better quality of life for themselves and their sons and daughters, while raising awareness of the importance of having access to comprehensive care.
Roche is an international company, pioneering the research and development of medicines and diagnostics to advance science and improve people's lives. The combined power of pharmaceutical-diagnostic integration under one roof has made Roche the leader in personalized medicine, a strategy focused on providing each patient with the best possible treatment.
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