Hemophilia is a bleeding disorder that slows the normal blood clotting process. An individual with hemophilia will experience a prolonged oozing of blood after having their tooth pooled out, an injury infliction or surgery. However, in other cases, an individual with severe hemophilia can experience spontaneous bleeding or bleeding following minor trauma. According to the National Library of Medicine (2019), there are serious cases of bleeding that can occur in internal organs, muscles, joints or the brain.
Queen Victoria of England (1837) passed the hemophilia gene to royal families of Germany, Spain and Russia and this led to the disease being referred to as a “royal disease” (Hemophilia of Georgia, 2019) Spontaneous mutation of the hemophilia gene was the main cause for Queen Victoria’s hemophilic illness. The history of Hemophilia studies is traced back to the 1900s once scientist found out that that the human blood can be divided into types allowing for a much easier blood transfusion process (Hemophilia of Georgia, 2019). Dr Judith Graham Pool discovered the thawing and freezing of plasma to form cryoprecipitate in the 1960s (Hemophilia of Georgia, 2019). Since the invention of cryoprecipitate, in the 1960s, this has been the best treatment method for hemophilia. Plug et al. (2006) state that before the introduction of the hemophilia clotting factor preparation by Dr Graham, <30 was the life expectancy for hemophilic patients
Delegate your assignment to our experts and they will do the rest.
There are two types of hemophilia; Factor VII Deficiency (Hemophilia A) and Factor IX Hemophilia (Hemophilia B). The two types of hemophilia share similar signs and symptoms however, different gene mutations cause the disorders. The deficiency of the coagulation factor resulting from the X-linked recessive inheritance pattern is the major cause of Hemophilia. Hemophilia A is caused by a deficiency in the factor VIII, while Hemophilia B is caused by a clotting factor IX deficiency (National Library of Medicine, 2019). There is another third type of hemophilia referred to as acquired hemophilia, a non-inherited condition, as it has no genetic inheritance pattern. Acquired hemophilia begins once an individual attains adulthood and is characterized by bleeding of the soft tissues, muscles and skin. The onset of acquired hemophilia is when the body begins making autoantibodies, specialized proteins that disable and attack the factor VIII coagulation (National Library of Medicine, 2019). These autoantibodies are at times associated with allergic to certain medications, cancer, disorders of the immune system and pregnancy. Hemophilia B Leydon brings about excessive bleeding in people while they are still very young. Nonetheless, once they grow up into adults, the bleeding tends to reduce. Females suffer from very few cases of the two hemophilia as compared to the males. The most common form of hemophilia is type A, which affects I in every 4000-5000 males (National Library of Medicine, 2019). On the other hand, hemophilia B affects 1 in 20,000 newborn males globally (National Library of Medicine, 2019).
Hemophilia affects a patient’s entire family throughout one’s lifetime. Various family issues can affect the ability of the patient to cope with the illness such as; financial problems, school problems, death in the family and divorce. Hemophilia has a negative financial burden, and this can place a significant economic burden on the patient (Centre for Disease Control and Prevention, n.d). Some of the direct cost associated with hemophilia include drug treatments, outpatient visits and hospitalizations. Other indirect costs associated with hemophilia include reduced work productivity and work and school absenteeism.
Social Factors Linked to Hemophilia
Educational Attainment
Shankar et al. (2013) state that the level of an individual’s educational attainment is being recognized as part of the social determinants of health. Through higher educational, one will have a foundation of making better health decisions and accessing employment opportunities that give one resource that support better physician and mental health. A substantial number of patients lack the awareness related to the disorder or how seeking health intervention is crucial for them towards getting better. Saxena (2013) states that about 30% of patients suffering from hemophilia do not have any knowledge about the illness. The patients, including their families, thus lack any knowledge about the negative effects associated with untreated bleedings.
The most common barrier leading to lack of earlier treatment of hemophilia is the lack of awareness concerning the disorder. Within 2 hours of acute bleeding, one must seek treatment according to the guidelines outlined by the current World Federation of Hemophilia (Saxena, 2013). On the other hand, young children fear injections and some might end up hiding any form of bleeding as thy fear being reprimanded by their parents. Studies have also shown some parents fear using anticlotting factors on their children and injecting them and this is a major impediment towards hemophilia home-based care.
Lack of patient education has led to patients and parents not knowing the early signs of hemophilia. A study carried out in Central and South America, Africa, Asia and Europe involving 47 doctors found out that only 64% of hemophilic patient seek medical attention one hour after the onset of bleeding (Saxena, 2013). The Centre for Disease Control and Prevention also found out that 15% of patients aged 13-21 sought treatment 6 hours after onset of bleeding while another 11% cited the bleeding did not require any form of treatment (Saxena, 2013). A lack of patient education makes them lack valuable and crucial information that can empower them into taking responsibility and managing the disease.
Income
Incomes play a significant role in determining an individual’s health outcomes. The lower a person’s income, the poorer the health outcome and the higher the income, the higher the health outcomes. In the USA, more than 30% of the people are not insured while others are underinsured. This forces such patient to incur out of pocket expenses that they cannot afford (Saxen, 2013). In the USA, an estimated $18,980 is used to treat an adult suffering from mild-to-moderate hemophilia. In the case of a patient with severe hemophilia, the costs can rise to $60,000-$200,000 (Saxen,2013).The costs of treating hemophilic patients with inhibitors are a bit higher, and they can exceed over $100,000 (Saxen, 2013). Additional indirect costs resulting from comorbid condition such as hepatitis C virus, HIV infection, liver disorders, synovitis and obesity can increase the hemophilia treatment related costs. It is an indication that individuals from the middle and low-income classes suffering from hemophilia will lack the money to seek treatment as compared to those from higher-income classes. In the USA, the gap between the rich and the poor has been growing over the years. According to the Pew Research Centre (2019), the middle-class income earners are continuing to lose ground financially to the higher income earners.
Stigma and Discrimination
Stigma and discrimination are a major social determinant of health as they affect one’s ability to access health care. This brings about delays in diagnosing a particular illness and hence affecting much earlier management of a disease. Stigma and discrimination are attributes that discredit others and negatively demean them. However, stigma and discrimination are different in that the former revolves around exclusion and the latter revolves around exclusion.
Individuals suffering from Hemophilia B require an administration of new blood to ensure the lost blood components involved in clotting are replaced. However, during the 1980s, people with hemophilia B were transfused with contaminated blood, and this saw them suffering from other co-morbidities such as HIV and hepatitis B and hepatitis C (Boardman et al., 2019). This led to increased social stigma and discrimination, especially for people living with the disorder.
According to Boardman et al. (2019), most parents have begun using genetic testing as a means of terminating pregnancies affected by hemophilia. However, the attitudes towards terminating such pregnancies have brought about mixed reactions among people. According to a study carried out in the UK involving 197 women, 27% of the affected pregnancies underwent termination on the basis that the fetuses were affected by hemophilia (Brodaman et al., 2019). The major reasons for the pregnancy termination include having liberal attitudes towards pregnancy termination, and severity of the disorder within a given family. A considerable number of the pregnancies are also directed towards female fetuses, unlike males as the former are considered as being careers of the genes resulting in the disorder. The stigma and discrimination around hemophilia have led to an increased termination of female fetuses diagnosed with hemophilia.
Gender
World Health Organization believe that gender is a social determinant of health among not only women and girls but also boys and men. The gender roles, behavior and norms will influence how men, boys, women and girls access various health-related services and how the health system responds to their needs.
Masculinity affects the health of men and has now become a social issue with significant consequences. Men have very poorer health outcomes as compared to the women irrespective of their socioeconomic statuses. Moreover, in case of health issues related to physical or mental illnesses, men are less likely to seek any form of medical attention (Reinicke, Sogaard & Mentzler, 2019). The mortality rate of men across all diseases is higher as compared to women, and they have a lower life expectancy with most not passing 65 years of age (Reincke, Sogaard & Mentzlker, 2019). Men suffering from chronic illnesses suffer from identity dilemmas as the signs and symptoms of the illnesses continually affect what they become and who they are. Most people suffering from chronic illness are often engrossed by a sense of improbability about the future. According to Reincke, Sogaard & Mentzlker (2019), bracketing is the phenomena upon which men handle improbabilities about the future through minimizing and ignoring. Bracketing involves hiding or forgetting the negative outcomes associated with a particular matter, such as chronic illnesses.
Little studies have been carried out to find the relationship between hemophilia and masculinity. However, the few studies have been able to find out that men suffering from severe hemophilia avoid speaking about the issues and do not seek for support from society, as they fear to lose their masculinity once they speak about the issue (Rolstad, 2015). The term masculinity is based on the notion that gender differences are socially built and not biologically embedded.
The study by Reincke, Sogaard & Mentzler (2019) found out that the men’s hemophilia experience is highly influenced by socially created gender roles. Most of the men who suffer from the disorder are mostly marginalized during their childhood and restricted from participating in sports. Once such men attain adolescence, they fear to become socially marginalized, and this sees them attaining a rebellious attitude. They end up indulging in substance abuse and avoid medication to regain back their masculine identity. The men suffering from hemophilia will feel powerful, and they lack the ability to perform various functions associated with being a man. As they grow older, their bodies begin to fail, this brings about frustration, and this makes some deny any pains even as the disease continues to become severe. This is an indication that socially constructed roles in masculinity affect men suffering from severe hemophilia. The fear of being stigmatized and discriminated against makes them not talk about their weaknesses it will demean their roles as fathers, which requires one to become fearless.
Conclusion
Stigma and discrimination form the major barrier towards hemophilic patients seeking medical attention. The fear of revealing their conditions to others hinders individual from taking tests to determine their statuses. To reduce the stigma and discrimination against hemophilic patients, there is a need to raise awareness about the condition and the effects of negative attitudes and behaviors towards such patients. This will help in reducing the need to end the life of female fetuses diagnosed with the disease. The campaign programs will be used to display that there are treatment options for hemophilic patients and through technology, managing the disease has been simplified, unlike a couple of decades ago.
The lack of educational awareness on hemophilia is another factor affecting the diagnosing, treatment and management of the illness. There are many factors that can increase the prevalence of hemophilia in people; however, lack of knowledge is the main factor. There are many channels through which information on hemophilia can be passed through; however, the best one is school-based hemophilia education programs. This can bring about significant changes in how parents manage the condition in their children. The children will have all the necessary knowledge on the disorder, and they can help their parents in making informed decision depending on its diagnosis, management and treatment.
Gender inequalities are known to affect healthcare access for hemophilia, especially in men. Across many realms, men are viewed as being stoic and not expected to show any sign of weakness or vulnerability. This makes the males reluctant in seeking medical attention in case pone suffer from hemophilia. To address the negative impacts of gender inequality in healthcare brought about by socially created constructs, awareness programs are important. The programs will aim at supporting mean with hemophilia and calling them out to be treated and diagnosed. Such programs should be set within the local communities whereby most of the biases exist.
Income-related barriers affect health care access as people from low and middle income cannot access the services efficiently. It is the duty of the government to ensure that it improves the income levels of its people. The government should increase project development in low-income regions to allow for job creation, which will ensure the people suffering from hemophilia can get money to seek attention. The government should kick start job growth by investing in job creation strategies such as boosting the national economy, renovation of abandoned houses and rebuilding the infrastructure. Raising the minimum wage is another means through which the government can increase income is among the low income and middle-class individuals. The current minimum wage is $7.25 per hour which does not fully support the financial needs of the workers. The government should raise it to $10.10 per hour or higher as it will help in lifting millions of Americans out of poverty. The Earned Income Tax Credit is an antipoverty program that helps millions of Americans in avoiding poverty. The Earned Income Tax Credit pays long-term dividends the families. However, the antipoverty program does not support childless workers. It is vital for policymakers to ensure that they support and boost the EITC to ensure that even childless workers access the dividends. This will help those suffering from hemophilia to get an income to seek medical attention. The government can also subsidies hemophilia treatment and diagnosis costs to allow all people irrespective of the social class can access health care services.
References
Centre for Disease Control and Prevention. (n.d). Introduction to hemophilia care . Retrieved from https://www.cdc.gov/ncbddd/hemophilia/course/page2120.html
Boardman, F. K., Hale, R., Gohel, R., & Young, P. J. (2019). Preventing lives affected by hemophilia: A mixed methods study of the views of adults with hemophilia and their families toward genetic screening. Molecular Genetics & Genomic Medicine , 7 (5), e618.
Hemophilia of Georgia. (2019). The history of hemophilia. Retrieved from https://www.hog.org/handbook/article/1/3/the-history-of-hemophilia
National Library of Medicine. (2019, November 12). Hemophilia . Retrieved from https://ghr.nlm.nih.gov/condition/hemophilia
Pew Research Centre. (2019, May 7). Income inequality . Retrieved from https://www.pewresearch.org/topics/income-inequality/
Plug, I., Van Der Bom, J. G., Peters, M., Mauser‐Bunschoten, E. P., De Goede‐Bolder, A., Heijnen, L.,& Rosendaal, F. R. (2006). Mortality and causes of death in patients with hemophilia, 1992–2001: a prospective cohort study 1. Journal of Thrombosis and Haemostasis , 4 (3), 510-516.
Reinicke, K., Søgaard, I. S., & Mentzler, S. (2019). Masculinity Challenges for Men with Severe Hemophilia. American Journal of Men's Health , 13 (4), 1557988319872626.
Rolstad B. E. (2015). Social worker perceptions and observations regarding men’s management of hemophilia and the use of community-based support. Health & Social Work, 40(3), 239–244.
Saxena, K. (2013). Barriers and perceived limitations to early treatment of hemophilia. Journal of Blood Medicine , 4 , 49.
Shankar, J., Ip, E., Khalema, E., Couture, J., Tan, S., Zulla, R., & Lam, G. (2013). Education as a social determinant of health: issues facing indigenous and visible minority students in postsecondary education in western Canada. International Journal of Environmental Research and Public Health , 10 (9), 3908-3929.
