Economic issues:
Although it is uncommon, hemophilia is a life-long disease and from an economic perspective, it places a large burden on patients, healthcare systems and the economy. The costs that are connected with treating hemophilia are incredibly high which can be a challenge for hemophiliacs since there is currently no cure for this disease which means that they have to live with it their entire lives (Gater, Thomson, & Strandberg-Larsen, 2011). The main treatment for hemophilia is replacement therapy which is provided on a continuing or temporary basis and involves injecting clotting factors into the blood. Unfortunately, this is also an incredibly expensive treatment and many insurance companies constantly change their insurance policies which becomes very confusing for the patients and their families and puts them in a difficult financial situation. Another economic issue in the hemophiliac community is that there is not enough funding for research. New technology required to learn more about hemophilia is very expensive and even with many organizations working to raise funds for finding a cure, it is found to be too expensive.
political issues:
Hemophilia was once very evident in European royalty and has become known as “the royal disease” because it affected the royal families of England, Germany, Russia and Spain in the 19th and 20th centuries. Queen Victoria had been the initial carrier of the hemophilia trait and since the royal families only married within each other, the disorder was passed on to many generations. Out of Queen Victoria’s nine children, two of her daughters and one son had inherited hemophilia. Her son had died from a fall at an early age but her two daughters passed the trait on to several of their children, one who later married the Tsar of Russia and had a son with hemophilia. The disorder was passed on through various royal family members for three generations after Queen Victoria’s rule, and then disappeared.
societal issues:
Since hemophilia is such an uncommon disorder, not many people are informed about it and hemophiliacs may find it difficult to educate others about what they are experiencing. Some children with hemophilia feel reluctant to tell their school about their disorder. This is because many people, including staff, are not very informed about hemophilia and therefore tend to overreact which makes the child feel set apart from their peers. Also parents of hemophiliacs may constantly feel anxious leaving their children in the care of others or may have a hard time giving their child more independence as they start getting older. This may leave the child feeling trapped and craving more freedom which can lead them to rebel. Children with hemophilia may try to ignore their disorder by not taking usual precautions when it comes to routine care, and hiding bleeds that need treatment. This can obviously be extremely dangerous to their health and can be life threatening. (Amesse, Douesnard, Rivard, & Zereik, 2001)
environmental issues:
Individuals with hemophilia always need to be very careful with their surroundings in order to avoid injury. Unfortunately, this means that many individuals with hemophilia are unable to join sports teams or activities that include physical contact because of how risky it is to their health. Hemophiliacs also have to make sure that they are vaccinated against hepatitis since they have a much higher chance of contracting it. Another environmental issue that hemophiliacs face is avoiding certain medications or drugs, such as aspirin, which can interfere with their bloods ability to clot. Also, if a hemophiliac requires dental work or any type of surgery, they need to be treated ahead of time with a mixture of factor VIII to avoid having a hemorrhage which is an excessive loss of blood.
(Centers for Disease Control and Prevention, n.d.)
(Centers for Disease Control and Prevention, n.d.)
ethical issues:
Before 1992, there were not any laws passed that required clinics to screen blood. This meant that there was no way in guaranteeing that the donated blood products were free of HIV. This was extremely dangerous for hemophiliacs because they require frequent transfusions of clotting factors in order to continue having a normal blood clotting system. The blood that they were receiving was not just from one person but it was actually a combination from a number of different donors, those who had HIV and those who didn't. As a result, over 10,000 people living with hemophilia contracted HIV from the contaminated blood supply. It was later found that agencies had known that HIV was quickly spreading though the hemophilia population but they had still allowed HIV infected people to donate blood. One of these agencies was the Canadian Red Cross who was in charge of the Canadian blood supply in the mid 80's and had knowingly allowed contaminated blood to be given to hemophilia patients. Due to the contamination of the blood supply between 1982 and 1987, new methods were developed in the making of clotting factor products and now there are many screening tools that prevent HIV infected blood from entering into the blood supply. (Cichoki, 2014)