Many adults with hemophilia have enjoyed hard-earned independence from parents and HTCs through education, home treatment, and determination. However, men with hemophilia face many issues as a result of the disease.
Retaining part of the decision-making process about their health care and their overall lives is important to adults with hemophilia. Many have jobs and resources to provide for themselves and their own families.
Comprehensive hemophilia treatment and home treatment programs have allowed many adults with hemophilia to select an appropriate career and pursue the education or training needed to achieve their goals. Some adults, however, have found that progressive joint disease or complications of HIV or hepatitis have impaired their ability to continue to perform some jobs that were previously manageable. Loss of such jobs raises concerns about financial security, insurance coverage and the possible need for further education or training.
Increasing physical impairment can result in significant lifestyle changes and reversal of roles within a family. These changes in abilities, functions, and roles are a major loss for adult patients who have overcome so many obstacles to achieve independence. Pyschosocial support can assist them in grieving for these losses and in coping with these adjustments.
Previously, many adults readily disclosed their hemophilia diagnosis. However, when coinfection with viruses became an issue, many adults reconsidered the issue of disclosure. Most adults have shared their diagnosis, and often their associated complications, with friends and family. In terms of disclosing to their employers and coworkers, this has varied based on the individual’s preference, privacy issues, treatment needs, the degree of physical impairment, and past experiences with disclosure in the workplace.
In addition, hemophilia can continue to have an effect on their dating relationships because it sometimes affects their mobility, appearance, and interests. Disclosure about HIV or HCV status can raise issues about trust, the ability to make plans for the future, and potential sexual transmission of HIV. For married men, there are similarities and differences in potential issues. Sexual transmission and safer sex are major concerns that can have an effect on family planning. For these men and their partners, support in exploring pregnancy alternatives is helpful. Men with HIV or hepatitis can also face concerns about disease progression, and complications of treatment, which can affect relationships. Adults with HCV or HIV, or both, also face issues related to disclosing their diagnosis to their children and often seek guidance with this issue from HTC staff.
As patients cope with multiple diagnoses, such as hemophilia, joint disease, HIV, and hepatitis, considerations for treatment become more complex.
Planning for health care in the event of progressive disability is an important task for an adult, again raising concerns about loss of independence. While some of this responsibility can be assumed by a spouse, partner, or family member if disability progresses, it is important for the adult patient to continue to maintain as much control as possible over his health care.
Adults with hemophilia have considerable concerns about financial stability and the cost of health care. The cost of treating hemophilia and its complications continues to rise in a climate of health insurance changes. Individuals might select jobs or keep unsatisfactory jobs to be able to obtain or retain insurance coverage. Those with insurance face rising co- payments and lifetime limits. Health insurance concerns, coupled with the uncertain ability to continue to work, can be devastating to patients and their families.