Rare disease advocacy groups dedicate their time to pushing for legislation to increase funding for research into the treatment of orphan diseases (Empowering the Rare Disease Community). Some advocacy groups are specifically dedicated to an individual disease, such as the National Fabry Disease Foundation, whereas others fight for more general legislation, such as the Rare Disease Legislative Activists, but they all agree that patients with orphan diseases deserve treatment. Many believe that there is an inherent moral and ethical issue underlying the funding for this research that needs to be addressed before decisions are made.
There is a phenomenon, dubbed the “rule of rescue” by Albert Jonsen, which describes the inherent need that humans have to save others who are weaker than them, or are in danger (Largent). This reaction to others in trouble can clearly be seen in situations such as someone trapped under the rubble from an earthquake. Extreme measures may be taken to save that one life, though it may be expensive to do so, out of the human urge to save others. In many cases this desire to save translates into medical terms, with extremely expensive practices being used to save lives. However, orphan diseases seem to be the exception to this rule. This seems to be due to the production of treatments being deemed ‘unreasonable’ outright due to prices.
Therefore, activists believe that the moral issue comes down to the pull between saving lives, and being utilitarian about the use of resources. Many companies believe that the benefit of creating orphan drugs does not outweigh the costs, but this neglects the human element of the issue. Though the financial benefit may not be sufficient for companies, the benefit to human lives is a matter that cannot be ignored.
Overall, advocacy groups believe the question comes down to the ethics of neglecting the ill for the sake of financial gain. In times of crisis we are often willing to go to financial extremes to save those who are in need of our help, which begs the question of why we can’t do the same for the thousands of people who are sick and dying every day due to treatable illnesses. These advocacy groups believe that a deeper look needs to be taken into the morality of the allotment of funding before decisions about resources can be made.
Works Cited
Empowering the Rare Disease Community. Rare Disease Legislative Advocates. Web.
Largent, Emily A. and Pearson, Steven D., "Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation Decisions for Rare Diseases," Hastings Center Report 42, no. 1 (2012): 27-34.
There is a phenomenon, dubbed the “rule of rescue” by Albert Jonsen, which describes the inherent need that humans have to save others who are weaker than them, or are in danger (Largent). This reaction to others in trouble can clearly be seen in situations such as someone trapped under the rubble from an earthquake. Extreme measures may be taken to save that one life, though it may be expensive to do so, out of the human urge to save others. In many cases this desire to save translates into medical terms, with extremely expensive practices being used to save lives. However, orphan diseases seem to be the exception to this rule. This seems to be due to the production of treatments being deemed ‘unreasonable’ outright due to prices.
Therefore, activists believe that the moral issue comes down to the pull between saving lives, and being utilitarian about the use of resources. Many companies believe that the benefit of creating orphan drugs does not outweigh the costs, but this neglects the human element of the issue. Though the financial benefit may not be sufficient for companies, the benefit to human lives is a matter that cannot be ignored.
Overall, advocacy groups believe the question comes down to the ethics of neglecting the ill for the sake of financial gain. In times of crisis we are often willing to go to financial extremes to save those who are in need of our help, which begs the question of why we can’t do the same for the thousands of people who are sick and dying every day due to treatable illnesses. These advocacy groups believe that a deeper look needs to be taken into the morality of the allotment of funding before decisions about resources can be made.
Works Cited
Empowering the Rare Disease Community. Rare Disease Legislative Advocates. Web.
Largent, Emily A. and Pearson, Steven D., "Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation Decisions for Rare Diseases," Hastings Center Report 42, no. 1 (2012): 27-34.
Rare disease advocacy groups dedicate their time to pushing for legislation to increase funding for research into the treatment of orphan diseases (Empowering the Rare Disease Community). Some advocacy groups are specifically dedicated to an individual disease, such as the National Fabry Disease Foundation, whereas others fight for more general legislation, such as the Rare Disease Legislative Activists, but they all agree that patients with orphan diseases deserve treatment. Many believe that there is an inherent moral and ethical issue underlying the funding for this research that needs to be addressed before decisions are made.
There is a phenomenon, dubbed the “rule of rescue” by Albert Jonsen, which describes the inherent need that humans have to save others who are weaker than them, or are in danger (Largent). This reaction to others in trouble can clearly be seen in situations such as someone trapped under the rubble from an earthquake. Extreme measures may be taken to save that one life, though it may be expensive to do so, out of the human urge to save others. In many cases this desire to save translates into medical terms, with extremely expensive practices being used to save lives. However, orphan diseases seem to be the exception to this rule. This seems to be due to the production of treatments being deemed ‘unreasonable’ outright due to prices.
Therefore, activists believe that the moral issue comes down to the pull between saving lives, and being utilitarian about the use of resources. Many companies believe that the benefit of creating orphan drugs does not outweigh the costs, but this neglects the human element of the issue. Though the financial benefit may not be sufficient for companies, the benefit to human lives is a matter that cannot be ignored.
Overall, advocacy groups believe the question comes down to the ethics of neglecting the ill for the sake of financial gain. In times of crisis we are often willing to go to financial extremes to save those who are in need of our help, which begs the question of why we can’t do the same for the thousands of people who are sick and dying every day due to treatable illnesses. These advocacy groups believe that a deeper look needs to be taken into the morality of the allotment of funding before decisions about resources can be made.
Works Cited
Empowering the Rare Disease Community. Rare Disease Legislative Advocates. Web.
Largent, Emily A. and Pearson, Steven D., "Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation Decisions for Rare Diseases," Hastings Center Report 42, no. 1 (2012): 27-34.
There is a phenomenon, dubbed the “rule of rescue” by Albert Jonsen, which describes the inherent need that humans have to save others who are weaker than them, or are in danger (Largent). This reaction to others in trouble can clearly be seen in situations such as someone trapped under the rubble from an earthquake. Extreme measures may be taken to save that one life, though it may be expensive to do so, out of the human urge to save others. In many cases this desire to save translates into medical terms, with extremely expensive practices being used to save lives. However, orphan diseases seem to be the exception to this rule. This seems to be due to the production of treatments being deemed ‘unreasonable’ outright due to prices.
Therefore, activists believe that the moral issue comes down to the pull between saving lives, and being utilitarian about the use of resources. Many companies believe that the benefit of creating orphan drugs does not outweigh the costs, but this neglects the human element of the issue. Though the financial benefit may not be sufficient for companies, the benefit to human lives is a matter that cannot be ignored.
Overall, advocacy groups believe the question comes down to the ethics of neglecting the ill for the sake of financial gain. In times of crisis we are often willing to go to financial extremes to save those who are in need of our help, which begs the question of why we can’t do the same for the thousands of people who are sick and dying every day due to treatable illnesses. These advocacy groups believe that a deeper look needs to be taken into the morality of the allotment of funding before decisions about resources can be made.
Works Cited
Empowering the Rare Disease Community. Rare Disease Legislative Advocates. Web.
Largent, Emily A. and Pearson, Steven D., "Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation Decisions for Rare Diseases," Hastings Center Report 42, no. 1 (2012): 27-34.