Ethical Muscular Atrophy (SMA) (Grant, 2018; Thomas, 2018).

Ethical Funding Decisions:An Emphasis on Children and Disease SeverityAngel KennedyStudent Number: 301248357HSCI 319W: Applied Health EthicsInstructor: Dr. Jeremy SnyderTA: Avery MilneSubmitted on October 29, 2018Ethical StanceI argue that the government’s funding decisions should be made based on prioritizing the treatment of children and by considering the severity of the disease. My position is supported by emphasizing the importance of effective freedom, the principle of proportionality when responding to disease treatments, and Rawls’ Liberty Principle. In this paper, I will use aspects of Kantianism, Liberalism, and Rawlsian theories to support the necessity of this criteria in funding allocation, rebut my claim with an Act Utilitarianism and Communitarianism argument, and counter this argument with a Rule Utilitarianism perspective.

Support Through Ethical Theories and Principles The Canadian government has approved the funding of free treatment for type one Spinal Muscular Atrophy (SMA) (Grant, 2018; Thomas, 2018). There has been an ongoing debate about whether it is ethical for the Canadian government to fund this treatment, given its narrow scope of recipients and status as one of the most expensive drugs in the world (Grant, 2018; Thomas, 2018). Although SMA occurs in only one child per sixty-thousand live births, the children who get type one SMA typically die before age two (Grant, 2018; Muscular Dystrophy Canada, 2018). Given the severity of this disease, and its tendency to affect children, I argue that the Canadian government is making the most ethical decision by funding the treatment of Spinraza.To understand this ethical dilemma, it is important to develop a comprehensive knowledge of why pharmaceuticals are expensive in Canada. Currently, within the Canadian healthcare system, Canadians are covered through public financing for medical services that are provided in hospitals or by physicians, and which are deemed to be medically necessary (Paris & Docteur, 2007). Given this setup, all drugs that are provided outside of a hospital are not included in the free medical care that Canadians receive (Paris & Docteur, 2007).

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Orphan drugs, such as Spinraza, are medications that treats rare diseases and because of this narrow scope of potential patients, some of these drugs may either not be developed, or be priced higher to compensate for the minimal expected financial return that comes from producing a drug that has a low demand (Hägglöf & Holmgren, 2012; Simoens & Huys, 2017). A significant component of the argument supporting the focus on children and the severity of disease comes from the Liberalism theory, which emphasizes that individuals should be able to live according to their beliefs of what is valuable to them (Holland, 2015). When looking at the ethical dilemma of how the Canadian government should determine which drugs to fund through the lens of Liberalism, it is important to define different types of freedom and their implications to this situation.

Positive freedom is the capability for someone to perform an action (Holland, 2015). As an extension from positive freedom, effective freedom postulates that a person has freedom if they are in a position where they have the means to successfully do something they want to do (Holland, 2015). This differs from negative freedom which emphasizes that a person is free to act because they face no restrictions that impede said action (Holland, 2015).

Given these definitions, a person’s effective freedom is restricted when they need and want an expensive treatment. However, even though the treatment exists, it remains an unreachable option when assessed by financial capability. One may say that these patients’ negative freedom is also compromised given that the possibility to receive treatment may be restricted by these various financial barriers.

In the case of sick children, they are unable to personally finance treatments, which immediately restricts their effective freedom. Furthermore, they are unable to express any type of freedom which promotes the importance of prioritizing their safety. Through the Canadian government funding Spinraza treatments, the effective freedom of the parents of sick children is advanced by providing them with the means to freely make decisions regarding their child’s care. In addition to this, by treating children with life-threatening diseases, this heightens the possibility of these children acquiring effective freedom when they get older. Given that good health is a condition for effective freedom, this freedom cannot be obtained without treatment (Holland, 2015). These patient’s future autonomy may also be compromised if treatment is withheld from them due to long-term effects of their disease or mortality (Holland, 2015). By providing treatment and improving children’s physical capabilities to one day live autonomously, this is deemed as being the ethical decision under a Liberalism theory. This leads to a relevant principle in understanding the significance of prioritizing children and high-mortality diseases when making funding decisions.

Pursuant to the proportionality principle, outlined by Mill, the response to a situation needs to be proportionate to the harm that the situation is causing (Holland, 2015). When looking at a situation of several rare diseases that require expensive treatments, and only a limited budget to fund these treatments, it is important to ensure that the costs being spent are proportionate to the risks at hand. Prioritizing children follows this principle of proportionality, given that children typically have a longer life ahead of them than adults and therefore have more to lose than adults. By prioritizing severe diseases that result in death, this similarly advocates for the substantial amount of money being spent based on the harm that the disease is causing. Kantianism is based on categorical imperatives that support the prioritization of children in finance allocation decisions (Holland, 2015).

Kantianism states that one thing that makes people valuable is their ability to be autonomous and that this autonomy should be protected (Holland, 2015). In the case of children, this autonomy can be protected by providing extra care to children so that they can develop into healthy and autonomous beings. This is reflected in relational autonomy, which explains that people rely on social support and relationships to develop into humans who can make autonomous decisions (Holland, 2015). Since Kantianism also focuses heavily on equitable treatment, it accentuates that these groups of children need more resources to compensate for their poorer health and to give them equitable life chances to become autonomous (Holland, 2015). Furthermore, one categorical imperative proposed in Kantianism is the Formula of Universal Law.

In this ethical theory, an action is immoral if it is based on a maxim that is unreasonable for everyone to follow (Holland, 2015). Specifically, in this case, I assume that the death of a child is bad, and that the death of a child from a disease for which there is a treatment, is especially bad. Based on this assumption, the action of having a life-saving and life-enhancing treatment for a disease, but choosing to not invest in the allocation of funding for this medicine would be immoral because it is based on a maxim that could not reasonably be universalized. It could not be universalized because if everyone were to neglect the treatment of children, who cannot advocate for themselves or act autonomously, many children would die of preventable diseases. Another major consideration in this Kantian argument is addressing the relevant maxims in this scenario.

Maxims are principles that people base their lives on (Holland, 2015). A maxim in this ethical dilemma is that it is moral to save the lives of children whenever possible, given their reliability on others for survival. We can assume that this maxim is agreed upon and that by living according to this maxim, it is unethical to not prioritize funding treatments which largely affect children, and of which could save their lives. Rawlsian theory adds considerations to the morality of this ethical decision by applying the principle of maximin, which stresses that rational and ethical decisions are based upon prioritizing choices which help the “worst-off” group (Holland, 2015). In addition to this, Rawls highlighted that people should place themselves in the “Original Position” by ignoring what they know about themselves when making decisions (Holland, 2015). Within this particular ethical debate, we can define the least well-off group as children who are sick with inevitably fatal diseases. We can support this definition because these children are unable to fend for themselves, take any actions to change their situation, and did nothing to promote the occurrence of their disease.

Furthermore, Rawls’ theory emphasizes the use of the Liberty Principle when determining what basic rights each person should have access to (Holland, 2015). Some basic liberties identified by Rawls are the rights to health care and life, which can reasonably be applied to children and are important for the ethical dilemma of how the Canadian government should allocate funding for treatments of rare diseases. Our decisions should therefore be based on providing these liberties of health and life to sick children so they are given the same chances and opportunities as healthy children. Critiquing the Prioritization of Children The Act Utilitarianist perspective provides what I believe to be the strongest defense against my claim that children should be the emphasis of government treatment funding. In order to look through the lens of a Utilitarianism theory, I must first define utility in this situation. We can say that the action that yields the greatest utility is that which saves lives, with the biggest consequence being death. Therefore, within the theory of Act Utilitarianism, the act that would produce the greatest utility is allocating money to treating diseases that have cheaper treatments, would have more recipients, and in turn save more lives.

Utilitarianism also allows for decisions to be made through emphasizing social worth (Holland, 2015). Within this Utilitarian theory, very young children have lower priorities to receiving treatment than young adults do. Since children that receive treatments may not be fully functioning even after their treatment, they may not be able to give back to society for the greater good. As such, their lives should not be prioritized. This is also a key point in the Communitarian argument which posits that the most ethical decision is that which benefits the community the most.

Since children do not contribute as much to the community as adults do, and since community is at the centre of importance within this theory, children should not be the recipients of limited funds (Holland, 2015). Response to a Valid Critique In responding to these criticisms from Act Utilitarianism and Communitarianism, by taking a Rule Utilitarian perspective I am able to identify the immoralities that arise from the proposed Act Utilitarian argument. The Act Utilitarian argument made earlier seems to be in conflict with what society would deem to be moral. To address this conflict, we can use a Rule Utilitarian rebuttal which states that acts are imbedded in rules that society lives by and that moral actions are that which follow these rules and would produce the greatest utility if everyone followed them (Holland, 2015). We can say that the act of allocating limited funds to children with rare fatal diseases emerges from the rule that we should save those who cannot save themselves, as long as equal harm is not caused to the person doing the saving.

It is reasonable to assume that this rule is widely accepted by society. For example, if a vicious chihuahua attacked a group of young children and adults, it would be reasonable to say that the adults in the group should protect these children, given the risk of fatal injuries to the young children, their inability to protect themselves, and the minimal chance of fatality for the adults. The condition that no equal harm should be caused to the person doing the saving was added because it is unreasonable to expect all people to save the life of another person at the expense of their own life. By adding this condition we can see that the choice to allocate money to save a child’s life is the most moral action since the government policy makers will not face the same harm the children would if they did not receive the treatment.

Furthermore, my previous arguments remain relevant when emphasizing the importance of children in the government’s decision-making process. Even though by saving children, the sheer number of people being saved may not amount to the biggest number, if we look in terms of life-years preserved by saving a child then there is a greater impact than saving someone who will have less years to live. Concluding Ethical Decisions In the debate of what ethical values the government should use when choosing which treatments to fund, I argue that the severity of the disease and whether the disease largely affects children are the most pressing concerns to base this judgement on. This argument was substantiated using theories supporting that the effective freedom of children should be prioritized, ensuring children can develop into autonomous beings, promoting that the basic liberties of children should be upheld, and ensuring that diseases with definite mortality are prioritized. Through the nature of exploring this debate from varying perspectives, it is evident that the priority of children and severe diseases is a widely acceptable funding rule in this context.


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