Aboriginal Self-Determination and Institutional Healthcare: Building Trust and Collaboration

Posted By Lauren Hanon

On November 14th, 2014, Justice Gethin Edward delivered a significant judgement concerning constitutionally protected aboriginal rights and family services in Ontario: Hamilton Health Science Corps. v. D.H. In a case concerning the health and wellness of an 11-year-old Haudenosaunee girl, J.J., from the Six Nations Band, Justice Edward recognized the existence of aboriginal and treaty rights in Canada by upholding section 35 of the Constitution Act, 1982,. The girl, J.J., suffered from acute lymphoblastic leukemia (A.L.L.), and was undergoing chemotherapy treatment at McMaster Children’s Hospital for a short time in the month of August, 2014, before her mother withrew her from treatment. J.J.’s mother, D.H., believed that traditional medicinal practices were more suitable treatments for her daughter than chemotherapy. Hamilton Health Sciences disagreed, and filed a claim against J.J.’s parents on the grounds of child protection under the Child and Familly Services Act. They believed that J.J. had a 90-95% chance of being cured with chemotherapy, and that terminating this procedure would put J.J’s life at risk. At court, D.H. and J.J. won the right to forego chemotherapy and practice traditional aboriginal medicine instead.

This case follows that of Makayla Sault, an 11-year-old Ojibwe girl and member of New Credit First Nation in Ontario. Makayla, like J.J., had A.L.L. She decided to stop her chemotherapy treatment in favour of traditional medicine. She passed away in January of 2015.

These two cases are strikingly similar. Many people have attempted to characterize the complexities here as issues between life and death, or, even more crudely, between aboriginal rights and death, which is a terribly simple, paternalistic and colonial way of framing the difficult situation that these girls and their closed ones have to face. Shauna Van Praagh, a law professor at McGill University, suggests that what is needed moving forward is “trust and collaboration.” Van Praagh reframes the question as one of who has rights over the child. The parents of Makayla and J.J., it must be remembered, only wanted the best for their children, and cared and loved them deeply. We cannot assume that the parents were motivated by anything but love and concern for their children. With this in mind, we can see how looking at this problem as a “tug of war over institutional governance of youth well-being” does not acknowledge how we could get to a state of such distrust and disrespect between the parties involved. A question that seems important to explore here is whether the case of J.J. ought to have been a legal question in the first place. Had there been trust and collaboration in the first place, D.H. and the hospital and other actors could have worked together in the best interest of J.J. from the beginning.

Further, according to Lisa Richardson, the Director of the CDC’s Division of Cancer Prevention and Control, and Matthew Stanbrook, a health policy professor at the University of Toronto, the key to building trust is in respect. Imagine what would have happened to J.J. had the court ordered her to be apprehended and forced to undergo chemotherapy, which involves harsh chemicals and the risk of extremely adverse side effects. The common understanding in medical sciences that chemotherapy is the only effective treatment for patients like J.J. contributes to the immense distrust in government institutions that many aboriginal people have, especially in light of the residential schools legacy. Instead of engaging with J.J. and her family as to why they decided to stop the chemotherapy, the hospital determined that the best course of action was to force her into treatment without collaborating with the family in an attempt to agree on a treatment plan that was satisfactory for all parties.

Richardson and Stanbrook highlight key components of traditional aboriginal medicine: “plant-based medicines, culture and ceremony, multiple dimensions of health (physical, emotional, mental, and spiritual), and relationship between healer, patient, community, and environment.” If these values meet your expectations of healthcare, and given the fact that they are not inherently opposed to conventional medical treatment, then respecting and providing for these expectations is just good patient-centered care. When these expectations are dismissed and disrespected, it is easy to see how a person, and even entire communities, could come to distrust a hospital and conventional medicine. A major issue that needs to be solved is how to built trust and collaboration in these circumstances moving forward.

J.J. went into remission from leukemia. However, seven months after J.J.’s initial diagnosis and withdrawal from chemotherapy, the cancer returned. Justice Edward reviewed his initial, ground-breaking judgement at the request of the parties’ lawyers in order to clarify that the child’s best interests must be paramount in all decisions. The judge spoke to J.J., her parents, the lawyers, and healthcare officials separately and modified his original ruling. J.J. and her family had decided that she should return to chemotherapy, in conjunction with traditional medicinal treatments. The hospital treament and the traditional treatments are working together in order to serve J.J., her family, and her community, in the best way possible. This collaboration is a step forward towards building trust between Aboriginal communities and the medical community, and hopefully, we can continue on this path in order to have better and more respectful healthcare for everyone.

Whose Kid Is It Anyway? Parentage Contracts for Surrogacy in Quebec

Posted By Colleen Morawetz

Third-party reproduction is a hot-button issue for ethicists and legislators alike. Throughout Canada, it is legal for a woman to carry someone else’s child, with the understanding that she will yield the child to its legal and/or biological parents upon its birth. However, the governing federal legislation, the Assisted Human Reproduction Act (AHRA), states that it is categorically illegal to pay a woman for these surrogacy services.

Beyond illegal or ambiguously legal remuneration, which usually occurs informally for fear of leaving a damning “paper trail”, the question of formal agreements remains. Absent legislative prohibitions, a surrogacy contract could cover a host of topics, including payment, reimbursement, stipulations as to prohibited conduct for the surrogate mother during the pregnancy, provisions establishing legal parenthood for the intended parents, and the requirement for the surrogate mother to relinquish the child upon its birth. Contractual stipulations regarding surrogacy touch upon important ethical questions of bodily autonomy, the nature of a legal family, and the potential for abusive clauses in situations of unequal bargaining power.

Section 6(5) of the AHRA allows provinces to legislate on the validity of all types of surrogacy agreements. In Quebec, Article 541 of the Civil Code states that “[a]ny agreement whereby a woman undertakes to procreate or carry a child for another person is absolutely null.” This article prohibits contracts for both natural surrogacy (where a surrogate mother’s own eggs are fertilized using donated sperm) and gestational surrogacy (where both eggs and sperm are donated, and the resulting embryo is implanted in the surrogate mother’s uterus). Within the Code, absolute nullity is reserved for arrangements that, in whole or in part, violate the norms of public policy. The perceived violation aligns with ethical concerns about surrogacy (altruistic and commercial): that a vulnerable woman may be exploited into “renting” her uterus for remuneration and/or forced to give up a child that she has carried to term, and of whom she may be the biological mother. Such concerns are undoubtedly serious, and such exploitation would indeed be an affront to moral sensibilities.

However, the blanket ban on surrogacy contracts has undesirable effects on intended parents in Quebec. Not only can intended parents not recruit surrogate mothers through financial incentives, but even establishing parentage is a legally confusing process. Notwithstanding an a priori intention of all adults involved, a surrogate mother might refuse to give up the child upon birth. Such a case would likely devolve into a court proceeding, where the intended parts cannot argue persuasively – without the benefit of an agreement indicating intent – against the presumption that the birth mother is the mother of the child.

For intended parents, some of whom may find the adoption process unattractive in part due to the potential for a biological mother’s change of heart, this provision is enough to cause serious anxiety. Filiation of children conceived naturally occurs by blood and through the presumption of paternity (Article 525 CCQ), and yet even genetic relation doesn’t clinch the legal maternity of the intended mother in cases of gestational surrogacy (Article 538.1 CCQ). In cases of natural surrogacy, where the surrogate mother is the biological mother, and/or cases where sperm has been donated by someone other than the intended father, the question of parentage becomes all the more pressing.

A 2009 Cour du Québec case concerning parentage in natural surrogacy was the first legal test of Article 541 CCQ. The intended parents and the surrogate mother had agreed to leave the mother’s identification blank on the baby’s birth certificate. The biological father planned to then consent to his spouse’s adoption of the child, thus completing the act of filiation without a declaration of parentage. However, Justice Dubois concluded that although the intended parents were raising the child, and that the spouse is the de facto mother due to uninterrupted possession of status, the intended parents were attempting to circumvent the law. Rejecting the intended mother’s Request for Adoption, Justice Dubois left the maternal filiation part of the child’s birth certificate empty. The judgment noted the importance of deciding matters in favour of the interest of the child (Article 33 CCQ), but that this principle cannot negate the illegality of absolutely null agreements.

However, there is some question about whether Quebec is moving towards abandonment of its blanket ban. Four subsequent Cour du Québec cases reversed course on the 2009 decision; the court in these cases allowed the intended parents to adopt their child (Note: granting adoption is not the same as declaring parentage; though the two statuses import the same rights and responsibilities, they occupy different levels on a symbolic hierarchy). Furthermore, scholars such as Professor Alain Roy note that the “best interest of the child” principle urges abandonment of the ban, as it is unclear who is responsible for a child upon birth. This is an especially disturbing ambiguity in the case of disabled children, who, on the flipside of the conventional surrogacy horror story of the surrogate mother claiming the child, may be renounced by their intended parents.

Moreover, many other provinces in Canada have (cautiously) more permissive approaches to establishing parentage, while still not recognizing binding surrogacy contracts. Ontario, Saskatchewan and New Brunswick have not introduced specific legislation, but their courts have established parentage in favour of the intended parents by judicial order. Alberta and Nova Scotia have reformed their family law statutes to give some weight to agreements of intention and introduce a standard process for establishing parentage. British Columbia goes furthest, not even requiring judicial orders to establish parentage in most cases. The BC Family Law Act requires written agreement that the surrogate mother will surrender the child to the intended parents. After birth, a standard statement is filed, and judicial intervention will only be required if a dispute arises.

Finally, increasing popularity of “surrogacy tourism” may be another argument for Quebec to relax or modify its ban. Many couples find it easier to turn to certain parts of the United States or overseas – often developing countries with little regulation on the matter – than to deal with the stress of both finding an altruistic surrogate and not having control over the child’s parentage upon birth. It is unlikely that surrogacy tourism will ever be eliminated while commercial surrogacy remains illegal throughout Canada, as the supply of altruistic surrogate mothers (who can only be reimbursed for ancillary pregnancy expenses, at best) will always be outstripped by demand. However, if the ethical issue in surrogacy is the exploitation of vulnerable women, then discouraging surrogacy tourism by placing higher legal value on parentage agreements may be a preliminary means of harm reduction.

Short of considering parentage agreements to be binding, or even introducing streamlined administrative procedures as in BC, Quebec can take certain intermediate steps. As in all other provinces, intended parents should be able to apply for declarations of parentage – beyond adoption. In these requests for judicial orders, parentage agreements should at least be considered proof of intent. Such developments might alleviate anxiety for intended parents and lessen the province’s symbolic disapproval of a legal practice.

Please stay tuned for more information on the 2016 MJLH Colloquium: “Assisted Reproduction: Navigating the Criminalization of Commercial Surrogacy and Reacting to Unexpected Situations”.

The Health and Safety of Sex Workers Motivates the SCC to Strike Down Sex Work Related Criminal Code Provisions in Canada (Attorney General) v Bedford

Posted By Lauren Hanon

Exchanging sex for money in Canada is not illegal. This is the very first statement made by Chief Justice McLachlin in Canada (Attorney General) v Bedford. What makes sex work effectively criminalized are the provisions in the Criminal Code, which render the activities surrounding sex work illegal. These provisions were constitutionally challenged in Bedford.

In 2013, the SCC struck down three sections in the Criminal Code as being unconstitutional. These provisions were said to have violated the rights of sex workers under section 7 of the Canadian Charter of Rights and Freedoms, which protects “the right to life, liberty and security of the person”. The sections of the Criminal Code that were struck down were s. 210 (keeping, or begin found in a bawdy house), s. 212(1)(j) (living on the avails of prostitution), and s. 213(1)(c) (communicating in public for the purpose of prostitution). The Chief Justice asserted that while the government has the right to regulate prostitution, a completely legal activity, the aforementioned provisions create extremely dangerous conditions for sex workers by limiting their ability to reduce risk and take precautionary measures to better protect themselves (para 60). Continue reading “The Health and Safety of Sex Workers Motivates the SCC to Strike Down Sex Work Related Criminal Code Provisions in Canada (Attorney General) v Bedford”

Tough Pill to Swallow: the Constitutional Challenge Threatening Access to Pharmaceuticals in Canada

Posted By Chris Laliberté

Not all diseases are created equal. Many incredibly rare conditions, such as paroxysmal nocturnal hemoglobinuria (PNH) and atypical haemolytic uremic syndrome (aHUS), occur in only a small percentage of people. These orphan diseases, defined by the FDA as occurring in less than 200,000 people across the United States, have such low prevalence rates that pharmaceutical companies are rarely willing to undergo the research, development, and manufacturing process necessary for limited commercial opportunities. As a result, many orphan diseases have finite treatment options, if any.

Those suffering from PNH and aHUS can count themselves among the lucky few. Not only do they have a treatment for their conditions, but one that has proven highly effective: Soliris. The only hitch – and a major one, at that – is the price tag, ringing in at over $700,000 per year for the rest of the person’s life. Despite its proven effectiveness and life-saving impact, the hefty cost has made public healthcare plans and services hesitate before approving coverage, leaving Canadians like Glen Dornian wondering if they will live long enough to regain their quality of life.

Without any justification for this exorbitant cost, the federal regulator has filed for a hearing to impose a limit on the price of Soliris in Canada and recoup some of the costs incurred over the past few years. Alexion Pharmaceuticals has responded with a countersuit that could threaten the stability of equal access to treatment in Canada.

Law

The Patented Medicine Prices Review Board (PMPRB), who acts as a regulatory watchdog for pharmaceutical pricing in Canada, filed a statement of allegations against Alexion Pharmaceuticals on January 15th of this year regarding the price of the drug Soliris. The statement claims that Alexion has, since 2012, sold Soliris to Canadians at an excessive price and demands that the company bring its pricing down to reasonable levels.

On September 11th, Alexion Pharmaceuticals filed a countersuit through the Federal Court in an attempt to block the PMPRB’s hearing. Alexion is seeking a writ of prohibition pursuant to s.18 of the Federal Courts Act on the grounds that the Board’s claim lays ultra vires federal jurisdiction. They allege that pharmaceutical pricing falls under provincial powers pursuant to s. 92(13) of the Constitution, which grants regulatory jurisdiction in matters of property to the province.

Now, s.83 of the Patent Act imbues the PMPRB with rights to enact the following:

(a) reduce the price at which the patentee sells the medicine in any market in Canada, to such extent and for such period as is specified in the order;

(b) reduce the price at which the patentee sells one other medicine to which a patented invention of the patentee pertains in any market in Canada, to such extent and for such period as is specified in the order; or

(c) pay to Her Majesty in right of Canada an amount specified in the order.

However, Alexion’s challenge will ask the federal court to rule on whether s.91(22) of the Constitution, which addresses “Patents of Invention and Discovery” and would allow the Board’s motion to proceed, has supremacy over s.92(13).

A Federal Court ruling in favour of Alexion, if not appealed, would establish precedent that handcuffs the PMPRB due to the division of powers in the Constitution. If the Board is incapacitated in this way, it would fall to Provincial Governments to impose limitations on pharmaceutical prices.

Policy

Canadians in need of pharmaceutical treatment already face inequality due to coverage variations from province to province. Since each province decides what its own system will cover, and for what disease – Ontario just recently approved coverage of Soliris prescriptions for aHUS – those in need of life-saving medicine could find themselves fighting an uphill battle for no reason other than holding the wrong health card.

A ruling in this case that places pharmaceutical pricing regulation in provincial hands would likely exacerbate these inequalities. Unless the provinces work together on parallel legislation imposing the same restrictions in every jurisdiction, then disparities in pricing could have serious detrimental effects concerning access to Soliris.

Whether, and how much, each province chooses to limit the sale price of particular pharmaceuticals could drastically affect which Canadians have access to the treatment they need, the cost, and who pays. Provinces could, with both options under their jurisdiction, justify the exclusion of such drugs from public coverage with a limit on the sale price. Rather than work orphan disease treatments like Soliris into the healthcare budget, a province could instead claim the imposition of a “reasonable” price as having done its duty to the patients and insurers who would have to bear the cost.

Alternatively, disparities in price caps from province to province could result in drugs like Soliris becoming unavailable in certain jurisdictions. Alexion has no obligation to offer the drug in every jurisdiction, and would have no reason to distribute in provinces with heavy restrictions on pharmaceutical pricing. Canadians whose lives depend on such treatments would then have to move or travel in order to seek the care they need.

It would seem far more appropriate, then, for the Federal Government and the PMPRB to retain their regulatory powers over pharmaceutical pricing. While federally imposed price caps cannot guarantee that every province will elect to cover the treatment, the lower costs make coverage more appealing while the nationwide consistency ensures equal access and availability to every Canadian. While a pharmaceutical company like Alexion could feasibly limit distribution to provinces with favourable price caps, it seems highly unlikely that a nationwide cap would drive them to withdraw from Canadian markets entirely.

Conclusion

That a life-threatening condition occurs in only a small percentage of the population should not preclude those patients from equal access to treatment in Canada. While the PMPRB has sought to reduce the burden on Canadian healthcare and increase accessibility to treatment by imposing a limit on the excessively priced Soliris, the countersuit by Alexion threatens to produce a ruling that could destabilize the availability of pharmaceuticals due to provincial disparities in regulation. To preserve and enhance equal access to medical treatment across Canada, the Federal Court should reject Alexion’s countersuit and uphold the Board’s power to regulate pharmaceutical prices at the federal level.

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