Toward a Treatment Access Bill of Rights by CTAC

Toward a Treatment Access

Bill of Rights Reviewing Patient Rights for People Living with HIV

CTAC is Canadaâ&#x20AC;&#x2122;s national civil society organization addressing access to treatment, care and support for people living with HIV. CTAC meaningfully engages community members, service providers, policymakers and researchers to identify develop and implement policy and program solutions. ÂŠ 2013, CTAC (Canadian Treatment Action Council). All rights reserved. This discussion paper is available at www.ctac.ca Writer Paul Sutton Art Director Nicole Roswell, Phoenix Creative Permission to reproduce this document is copyrighted. It may be reprinted and distributed in its entirety for non-commercial purposes without prior permission, but permission must be obtained to edit or otherwise alter its content. The following credit must appear on any reprint: This information was provided by CTAC. For more information contact CTAC at 1-877-237-2822 or www.ctac.ca.

The Right to Health: background Who has the Right to Health? All of us do, or so we should. The vast majority of us believe all people in the world have the right to protect their health by seeing a doctor, getting access to medications when they are sick, and to live in a healthy environment. While this is true, we also know a person’s health is largely dependent on where they live, how much money they have, their gender, race and/or sexual orientation. These, amongst other social and structural factors, are often referred to as the determinants of health.1 In the political sense, “health rights” describe the relationship between human beings and the systems or institutions through which they access medical care. These systems and institutions can include hospitals, family doctors, sexual and reproductive health clinics, prescription drug plans, and rehabilitation services, amongst others. Each of these health systems have rules and regulations setting conditions under which people are and are not allowed to access treatment, care and support. These can include payment arrangements (ie. different treatments a public health plan will and will not pay for), clinical limitations (ie. what stage of disease progression a person must be at before treatment is offered), or codes of conduct (ie. rules outlining the acceptable behaviours of a doctor or a patient).

Collective and Individual Rights In essence, the right to health is the economic, social and cultural right to the highest attainable standard of health.2 This is recognized in the Universal Declaration of Human Rights,3 the International Covenant on Economic, Social and Cultural Rights,4 and the Convention on the Rights of Persons with Disabilities.5 Canada is a signatory to each of these declarations. Generally speaking, health rights can be broken down into two categories: collective rights and individual rights. • Collective rights are rights that all of us have through general rules set out in the health system (ie. in Canada, all citizens have free access to general medicine) • Individual rights describe good practices that we, as patients, can expect in our one-on-one interactions with the health system (ie. confidentiality of patient records or freedom from discrimination based on health status)

In Canada, the federal government, through the Canada Health Act, sends funds to provincial and territorial governments to run health systems that are mandated to provide care to all citizens. Beyond Canada, of the world’s 192 countries, 75 have legislated universal access to health services, but only 58 of those meet the threshold of providing more than 90% of their citizens with health insurance.6 Health access through this kind of legislation is an example of collective rights. In Canada, however, we know health access varies across the country, largely based on geography (ie. differences in care for rural and urban Canadians, as well as newcomers or indigenous peoples), broader determinants of health (especially income security, housing security, food security and mental health), as well as institutional settings (ie. poorer health outcomes are observed amongst incarcerated Canadians).7 To address these issues, some politicians and civil society organizations have advocated an individual rights approach, especially in the face of an increasingly complex health system where patients have become more knowledgeable, thereby demanding a stake in decision-making.8 This is especially relevant for people living with HIV, many of whom advocated for the very treatments and health responses that now, by and large, have made it possible to treat HIV as a chronic, manageable illness. As it becomes possible to treat HIV this way, it is paramount to ensure health systems eliminate barriers to ensure all people with HIV can maximize their health outcomes.

Toward a Treatment Access Bill of Rights for People Living with HIV Following the 2012 Board and Council AGM meeting, CTAC has prepared this discussion paper to support the work of community members, researchers, policymakers and service providers in producing a Treatment Access Bill of Rights in Canada. In this paper, we will review: • The Canada Health Act, and the role it plays in funding and evaluating health care services across Canada • Patient rights legislation in Québec and attempts at patient rights legislation in other provinces and internationally • Existing HIV-specific patient rights documents • What individual and collective rights are needed to specifically address access to treatment? • What social change is needed for us to fully enact this Bill of Rights?

Patient Rights: current legislation Canada Health Act In Canada, federal legislation called the Canada Health Act sets out the “template,” or arrangement, by which medicare in Canada is provided and paid for.9 In Canada, about 20% of total funding for health care is collected by the federal government, and then transferred to each province and territory, who, in turn, is responsible for running their own health systems.10

The Canada Health Act requires provinces to provide medical services, all of which can be considered collective health rights – services that must adhere by the following five guidelines: • Public Administration: Health care services must be administered on a not-forprofit basis either by the provincial or territorial government directly or by an arms-length organization reporting directly to the government. • Comprehensiveness: This sets the scope of publicly funded health services, which includes hospital care, physician services, and dental care (when performed in a hospital). • Universality: All residents of a province or territory must receive health care. • Portability: Any residents moving between provinces or territories must remain covered by their previous province or territory of residence for a three-month period while they establish residency elsewhere. • Accessibility: All residents have a right to a consistent standard of care.11

Health Canada generates a report every year on health care services funded by the Canada Health Act, which the federal Minister of Health, in turn, provides to parliament. This report also documents any disputes between the federal and provincial or territorial governments over funding or service provision,12 although criticisms have arisen that the report is not sufficiently comprehensive to identify all violations of the Act.13 In rare cases, the federal government has withheld or recalled funds from provinces for violating the Canada Health Act.14 A number of issues with the Canada Health Act have emerged in recent years, primarily due to health cost escalation, and concerns about privatization and the introduction of profit-making sectors of the health system, resulting in inaccessibility of services.15

Additionally, at a late 2011 First Ministers Meeting, Conservative Finance Minister Jim Flaherty announced that after 2016-2017, federal contributions under the Canada Health Act will align with increases in the nominal gross domestic product (total economic growth plus inflation).16 This presents a huge challenge to provinces and territories, because it is projected that annual increases to total health care spending will double between now and 2030. This rate is wildly outpaces inflation – even at the most optimistic forecasts of economic growth.17 While the Canadian health system is built on a collective rights framework, these large-scale challenges are experienced every day, in many different ways, by patients individually accessing care – whether through long wait-times for referrals, challenges getting access to new treatments, or transferring health coverage when moving from province to province. These challenges have led some legislators and civil society leaders to seek increased individual health rights through patient rights legislation. Most often, when a person is talking about a Patient Bill of Rights, they are promoting rights that can be demanded by individual patients and/or representative groups.

Patient Bills of Rights: Canadian and international benchmarks Québec is the only province in Canada with active patient rights legislation covering all citizens accessing the health system. Québec’s patient rights legislation is incorporated into the broader Loi sur les services de santé et les services sociaux (1991) which governs delivery of health and social services in the province. This law grants patients the right to: • be informed of the existence of the health and social services resources available in the community and the conditions governing access to the services • receive health services in a continuous and personalized manner which are scientifically, humanely and socially appropriate • choose the professional from whom or the institution from which health services are to be received • receive the care required when life or bodily integrity is endangered • be informed of the state of one’s health and options for care prior to giving consent to care • participate in decisions affecting one’s care 18 To ensure patients are granted these health rights, and to rectify situations in which rights are breached or provided insufficiently, Quebec’s law outlines a process for individually-initiated complaints. This process is initiated first to the medical institution in question, and then to regional and provincial-level ombudsperson bodies, as required. Importantly, the law contains a clause limiting these rights based on need for fiscal constraint, making their enforcement subject to the adequate health system funding.

Federal patient rights legislation was attempted in 2001 and failed, and other provincial attempts have been made elsewhere in Canada, including Alberta (1998), Ontario (1999), Nova Scotia (2000) and New Brunswick (2002). Each of these proposed frameworks reflected the right to information, right to accessible services and emergency services and right to informed consent and active participation in care (similar to Québec’s law), although some of the proposed legislation went quite a bit further: • The proposed federal patient bill of rights (2001) specifically named access to treatment and patientcentered treatment decision-making. Additionally, the proposed federal bill would have applied the same enforcement mechanism and evaluation measures (withholding transfer payments) as the Canada Health Act. • The proposed Ontario legislation (1999) specifically addressed conduct of doctors and other health professionals toward patients, including individual dignity, respect for cultural needs and religious customs, respect for human rights and freedom from harassment or abuse. • Expectations for Health and Health Care in Nova Scotia (2002) is a non-binding set of guidelines produced by the Nova Scotia Health Council that extensively details particular health rights, including language accessibility, types of medical services all Nova Scotians can expect, and provider conduct. The Expectations also specifically enumerate the “eradication of intersectoral and other barriers to ensure better health and health care” and “equitable allocation of resources” as system-level goals required for a functioning health system. This is the only Canadian patient rights intervention, proposed or legislated, that identifies social change outside the health system as necessary for increased rights and health outcomes. Outside Canada, New Zealand and Norway have active patient rights legislation, including rights to be treated with respect and freedom from discrimination, confidentiality, informed choice and informed consent, as well as the right to choose and refuse treatment, including participation in research or instruction. In the United Kingdom, the National Health Service was subject to patient rights legislation until 2004, when legislation was cancelled in favour of a non-binding guide to patient rights and responsibilities. Australia does promote patient rights, but includes rights expectations in individual financial contribution agreements between the government and local health delivery systems.

Patient rights for people living with HIV Patient rights legislation has stalled in Canada since the early 2000s, but recently, two patient bills of rights have been created to address the specific health needs of people living with HIV. The first was authored by the Canadian AIDS Society (CAS) in 2009, while in 2012, a declaration addressing health rights for Québécois people living with HIV was released by the Coalition des Organismes Communitaires Québécois de lutte contre le sida (COCQ-SIDA).19

The following themes reflect the health rights common to both documents: • Care that is free from stigma and discrimination • Up-to-date, current treatment information, including complementary and alternative medicines (especially in cases of antiretroviral treatment failure) • Shared decision-making about treatment and care • Confidentiality of sero-status and medical records • Honouring an advance directive/living will • Professional, respectful treatment from health care providers, including using standard precautions, having sufficient time to discuss concerns and questions, openness about third-party provider relationships (including with drug plans and pharmaceutical companies), and the right to a second opinion or transfer in care • Assistance to overcome linguistic, cultural or physical barriers

Importantly, COCQ-SIDA’s Declaration also includes rights falling outside the traditional boundaries of the medical system: that people living with HIV have the right to work and education and reasonable accommodation, to a satisfying professional life, migration and immigration rights, as well as fulfilling social and emotional life. 20 Both COCQ-SIDA and CAS’s bills of rights also identify responsibilities of people living with HIV when engaging with medical care and the HIV response at large. In the CAS Bill, responsibilities are relegated to the doctorpatient relationship, including the responsibility to ask questions (especially regarding pain management), provide complete information, and, as in the COCQ-SIDA Declaration, take responsibility to follow an agreedupon treatment plan. The COCQ-SIDA Declaration goes on to discuss social responsibilities of people living with HIV, promoting active civic participation, solidarity with other people living with HIV and anyone touched by discrimination, and fighting against prejudice, stigma, trivialization, rights violations and discrimination.

The COCQ-SIDA Declaration integrates the Greater Involvement of People Living with HIV and AIDS (GIPA) Principles throughout its document, explicitly addressing medical care and the active civic life of people living with HIV. The CAS Bill addresses medical care in more detail, identifying the centrality of people living with HIV in being informed about treatment and care options and to have autonomy over decision-making, freely giving consent to care as well as participation in teaching and research, and to have an advance directive/living will respected by practitioners. Outside of Canada, patient rights documents for people living with HIV are limited, although civil societyproduced bills of rights have been produced by Los Angeles County Commission on HIV and the Saudi Arabia National Human Rights Society.21

Why a Treatment Access Bill of Rights? Beyond the themes identified in patient rights legislation and the HIV-specific, civil society-produced rights documents described above, CTAC exists because of specific barriers preventing full treatment access for people with HIV in Canada. After all, 30 years into the epidemic and with an arsenal of effective antiretroviral therapies capable of keeping people living with HIV alive for decades, not everyone has access to treatment – even in a wealthy industrial country like ours.

Here are some things we know about treatment access in Canada: • Not enough people have access to HIV treatment. A recent study from the British Columbia Centre for Excellence (BCCfE) showed that in British Columbia, Québec and Ontario, where 90% of Canadians with HIV live, only 32 to 45% of people living with HIV are currently on antiretroviral therapy.22 • HIV treatments need to be improved. Although most people, working with their doctor, can find an antiretroviral combination that controls their HIV, long-term use of antiretrovirals is highly associated with neuropathy, as well as liver and kidney toxicities. Antiretroviral technology needs to be improved to minimize toxicities. Additionally, gender-specific studies need to be widened to better understand increased side effects faced by women living with HIV.23 • Not all HIV treatments are available across Canada. Provinces and territories with smaller populations and, as a result, lower health budgets, have difficulty funding new, expensive antiretrovirals. As a result, people who live in these provinces and territories do not have the same health access as those in larger, wealthier provinces. • HIV care coverage must be comprehensive. Many people with HIV face additional costs associated with managing side effects, sometimes known as “treating the treatment.” Due to Canada’s current HIV criminalization context, people with HIV require increased access to improved viral load diagnostic testing. • Social vulnerability correlates with poorer treatment access. People who use drugs, people who are incarcerated, newcomers to Canada (including undocumented workers), indigenous people (including those residing in urban, rural and reserve settings), and women with insecure housing and/or facing domestic violence, all report lower levels of treatment access. Universal treatment access cannot be achieved without broad social change work and policy shifts, like reforming drug, incarceration and immigration policies, as well as ending racism, sexism, colonization, xenophobia, homophobia, transphobia and, of course, serophobia.

â&#x20AC;˘ Access to new HIV medications may become increasingly limited. For the first time in the HIV response, antiretrovirals that are still in use are about to come off patent, while at the same time, provincial and territorial governments facing budget deficits are proposing health system reforms. Innovative medications are necessary to achieve successful treatment experiences for all people with HIV.24 New, improved treatments may no longer be able to demonstrate sufficient cost-effectiveness in comparison to less tolerable, off-patent antiretrovirals.25 â&#x20AC;˘ Treatment decision-making autonomy must be protected for people living with HIV. As policymakers and researchers increasingly trumpet the onward prevention benefits of antiretroviral therapy, it is of crucial importance to protect the treatment decision-making autonomy of people living with HIV. Onward prevention benefits are but one decision-making factor amongst many, including long-term health, side effects, tolerability and treatment-related costs. â&#x20AC;˘ Additional and ongoing support is required for HIV cure research and development. Antiretroviral therapy is only one part of the treatment access map, and must be framed as one step on the way to a future where a cure is available for all people living with HIV.

Each of these treatment access issues can be improved with rights interventions at the individual and collective levels. When envisioning what rights we would like to identify and advocate for, let us also consider what kind of social change we would like to see happen as a result of these rights. To put it another way, how will we know if we have been successful? What social conditions will have changed? Consider some potential treatment access rights and how their applications (in the form of alternative policy outcomes and changed relationships between people with HIV and the health systems they access) may be different at individual and collective levels, and what kinds of social change they may make:

RIGHT

INDIVIDUAL

COLLECTIVE

SOCIAL CHANGE

All people with HIV in Individuals with HIV have Canada have a right access to health plans to access treatment. that provide the best possible/most appropriate treatment option.

Treatment access programs (like catastrophic drug programs) are sufficiently funded and are guided by policies that competently express the unique health needs of people with HIV.

Comprehensive universal pharmacare makes effective HIV treatment available to all Canadians who need it.

All people with HIV in Canada have access to comprehensive treatment.

People with HIV have access to all available treatment options and sufficient means to access necessary complementary therapies.

Treatment access programs (like catastrophic drug programs) ensure all recommended treatments are listed on the formulary and expand coverage for complementary therapies.

Provinces and territories act collectively to purchase drugs together to reduce costs and promote universal standards for comprehensive drug listings.

All Canadians with HIV, despite social location, have access to treatment.

People who have difficulty adhering to treatment have access to treatment outreach and/or peer navigation programs; incarcerated people with HIV have continuous access to treatment; women have access to gender-specific treatment options.

Treatment outreach and peer navigation programs are available and integrated across clinical and community settings; HIV-competent policies integrating clinical care and community support are established across corrections systems; gender-specific treatment guidelines are developed and promoted.

The medical system successfully integrates GIPA principles; increased health rights are achieved in corrections settings; health outcomes for women are improved.

All people with HIV Individuals have a right in Canada have to the best available consistent access to antiretroviral treatments. treatment, regardless of national or international economic factors.

HIV-specific drug approval guidelines are developed and integrated across health technology assessment (HTA) programs (like the Common Drug Review and Lâ&#x20AC;&#x2122;Institut national dâ&#x20AC;&#x2122;excellence en santĂŠ et en services sociaux).

Tax incentives for pharmaceutical companies are targeted to limit catastrophic drug costs and to encourage innovation/ development. Free trade agreements promote intellectual property rights that contain pharmaceutical costs.

An HIV cure is a national and international priority.

Research funding bodies develop and enact guidelines that balance antiretroviral and cure research and development.

Governments around the world work together to promote HIV research and development based on the most up-to-date existing evidence.

Individuals are informed of realistic information and timelines regarding cure development.

As we work together at the â&#x20AC;&#x153;Drafting a Treatment Access Bill of Rightsâ&#x20AC;? session at CAHR 2013, it is important to consider the following things: 1. What would a world look like where treatment access has been improved? 2. How should we write a set of rights that can be used to demand the improved social and medical environments we seek? 3. Do these rights apply at the individual and collective levels? Do they need to be articulated differently to apply to both?

Taking Action on a Bill of Rights The Treatment Access Bill of Rights we will create together at the CAHR 2013 ancillary session is not a theoretical exercise. It is a practical first step for CTAC as we inform conversations and consultations that are happening on an ongoing basis about how pharmaceutical development will be subsidized in Canada, how trade agreements will apply to HIV treatment access, and how people with HIV will have ongoing access to treatment in a changing health system supported by fewer financial resources. While drafting these rights, it is important to also consider what we need to do to make a Bill of Rights achieve impact, and how we will know what impact it has had. In this way, we need to integrate both enforcement and evaluation into CTAC’s Treatment Access Bill of Rights.

Evaluation One significant problem in monitoring levels of treatment access in Canada is that very limited information exists about how many people are actually on treatment. In order for CTAC to monitor the effectiveness of a Treatment Access Bill of Rights, data collection about HIV care must be expanded and made more accessible. Here are some key research questions that need to be answered in order to generate a more accurate understanding of treatment access in Canada: • How many people living with HIV in Canada are on treatment? • How do the total numbers of people living with HIV in Canada on treatment change annually, and in what ways? • What provinces and territories have lower levels of treatment access? • Which provinces and territories accurately and adequately collect and share data on the continuum of HIV treatment and care? • How many people with HIV are accessing treatment through HIV-specific clinics, in hospital settings, through family physicians, etc.? • How many people with HIV are accessing treatment through government-run or community-level compassionate access programs? • How often do people lose access to treatment when entering and exiting incarceration settings? • How often are people losing access to treatment when the move between provinces?

Enforcement Earlier, when we discussed the Canada Health Act, we explained how the federal Minister of Health delivers a report to parliament every year on how well provinces and territories are meeting the Act’s mandate for public administration, comprehensiveness, universality, portability, and accessibility. While parliament has the right to revoke funding to provinces and territories who fail to meet one or more of these criteria, parliament has also developed (granted, with greater and lesser levels of success) mechanisms to proactively manage instances in which provinces and territories may be at risk of convening the Act. 12

On a smaller scale, a large number of hospitals across Canada have produced their own Patient Bill of Rights, which allows patients know what rights and responsibilities they can expect while accessing care, in addition to providing an effective and accountable complaints mechanism if things go wrong. It is best to proactively incorporate enforcement measures into CTAC’s Treatment Access Bill of Rights, keeping in mind that some institutions are more likely than others to sign onto the Bill of Rights. In this, it is important to consider the working relationships CTAC enjoys with governments and organizations, along with these concerns: • Who (ie. governments, organizations, clinics, practitioners, etc.) do we wish to accept and enforce our Treatment Access Bill of Rights? • What aspects of our Treatment Access Bill of Rights are reasonably enforceable by organizations and individuals? • What measures or resources are required to enforce the Treatment Access Bill of Rights? • Are these measures or resources that are easy to use and integrate within existing data collection and evaluation schemes? Thinking about the treatment access issues we addressed in the previous section, there is room for a number of different actors to take action in support of our Bill of Rights – be them legislators, government representatives, policy organizations, research funders or medical service providers.

Once the Treatment Access Bill of Rights has been developed, CTAC plans to take it in the following directions: • Supported by a petition, send the Treatment Access Bill of Rights to federal, provincial and territorial governments, demanding legislative action. While legislative action may be out of reach, it is always important to connect with allied legislators to promote increased health and human rights for people living with HIV. • Work in coalition with other organizations promoting patient rights in Canada. The Canadian Medical Association, amongst other patient groups, is renewing the conversation about patient rights in Canada. CTAC’s Bill of Rights can bolster support while including HIV-specific needs in the broader patient rights movement. • Work with Health Technology Assessment organizations to develop guidelines to be applied when assessing new HIV medications and related technologies. Because all new mediations are assessed for safety, efficacy and cost-effectiveness by either the Common Drug Review (CDR) or, in Québec, l’Institut National d’Excellence en Santé et en Services Sociaux (INESSS), drug approval guidelines that reflect the often-individualized health needs of people living with HIV can be a great step forward to ensuring ongoing treatment access. • Support members working with physicians and clinics to incorporate the Treatment Access Bill of Rights as organizational policy. CTAC is always interested in building capacity amongst our members and partners to create positive change in their local communities. If you think your doctor, clinic or community-based organization would be interested in signing on to the Treatment Access Bill of Rights, but are not sure how to ask, contact us and we will walk you through the steps. 13

Drafting a Treatment Access Bill of Rights: what to expect at the CAHR 2013 ancillary session Now that you have read this discussion paper on access to treatment and patient rights in Canada, you are ready to participate in the Drafting a Treatment Access Bill of Rights ancillary session at CAHR 2013.

Before the session, think about the following things: • What is the biggest treatment access barrier you see in your local community? • What do you think can be done to fix that treatment access barrier? • Try expressing “what you think can be done” as a right (ie. All people living with HIV should have the same access to treatment, no matter what province they live in). • Who, in your community (individuals and/or organizations) could help enforce this right?

At the session, there will be presentations on: • Current patient rights work being done in Canada • Treatment access in Canada: barriers and opportunities • What can be accomplished with a Bill of Rights After the presentations, you will have the opportunity to discuss and work with community members, researchers, policymakers and service providers from across Canada to identify what themes should be highlighted in a Bill of Rights, and to envision ways to move treatment access rights forward across the country. We look forward to your participation in the “Drafting a Treatment Access Bill of Rights” event, and we will see you in Vancouver on April 11th.

See World Health Organization, “Social Determinants of Health.” Available: http://www.who.int/social_determinants/ en/. See also Public Health Agency of Canada, “What determines health?” Available: http://www.phac-aspc.gc.ca/ph-sp/ determinants/index-eng.php

For more on the World Health Organization’s definitions on the “right to health,” see: http://www.who.int/hhr/en/.

See United Nations, Universal Declaration of Human Rights. Available: http://www.un.org/en/documents/udhr/index.shtml.

See United Nations, International Covenant on Economic, Social and Cultural Rights. Available: http://treaties.un.org/Pages/ViewDetails.aspx?mtdsg_no=IV-3&chapter=4&lang=en

See United Nations, Convention on the Rights of Persons with Disabilities. Available: http://www.un.org/disabilities/ convention/conventionfull.shtml.

Struckler, David et al. The political economy of universal health coverage. Presented at the First Global Symposium on Heatlh Systems Research, Montreux, Switzerland, 16-19 November 2010. Available: http://www.pacifichealthsummit.org/ downloads/UHC/the%20political%20economy%20of%20uhc.PDF

See Correctional Service of Canada, Summary of Emerging Findings from the 2007 National Inmate Infectious Diseases and Risk-Behaviours Survey (Ottawa: CSC, March 2010). See also Canadian HIV/AIDS Legal Network, “Prison Needle and Syringe Programs: Policy Brief.” Available: http://www.aidslaw.ca/publications/interfaces/downloadFile.php?ref=1976.

Margaret Smith, Patient’s Bill of Rights – A Comparative Overview. (Ottawa: Law and Government Division, February 2002). Available: http://publications.gc.ca/Collection-R/LoPBdP/BP/prb0131-e.htm.

Canadian Union of Public Employees. Defending Medicare: A Guide to Canadian Law and Regulation. Ottawa: CUPE Research, 2008. Available: http://cupe.ca/updir/DefendingMedicare.pdf

See CUPE 2008, Smith 2002.

See Smith 2002 for additional definitions. To read the Canada Health Act in its entirety, it is available online: http://lawslois.justice.gc.ca/eng/acts/C-6/

A Fact Sheet on the Canada Health Act Dispute Avoidance and Resolution Process, established in 2002, is here: http:// www.hc-sc.gc.ca/hcs-sss/pubs/cha-lcs/2012-cha-lcs-ar-ra/index-eng.php#annc

See the Canada Health Coalition’s discussion of under-reporting private medical facilities in the Act’s Annual Report here: http://medicare.ca/canada-health-act-report/langswitch_lang/en

Transfer payments were withheld from British Columbia in 1993 and Alberta in 1996, both as a result of private clinics incurring on public services.

See CUPE 2008. See also the recommendations in the Canada Health Coalition’s document A Call to Care (2012), available: http://healthcoalition.ca/main/resources/a-call-to-care/

See John Ibbitson, “By attaching no strings, Flaherty binds irate provinces to health plan.” The Globe and Mail, 20 December 2011. Available: http://www.theglobeandmail.com/news/politics/by-attaching-no-strings-flaherty-binds-irateprovinces-to-health-plan/article1360375/

For the case of Ontario, see Dwight Duncan, Ontario’s Long Term Report on the Economy (2010), available: http://www. fin.gov.on.ca/en/economy/ltr/2010/ch3.html

See Province of Québec, Loi sur les services de santé t les services sociaux (1991). Available: http://www2. publicationsduquebec.gouv.qc.ca/dynamicSearch/telecharge.php?type=2&file=/S_4_2/S4_2.html

Canadian AIDS Society (CAS, 2009), Doctor and Patient Bill of Rights. Available: http://www.cdnaids.ca/ doctorandpatientbillofrights.

COCQ-SIDA (2012), Déclaration des droits et responsabilités des PVVIH. Availble: http://www.cocqsida.com/mediatheque/ positions-et-declarations/declaration-des-droits-et-responsabilites-des-pvvih.html

See “Saudi Arabian human rights society publishes recommendations for Bill of Rights for HIV-Positive people,” The Body, 6 August 2007. Available: http://www.thebody.com/content/art42603.html?ic=2004

See Hogg et al. “Disparities in the Burden of HIV/AIDS in Canada.” PLOS One 7.11 (November 2012): e47260.

For more information on treatment access needs facing women with HIV in Canada, see CTAC’s Factsheet: http://ctac.ca/ uploads/Fact%20Sheets/Women%20Fact%20Sheet%20-%20Final.pdf

In December 2012, CTAC consulted with our members to generate evidence in support of a Common Drug Review patient group submission on a new antiretroviral treatment. In this consultation, we found that despite that more than 50% of respondents had lived with HIV for a long time (25 years or more), time on current therapy for all respondents was only 1-4 years. This suggests that new treatments are frequently required for the HIV-positive patient population and, as a result, pharmaceutical innovation is critically important in protecting the long-term health outcomes of people living with HIV.

For more information, see CTAC’s discussion paper series on Canada’s changing treatment access landscape. The first discussion paper in this series, Free Trade or Treatment Access? CETA, the TPP, and health outcomes for people living with HIV is online at http://www.ctac.ca.