(My apology for the length of this, but I wanted to have a thorough look at the Act. What follows is intended less as sheer criticism and more as concerns that can hopefully be addressed, but I that hope people will remember why there is sometimes a lack of optimism. Although the Trans Equality Society of Alberta (TESA) is mentioned, I write this as a concerned citizen and member of the trans community, and not on TESA’s behalf. Over the past couple weeks, several things have happened that I’ve not had the ability to comment on, so I’m playing catch-up.)
The Stelmach government released the Alberta Health Act in mid-September. Given that the Standing Committee on Health brushed off the trans community and TESA, under the assertion that trans health issues were “outside the scope” of the Committee’s mandate in drafting the Act, it’s not surprising that there was a bureaucratic intention to shut out any questioning of the process from trans people, and therefore avoid facing the lessons that the 2009 decision to delist Gender Reassignment Surgery (GRS) provide for all Albertans.
The report offers fifteen key recommendations that it considers the framing components of the Alberta Health Act. The fifth of these requires “the establishment of a Health Charter and make it explicit in the Act that the Health Charter will:”
“Not be subject to or be the basis of litigation within the court system.”
Rather than the courts, the proposal states that Health Charter-related issues are only to be taken up with a “Health Advocate that reports to the Minister of Health and Wellness.”
Now, I still haven’t been able to find any clarification on this point. I don’t know if this is simply a way of saying that the Act would need to function as a policy rather than a law, and therefore not create legal consequences for anyone with whom it conflicts? That itself could be problematic, but the alternative might be worse, if it in any way exempts the government from legal action on health issues. Does it open the door for the government to add, say, a specific exemption within the Act (now or via amendment) for Gender Reassignment Surgery (as was done with the public health option in the US this year), a specific exemption for abortion (as was also done in the US), a specific limit on obligations to people in the penal system (if that sounds far-fetched, remember that last year, this government also mused about recouping some health care expenses by suing criminals for any health costs considered to result from crime, something that only perpetuates a cycle of poverty that drives many to crime in the first place), a specific limitation on cancer treatment if the patients are currently or were smokers, etc, and then shield them from court action? Does this become a means to shield the government from accountability to Albertans?
I would still like an answer to that one. Above all else in that report, this seems to me to be a key question, perhaps a bigger one than whether an Alberta Health Act is needed in the first place, given that the government may do what it usually does and just ram it through anyway.
There is a deflection at the beginning of this report, to shift responsibility for health care. It’s right in the dedication at the beginning, made to sound like it was the public’s idea.
When Gender Reassignment Surgery was delisted in 2009, the public largely acknowledged that serious consideration is needed if the medical establishment considers something medically necessary. Many Albertans demonstrated an ability to look past assumptions, to respect others even if they didn’t always understand them, and to give voice to the fact that no matter how strange a population may seem, it is unacceptable to negatively target them in a matter of public policy. I don’t know if it was necessarily a “majority” of Albertans who stood up in this way, but those who did were significant to us and appreciated, and in return, I feel it’s necessary to comment on the ongoing changes in health care for Albertans, and where our experiences also reveal potential risks to others.
“10. Establish processes of public engagement with respect to:
• The development, amendment or repeal of strategic government policies, statutes, or regulations relating to the health system; and
• Consultation on the health system generally, including local health priorities.”
While we’re thankful for the reception that Albertans gave, we do see concern in focusing on perceptual public consultation in one respect: there may, in fact, be communities outside ours that the public might feel less sympathetic toward. Should treatment for lung cancer be discontinued if the patient is a smoker? It’s possible that a segment of the public exists that would support such a thing, and could become visible and vocal about it. Certainly, convicted criminals could become at risk in such a scenario. There is a portion of the public that believes that homosexuality needs to be cured by aversion therapy, but this is recognized as harmful and damaging by every major medical body in Canada and the US. While there are requirements in Albertans’ health that might be “controversial” among non-medical professionals, the province does have a responsibility to providing health coverage based on quantifiable medical research.
How popular one is should not be a factor in how much access one has to health care. While it IS certainly important to consult with Albertans who are at risk of losing services, a problem develops if greater emphasis is placed on (possibly targeted, considering TESA’s shut-out from Alberta Health Act discussions) public input, than on evidence-based decision-making done in consultation with the medical professionals who deal directly with the patients concerned.
This was, for example, not done in the case of GRS, and is still not resolved by the “phase out program,” which is essentially a way of saying “we know that you have a valid case, but hopefully the next generation of trans people won’t recognize that.” The delisting of GRS depended on the public’s ignorance — there are indications that the Act proposed here will do the same. There are, for example, key differences between “public health care” and “publicly-funded health care.”
Greater weight on public opinion also opens the door for Albertans to have to compete with each other whenever health funding is reduced, if the discussion becomes framed as “here is how much money you have, now you decide what gets priority.” This is a divisive tactic, and could potentially result in debates about whether services to, say, diabetics should be of greater priority than those needed by people injured in motor vehicle accidents. I’m exaggerating, but the point is that the question of health care is becoming less of one about fair access and streamlining service and more of one about who is the most deserving of quick care or even coverage at all. Once we allow the debate to be framed in this way, someone is going to lose.
It should also be noted that a grouping of people that shows up to talk about health care is not always representative of the public at large, or even representative of the population being considered in a particular situation — especially if that population is disenfranchised and does not feel empowered enough to speak or confident enough to feel that it will make a difference. And it is especially not representative if the public in attendance does so — as was the case with the consultations done to generate this report — by invitation only.
Access and Prevention
The report lists what it calls Albertans’ Priorities for Action. At the top of the list:
• Put people first and help Albertans navigate the health system;
• Shift the focus of the health system from illness to wellness;
Access remains a top concern, with few doctors able to take on new patients at all, let alone those who are experienced in specific segments of health. The same morning the Act proposal was released, I heard from a Calgary therapist who is unable to locate a physician willing to take on new trans patients and monitor their endocrine levels while hormone therapy is administered. I’ve heard five other inquiries in the weeks since: two from Alberta Health professionals and three from the trans community. It is my hope that “helping Albertans navigate the health system” means taking measures that will provide access for ALL Albertans, rather than use the eroded and slashed system we have now as justification for downloading emphasis for health onto citizens so that they need to turn to a private health care system that prioritizes based on wealth. In 2010, it’s deplorable that we still have to maintain a “trans-friendly doctors” list across Alberta that records who is trans-friendly and trans-aware (i.e. open to learning about the WPATH standards of care, rather than avoiding trans patients on the basis that “I don’t know anything about this”) — and none of the family doctors on that list have been able to take on new patients, for at least the past two years (we’re always looking for more, if you know any).
Likewise, shifting focus from illness to wellness is a very positive step, if that means that the Province is realizing the need for better emphasis on preventive health care, including the mental health of its citizens, which has been badly neglected to date. But until the Province reconsiders its restated intent to “phase out” GRS rather than full reinstatement, I remain skeptical, as should all Albertans. Again as an example, GRS provides something that is more than “cosmetic,” and more than “preventive.” As one trans writer recently wrote at the blog Questioning Transphobia:
What it is like for me is pain. It is the pain of having your skin wrapped badly around your body, fitting awkwardly at best. Reminding you that everything is wrong whenever you move, whenever you go to the toilet, whenever you undress, whenever you shower, whenever you wake up, whenever you go to bed, whenever you see a mirror. It is a constant pain. Everything reminds you of it – the pronouns others use for you, the name others use for you. The clothes you wear.
It’s like living in a world where everything is made of sandpaper and it’s always grinding into your skin – your skin that does not fit your body.
You know what your body should be like, should look like. That you have parts you should not and do not have parts that you should. Your body does not behave like it should, move like it should, smell like it should. Your skin is the wrong texture. Puberty changes your body in ways that alienate you further from your own ill-fitting skin. Your voice is wrong, your face is wrong, your chest is wrong, body hair and facial hair are wrong. Some of your internal organs are wrong. In some ways, your skeleton is wrong.
This is not about “I want to play with dolls, wear dresses, go to the hairdresser, go shopping, wear makeup,” or any other insulting and superficial characterizations of trans women’s femininity. That is placing the cart before the horse. What it’s about is this pain and doing what it takes to ease the pain.
If the Province truly recognized the value of preventive health, then it would not be necessary to rest on fiscal arguments, pointing out how the cumulative costs of treatment for anxiety, depression, addictions, self-destructive behaviour and even violence visited on trans people become more expensive than simply funding GRS — not to mention the financial loss as a result of unemployment and unemployability (creating other economic burdens outside health care), or leaving the tax stream by turning to sex work, leaving the Province, or suicide. It would not be necessary to point out how incongruent identification can impede finding employment, travel, housing, access to social services and shelters, legal recognition, accommodation in other public spaces, or relationships. GRS is more than preventive, but if the Province truly recognized the value in preventive health, it would recognize how GRS does reconcile incongruous gender identity enough for someone to become a healthier and more productive member of our society. Greater focus on preventive health is something I would happily applaud — but our government needs to prove it by carefully scrutinizing and recognizing the social determinants of health — not just give lip service.
Especially with this distinction:
This may be worth thinking about:
“6. The Health Charter should specifically commit that all Albertans have access to primary care services through primary care teams.”
Elsewhere, the government defines “primary health care” as:
- “Treating acute and episodic illness;
- Preventing people from becoming ill or injured;
- Managing chronic conditions;
- Making the most effective use of health provider expertise;
- Efficiency and co-ordination;
- Access; and
- Individuals playing an active role in their own health care.”
Which covers a lot, but people still slip through the cracks unless there’s an outcry. Without a specific acknowledgment of medically necessary care, “primary” lends itself to becoming more and more narrowly defined.
Under the Canada Health Act?
The fourth priority attributed to Albertans is to:
Better integrate policy and decision-making across government;
The Canada Health Act has been impinged on a number of occasions by various provinces. Quebec’s 2010 budget runs afoul of it by introducing a $25 user fee for each doctor’s appointment. It is in bad need of revisitation, as the only way it can be enforced is for the Federal Government to withhold payments to the Provinces for infractions. That is not something that anyone wants. But if Alberta pledges to get in line with the CHA with the Alberta Health Act, one infraction it will need to rectify is the delisting of GRS.
Of course, this might not be referring at all to the Canada Health Act, but to other branches of Provincial government. Perhaps when Alberta Health delists something like GRS, the Province then stops requiring that as a prerequisiste to changing one’s birth certificate?
Another stated priority is to:
“Support health literacy;”
Excellent. Does this include that of the spokespeople for Alberta Health like John Tuckwell, who didn’t realize that most other Provinces in fact do cover some or all of GRS?
Portability and Privacy
The report also says that Albertans:
“also expect that, in the 21st century, Alberta’s health system should facilitate a high degree of portability of health information. Ongoing initiatives such as the electronic health record are aiming to provide this portability and enable smooth transitions across the continuum of care.”
This was something that has been initiated in advance of the Alberta Health Act, and at that time, questions were raised about how privacy would be handled. This is indeed something that needs to be discussed at length. As trans individuals, we recognize that there can be serious repercussions when trans history is too easily discovered, and that even medical professionals can become very unprofessional when faced with patients they have a pre-existing prejudice toward.
The report also calls for:
“… a requirement that professional colleges and other entities regulated under key pieces of health legislation… ensure their bylaws, codes of conduct and operating guidelines are consistent with the Health Charter, as well as complying with the principles contained within the Act.”
Does this potentially silence doctors, nurses and other medical professionals who might otherwise express concerns about flaws in the health system? It’s not that far-fetched a question, considering that the Alberta Health Act is meant to consolidate five other pieces of health-related legislation… by replacing them. If the AHA is to be treated as a policy rather than a law and therefore not legally actionable, another segment of people who become vulnerable to the whim of the Province are our medical professionals themselves, and the unions that represent them.
“The Individual Must Take Responsibility”
The report begins with a Dedication that quotes Gary McPherson:
“ In our culture, responsibility for personal health has been abdicated to the professionals. For reform to take place, the individual must become the focal point of a “system of health”.”
The public does have a need to take responsibility for its health, by being proactive, educating itself, respecting the limitations of medical professionals, doing what it can to help use their (and our) time efficiently, and advocating for itself. However, “the public needs to take responsibility” is very often a softer way of saying “the individual needs to pay for it.” Prior to the appointment of the current Health Minister, “not our problem” was typically the response of this government to issues like suicide prevention among Aboriginal youth, drug costs for seniors (which the government did back down on), bed closures, the disappearing phenomenon of long-term health care facilities, and the delisting of gender reassignment surgery. Will the current Health Minister do the same?