I received an email the other day from Louise Binder, in response to my blog post Medical Ethics and the Rights of People With HIV Under Assault.

Louise is one of the founders and the board chair of the Canadian Treatment Action Council and former Board Chair of the Toronto People With AIDS Foundation.

She co-chairs the Canadian federal Ministerial Council on HIV/AIDS; is a member of the Community Advisory Committee of the Canadian HIV Trials Network and a member of the Global Coalition on Women and AIDS Leadership Council. She was the plenary speaker on women and girls at the XVI International AIDS Conference in Toronto.

She makes some important points about how some of the testing and treatment proposals under discussion affect women.  With her permission, I’m sharing her comment:

Great article and great back and forth. I looked at some of the issues that are exacerbated for women due to gender inequality and less access to determinants of health eg education, employment, supportive social networks, gender itself.

First, in the area of testing, it is often very dangerous for a woman to test nominally. Partner notification applies and she may well be subject to everything from physical violence, severe abuse and ostracism, eviction from the family home and accusations of being the source of infection (rarely the case).

Since women are often un/underemployed she may have to stay in this relationship no matter what, for her children and herself. Cultural norms and linguistic challenges add to her instability. Thus, anonymous testing and easy access to it is a must, as part of a range of health care services, rather than isolated so everyone knows what the site is, is crucial for women.

It gives them the chance to know and to make plans to tell their partner either before or after she leaves the relationship. For pregnant women, this issue is even more problematic.

Most jurisdictions (in Canada) automatically test all pregnant women. Ontario is an exception where the rule is to automatically
offer testing. Interesting statistics show that Ontario has at least equal and in some cases better uptake of testing and treatment for pregnant women than in provinces in Canada with automatic testing. In fact more HIV infected babies are born in Sakatchewan than in Ontario by far.

Automatically treating anyone is a violation of human rights. For women some medications are better than others in regard to lipodystrophy, depression, and complex multiple daily responsibilities and adherence, all of which affect women more than men in general.

In addition, women rarely have jobs with benefit plans so they are forced onto public plans and must take what they can get, which may not be most appropriate for them. Because they generally have less money than men, even paying dispensing fees, bus/subway fare, copays, etc. is onerous.

Women are less trusting of the health care system and more intimidated by it than men generally so they seldom ask important questions of their doctors leading to poor/no adherence and poor side effect management.

These are a few of the reasons, other than the obvious one that this is a gross breach of individual rights and freedoms, that I think this is not only an unwworkable policy for women but also will not achieve the aims intended and will fail at a great cost to lives and to the health care system.

- Louise Binder