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Talking to Michael Vonn about patient's rights: are they going down the tube?

Published 14, Jun, 2011

Bob Leahy turns an unexpected delay in filming an interview with a feisty human rights activist about E-Health Records in to a discussion about perhaps the most contentious topic of all, treatment as prevention.

Talking to Michael Vonn about patient's rights: are they going down the tube?

I interviewed Michael Vonn last week for PositiveLite. Typically you don’t get to know interview subjects all that well. You talk a little, sit a little and then the cameras start rolling (or not – this is the digital age after all) and afterwards you part ways. But due to a glitch that occurred that morning because our camera-man was nowhere to be found, I had a chance to talk with Vonn for some time. What an interesting woman she is!

I think the filmed interview we eventually did will be VERY interesting. Watch for it here on PositiveLite.

Vonn is with the British Columbia Civil Liberties Association. She was in Toronto to speak at the Canadian HIV/AIDS Legal Network Symposium on HIV, Law and Human Rights. Our interview was one in a series resulting from PositiveLite’s collaboration with the OHTN in filming these videos for our website and theirs. I’m not sure when this particular one will be aired, but in the interim, I wanted to write about Michael Vonn’s message.

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The topic of her talk to the symposium was about the declining privacy of health records in the age of electronic information. In other words, the question is how secure is information that may be recorded in your electronic health records, and what is it being used for?  Now Vonn is no Luddite; she is quick to acknowledge that data sharing is not a bad thing; her issue is the extent to which the patient has control of the date. And she thinks that control is slipping away in BC, where she comes from, with similar trends being seen in Ontario and elsewhere.

Now I like to do my homework before any interview. On the internet I had come across a speech of hers at a Vaccine Safety conference in January 2011. In it she says “to no one’s surprise, economics is a major driver of the shift in patients’ rights. . . . The government of BC is devoting hundreds of millions of dollars to an unprecedented and possible unconstitutional consolidation of citizen data held by different ministries with an additional data grab of citizen information from private sector entities ranging from private medical laboratories to community-based counselling services.”

She’s feisty! I told her I see here as a radical; she said no.  We agreed to disagree

Anyway, it turned out that this same speech I’d found was a gold mine of quotes on issues near and dear to my heart. Let me quote, for instance what she says about treatment as prevention. Not sure what that’s about? Check out our previous entries on this topic, the most recent being here and here .

Not unexpectedly, Vonn like myself, is an opponent of treatment as prevention. She quotes Nguyen at al’s writing on BC’s treatment as prevention strategy known locally as “seek and treat” thus: “the theory is that since high viral load increases infectivity, if treatment can reduce the viral load of a sufficient number of patients, new HIV infections will be greatly reduced or even eliminated. While traditional rights language is used in describing the “seek and treat” program – which explicitly invokes the “right to treatment” , treatment per se is NOT the focus but rather treatment as de facto vaccination”

She quotes Cindy Patton, Canada Research Chair in Community, Culture and Health as saying something similar “Although superficially cloaked in rights-resonant language, the treatment as prevention approach quickly slides from “vulnerable populations” to “at risk populations” to actuarial claims about the number of “infections” the program might avert, and at what dollar investment and savings, with little further consideration of the realities of living with HIV on the ground.” Vonn says "in this scenario, it is not only that patient's rights are being given incredibly little weight, but that it is also that the very nature of rights is being refined”.

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Vonn and I chatted about this at length while waiting for the cameraman to arrive. I told her this is exactly the point I’ve made repeatedly in the past – that public health interests are trumping patients’ interests. Meanwhile proponents of treatment prevention – sadly they go virtually unchallenged - will say that the program is justified a) because infections are going down (that is true in BC) , and b) because there is no treatment without consent. But that latter argument falls apart when one realizes it's based on a false assumption, namely that a newly diagnosed person who knows nothing about HIV and is often in an emotionally fragile state is able to give “informed consent”.

Vonn had earlier stressed the importance of advocates within the HIV community – HIVers and ASO’s - raising concerns with issues like these where patients rights are placed low on the totem pole of decision making. I'm not sure that dilaogue is happening.

In any event, it was a great discussion we had. When the cameraman finally appeared and we made ourselves look pretty and sat down to talk before the camera, the words flowed naturally. We talked about both E-health records and the treatment as prevention issue. With a bit of liuck we'll be both pretty AND pretty interesting.

All photos courtesy of Wayne Bristow

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Canadian Positive People Network/Reseau canadienne des personnes seropositives
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