Listing your HIV meds (ARVs) on your PharmaNet profile - informed consent

HIV-positive people will soon be able to have their ARVs (anti-retrovirals, HIV meds) listed on their PharmaNet profile … if that’s what they want.

The systems are now being finalized that will enable people wishing to have their ARVs listed on their PharmaNet profile to sign a (somewhat) simple informed consent form and submit it through their pharmacist or physician to the St. Paul’s pharmacy dispensary; the listing will then occur. 

Those wishing to keep their ARVs off of their PharmaNet profile need do nothing; not listing remains the default position.

The draft of the consent form that will be used is attached below, along with its preceding explanatory note. It’s a good idea to familiarize yourself with it as much as possible before you actually sign one. 

Since the creation of PharmaNet in 1998, the overwhelming majority of ARV prescriptions have not been listed on PharmaNet. This remarkable exclusion – all meds dispensed in BC are supposed to be on PharmaNet – was effected in recognition of the terrible stigma associated with HIV/AIDS in those days.

The problem was (and remains) that any time you get a prescription filled at any pharmacy in BC, your entire PharmaNet profile is automatically shown to the dispensing pharmacist (and whomever may be working on her or his behalf). It was an open invitation to unwanted and unauthorized disclosure of individuals’ HIV-positive status. 

Indeed, there have been instances recorded of people having been involuntarily “outed” as HIV-positive in their home communities because of such listings. This is so because only ARVs dispensed through the St. Paul’s pharmacy (or, rarely, some other hospital’s dispensary) were exempted. ARVs dispensed through regular commercial pharmacies were never exempt.

But, from the beginning, many BCPWA / Positive Living BC members have wanted to see their ARVs listed in their PharmaNet profile. One of PharmaNet’s more helpful features is that it automatically flags known problematic interactions between the drugs prescribed for dispensing and other drugs a person is taking. Too, listing on PharmaNet allows one’s doctor(s) easily to see a complete listing of all prescriptions one is on.

As soon as the systems required to effect individuals’ consent to list their ARVs are in place, notification will appear on this website, and the information will be distributed through numerous other means.  At that time, you will be able to sign and submit your informed consent form.

If you have questions about the informed consent document, contact Ross Harvey at Positive Living BC:

• rossh@positivelivingbc.org
• 604 893 2252