HIV It's Different Now
John McCullagh talks to HIV positive activist Denise Becker about a new, innovative “seek and treat” campaign in Vancouver that aims to identify and treat the estimated one in four people who are infected with HIV but don’t know it.
If you live in Vancouver and you’re an adult who’s ever had sex, the chances are you’ll be offered an HIV test with your next routine medical examination. This four-year, $48 million pilot project funded by the BC government, is a “seek and treat” program whose objective is to identify and treat the estimated one in four people who are infected with HIV but don’t know it.
The project, supported by an advertising campaign though social and more conventional media, is purposely casting a wide net as it seeks to test those who are outside the groups that have traditionally been seen as at “high risk” for HIV, such as gay men and injection drug users.
The message that BC public health authorities want to deliver is this: HIV “is different now”. It’s no longer a death sentence but a chronic communicable disease that can be controlled by medication. That starting treatment sooner can lead to longer, healthier lives but that you can’t be treated if you don’t know you’re infected. And during the time that you don’t know you’re infected, your health gets worse and you can infect other people. So being tested allows you to receive treatment if you test positive, treatment that allows you to live a healthy, active life, have a good career, relationships, babies even. And being treated also means that you’re less likely to transmit HIV to others.
BC believes in it. Certainly, that province has had more success than others in reducing the incidence of HIV infection.
In order to understand further the history and thinking behind the It’s Different Now campaign, I spoke to Denise Becker, an HIV positive activist who’s one of the spokespeople for the campaign.
John McCullagh: Thank you, Denise, for agreeing to talk to PositiveLite.com about your involvement in the It’s Different Now campaign that started last week in Vancouver. You’re no stranger to PositiveLite.com readers, of course, as you’ve been contributing articles to the magazine for several months now. But to refresh our memories, perhaps you’d describe in four or five sentences who you are and your relationship with HIV.
Denise Becker: Sure, John, thank you. I’m 52-years-old and have had HIV for 22 years, I was diagnosed in 1994 and found out I was HIV-positive in one of the worst ways possible. My six-month-old baby girl was sick with pneumonia and was admitted to the ICU at BC Children’s Hospital. It was then that we were both diagnosed and she died three months later. In addition, I had recently been laid off my job along with thirty others at a school district. The timing couldn’thave been more horrendous.
I’d not been offered testing during my pregnancy or even before that, despite my doctors knowing I was taking birth control and was sexually active prior to meeting my long-time partner.In addition, he was never previously offered testing. Fortunately, he never became infected and we were together 18 years.
Yes, Denise, you’ve written about the sad loss of your baby daughter on PositiveLite.com. I’m so sorry. It makes it quite understandable why you’re such a supporter of the campaign. Could you tell us something about it? It’s quite a new approach to HIV testing, isn’t it?
Yes, it’s a unique approach. John. The campaign organizers believe that many people that have HIV and are not getting tested. Due to new medications, it’s now possible to live a long life with HIV and it’s no longer an automatic death sentence, hence the “It’s different now” theme.
I understand that it’s the intention of the campaign to test for HIV every adult in Vancouver who’s been sexually active as part of routine health exams rather than just those who in the past would have been considered high risk for HIV, such as gay men and injection drug users.
Previously, physicians offered HIV tests after they assessed whether their patients were at “high risk” for the disease. By making that judgement call, many people were not tested and some found out when it was too late for treatment to save their lives. This campaign proposes that anyone who’s ever had sex is at risk, period. No judgement calls will be made.
Is the testing mandatory?
No. The test is voluntary. HIV advocates and HIV organizations have been been instrumental in promoting the empowerment of individuals to make well-informed decisions and have insisted that the test be optional. I’d particularly like to mention the good work done by Positive Living BC iand the Canadian HIV/AIDS Legal Network as well as numerous HIV advocates such as Louise Binder. I’ll get on my activist horse right now and say if we disrespect a person’s right to choose then we’re not allowing them their fundamental human right. Informed consent is always the best policy. Some nay-sayers claimed that if the test was not mandatory, people would refuse. However, the facts show so far 95% of patients offered the HIV test have agreed, which demonstrates that informed consent does work. Unfortunately, it’s been my experience that some of the nay-sayers were doctors who didn’t want to go through the pre-test counselling with a patient for whatever reason.
Yes, I want to ask you about the doctors in a minute. But first, I’m interested in knowing how this campaign is being promoted.
There’s a significant “HIV testing guerrilla marketing campaign”, as The Vancouver Sun put it, that started last week involving social media, websites and bus shelters. The campaign is alive and well on Twitter too and singer Jann Arden recently gave it a re-tweet!
Denise, you’re featured as an advocate for this project on the campaign website, where you talk on video about the importance of being tested. We’ve posted the video at the end of this interview so readers can see it, but why did you get involved in this campaign?
Well, John, I know that there’s a direct correlation between people starting HIV medication and the length of their lives. I’ve seen far too many people get diagnosed when they were very sick in hospital and were in the later stages of the disease. The very nature of HIV means that symptoms can be innocuous or you can be non-symptomatic for years. Not only that, but if you are not diagnosed you could unknowingly transmit the virus to others. Recent findings show that transmission of HIV can be cut by 95% with early detection. Things really are different now!
Yes, indeed they are! Denise, you’ve written on PositiveLite.com about your diagnosis and how that sad experience led you to become an advocate for women and children living with HIV. Can you talk a little bit about the needs of women and children with HIV and how the It’s Different Now campaign can potentially make a difference in the lives of families.
I’m living proof of what can happen if you don’t get tested for HIV. When I became pregnant, my GP didn’t offer me an HIV test with all the other blood work I was getting done. Why should he? By the time I was 33, I’d had sex with a total of five men; one was my husband, another a partner I had for a year and another for five years - hardly a life of promiscuity.In addition, I’d never taken drugs or had a blood transfusion.
However, I would have agreed to an HIV test. I made the mistake of thinking it was one of the tests I was being given. I have to take some responsibility and say I was aware of HIV and should have gone in for a test even prior to that time. Today, if women find out they have HIV, they can take medication during pregnancy which almost totally prevents transmission to their babies. In fact, there’ve been no transmissions to babies by positive women on treatment in Vancouver for a very long time.
This is one of the major reasons why we may be looking at an HIV-free future generation.Obviously, affordable access to treatment now needs to be delivered to all HIV positive women, including women in developing countries, if there’s to be a stop in the spread of this disease. I cannot emphasize enough that once the public realizes that HIV is preventable, controlled and is not a death sentence, then men, women and children will cease to be stigmatized, which is my ultimate vision as an advocate.
The move to include HIV testing in routine health care hasn’t yet been taken up in most other jurisdictions. Can you tell us how this happened in B.C. and what were some of the challenges along the way? For example, I know that many people find treatment as prevention a controversial concept.
The BC Centre for Excellence in HIV/AIDS led by Dr Julio Montaner, my specialist, discovered that while the incidences of syphilis and injection drug use were increasing, the incidences of HIV were decreasing. This confirmed their analysis that treatment was actually leading to a decrease in the spread of HIV. It became obvious that HIV patients who were compliant with taking their medication and who had undetectable viral loads (meaning that the virus cannot be detected in their blood) - the aim of treatment - were not passing on the virus.
I think the controversy lies in the side effects of the medication and because some people feel that as long as the drug companies make monetary gains from the medication they’ll be less of an incentive to find a cure. However, many scientists are working hard to find a cure and the Bill and Melinda Gates Foundation is just one of the many agencies involved. Personally, I’m very susceptible to side effects from the medication and am keenly aware that prolonged use of medication can lead to cellular and other damage. However, being alive indefinitely while the search is on for a cure is much more appealing than being told how long you might live!
In the meantime, I’ll work with my doctor to take the right medication which will lessen the side-effects and I take nutritional supplements which help immensely too. I passionately believe that we must never take for granted our access to life-saving medication. How many people in Africa have died because they are not in the same position?
Another issue is that some people are afraid if they choose not to take medication they’ll be criminalized. This brings about a whole different set of issues that need to be dealt with in the context of human rights and proper counselling.
The government of British Columbia is fully behind this initiative, right?
I believe the BC Centre for Excellence was able to show the provincial government very early on the cost-saving of a patient being on medication as opposed to being in hospital. In addition, a person under treatment might be able to continue work and pay taxes. I commend our provincial government for being a world leader in various treatment and prevention campaigns, as can be evidenced by their backing of the Insite supervised injection site and the needle exchange. I feel very lucky to live in British Columbia.
Denise, this is where I want to ask my question about family doctors. Was it easy to get them on board? I imagine it’s GPs who’ll be doing most of the testing.
I can’t overstress how imperative it is for GPs to get on board with this campaign. Many GPs know that if they display judgemental attitudes and are afraid of embarrassing someone by asking for consent, they may miss an important opportunity for their patient and in fact are going against the code of conduct of “do no harm”. Tests are far less expensive these days and results can be found out very quickly. Failure to test patients serves no good purpose.
Have GPs been trained in offering pre- and post-test counselling and are they fully up-to-date with community resources that would be available for those of their patients who test HIV positive?
There’ve been many initiatives in BC to go and train doctors in their communities. I was involved with many other positive women in one project led by Positive Women’s Network in BC, where HIV positive women together with specialists went to various communities to train doctors and explain why pre- and post-test counselling was essential. This was some years ago and I can’t speak to what’s happening today.
It’s Different Now is a four-year pilot project. So I imagine there’s an evaluation component to the campaign to determine its effectiveness, including its cost benefits. If it’s found to be successful, is it the intention that HIV testing will become part of routine health care province-wide?
I think Vancouver Coastal Health, the leaders of the project, should answer this question more fully but it’s my understanding through reading the literature and newspapers that this is the intention. You can go to the campaign website to look at the campaign. The Vancouver Sun has also conducted an interview with the project organizers.
Thank you, Denise, for taking the time to talk with us about this creative and innovative campaign and your involvement in it. Good luck!
And thanks to you, too, John, and to everyone else at PositiveLite.com for your interest and for being a great learning source for people with HIV.