The OHTN's Indigenous Learning Pathways to Prevention Award (ILPP) aims to engage Indigenous post-secondary students in community-based research to improve prevention, treatment, and care programs offered to their communities around sexually transmitted and bloodborne infections, including HIV.

The ILPP will fund two Indigenous students conducting community-based projects with an Indigenous health or community-based agency in Ontario. The award provides $30,000 over a one-year period to support both the research activities and the student’s salary. More details about projects eligible for funding through this award are available in the Call for Expressions of Interest.

Interested students and their community partner agencies are encouraged to contact This email address is being protected from spambots. You need JavaScript enabled to view it., the OHTN’s Indigenous Research Initiatives Coordinator, by October 20, 2017.

Just a decade ago, Venezuela's AIDS program  was a model for countries throughout the developing world. Now it's a ruin.

Recently, by way of our friends at the Canadian Positive People Network (CPPN), PositiveLite.com received an update on Venezuela's steadily worsening situation, along with an ask:

"S.O.S. Venezuela: Urgent solidarity needed!" ran the header.

Signed by ICASO Executive Director Mary Ann Torres, the appeal continued:

"There is a humanitarian crisis in Venezuela, the home country of our Executive Director Mary Ann Torres. This is a crisis of many facets, but it is above all, humanitarian: people are dying of hunger. People are dying of preventable, treatable infections. Our friends living with HIV are dying of AIDS.

"ICASO and our friends in Canada, Venezuela, and around the world, call on all of you – we call for urgent, global solidarity. We need to get treatment to the people dying in Venezuela.

"ICASO has been working with service providers and community advocates in Venezuela and directly advocating in any spaces available (UNAIDS Programme Coordinating Board (PCB), IAS2017 Paris conference, and others) for support.

“Read IAS 2017 intervention by Jesus Aguais.

“Read 40th UNAIDS PCB intervention by Mary Ann Torres.”

Mary Ann was appealing to Canadians to donate any unused ARV’s they might have, as well as other supplies, to relieve the suffering in her home country.

And I sat there reading and marveling once again at how, in the year 2017, it's possible that so many people with treatable, manageable conditions could be simply left to perish, while their government paints rosy pictures for whoever will listen. And as I did that, I thought it would be good if I could help May Ann get the word out about what it is to be HIV-positive in Venezuela these days, what she's trying to do about it and what challenges she has run into as she tries to mobilize a Canadian response to the health crisis there, particularly as it relates to HIV.

*******

Rob: Hi Mary Ann, thanks for talking with PositiveLite.com about your appeal for Canadians to help stem the humanitarian crisis in Venezuela. It’s sort of a big question, but can you just describe for us in broad strokes the situation people living with HIV are facing in Venezuela today?

Mary Ann: Well I think that you have to understand that probably 90% of all medications have been absent from pharmacy shelves for many months, including antibiotics, over the counter pain killers, alcohol, gauze… anything. Anything and everything. Particularly with ARV’s, medications for cancer and medications for liver and kidney disease, which are medications that are provided by the government. But we haven’t had any medication of those sorts for many, many months.

The average stockout is six months for most of the ARV’s. I have a detailed list that I can share with you. There haven’t been any viral load or CD4 count tests for probably now 18 to 24 months because those tests are done by one state lab. In the country, there’s only one that does it. Rapid tests and HIV tests in general very rarely are available. Sometimes through private labs you can get an HIV test as a diagnostic but the government doesn’t have any.

There are no condoms, either male or female and one of the things that’s quite painful is that there is no baby formula. There hasn’t been any baby formula for many, many months, so that has meant that women living with HIV, not knowing their viral loads, if they are undetectable or not and many women that don’t know if they are HIV-positive are forced to breast feed because there is no baby formula. And that means there are many cases now of babies with HIV.

And it can happen that they won’t know until it is quite late, when they present in the hospital with diarrhea or fever or any of several things and then they realize that they have HIV and they are in the late stage of AIDS and there is nothing to do.

And that has happened often in the last year. Often, compared to the numbers before the crisis, when Venezuela had one of the best national health programs or treatment programs in the region, with free universal access to ARV’s, diagnostic, treatment for opportunistic infections. I think it was ‘97 or ‘98, by a decision of the Supreme Court, but now it’s in a shambles.

So that’s where we are. There are 77,000 people living with HIV that are registered to receive treatment.

And they’re not getting it.

They are not getting it. And I think that’s about where we stand now.

Can you tell me about the Aid for AIDS Organization and what part it plays?

Aid for AIDS has had several programs but the one they are most famous for is the Recycling Medication. So for a year they have been recycling medications, mostly in the U.S. and sending them to different countries and they have people that are registered in the program so they receive their medications each month. Now, with the crisis in Venezuela, they have been acting as a facilitator of bigger donations. We just received one of antibiotics that was donated… I don’t remember the name but I can find out.

What they have is that they were able to secure a warehouse in Panama. So the donations that we receive here, and I’ll tell you what I’ve received today, we’ll either send it to the warehouse in Panama and they have another, smaller one in Miami that we can send it to and they take the medication to Venezuela.

So depending on the volume of the donation and on what it is, they will work with the National AIDS Program or they’ll do it directly through their different peer organizations in the country.

For example, I received today 1,000 condoms and a few hundred rapid tests that I’m sending directly to them and they will distribute that through their national partners in Venezuela, because it’s not drugs per se, but rapid tests.

For the drugs it’s a little bit more complicated; there are a lot of regulations under the Venezuelan government for any drugs that come into the country, but we have been successful in the past in working with the National AIDS Program and seeing that the donation goes through the national distribution chains.

That sounds amazing. So how has the Canadian response been so far? And what challenges have you been running into so far in putting together a Canadian response to the crisis?

Well the response has been extremely slow. Today I got the tests, the condoms, some test tubes. I have been in communication with two large humanitarian organizations to see if there is anything that they can do. But it has been very slow from the perspective of individuals. We have received a few small cash donations that will help us take the donations to either Panama or Miami or Venezuela, depending.

But that’s it. It’s been very, very little.

So not much luck in networking with Canadian organizations?

Not really.

Well I hope it will help a little bit if we can get the word out.

Hopefully, yes. We are a charitable organization so we are able to receive cash donations and to issue official, tax-deductible receipts. So on our page, we’ve got a little place for people who want to donate medication or supplies in general and for people who want to donate cash, if you want to add a link…

I will. Mary Ann, thanks again for talking to us. I hope you’re able to generate a lot of support.

ICASO is working with Aid for AIDS to collect ARVs (and condoms) and send them to Venezuela.

ICASO will pay for shipping costs and in partnership with Aid for AIDS we will ensure the donated ARVs reach the people that need them in Venezuela.

HERE IS THE COMPLETE LIST OF ARV's NEEDED

ACTIONS YOU CAN TAKE:

SHARE this plea with your networks.

SHARE WITH ICASO (gro.osaci@osaci) any recommendations on how to involve others on this effort.

DONATE YOUR MEDICATIONS:

If you are in the US: Follow these instructions.

If you are in Canada: You can drop-off or send directly to ICASO, 120 Carlton Street #311, Toronto, ON, Canada M5A 4K2

DONATE to ICASO: (Official donation receipt will be issued for each donation)

By cheque payable to International Council of AIDS Service Organizations

Donations in cash or by direct deposit, wire transfer and email money transfer are available. You can write to gro.osaci@osaci or call 416-9210018 for details.

               For any donations, please add “SOS Venezuela” in the comments.

THANK YOU.

"Mr. Kimboi or whoever you call yourself, I demand some respect. I have human dignity as you do and deserve to be treated with decency. I do what I do because I am passionate of, this is my source of livelihood as well as my profession. And by the way you need to apologize if you are still interested in getting what you came for!" Janet fumed!

I had no option but to be submissive and apologize though I also had to correct her: I am not Kimboi but Kemboi. She felt offended when I innocently referred to her 'profession', as she called it, as prostitution. I never knew this would offend her.

Anyway she was not too rigid to accept my apology but I had to get her a glass of fresh juice to moisten her throat and enhance the flow of the story.

*******

We had met a week earlier but she could was not willing to talk to me because it was a peak hour for her and I didn't seem to be her client. We arranged to meet some other time during an off peak hour. I tried asking for her phone number but she refused and told me she only gives it to her prospective clients. I am sure she must have doubted me and thought I was spying or something. She later gave me directions on where to locate her and the time she would be willing to talk to me.

"I have been a sex worker for close to a decade now and I am proud of what I do. Despite some few challenges here and there, my job is paying. I never lack something to settle my bills and feed my family, I am a mother, you know! This job is not everybody's cup of coffee, it needs perseverance and tolerance for one to cope up and be passionate. I started sex work at a tender age of 15 just after clearing my primary school education. I was compelled to do so by the turbulent background I was from." Janet explained.

"I was introduced by a friend who used to get clients for me, since I was unable to 'hunt' on my own. I had to pay her a small percentage of what I was offered. Initially, the experience was such a hell and I never knew what I would have to cope with but after a while I adopted the new lifestyle. It took me a couple of months before becoming independent and getting my own clients with no one else involved anymore. I have been able to attend to my needs without lacking for even a single day." Janet added.

"The main challenge is that people are forgetting that we are human beings and therefore have rights as provided for in the constitution under Bill of Rights."

"This is a business like any other business and I don't regret being a sex worker, neither do I think of stopping soon. We do have seasons, high and low; holidays, month's end and weekends are our high seasons. Sometimes I get up to over 20k at a go, especially when my clients take me for a holiday or weekend to some place outside Nairobi. On a normal day (low season) I make like 30k; it has really transformed my life.

"This is the most lucrative and paying job I have ever heard of and on top of it, no papers nor experience is needed. Your ability to satisfy your client is what we value." Janet said with a smile on her face.

"Despite all these gains, we have a number of challenges here and there. The main challenge is that people are forgetting that we are human beings and therefore have rights as provided for in the constitution under Bill of Rights. I might not be that learned but I have never seen a clause that illegalizes sex work. We are having issues with the local authorities such as county Askaris and police who arrests as they wish. I have been arrested on several occasions and even arraigned in court. Surprisingly, at no occasion have I been charged for being a sex worker but things usually take a twist and then it turns out to be a 'drunk and disturbance case'. Occasionally, we are forced to secure our freedom by dipping into our pockets (5-15$) or offer sex to some 'hungry' officers. On other occasions, we are also compelled to 'pay' a fee of over $50 a month to some senior officials so that we don't get harassed whenever we are arrested or are deliberately left to 'trade' freely," she complained.

"No one has ever come out to champion for our rights apart from a few activists and organizations though their efforts do not sufficiently address such issues. We would wish that legislation is passed to legalize sex work and that we be accorded due respect to freely carry out our work without harassment or fear of intimidation. A designated place (must be decent) also needs to be set aside as our 'station' so that we will not be disturbing the few people who feel allergic to what we do. This station can also have a clinic where we will be getting medical attention and access to contraceptives since we are at risk of getting infections and pregnancy. It will be a safe, convenient and friendly place for us.

Remember, we are at constant risks of getting infected with STIs and,worse, HIV. Such a facility can be a convenient place we can always run to for help especially in instances where a condom breaks or have been offered a better pay, which we cannot resist, for unprotected,"Janet pleaded!

"Janet" (not her real name) is a sex worker based in River Road Nairobi. I was interviewing her recently and she gave the responses which I recorded directly as they came from her, though I was forced to censor some bits.

Bob Leahy: Hi Alex, thank you for agreeing to talk to PositiveLite.com. Tell me a little about yourself. You live in Switzerland?

Alex Schneider: Yes, I have lived in Switzerland for three years, not far from Zurich. I live here because of my husband and his job. I moved here from Germany. Before that I lived in Russia and USSR (the Ukraine). I’m 38 years old. I’ve been HIV-positive for five-six years and I’m undetectable.

How would you describe your profession, because I know you have done a lot of things?

Yes, first of all, I’m still a chemist, a bio-chemist. I’m also a scientist so that really helps me do work around HIV services. Now, though, I’m also an HIV activist and an LGBT activist.

And you have done some work with the Russian government, have you not, to establish their HIV policies?

I had an organization in Germany; we did work for different governments about health systems. In 2011 I founded a non-profit organization in Moscow for this purpose. The HIV problem in Russia is really big so I started to work with the government on a new strategy to fight HIV and to make broader access to treatment.

Let’s talk about the HIV epidemic in Russia because I don’t know as much about it as I should.

Measured in new cases, per year, Russia is first place in the world (2016 - 103 000 new cases). Drug users account for 49%, men who have sex with men (MSM) are at 1.5%; the rest are as a result of heterosexual sex. In the first half of 2017, there were 14,631 deaths of HIV positive people. There are 1.16 million registered HIV cases in Russia today including 259,156 deaths. It’s estimated that 24% of drug users are HIV-positive, 14-15% of MSM and 12% of sex workers.

Those are worrying numbers. How does Russia stack up to 90-90-90 targets?

In Russia today the numbers are at 64-33-75. (64% of people living with HIV are diagnosed, of those 33% are on treatment and of those 75% are undetectable.)

Now you have been successful in signing up a huge number of new community partners in Russia and EECA to the Undetectable = Untransmittable (U=U) campaign. I’m guessing you have used your connections made in Russia to do that?

I know many of the organizations and have colleagues who work in these organizations. I called them and said “you need to sign on”. I was calling, calling, calling. We had taken information from your (U=U) website, added a little bit more and translated it for our site. Now we have even Armenian. Some organizations said “we know about that Information” (U=U). I said “it’s good that you know, but you have to spread this information, to talk, to educate other people.”

So they knew about U=U already?

If we are talking about HIV service organizations - I can say that they mostly knew. Some people said “but you don’t understand, we have this problem here in Russia with treatment, with access” and of course I had to explain it’s not just me saying it, even UNAIDS is saying it. I say “you have to fight the stigma.” Only by fighting stigma can we fight HIV. Of course, being stigma-free in our society is impossible. But people need to understand that if people have an HIV positive test, this is not a death sentence, they need to get treatment and live life to the fullest. …many people (in Russia it is more than 20%) who are tested HIV-positive never go back to the clinic because they are afraid.

What about access to treatment. Once you are engaged in care there is that an issue?

It’s a big problem. Only about 33% of people who know their status get on treatment. (In Germany it’s over 90 %.) It’s improving though. The government pays for the treatment, for prevention, for everything, but still not enough and not effectively.

Supposing I was diagnosed there today would I be able to start treatment immediately?

No. It depends on the city and the AIDS Centre. In some cities it goes faster. in some not so. Usually you will be diagnosed, then will have your conversation with a doctor (“infectionist”), then you need to have a medical examination by other doctors like cardiologists, even a dentist; only after that you may get your treatment. It may take two-three months or more. In some cases (it used to be many cases), and if they don’t have enough medicines because of small budgets etc.- say you have a CD4 of 400 - they will say “let’s see and wait one year.”

Is viral load testing available without a problem?

So so, but usually yes. But we have a lot of deaths because people are coming to the clinic to get tested too late, with very low CD4’s. In the first half of 2107, we had about 80 deaths a day, and it’s because of late diagnosis.

That’s not good. I see that only 1.5% of cases, by the way, are MSM. Do you believe that last number?

I mean it’s not true. In Russia if you are gay, it’s better to say “I got HIV from a woman.” In Russia one of our partners started a campaign called “code 103”. It’s the special code used by a clinic for MSM infections. If you are homosexual you should be saying you got sex from a man, if that’s true, to get proper statistics. Gay sex is not illegal but the stigma is still there.

So is there HIV prevention aimed at gay men, or organizations for gay men?

There are some organizations, but their funding is mostly not from the government but from foundations, like the Elton John AIDS Foundation. etc. When you talk to the minister of health in Russia you may say “we need to do HIV prevention work for MSM.” But with just that (false) 1.5% figure, the question we are asked is “why?”

Let’s look at the prevention alternatives then. What’s the role of PrEP in Russia? Anything going on?

We are starting to think about and start a campaign in the new year aimed at MSM. I’ve been talking with generic drug companies from India to get the drug really cheaply. People would pay about $40 a month. Our partner “Phoenix Plus” has already made available oral HIV tests with help from the Elton John AIDS Foundation.

This is good, Alex I’ve learned a lot from you. You’ve been very helpful. Thank you for teaching us about the epidemic in Russia, how serious it is, and what is being done to combat it.

Thank you Bob.

About Alex Schneider: “For more than 20 years I have been involved in scientific work in the field of chemistry, biochemistry and pharmacy. For the last 10 years I focused my activities on socially significant diseases such as HIV, hepatitis C and tuberculosis. In 2010 I started a collaboration with the EECA region. One year later I was diagnosed HIV-positive and decided to work in advocacy in the EECA region. In 2015 I initiated a discussion about compulsory license in Russia under government level with prime minster Medvedev. In 2015-2016 I began to work on a strategy to combat the spread of HIV in the Russian Federation during my expert work at the Russian parliament. In 2016 I developed an app for HIV-positive people called Life4me+. 

"Over the years, my needs came before my health. Risk of getting sexually related infections never came to my mind. I could sleep with whoever offered to pay my rent, buy food, meet other bills and ensure my beauty was maintained." Eve said.

"I could sleep with any man irrespective of his physical outfit or age, what mattered to me was how much he could cover. The amount he could give decided how much his demands were honoured. Using protection was not my option but his wish; to be sincere. I didn't know much about condoms apart from the little information I saw or heard from adverts," she said.

I must say I was surprised to hear that she knew nothing about condoms and that deciding to use them was not her decision but that of whoever she was going to bed with. This was contrary to what is common nowadays where people with multiple sex partners, especially women, opt for protected sex.

"During the time, I feared getting pregnant more than contracting STIs. I used to frequent pharmacies, especially when I felt my days were not 'safe', only to get contraceptive pills. During those days, HIV was only associated with prostitutes in the streets of big towns such as Nairobi; this was the notion I used to console myself with. The only thing I could ignorantly say was 'to hell with the money' which definitely dragged me to hell. I didn't bother about my tomorrow since all my needs were met without struggle." Eve uttered in a regretful note!

Eve explained to me how she used to be move from one estate to another not because she was defaulting on her rent or transfered from her job but her type of 'hustle' compelled her. She could not stay in one estate for a long time without her neighbors beginning to question her behavior; they must have felt uncomfortable with her considering that they had family and growing children.

"For me, this was the sweetest part: to hear that she was under medication and had achieved suppressed viral load. This is a peak of taking medication that everybody is working to achieve."

This was how she lived until she started having frequent complications: today an ache here and tomorrow a pain there. She was in and out of hospital and instead of her health improving, it was deteriorating even further.

"My doctor told me that he had to do run several tests to check what was the matter with me. All the tests turned out negative even with my worsening condition. He then suggested that maybe we should do an HIV test. I wanted to resist but he explained how important it was as far as how I would be treated was concerned. The doctor convinced me and I had to give in," Eve said in a deep breath. 

I started to realise that Eve was becoming emotional, her eyes became watery and she was takeng deep breaths. Something must have gone wrong during the tests or something was really disturbing her. Despite this, she continued to narrate what happened after the test!

"The test was done," she continued, "but unfortunately something unexpected happened; I was HIV positive. This sounded like a hell to me and I felt like my breath would stop in the next minute. I was counselled and in the long run I changed my mind. I saw light in my life. A few days later I started taking medication and now am feeling superb. No more complications and  I enjoyi being undetectable!"

For me, this was the sweetest part: to hear that she was under medication and had achieved suppressed viral load. This is a peak of taking medication that everybody is working to achieve. The most surprising thing is that after knowing her status, she had to change her sexual life; she could not sleep around with any man she came across and if need be, she opted for protection to avoid infecting the sexual partner or getting reinfected.

We didn't end our talk without making an appeal to people who may come across her story."I beseech the sexually active generation to play safe if they can't abstain. Also let your health come before material benefits or any other gains. Make protection your closest friend, let it be your first and last option!"

*******

Eve (not her real name) was a sex worker but currently runs her own business at the outskirts of Nairobi. She is also a pioneer of a number of women's self help groups ('chamas') in her neighborhood.

#PLWHIVvoice

PositiveLite.com previewed the numbers before, but now the preliminary report  is out and it’s a mixed bag. One thing is clear though. Ontario is being left behind by some of its competition.

The province’s epidemiology unit, OHESI, housed at the OHTN, confirms that new HIV infections, although down from ten years ago, have been on the rise the last three years. The increase in that time period is fortunately not large but contrasts sharply with good news from other countries, notably the UK.

Why has the trend in Ontario been for the worse? OHESI says this. “Despite an overall decrease in new diagnoses over the past 10 years, there has been a slight increase in recent years. Between 2013 and 2016, there was a 10.5% increase in the number of new diagnoses and a 7.2% increase in the rate of new diagnoses per 100,000 people. This increase may be partly due to the 18.9% increase in the number of HIV tests during the same time period.”

The picture is better over the long term. “Overall” the reports says “the number and rate of new HIV diagnoses in Ontario have decreased over the past decade. Between 2007 and 2016, the number of new diagnoses each year fell from 1,013 to 881 and the annual rate of new diagnoses per 100,000 people dropped from 7.9 to 6.3.”

So it’s a good news/bad news kind of report. Good news over the long term, bad news when you look at recent years’ data.

Why are new HIV infections now growing in number? It is clearly impossible to define causes very accurately. But OHESI’s suggestion that it’s perhaps because of increases in numbers of HIV tests ignores the fact that there have also been increases in testing in the UK, while new infection numbers there are nevertheless going down.

Could it be changes in demographics, or an increasing population base, or changes in risk behaviors (if we have to use that term), or the impact (or not) of Ontario’s various prevention campaigns? It’s impossible to say without the kind of analysis that’s missing here. We can say, though, that the period under review, between 2013-2016, saw a sharp increase in chemsex. We can say that there was slow uptake of prevention technologies increasingly being leaped upon by others. PrEP was not widely available and prohibitively expensive for many. Treatment as Prevention (TasP) was routinely shot down in the province by researchers, funders and activists alike. Meanwhile condom use was falling. It was the perfect storm for an epidemic to go if not unchecked, at least, not fully under control.

Meanwhile other jurisdictions pressed on. The UK scored most prominently; HIV diagnoses there have fallen by 65% in London and by 48% outside London from their peak in 2014. AIDSmap reports “Changes are occurring as a result of greater promotion of HIV testing, greater use of new technologies for HIV testing such as self-sampling, earlier treatment and a more widespread awareness that undetectable viral load makes a person uninfectious.”

As for Ontario, here are the report's other take-home messages:

• Even though there has been a slight increase in diagnoses in recent years, the diagnosis rate in 2016 (6.3 per 100,000 people) was still lower than in all years prior to 2013.

• The recent increase in new diagnoses was more pronounced among females – with the diagnosis rate increasing by 2.5% for males and 29.3% for females between 2013 and 2016. The increase among females appears to be driven by diagnoses in individuals who were White, Indigenous and/or who use injection drugs.

• While there has been a greater relative increase in diagnoses for females compared to males in recent years, the diagnosis rate has consistently been three to four times higher for males. In 2016, the diagnosis rate per 100,000 people was 10.1 for males and 2.5 for females.

• Over the past decade, the majority of new male HIV diagnoses were gay, bisexual and other men who have sex with men and/or White, while the majority of new female diagnoses were African, Caribbean and Black. Compared to males, a higher percent of new female diagnoses were Indigenous and/or people who use injection drugs.

• HIV diagnoses were not distributed equally across the province. In 2016, the rate of new diagnoses per 100,000 people was highest in Toronto (15.0) and Ottawa (8.8) and lowest in the Central East health region (2.3).

• Differences in diagnoses between 2015 and 2016 varied by health region. Ottawa, Eastern, Central West and Southwest regions all experienced an increase in the number and rate of diagnoses from 2015 to 2016. Diagnoses decreased in the Toronto, Northern and Central East regions.

Catch that? Toronto, with its high concentration of gay, bisexual and other men who have sex with men is bucking the provincial trend. That’s not new; PositiveLite.com first reported on this in 2015. But perhaps it does speak to the province’s more visible commitment to increase HIV testing which is most apparent in Toronto. The Toronto area also has much greater exposure to prevention campaigns, such as those launched by ACT and GMSH, which are much less visible outside Toronto. But again, one has to guess.

Only a crystal ball will tell where all these numbers are heading next. But there is reason for optimism. True, we haven’t seen the kind of radical changes in testing alternatives that have been seen elsewhere – funders have consistently railed against home testing where is has scored well elsewhere. That needs to change. But PrEP is certainly more accessible. More optimal conditions for TasP to be effective seem in place now too, with U=U a household word in the HIV community, early treatment start becoming the norm and getting earlier all the time.

Here’s a prediction. Numbers of new infections will nose dive in Ontario in 2017. Any takers?

Dr. Pietro Vernazza being interviewed  in the studio with Bruce Richman in Paris at !AS2017

About the Swiss Statement: Source aidsmap http://www.aidsmap.com/The-Swiss-Statement-and-its-repercussions/page/1746478/

“There is evidence of some groups of gay men knowing, from the late 1990s onwards, that people with an undetectable HIV viral load were much less infectious, and were using this knowledge in sexual decision-making. Public discussion of this became much more high profile after a paper was issued by the Swiss Federal Commission for HIV/AIDS in January 2008.

The statement caused widespread concern amongst some prevention and public health advocates who felt it was based on weak evidence in some areas and risked undermining people’s efforts to maintain and promote condom-based safer sex.

The statement said that people with HIV are not sexually infectious (“ne transmettent pas le VIH par voie sexuelle”), as long as the following conditions are met:

.The HIV-positive individual takes antiretroviral therapy consistently and as prescribed and is regularly followed by his/her doctor.

. Viral load is 'undetectable' and has been so for at least six months.

. The HIV-positive individual does not have any STIs.”

Bob Leahy: Pietro, thank you for talking to PositiveLite.com. I’m going to begin by asking you a question which I have heard posed to you before, I think in Paris, and I know your response. But it’s an important commentary on our history and Swiss Statement history. That question, of course, is “do you feel vindicated?”

Dr. Pietro Vernazza: Yes and no. In 2008, there were some people saying we got this wrong. For that part of the criticism I feel vindicated. However, the big criticism at the time was “you don’t have the data to say this” and the critics would still say this today “you didn’t have the data at the time, so it wasn’t correct to do the statement”. This criticism does not take into account the experience we had at the time, and more importantly, they still don’t consider our key argument: we had absolutely no evidence of the opposite, the risk of passing the virus under these circumstances.

I think I heard you say “yes” in Paris. (laughs). But you raise the question … since your statement we have had HPTN052, PARTNER and Opposites Attract. But it was still really the community and the U=U campaign, I think, that really got the word out and weighed in with the “news” that people who are undetectable can’t transmit the virus sexually?

I would agree for the United States, Canada and many other countries. I cannot agree with regard to Switzerland, because it was in Switzerland that health care professionals came together with this statement, and this is what we were telling our patients; no question that we all gave the same information. So that’s completely different.

So what is your reaction to the U=U campaign in at least bringing the message to large parts of the world?

I congratulate all these people who are working on the campaign and made it possible. I have a hard time accepting that such an effort was necessary. There was a community that at the time was against publication of this message; they were suppressing it, always with different arguments. We had a hard time. That is one part. But that the same people insisted their stubborn position even five years after the HPTN052 Data was presented in Rome is just incomprehensible to me.

Yes, I want to ask you about that Pietro, because in 2008 when the Swiss Statement came out and again in Mexico City - I was there when you had a special session at the International AIDS Conference – some people thought it was a dangerous message to put out, that there might be risk compensation, that it threatened condom campaigns. What did you think when you heard that kind of reaction, that we shouldn’t be saying this because of the consequences?

We already had data to support that none of that is the case. We had data from California that observed an obvious increase in condomless sex and an increase in STI’s in a population that was very well treated but without an increase in HIV incidence. The impact was in fact much bigger because as a result of the Statement, many more patients were motivated to get treatment. Those patients that weren’t motivated in the past and whose CD4 counts were OK had a new argument to get treatment. Not to be infectious means a lot to an HIV-positive patient. That effect which was much bigger than we anticipated was clearly helping to reduce the incidence of HIV. So these theoretical fears that people, had – the arguments were just very weak.

The suggestion then that we should NOT release factual information about HIV risk because of the potential or perceived consequences raises ethical questions, does it not?

The whole statement had a strong ethical basis. If we know that we don’t see any cases of transmission, patients have a right to know; it’s not ethically correct to tell the patient you could still transmit (if they are durably virally suppressed.) There is a strong ethical principle; when you have strong evidence of risk to a patient in your care, you have an obligation to tell the patient of that risk. That’s correct medical management. Now, if you have no evidence of risk, the same is true; it’s not the obligation of the physician to select which information to present to the patient. It becomes a little bit more clear with a related issue we are following at the moment: breast-feeding by HIV-positive. mothers under therapy. We are preparing a publication now which says the risk of breastfeeding (when the mother is undetectable) is minimal or negligible. We have never seen a case of transmission. We have to tell this to HIV-positive mothers under treatment, because the risk of not breast-feeding is also relevant. You have to tell the patient that there might be a risk of transmission, but we have not seen a true documented case. We also have to balance this with information about the advantages of breast-feeding, which are numerous. In such a situation we shouldn’t tell the mother “don’t breast-feed”. We are obliged to tell them that breast-feeding is an option and have to support a shared decision making process.

It’s interesting, Pietro that we are talking a lot about ethics now, and ethics don’t always come in to discussions about HIV. I actually welcome this kind of discussion. And on this topic (U=U campaign leader) Bruce Richman has suggested we have been selective in the past whom we tell U=U-related science to in that the medical profession makes judgements on who is equipped to hear it, based on the patient’s behavior, their socio-economic status, etc. What do you think about that?

Bruce, of course, is correct. It is not on us to decide who may hear a true fact. Medical knowledge that is needed to influence your health behavior must be made available to everybody.

I want to ask you something else. I was at the Paris Press Conference on the topic of U=U. You came to the microphone and said something that really impressed me. I’ll paraphrase . .”the onus now is on people to prove that people with HIV who are durably undetectable CAN transmit the virus sexually.” Tell me why you said that.

I would love to. That was a position I suggested in 2008. It was never accepted by many opposing colleagues. In order to disprove a hypothesis (that HIV can’t be transmitted), I have to have a case that shows HIV WAS transmitted. That is the way how science works. It’s a fundamental concept and it’s based on mathematical fundamentals. We have discussed this so many times and I have never received a good response from the opposite side. Let’s put it vice-versa: I make the statement that HIV is not transmitted. They say “you have to prove it’s not transmittable”. However, to disprove a hypothesis you must disprove the opposite. Mathematically you can only prove that something DOES occur; you can never prove it WON’T occur. You can observe 10 cases, 20,000, or one million cases … the one million and first could still transmit. It is impossible to prove a negative. You can only prove the positive. That’s why I said in the very beginning: the scientific way of looking at this is to prove the positive (that transmission can occur.) Now every physician until 2008 told their patient (who was on HIV treatment) they were infectious. But I would ask “what is the evidence to support this statement of infectiousness for that situation?” That was my point; there was zero evidence and ten years after publication of the Swiss Statement there is still no published, documented case.

Dr. Pietro Vernazza at the U=U press conference in Paris at IAS 2017

I would add Pietro as a community member we hear variations on undocumented cases somewhat frequently. People say things like “a friend of mine was infected with HIV by someone with an undetectable viral load.” As a result of that they don’t believe U=U. What would be your response to that?

It’s difficult. But it is a repeating pattern we see with many other examples of misinformation. The common pattern is always With regard to this specific topic I would still say that every doctor in an HIV practice who observes such a case and proves it would publish it. Such as paper is a citation booster and can readily be published in any prestigious medical journal.

Right. Let me ask you another question. Some in the community of people living with HIV latched on to the power of antiretrovirals as a prevention tool way before U=U, way before AIDS Service Organizations acknowledged it. Why?

I think in this situation of rejection of the Swiss Statement by professional organizations, this was the only alternative for a person with HIV to free themselves. When we issued this statement I was very well aware of the responsibility I had. I knew if my statement was wrong I was putting people at risk. I wouldn’t have done it without researching and arguing about it for a long time.

So you had done your homework and you were convinced it was the right thing to do. Talk more about your reaction when so many organizations, including here in Canada, essentially rejected the message and said “don’t pay any attention to the Swiss Statement, it’s business as usual.” Disappointment? Anger?

Not really, I anticipated some backlash. But in Switzerland we had prepared this very well and involved a large group of professionals working in the field. But when such a strong reaction comes from outside, for a group this strengthens the position. We stuck together. In 2008 I was invited to give presentations around the world and after every presentation I left with my head up, I felt I defeated every argument. Really, there was never an argument against the statement that held true after rigorous discussions.

So you felt you won then and you must feel you doubly won ten years later. I have to say, Pietro, you are one of the heroes of our movement. You deserve the Nobel Prize. It’s been great to reconnect with you. Do you have a final message you want to share?

My job was only to stick to the expertise we had and to talk openly about it. I want to say - perhaps I haven’t stressed it enough – the U=U campaign to me is like something I have been expecting for a long time. I was expecting the CDC and physicians, etc. to openly speak about the consequences of our evidence such as HPTN 052. But no, it took the community to finally communicate the truth. I have to congratulate everyone who helped in this movement. I have been approached over the years by many individuals who have a fear of transmitting HIV, it is time, to end the fears! I have talked to many individuals in jail sentenced for not having caused any risk to anybody; still in these days. It is about time that this terror comes to an end. I really think these community members who were active on U=U did a great job.

That seems like a great place to end. Thank you, Pietro, for that and thank you so much for talking to PositiveLite.com.

If you followed the International AIDS Conference in Paris this last summer, you might have read that community activists caused quite a stir. In particular they interrupted one plenary session and took over the stage. They danced, chanted and spoke about the impact U=U had on their lives. One of these activists was Minas, 36, from Istanbul. He’s tall, striking looking - and straight. His words were striking too – the fact that people with HIV have sex and the good news that U=U can bring them. It was a powerful moment, one of the highlights of the conference for all of us lucky enough to be on the stage with him. I caught up with him recently via WhatsApp.

Bob: Good to reconnect like this, my friend. Tell me what it’s like being out and poz in Turkey? Is it difficult?

Minas: Actually I am not open about my status because when I learned about my status the situation was worse because and I was in show business as an actor. And then That's why I prefer to talk from the perspective of a community representative. But I think you can get the idea of how difficult being poz is here - you can easily lose your position or job or your family or wife or husband. That means that when I am talking on TV or for newspapers I don’t say directly that I am poz. Because I strongly believe that, what I have in my blood is not important for the others. This is non of their business.The important thing is what I am saying and what is scientific proof about what I am saying.

So nobody knows your status in Turkey except yourself?

Of course some people know - a few friends, my gf, some doctors of course. Our clients, all the doctors, some family members and more. I mean I am sharing this information only with people who need to know. I am not asking anything about people’s sexual or health life. So why do they need to know about my status?

Who was the first person you told then?

My girlfriend and then some friends and my brother.

And your girlfriends’ reaction was?

I remember that she was afraid a bit and prejudiced.

So how did you reassure her?

In the first 24 hours I devoured all the scientific information I could and Ihen I talked to her about this information. It was good for me because that was how I learned that knowing scientific information could make me strong. This is exactly how I am doing activism now.

So you read up on HIV? Can I ask how recently you were diagnosed Arda?

I will tell you something really interesting about my diagnosis - and it’s not a joke. I learned about my status on December 1st and my birthday is Dec 1st. It was 2009.

Tell me about that day then.

It was a small hospital where one of my friends had a minor operation and when she needed blood I was killing time in the corridor. They asked for 0 rh+ type blood which is the same as mine. So I gave one unit of blood and they checked my blood and they found it.

What was your reaction?

A bit shocked, of course. I wasn’t totally unaware of HIV but the Doctor who told me about my results was a super bad person and also homophobic. Because she explain the results in very bad way with comment; I will gonne die in 10 years! Of course it was very old information and I am planning to visit her on my 11th years with HIV. I hope she can survive until that day. Because I will.

Did you immediately go on treatment?

Yes. My first CD4 count was 340 and my viral loaf was over 100,000. I started to take ART immediately. Truvada and Efavirenz was the best option for the moment; there weren’t any symptoms.

I see. When did you first hear about U=U then?

I was aware of HPTN052 when I first saw a report about the campaign at the very beginning. That’s when I wrote to Bruce to be a partner organization on behalf of the Turkish community. There were only five or six organizations in then.

And then you went to the International AIDS conference in Paris. Tell me about that.

Paris was an amazing experience for me even if it wasn’t my first conference. I want to share something very special about Paris, though. While we were all in the poz lounge after the U=U press conference with wonderful activists like Christian Hui, Bruce, Charles King and lots of others they talked about the planned demonstration next day. Charles asked me if I wanted to talk at that. So I said yes but then I told Bruce “this is your campaign, you are the star. Why am I the first? You should talk.” I’ll never forgot his wonderful answer. He said 'You know I come from the States and I talk everywhere. I think you should talk because you are doing really well, and this is the perfect message for people”. This moment was more emotional than being on the stage next day. It was just perfect!

So the next day, I know what happened but I want to hear it in your own words. Do you remember what you said?

Every word. For me two most important parts were first, being poz is not easy in Turkey and the EECA region. Secondly “one day, I can be a father without fear of putting my girlfriend at risk'' I don’t want to be a father but people needed to know that I CAN BE! Before Paris I’d been on the stage about 500 times but being on the stage at Paris and talking about something like U=U felt like changing the world. U=U is revolutionary. I am pretty sure that, even after 20 years, people who were there will remember that moment. When we left the stage together I saw some people crying. Some people stopped and gave me huge hugs with lots of emotional words...

Right, I think Paris was a highly important milestone/turning point - personally for me and for the U=U campaign. Were you nervous? Emotional? Happy though?

Yes I was nervous but ıf I decide to do something I will do it generally, that's me, But yes, I was very emotional before and after the demo.

Me too.

Yes I remember that

I think we all cried. We all went out to dinner afterwards and I cried there too. It was such a momentous day! Anyway, let’s talk about your work in Turkey. You lead an AIDS Service Organization there?

Ok, there is a parallel connection with U=U. I have been working on HIV about nine years but the most important moment was two years ago. I was really tired and sick of this old and very pessimistic HIV language and I decided to go for a new NGO.

You started one up?

Honesty, the only thing I had was self-power and some international networks. I founded Red Ribbon İstanbul Association. Currently I am its chairperson and I am proud to tell you that in just 18 months this organization is one the most respected NGO's in Turkey. In only 18 months we had Turkey's first Red Ribbon Party, a Red Ribbon Gala and published Turkey's first joint statement together with highly respected doctor organizations, which included U=U. I believe this is really huge success because it means U=U is officially approved by most restpectful Doctors This kind of thing happening for the for first time in Turkey’s HIV story. I am really proud of myself about that. 

Good. Tell me what it was intended to tell people.

Red Ribbon Istanbul is an organization that aims to raise awareness and provide information on HIV, focusing mainly on people living in İstanbul in various segments of the population. We strongly believe that the most effective tool to prevent the spread of HIV is knowledge that is scientifically-proven and data-supported. With the know-how of our members who come from various fields, including law, health, entertainment and politics, we aim to provide precise information about HIV to all segments of society, using clear and easy-to-understand language.

Tell me about the HIV epidemic in Turkey then.

Turkey is still a low epidemic country but numbers are crazily increasing; the number of cases is about 15, 000 since 1985. Approximately 9,000 people are taking ART. According to official data most are heterosexual but our data is showing HIV is a real risk among the young men who have sex with men (MSM) population.

What about infection through injection drug use?

In my experience it's not a real problem but chemsex is a huge problem. I mean really huge.

Same here in North America. It’s amazing to be able to talk to you again about so many important things and great to reconnect with you. Thank you for talking to me, Arda, and to PositiveLite.com

Thank you for your support again and for what you are doing for people living with HIV. I’m so happy and proud to know you.

It was not much more than a year ago that I first wrote about Love to Love Organization for PositiveLite.com, having been introduced to their work by my Facebook friend, William Matovu, a young HIV activist working there as an HIV educator and peer advocate.. Suddenly one day there he was on Face Book, with: “This is how it's gonna be... responding to the development of youths and who are less advantaged and orphans by promoting their God given talents."  I liked the attitude and I wanted to know more.

Love to Love Organization supports orphans and children living with HIV in Uganda and I was struck most of all by the way they help children develop their abilities, preparing them for a self-sufficient life. I was also impressed by the evident sincerity and dedication of William and of Daniel Ssemuli, Love to Love’s Executive Director.

Not long after I first wrote about them, the organization released its first video documentary -- scroll to the bottom of this page to view it -- in which William gives a very good overview of Love to Love's multifaceted response to HIV, which has involved tirelessly spreading the word that people living with HIV who have an undetectable viral load cannot transmit the virus sexually.

Love to Love Organization have been especially robust supporters of the #UequalsU campaign. Their counter-stigma work takes place across several platforms, including their recently released lyric video for the U=U song, sung by Danny and William and produced by Moses Rain.

From left: Moses Rain, William Matovu, Daniel Ssemuli

The U=U Song

The results of all this activity are impressive, all the more so in view of the available resources, as they got this far without government funding. The shining light we can see in these young faces is ample tribute to the courage and devotion of the men and women of Love to Love Organization.  

But the HIV response is international and U.S. influence has a long reach. Recent changes to PEPFAR seem certain to bring medication stockouts and interruptions to programs in several African countries, Uganda among them.

Also, homophobia and HIV stigma are rife and pervasive in Uganda, thanks largely to American evangelists. And all of these factors combine to place vulnerable people in harm's way.  

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Thank you for taking the time to chat with us William. With all that's going on at Love to Love Organization, what does a typical day look like for you? Or is there such a thing as a typical day?

My typical day is mostly based on doing charity work, especially doing advocacy and helping the needy.  So I’m committed to that, day by day, until I see that I have made this world a better place for all, regardless of their HIV status.

Are you specialized in any particular area of operations?

Yes, I have a number of activities but I love doing advocacy and helping the less privileged people especially the young ones. That’s what my heart yearns at most.

You have been a tireless supporter of the Undetectable = Untransmittable (U=U) campaign since I’ve known you – are you seeing the U=U knowledge get out to the community there yet?

The U=U message is not yet so effective in my country, generally because most people living in rural areas have no access to quality health services and I have seen this on TV news several times as per now. I have been following what’s happening right now in Uganda about health status.

Some weeks back I was watching TV and I saw a young mother of two children who had missed her HIV medication dose for almost three months and I felt so touched, yet she is still breast feeding her last born and I felt heartbroken. And yet recently the government released 13 Billion Ugandan shillings for the age limit bill consultation, a minor issue. Instead of focusing on the future generation they are focusing on the next general election, while at the same time health workers in government hospitals are on strike because they are underpaid and the health centers lack essential things like medication, gloves and testing kits, just to mention but a few.

These barriers to treatment are among the reasons why some said the U=U message was a terrible message for Africa. Cultural issues were cited as well. What do you say to that, William?

Yes Robert, they think it’s a terrible message for Africa because they think that when we get that information we shall become irresponsible, which is wrong. I have been fought by some people because of supporting the U=U message but I will always stick on true due to the fact that I have evidence on it and I have seen a lot of my friends testify about #UequalsU here in Uganda and the rest of the world.

In my conclusion, Africans have a right to know this too.

It's often a pretty big deal for people when they find out they can’t transmit the virus by sexual means if they have a suppressed viral load and they tend to become big supporters of the campaign once theey know. This looks to be true in Africa as well.

I will never get tired of spreading the message.

Are you able to work together with and partner with other organizations in Uganda to do your advocacy or render assistance to people living with HIV? Is there a good level of cooperation among the organizations there?

Yes, so far we are working with New Hope Uganda and we look forward to partnering with others soon. And we have good cooperation with them.

Recently it was announced that the International Treatment Preparedness Coalition (ITPC) and Prevention Access Campaign (PAC) have partnered to spread U=U knowledge worldwide. It seems like a very positive development for educating people and sweeping out stigma – what are your thoughts?

The moment I saw this message in the #UequalsU Facebook group I felt so happy. This shows a great achievement for all U=U supporters and our energy that we have injected into this has started yielding fruits. I agree with you that this is a positive development and a great benefit for African countries. Africans living with HIV have a right to know this message and this campaign is simple but hugely important for all of us because it is based on solid, scientific evidence. I have witnessed a lot of testimonies about #UequalsU here in my country and across the globe.

A while back, you published an article in PositiveLite.com where you detailed what you saw as the biggest challenges the HIV movement faces in Uganda. Underfunding was one of the main factors and that was months ago. A few things have happened since then. Can you talk a bit about the withdrawal of PEPFAR support and what it’s doing for the HIV effort in Uganda?

First of all, the cutoff of PEPFAR support from African countries: am not happy with it. It is going to cause a lot of new infections and AIDS-related deaths among us Africans, especially those who live in a low income setting. PEPFAR has helped a lot in HIV prevention, care and treatment here in Uganda and I am one of the beneficiaries because the health facility where I get my HIV medication has been supported by PEPFAR.

In my opinion the Government of USA should find another solution for this or otherwise this will delay the 90-90-90 goal of UNAIDS and many more people will continue to die.

You also spoke of rising levels of ignorance and stigma – why do you think that is happening?

Ignorance and stigma are rising high due to the fact that many people here in Uganda lack information about this epidemic, especially in the rural areas country wide and a lot of sensitization is still needed in order to overcome these problems.

Does criminalization of key populations, such as LGBT, sex workers, people who take drugs, play a big role in this? Can members of those populations find support if they contract HIV?

For the key populations here in Uganda it’s still a big challenge for them to express their human rights because of African culture and as well as the church. That’s why stigma it’s still at its highest peak and this hinders them in having access to quality health services and other services. So this has increased a lot of felt stigma and enacted stigma.

And at the end of the day, we lose them.

When people talk about stigma they usually cite ignorance as the cause, but these pastors you mentioned in your recent PositiveLite.com article are an example of people in a position of trust and power who manipulate the ignorant and the vulnerable. And we know there have been American evangelists in Uganda, inciting homophobia, AIDS phobia. Perhaps we need to focus more on those who profit from all this massive stigma and ignorance and pay due attention to the ways such ignorance is fostered. Your thoughts?

Yeah it’s true that these so-called pastors have used the ignorance of these innocent people to manipulate them. That’s why death rates of people living with HIV are so high here. They perform planned miracles to get more followers, in order to get more money from people. For instance, they use media platforms like television. They’ll pay someone to come to their church to be prayed for, putting in people’s minds that this person is HIV-positive. After not yet a week, he or she comes back to the same church to give a testimony to show the world that this man of God has healed him or her from HIV. So then the innocent person living with HIV who has been watching TV falls into the trap.

We’ve talked before about the political tension ongoing in Uganda – does it impact your work there much?

Yes it does. Here in Uganda the government does not want Nonprofit Organizations to interfere with politics and if you’re found doing it, they stop the organization from operating. For instance, when Action AID Uganda tried to fight for the rights of Ugandans about the age limit bill scandal, the government froze all their bank accounts and even locked up their offices and took all their office gadgets like computers, claiming that they were trying to fund the opposition leaders to fight government.

Where do you draw inspiration from when things are tough?

When things go tough on my side I pray to God, listen to music and share the condition with friends. These things can make me feel relieved from anything that is bothering me until I find a solution for it.

Who have been your best mentors, in advocacy and in life?

There are a number of people who have done great things in my life. I take this opportunity to recognize a few of them.

Nakyazze Joyce: The day I tested positive for HIV after the death of all my parents, this lady comforted me as her own son. And she acted as my aunt in signing papers to start my HIV medication because at first my step mum refused to escort me to the clinic after knowing that I’d tested positive. So this lady is one of the heroes in my life.

Ssemuli Daniel Steven: Mr. Daniel is more than a mentor but also a great friend and a father as well. I met him in 2010, when I was still in my high school, along with other fellow young people both affected and infected with HIV in different parts of the country. This how Love To Love Organization began and he is the vision bearer . Since then he has been always supportive, he has been there for me at all times.

Kawempe Home Care: I got to know this charity Organization in the year 2008, after the death of both my parents, when I tested positive for HIV at the age of 14. In 2012 I got a sponsor whose name is Gunnhild Rein Almås from this very organization, after being denied a chance to go back to school by my step mum. Through this organization I received support from her as far my education was concerned. So she is still a blessing in my life. Through Kawempe Home Care I got this guardian angel who changed my life and I am so glad that now i can do the same to support and help others.

I would also like to thank others who haven’t been mentioned here, because I really have a lot of people around the world who have been a blessing in my life God bless you all.

I lost my heart a bit the first time I saw a video Daniel produced that had the children singing. I found it so joyful and powerful. Music and natural talent can sometimes build bridges where other things fail – and when it’s coming from children, that combination is hard to beat. Given the chance, they really are their own best advocates, aren’t they?

Yes, as you know me well Robert, I love being with the kids. So this is where my greatest happiness yields from. They bring joy to my life when I am with them because I know what it means to be an orphan. I was once like them, that’s why Daniel and I mentor them in addressing matters concerning HIV/AIDs and STIs. We also train them to be responsible citizens and we nurture their talents so they can grow up to realize their full potential and become self-reliant. 

What is the best thing, your favorite thing about the work you and Daniel and everybody are doing at Love to Love Organization?

There are a number of best things that we do, my colleagues and me; but advocacy is the main thing. As our Mission Statement says, we love, care and educate both those affected and infected with HIV, especially children and young people. We are so passionate about the work that we do. With all these, our end result is to see the most affected communities have a better life, hence making this world a better place for them to live in.

Thanks again for speaking with us today Willliam. I'm grateful for the work that you and Love to Love Organization, and all the other activists and organizations are doing in Uganda and across Africa and across the world.

Those who would love to follow us can find us at www.lovetolove.ug, our Facebook page, Love To Love Organization, Twitter handle @LTLORGUG or you can email us at This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it. or our personal Facebook pages, William Matovu and Danny Ssemuli.

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Be sure to check us this Friday, when William Matovu's first column as a regular PositiveLite.com contributor will be appearing!

The announcement came as no surprise to anyone following recent developments in the HIV movement in Canada. “Unfortunately, with the significantly changing landscape of the HIV movement (including massive cuts to government funding for HIV/AIDS community-based organizations), we will not be holding a 2018 forum due to financial constraints” said the email from CAS ED Gary Lacasse. “We have worked tirelessly in order to secure funding but as of yet have not been successful because no funders are willing to finance face to face meetings anymore.”

Public Health Agency of Canada (PHAC) announced a massive redistribution of their AIDS budget in October 2016. Some agencies, including CAS, lost their PHAC funding completely, effective March 31 the following year, but were granted a one year extension. That extension expires at the end of this month.

Lacasse said that PHAC is no longer interested in funding community gatherings like the CAS Forum, which last year drew 70 community members to Regina, Saskatchewan. Other PHAC funded agencies are also feeling the crunch. CATIE, for example, which has long hosted a well-attended biennial national forum bringing those who work in HIV and the community together, no longer has confirmed funding for a Forum in 2019,

 “There is no money for bringing people in anymore” 

I asked Lacasse what it felt like to have to advise the community that the Forum will not take place this year. “It took me a couple of days to press enter and transmit” he said “because the Forum was something I held dear to my heart. I find these spaces are shrinking, that there are no longer spaces available for community organizations to engage with people living with HIV. The loss of this space – and we worked for three years to bring it to what happened last year – is going to take years to recover. The issue is, first of all, that the Federal Initiative doesn’t want us to meet, that’s clear. We are talking to officials every week to try and have them comprehend the extreme trauma they have created within the HIV network in Canada. We are holding them accountable. And while this would have been a really good fit for private financing with clear objectives in place, that’s not available either.”

“What about the future of CAS itself, when the PHAC funding commitment is due to expire March 31?’ I asked. It sounds like some specific programming funding is available but not much else to support core operations. Some staff will need to be let go. Said Lacasse “There will need to be restructuring. There is going to be a CAS after April 1. We are working to create guidelines for practitioners on how to prescribe marihuana; that’s about $100,000 a year so that will help. We also have about $800,000 in new funding requests in to the federal government to continue some really strategic work moving forward, including launching a national HIV Testing Day this year. It will be the first national offensive in HIV testing in Canada.”

“Office overhead we will be reducing because we are down to minimal staff. Some staff are leaving effective April 1. We will have to become more grass roots and more nimble in delivering what we have to do. Our advocacy work will be centred around lobbying the federal government to help them understand what specific gaps they have created with the new funding model.”

Lacasse told me about moving forward with work anchored on three pillars – advocacy and lobbying to ensure that there is an adequate federal response to the HIV sector, secondly working on awareness through the national HIV Testing campaign, rebranding the national AIDS Walk, etc. and thirdly addressing gaps in services through specific programs like the medical marihuana guidelines and our GIPA roadmap.

The CAS AGM will again be conducted through a webinar format. “There is no money for bringing people in anymore” said Lacasse.