Many people looking into HIV Treatment for the first time are concerned about drug-resistant strains of HIV.  It’s no wonder, with all the news out there about a “super bug”.  It is true that HIV mutates and evolves very quickly, and inside a person’s body, it can be resistant to specific drugs that person is taking.  But this is just one piece of the HIV drug resistance story – and maybe not the most useful piece for people who are newly diagnosed and wondering how they will respond to meds.

The thing about HIV’s rapid mutation is that it’s also seemingly random and completely lacking any quality control.  In a person who is not taking antiretroviral treatments (ARVs), HIV produces billions of new copies of itself each day and every single one can be a little bit different from all the others.  According to a recent article published in Relay Magazine, “the quality control process is so poor that every single possible change in the HIV can be produced within one or two days of infection”.  But one variant doesn’t stand out among the others unless it has the advantage.

Imagine you have a bit of a mouse problem in your house, and the mice come in a whole range of colours.  You buy a cat to chase the mice but the cat just can’t stomach blue mice.  The blue mice end up surviving and thriving while all other colours are killed.  The previously colourful mouse colony is now just blue.  In the case of HIV, somebody who is not taking antiretroviral treatment will have a very colourful HIV infection.  Enter the cats!  Nowadays, in the rich world at least, when somebody starts taking ARVs, they’ll be taking a combination of drugs (called highly active antiretroviral therapy or HAART) that attack the HIV at different stages in its replication.

There are now more than 20 different ARVs available in six different classes that attack HIV in different ways and are combined to maximize effectiveness.  Your doctor will help you decide when it’s time to switch up one medication for another.  People who have been living with HIV and taking treatment for many years will have fewer options, but new drugs (and even new ways of attacking HIV) are being researched and developed all the time.  Unfortunately, unlike our mouse and cat example, bringing in other drugs (a blue-mouse-eating cat?) cannot eliminate the HIV altogether.  We do not have a cure for HIV; some HIV always remains in the body.  Or, there’s always a mouse hole the cat can’t find.  The goal of the ARVs is to keep the HIV from replicating, because more virus means a greater attack on your immune system, and because replicating means mutating, and mutating means resistance.  It does feel like a bit of an uphill battle, but studies show that many people are successfully avoiding resistance.

The most important way to delay and prevent resistance is to follow your medication schedule precisely and consistently.  Taking your meds on time, at the same time, and as directed, allows them to work at their maximum effectiveness, attacking the HIV in its replication and restricting its ability to mutate.  While it continues to be hotly debated, it is advisable to continue practicing safer sex with other HIV positive partners so that you don’t risk reinfecting each other with resistant strains of HIV (or “sharing” resistance, so to speak).  Staying away from street drugs is also important, as they make it very hard to follow a drug regimen precisely, as well as increasing the likelihood of sharing needles and having unprotected sex which can also lead to reinfection and increase resistance.

Like so many issues relating to HIV/AIDS, resistance is not black and white.  We can’t even say for sure whether resistance is inevitable.  But we have developed some amazing ways to avoid and work around it.

-Miriam

When I was a little girl, I dreamed of becoming rich and famous so that I could single-handedly save the world.  At the top of my “world that needs saving” list was a little Caribbean country called Haiti—“the poorest country in the world”, as I had been told.  I am no longer a little girl, and instead of being rich and famous, I work in the humble HIV prevention field.  While I no longer believe it’s a one-woman gig, Haiti is still near the top of my “world that needs saving” list.  Haiti has the highest HIV infection rates in the Caribbean and is second only to the worst affected sub-Saharan African countries on a world scale.  The January 12th earthquake is being called one of the most devastating natural disasters in human history, and we are all bombarded with news and images.  In hopes of blogging something original, I have tried to focus my attention on how the HIV/AIDS community is responding to the quake.

A bit of history … The first Latin American country to gain independence and the first black-led republic following its 1804 slave rebellion, Haiti is a nation with a proud and rebellious past.  But a string of oppressive dictators have left the country without infrastructure and plagued by poverty and corruption from which it has not been able to recover.  And now this …

Haiti was the first developing country to document cases of AIDS, in 1983, when an organization called GHESKIO (a French acronym for Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections) published their experiences in the New England Journal of Medicine.  Since then, the Gheskio clinic has been named a “Public Utility” by the Haitian government and is recognized internationally as a centre of excellence, leading the way as a research and training centre.  According to a fabulous piece by Ianthe Jeanne Dugan, published Wednesday in the Wall Street Journal, Gheskio is one of Haiti’s few world-class institutions.  The clinic, headed by Haitian-born infectious disease specialist Dr. Jean Pape, played a role in securing a safe blood supply, and has developed several prevention campaigns, that seem to be having some effect.  According to the UNAIDS 2008 Report on the Global AIDS Epidemic, HIV prevalence among pregnant women dropped from 5.9% in 1996 to 3.1% in 2004 and has remained stable since then.  The Gheskio pharmacy tracks whether clients have picked up their antiretroviral treatment, and if they have not, an outreach worker is sent to their home.

“The earthquake has set us back about five years,” says Dr. Pape, yet Gheskio’s disaster contingency plan has been remarkably effective.  Radio ads announced to the population that the clinic is still open for business and told people where they could go to pick up their HIV meds.  Many of the staff found their way to work, some walking miles through rubble and chaos to get there.  The clinic has been able to see 85% of their usual caseload since the quake.  What struck me the most in reading Dugan’s article is the fact that the clinic, which has suffered an estimated $10 million worth of damage, is also treating more than 2,000 earthquake victims.  While making sure Haiti’s HIV positive population get their meds is the number one priority, the clinic has put all research initiatives on hold so that they can focus on treating and providing for the injured.

To read more about Gheskio and their amazing earthquake response, visit their website.  They need $300,000 immediately for food and medicine, and will except donations of $1 to $2000 using PayPal.

-Miriam

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

After a day of listening to updates on HIV related disease and treatments, the word I kept writing down was inflammation. It’s not a word that applies only to the physical aspects of HIV, but the social aspects too. On a torrential Monday in November, I attended the BC Centre For Excellence in HIV/AIDS (BCCfE)’s treatment update, and this one featured speakers representing the International AIDS Society. It was a real gift to hear these folks from around the globe and note similarities and differences in the work we all do to support people living with HIV.

HIV disease is one of inflammation. Once it enters the bloodstream HIV attacks the gut, decimating protective CD4 cells and degrading the gut’s protective mucosa. The immune system fires up in response. A revved up CD4 response means more targets for HIV to attack, and the image of a body on fire wouldn’t be out of line. Specific topical inflammations can increase the risk of HIV transmission. Thankfully, HIV treatments act on HIV at different stages in its replication process, keeping HIV virus under control and allowing the immune system to rebuild. This attack/rebuild dance can continue for years and people can enjoy health they mightn’t have imagined before 1996, when HAART became the norm. 

If only it were that way for the social inflammation created by the mere idea of HIV. Not that I needed reminding, but Monday’s presenters pointed out that stigma, discrimination, racism, heterosexism and denial of any problem are ongoing hallmarks of HIV in countries the world over. On top of the issues noted above, women and girls bear the realities that sexism, intimate partner violence, unequal economic opportunities, childbearing and child rearing bring. HIV makes the burden even heavier. I thought of the late Jonathan Mann when Dr. Chris Beyrer echoed something Dr. Mann said in the early 90’s: for women in some cultures, marriage is a significant risk factor for HIV infection.

Moral judgments on harm reduction strategies as a means to reduce infection are of no use to anyone. “Now is not the time to limit use of any intervention with proven efficacy.” Beyrer was speaking of the infection rates in Russia, where rates in the IDU population is close to 50%, but I also thought about the struggle of Insite’s harm reduction work here at home.

HIV inflames the body and the cultures in which exists. It reveals biases that may have otherwise gone unremarked or more easily ignored. But now highlighted, we must continue to fight the virus and the ugliness it can create. What an energizing forum it was – a conference full of fighters from all over the world.

- Janet

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

Thanks to Canada’s Access to Medicines Regime (CAMR) 21,000 people living with HIV in Rwanda received a generic triple fixed-dose combination antiretroviral drug called Apo-TriAvir, produced by the Canadian generic pharmaceutical manufacturer Apotex.  And thanks to the completely convoluted, inefficient and backward process that is CAMR, they stopped receiving these life-saving meds after just one year—not good for their own health and not at all good in terms of avoiding future drug-resistance.  A handful of the people who I respect most in the world (including the folks at the Canadian HIV/AIDS Legal Network) are fighting hard to have CAMR reformed so that it can actually work to get HIV meds where they are needed, in the quantity needed, for a price that developing countries can afford.  While they valiantly slog through the process of trying to get Bills S-232 and C-393 passed by the Canadian Senate and House of Commons respectively, I would like to take this opportunity to rant about the undeniable impracticality and outright inutility of CAMR as it stands.

There are two main hurdles to getting HIV drugs (and any other drugs) to the developing countries where they are needed most.  One is the cost of the drugs and the other is their patenting—both of which can be blamed on big business and their friends, like the World Trade Organization (WTO).  In August 2003, in the face of 3 million deaths globally per year due to AIDS, the WTO member states (including Canada) decided to amend the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) making it legal for countries to produce and sell generic versions of patented brand-name drugs to developing countries at reduced price.  While other nations turned their noses up, Canada announced that it was going to put the new law to use and CAMR came into effect in May 2005.  Having looked into it recently, my opinion is that it was never intended to be used or to work—certainly not on any kind of large scale.  So let’s call the government’s bluff and make it work.

A government that wishes to purchase treatments from a Canadian generic manufacturer using CAMR must first find a manufacturer willing to do so.  Apotex did it once and won’t do it again until CAMR is simplified and streamlined.  In order to bid on a contract to supply generic medicines to the country, a manufacturer like Apotex must first secure a compulsory license to produce and sell a generic version of a brand-name drug.  To secure the license, ideally they would already have won the bid and secured the contract, which they cannot do without the license.  (Yes, it’s a catch-22.)  The country hoping to purchase medicine must make it known how much of which drug they would like to buy, at which point the country becomes vulnerable to bullying from the big pharmaceutical companies and even threats of economic sanctions from advanced countries if they agree to move forward with the generic.  It was a struggle even to find a developing country willing to give CAMR a try. 

In the case of Rwanda, the process took three years of bureaucratic wrangling and jumping through hoops.  The folks at the legal network point out that the process for securing medicines using CAMR has nothing in common with the process usually used by developing countries to order drugs.  The CAMR law contains many complicated clauses that require a lawyer to decipher, but it is doctors and not lawyers who normally order medicines.  The main flaw, which advocates hope to rectify, is the fact that the whole cumbersome licensing process must be completed for each order of each drug for each individual country.  That means that if Rwanda wishes to secure more Apo-TriAvir, it must begin the process again.  If they wish to scale up their response to HIV (which ought to be a priority), they must begin the process again.  Meanwhile, there are millions of people in hundreds of countries in desperate need of treatment, and they will need a variety of options to accommodate different people’s needs and combat the continual threat of drug-resistance.

Supporters of Bills S-232 and C-393 are calling for the simplification of CAMR and in particular for a “one-license solution” which would allow a generic manufacturer to secure just one license for the manufacture of a particular patented medicine that they could then legally produce and distribute in any quantity to any number of countries.  If CAMR is reformed, Apotex has already committed to develop and produce a pediatric formula of Apo-TriAvir, which would save the lives of thousands of children.  To learn more and to support the reform of CAMR, visit the Canadian HIV/AIDS Legal Network.

-Miriam

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

 In the acute stage of infection, HIV attacks immune cells in the gut , wreaking havoc. Because of the many immune cells there (which makes sense when you think how many potential germs are introduced via food we take in), HIV can establish a strong hold. Many people have experienced obvious  stomach problems with HIV:  trouble digesting food, nausea, diarrhea. For those whose immune function is diminishing, certain opportunistic infections can also arise there. But it turns out there is more at work, and treatment is a challege.

Since the first monotherapies for HIV were introduced, there have been leaps and bounds in progress, with multiple drug options that attack different steps in the HIV replication process. Successful antiretroviral treatment (HAART) can reduce viral load and increase CD4 cell count, helping the immune system to stay strong. But research has found that HIV in the gut doesn’t respond to treatment the way it does elsewhere. Not only does HIV target the gut initially, it remains there, causing inflammation and compromising the natural balance of bacteria. This occurs even when someone is on treatment and their viral load may be undetectable in the blood.

Health can be optimized through HAART, but HIV can’t be cured just yet. However, researchers are trying to discover the best way to reduce inflammation in the gut so that we are one step closer to eradication.

- Janet 

There are certain topics that seem to be “off limits” in discussions with other new parents.  Unless I already know that a mom feels the same way I do, there will be places in our conversation where I self-censor because she may have different views or a different approach, and I don’t want to seem “pushy”.  Breastfeeding is one of those topics.  Many women feel very strongly about breastfeeding and many don’t.  Some women who feel strongly don’t have much of a choice anyway, because it’s just not working for them or for baby, or because they don’t have the right kind of support.  For women living with HIV, there has been even less choice involved, as breastfeeding is one of the ways that HIV can be transmitted from mother to child.  Some recent studies show that mother-to-child transmission (MTCT) during breastfeeding is significantly reduced when the mother is taking antiretroviral treatment (ARVs).  The World Health Organization (WHO) has promised to change its HIV and breastfeeding recommendations before the end of the year, giving HIV positive women more choice when it comes to feeding their babies.

Without ARVs, about 25% of babies born to HIV positive mothers will contract the virus through MTCT.  One-third to one-half of these transmissions are thought to be via breast milk while the rest take place during pregnancy or delivery.  The WHO has recommended since 2006 that mothers living with HIV formula-feed their babies if it is safe and possible to do so.  This can be complicated in places where there is no clean drinking water to prepare formula or no place to keep it cool once it’s made.  There are also women who, because of work, are not in a position to take 15 to 30 minutes up to twelve times a day to boil water and mix formula.  And of course, many women simply can’t afford the formula itself.

Recommendations got even more complicated when studies began to show that exclusive breastfeeding in the first three months of baby’s life was better (in terms of avoiding HIV transmission) than mixed feeding.  It seems that the milk of HIV positive mothers contains factors that actually help protect the baby from infection and feeding them other food and/or water while also breastfeeding undermines this protection.  Other factors like the duration of breastfeeding, whether the mother suffers from mastitis or cracked nipples and whether the baby has thrush, also affect transmission rates.  So, the WHO recommendations currently say that where a safe and consistent alternative to breast milk (i.e. clean water and formula) is not available, babies should be exclusively breastfed until six months.  If safe drinking water is available, formula-feeding has been recommended because, of course, there is zero risk of HIV transmission via formula.

While the exciting new study doesn’t contradict these facts, it does indicate that ARVs quite successfully prevent HIV transmission during breastfeeding in the same way that they prevent it during pregnancy and childbirth.  Another factor contributing to MTCT, which I have not mentioned above, is of course, the mother’s viral load.  Viral load is a bit of a hot topic recently in light of last year’s Swiss statement and the increasingly popular movement toward treatment as prevention.  The WHO and a number of international partners conducted a study of 824 pregnant HIV positive women in five different sites in Burkina Faso, Kenya and South Africa.  Mothers who received ARV treatment through the third trimester and up to a maximum of six months breastfeeding were significantly less likely to pass HIV on to their infants.  Successful antiretroviral (ARV) treatment reduces the mother’s viral load, making transmission less likely.  Project leader Dr Tim Farley told Reuters that “the results of this study show an almost two-fold reduction in the risk of HIV transmission during the breastfeeding period.”

I think this is exciting news and another step toward real choice and reproductive freedom for women living with HIV.

- Miriam

Apparently, it’s not cool at the moment to be hopeful about finding a cure for HIV/AIDS, and it seems even the vaccine hype of recent years is mellowing.  Well, I want to share with you the fact that I am hopeful.  An exciting discovery just a couple weeks ago has renewed my faith that we will beat HIV.  A recent study found that people who are successfully managing HIV with antiretroviral therapy (ART) may be able to destroy the HIV lying dormant in their cells, by targeting these cells with chemotherapy.  It’s not that I’m allowing myself to get too excited about this particular possibility – don’t want to count our chickens before they hatch and all that.  But to me as an observer (rather than a researcher), this new area for exploration came completely out of the blue, and it reminds me that there are a million-and-one different angles and directions from which to approach finding a cure.  As long as we have the ability and the means to be creative in research, to explore and learn more about this still mysterious virus, we simply cannot guess what all the possibilities are for conquering HIV/AIDS.

You may snicker and mutter something under your breath about my youthful optimism.  You were once young and idealistic too, but now you’ve grown older and wiser, right?  Well actually, this generation of young people don’t feel optimistic about much, and I inherited a good deal of cynicism from the Martin side of my family.  So, it must be something other than sheer optimism or naivety that makes me believe we will find a cure for HIV.  Maybe it’s my faith in science and discovery.  I remind myself that one hundred years ago, my great grandparents would not have imagined the possibility of oral contraceptives, space travel, or even the worldwide web.

We have learned a lot about HIV, but there is still much to discover.  Antiretroviral drugs target and interrupt different stages in the replication cycle of the virus, stopping it from producing more copies of itself.  When you are successfully managing HIV using ART, the amount of HIV in your body is so low that it might be considered undetectable, but this doesn’t mean you don’t have HIV anymore.  It’s still there, hiding out inside your cells and ready to be reactivated if your meds stop working or you stop taking them.  But what if these cells containing the dormant virus could be targetted and zapped with chemotherapy, like we would cancerous cells?  There would be no more virus to come back.  This approach to eliminating HIV in the body would only work in people who are successfully managing the virus using ART, but according to the study authors, that’s the vast majority of people who are receiving ART in Canada.  According to one headline, “Targeted Chemotherapy Has Potential to Kill [the] Disease ‘Forever’”.

While this study reminds me of the limitless potential of humanity for research and discovery, I’m also aware of some very human barriers that might stand in the way of innovation and discovery in HIV and health sciences in general.  We have to struggle not only to fund this research in a profit-driven world, but also to bring down the barriers of stigma and ignorance that prevent it from being prioritized.  These are big hurdles, but if we surpass them, I do believe there are many different possible cures for HIV/AIDS just waiting to be discovered.

-Miriam

Somehow I always manage to spot Dr. Julio Montaner in the news.  It could be because I have a bit of a thing for pioneering Argentine doctors (this is Miriam speaking, not Janet!), but it’s more likely because Dr. Montaner has been in the news a lot lately.  He’s been busy garnering support for his ambitious pilot project – “Seek and Treat for Optimal Prevention of HIV/AIDS” (STOP HIV/AIDS).  The goal of the project is to increase access to HIV treatment and care among vulnerable communities in B.C. while decreasing the HIV transmission rate.  How would it work?

Even though highly active antiretroviral therapy (HAART) is available for free in B.C., not everybody is getting it.  For example, only 13-18% of HIV positive Aboriginal people who qualify for HAART are actually receiving it.  The homeless, poor, mentally ill, men who have sex with men and injection drug users are also not accessing treatment as much as they could be.  Part of Dr. Montaner’s plan is to provide rapid HIV testing and HAART right in Vancouver’s Downtown Eastside while connecting people living with HIV/AIDS to healthcare and support services including Positive Women’s Network.  If this pilot project is successful, then it could be applied throughout the province.

But isn’t Dr. Montaner the guy who’s advocating for more people to receive treatment earlier in order to reduce the spread of HIV?  Right-o, he is.  Apparently it’s been the medical community’s best kept secret for years – HAART can actually diminish the risk of HIV transmission.  Montaner and his team at the BC Centre for Excellence in HIV/AIDS have done some number crunching.  They found that if HAART treatment was made available to more people so that even just 75% of those who are eligible were receiving it, the number of new infections each year would decrease by 37%.  This is significant considering that right now only 50% of eligible British Columbians are receiving treatment and the number of new infections per year is expected to rise if nothing changes.  And because it’s B.C.’s most vulnerable communities that are not accessing HAART, we can expect these same populations to be disproportionately affected by the increase.

At the moment the success of the project depends on more funding, in particular from the federal government.  I’ll keep scanning for Dr. Montaner’s photo in the news and we’ll keep you posted on the project’s progress.

-Miriam

In 1996, the audience at the International AIDS Conference in Vancouver heard about Highly Active Retroviral Therapy (HAART), a combination of drugs designed to limit the replication power of HIV and revitalize the immune system. HAART became the standard of treatment in the developed world, and a combination of three or more drugs with dizzying dosing schedules required tables and timers to make them effective. But HAART changed the shape of life for people with HIV. Flash forward: putting drugs into combination formulas lessened the number of pills, eased up on the scheduling challenges and some side effects. We are now in an age where HIV is often billed a chronic manageable illness, although class, race, gender and geographical differentials defy this as a universal term. Even here in treatment-rich BC, not everyone who qualifies is on treatment. The reasons why go beyond medicine.   

Anecdotally, members report  various reactions to the HIV therapy, and women often talk about their readiness to be on them. Taking the step to commit to drug therapy that could be part of the balance of their lives is not an inconsequential decision. They worry about side effects, and how they could affect their lives and people that they are responsible to and for. They feel they aren’t ready when they don’t have a stable housing situation, or are still using drugs to the point that they fear they wouldn’t manage a dosing schedule. We also hear that living in small cities or remote communities prompts fears about being exposed as HIV-positive to the community (that standard dragon, Stigma, rears its ugly head again).

Being on HIV treatment is more than a medical decision, it’s also an emotional decision. It’s a decision to face diagnosis again, a decision to make changes in the daily rhythms of life. It can be a change in health or recovery status, and taking the risk of disclosure. To embrace HIV treatment, people need good support for the fundamentals- drug treatment, housing, food. And they need to understand what it means to be on it- the benefits, the risks, the commitment and considerations. Positive peers, community supports, and health care providers can all play a role in providing accessible information and the bridges to support. Lives really depend on it.

- Janet

There are lots of questions that come up when someone is newly diagnosed with HIV. One of those questions can be, “Can I have a healthy baby?” Many positive women want to have children, and for most women, the answer is yes. HIV itself is no reason to put parenting dreams away, but health care providers across the country may not know that. Women can face stigma and reluctance from care providers when the topic of pregnancy is broached, but new national guidelines to provide reproductive care to positive men and women should make some changes.

PWN is part of a national committee working to develop HIV pregnancy planning guidelines that can be used across Canada. While there are some great facilities in spots across the country (BC’s Oak Tree Clinic is one of them), a set of clear national guidelines would help so that women receive supportive, informed care no matter where they live. Guidelines that can be used to provide services to positive people across the country will help to educate care providers and hopefully work to dispel some of the stigma that positive women and couples experience with pregnancy.

Many members of PWN are moms, and discussions about pregnancy and raising kids often arise in the drop-in. An often asked question is about transmission during pregnancy. If HIV is treated during pregnancy, the transmission rate from mother to baby is less than 2%. Another concern is whether a woman will live to see her children grow up. With advances in treatments and evidence of PHAs living longer and longer, we have lots of reasons to be optimistic (no parent, regardless of HIV status, has a crystal ball to guarantee they’ll live to see their kids grow up).

These national guidelines will be aimed at positive people in various family units. Magnetic couples will be able to get information about getting pregnant safely when the woman is positive and the man isn’t, and vice versa. What if both partners are positive? What if a single or lesbian woman wants to get pregnant?  Care providers and PHAs deserve clear information about options. 

I’ll keep you up to date as things progress. The committee will be meeting at the CAHR conference later this month, and I’ll let you know what happens there. In the meantime, if you want information on pregnancy or pregnancy planning, the folks at Oak Tree would love to hear from you.

- Janet