Care & Treatment: HIV as a Chronic Condition

This article was written by AIDS Calgary’s Support Services Team Lead


There have been many developments in HIV/AIDS over the last 30 years. The changes have made us reframe and rethink the way we see and understand HIV. In a very short time, receiving an HIV diagnosis has been altered from a death sentence to a chronic condition. At the International AIDS Conference in Washington DC in July 2012, there was an interesting session on what it means to see HIV through the lens of a chronic condition. A clear message was delivered that both HIV and other non-communicable diseases (NCD) that are chronic conditions can learn a lot from each other and can they can influence the way care and treatment is provided.

First, there are similarities between HIV and NCD that need to be understood. NCD such as diabetes and heart disease are massive issues in society both by the number of people impacted and the impact they have on financial, social and medical systems. Both, as well, have a long term impact on people’s lives. HIV & NCD are episodic which means people affected can experience periods of illness and periods of wellness throughout their lifetimes. Both, however, involve a high loss of life at a younger age. They also have a similar impact on persons’ lives involving multiple layers of medical care, appointments, medical regime and influence major life areas such as employment, social and mental health. Lower & middle income populations are over represented in both HIV and NCD.

HIV, of course, is also unique. There are differences between HIV and NCD that influence the care and treatment of HIV. In good news, HIV has a falling mortality rate unlike some NCD. On the other side, HIV carries a stigma like no other illness. There are also different key populations that are at an increased rate of HIV such as people who use drugs, men who have sex with men and sex workers who unique needs need to be addressed when looking at care and treatment.

Keeping the similarities and differences in mind, HIV can and has taught us a lot about care and treatment of chronic conditions. HIV/AIDS has been a pathfinder in navigating chronic health care. When looking at the rapid changes in HIV treatment, UNAIDS reports that HIV has become the first illness to provide support for chronic care in multiple and diverse settings. HIV care has also been multifaceted in its approach-medical assistance, social support, education, awareness and advocacy have all played a big role in care and treatment. As well, one of the most unique aspects of HIV is that the voices of those affected have been prominent as people living with HIV (PHA) have driven the development of prevention, support and care of HIV.

What does this all mean? When addressing chronic illnesses, we know that we need to have simplified, affordable and accessible treatment and care for all those living with the condition. Those living with chronic conditions also need support across the lifespan that adapts and changes to a variety of needs throughout the lifecycle. Addressing chronic conditions also means offering support and care to those affected - the family, friends, employers and caregivers, as examples, of people living with a chronic condition. Challenges, of course, of lumping HIV with other chronic illness is that we don’t address the uniqueness needs of those living with HIV, such stigma or the uniqueness needs of the key populations affected.

For more information
AIDS 2012 Care and Treatment for People with Chronic Conditions: What Can We Learn from the HIV Experience? A Health Systems Perspective abstract http://pag.aids2012.org/session.aspx?s=111

noncommunicable diseases
UNAIDS Report: Chronic care of HIV and non-communicable disease shttp://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2011/20110526_JC2145_Chronic_care_of_HIV.pdf

Day 0 - Fear

ACAA had the opportunity to share a fantastic video from one of our volunteers. The video detailed his own personal story of being a young gay man living with HIV and the stigma he faces regarding online disclosure. http://aidscalgary.blogspot.ca/2012/01/lets-talk-about-online-disclosure.html We are very proud of this individual for sharing his story. He is back with a new video regarding his new treatment regimen.

The views and opinions expressed in this video are soley those of the original authors and other contributors. These views and opinions do not necessarily represent those of AIDS Calgary Awareness Association, the staff, and/or any/all contributors to this site. For more info on our GIPA program, please visit: http://www.aidscalgary.org/getinvolved/gipa.cfm

The Psychology of Do or Don’t I....

This article was created by ACAA's Project Manager of Bow Valley. To learn more about the programs and services ACAA offers in Bow Valley visit http://www.aidscalgary.org/supportservices/bowvalley.cfm or contact info@aidscalgary.org.

Every day we make choices and decisions that involve a certain amount of risk, how we decide in each circumstance depends on both external and internal factors. Add other people to our decision making process and it gets even more complicated, at least it does for most people.

In our prevention efforts at AIDS Calgary I think it would be safe to say that we are all working towards preventing the spread of HIV and other STIs and a big piece of that work is around education and promoting condom use.

We share the process of how HIV and other STIs are transmitted, we talk about the risk involved and in our efforts to move more people towards using condoms and we also look to indentify the barriers that get in the way of people using them.

We acknowledge that there are many circumstances that contribute to a person’s decision not to use protection, but for this conversation I want to address the decision to have unsafe sex when a person does have all the facts, knows all the risks and has access to condoms.

There is likely no definite answer here, especially when we’re talking about investigating choices and decisions, but there may be evidence of how complicated our minds and choices really are.

I believe the complexity to how we each make decisions everyday travels down a path of both conscious and unconscious choices. There are many people who knowingly take the risk of getting HIV or other STIs through having unsafe sex, which raises a couple of questions for me.

Is there a moment when the person has a thought, impulse or even a conversation that they should wear protection but yet they still continue forward with having unprotected sex?

If they do then my next question is… what is it that overrides those thoughts?

Think about it, does a person with all the facts and access to condoms actually consciously say to themselves “I am choosing to have unprotected sex right now”?

I am interested to understand and identify if there is indeed an internal struggle with our decision making processes. If there is an internal conflict right before a person engages in sex, then I would suggest that understanding this dynamic is one of greatest barriers once education on all the facts is presented.

When I stand up in front of a group to provide education on HIV and STIs I am always curious to ask the question, “What are the reasons why you think people don’t wear condoms?” Some people will answer from personal experience and others from an outside perspective.

Each group will come up with different reasons such as:
They were too intoxicated
Shows a sign of lack of trust if you wear a condom
There are no condoms in the vicinity
Financially cannot afford to buy condoms
Doesn’t feel as good
You know the person well enough
Laziness

These are just a few of the examples that I hear during my presentations and for me they represent answers to more questions. It’s the tip of the ice berg when it comes to how we make our individual choices, especially when it comes to the psychology of do I or don’t I put this condom on.

It is a lot easier to have a discussion about condoms before having sex but that conversation can be tricky and sometimes uncomfortable. Generally speaking it’s not a talk that many of us prepare for, so that in itself can build the momentum towards experiencing such a conversation as embarrassing or if left unspoken creating that elephant in the room.

How will the other person respond, will they get insulted? Will I ruin the mood? And what are the chances this person has HIV or an STI? These are just some examples that I have heard when talking with very honest people about their internal struggles of deciding to bring the topic up or not.

I knew a young man that used to have multiple partners when he was younger and most of the time it was with strangers. He was extremely intelligent, knew the facts of how HIV and STIs were transmitted and often had a condom in his pocket when he was engaging in sex, yet he almost never used it.

Once when we were talking about why he had condoms in his pocket and why it was that he never used them. He replied with “I don’t know, I know better but when I get to that moment my attitude changes. It’s as if I don’t care in that moment and then spend the entire next day worrying about the consequences.”

At the end of the day we are all adults who have the right to choose the kind of sex we want to experience. I believe that self awareness is good for all of us and each of us thinks, acts and responds differently. With a better understanding of ourselves we can better support our decisions.

Mothers and HIV

With Mother’s Day coming up this weekend, I thought I would share some knowledge surrounding mother-to-child-transmission (MTCT), which is so often a topic surrounded by myth and false information.

Primarily MTCT can occur during the pregnancy, the birthing process and through breastfeeding. In Alberta, pregnant women are offered HIV testing although there is an option to ‘opt-out’ of the testing. You can read more on this topic from our November 5/10 blog titled “Opt-out HIV Testing.” By knowing her HIV status ahead of time, a mother can significantly reduce the risk of transmission to her child. It has been shown that by taking the proper medications, a mother’s risk of transmission during delivery can be reduced to under 2%. Without the proper treatment and medications the risk of transmission rises to 20-45% during delivery (Avert, 2011).

Mothers who are HIV positive will be given antiretroviral drugs (ARTs), to help to prevent the transmission to the child and once the child is born, they too will be started on a medication regiment known as Azidothymidine (AZT) for the first six weeks of their life. When a child is born they have their mother’s antibodies, which can be deceiving as the child could test ‘positive’ for HIV without actually being HIV positive. It can take sometime before a child develops their own antibodies and this is why a child is tested for up to 12-18 months after they are born (Alberta Medical Association, 2005). As the standard HIV test measures against antibodies in the system, a child would be tested specifically for the virus itself to determine if they are living with HIV.

As mentioned earlier, HIV can be transmitted through breast milk, which can pose questions of affordability and availability of formula for new mothers. The statistics state that the risk of transmitting the virus from mother to child through breast milk can vary from 20-45% (CATIE, 2009). Unfortunately not every mother has access to clean drinking water to mix with the infant’s formula. This may leave a mother with no choice in her mind but to breast feed, rather than give her child unsafe formula. Studies have shown that if a mother does not have access to ARTs, she is better off to breast feed the entire time rather than go back and forth between formula and breast milk. The mixing of breast milk and formula can break down the lining of the infant’s stomach, therefore potentially increasing the risk of transmission.

In Alberta, an HIV positive mother can access free formula through the Northern and Southern Alberta HIV Clinics. Here at the Calgary Cares Centre, we offer a Positive Women’s Network which is held every second Thursday of the month and is client directed. If you are interested in meeting with fellow positive women and share stories and ideas, or discuss topics like mother to child transmission, we encourage you to come by and be a part of the community!

References:
1.Avert: Averting HIV and AIDS. HIV/AIDS and Pregnancy. Retrieved March 30, 2011.
2.CATIE. You can have a healthy pregnancy if you are HIV positive. Retrieved March 30, 2011.
3.Alberta Medical Association. Information for Health Professionals on HIV and Pregnancy. Retrieved March 30, 2011.

This article was written by one of AIDS Calgary Awareness Association's Case Managers.

Drug Resistance - Part 2

The second part of our series on drug resistance covers current findings of drug resistance studies in San Francisco and the implications being reported internationally.

The number of identified drug resistant HIV strains is increasing steadily: from 80 documented strains in 2007 to 93 documented strains in 2008.(1) The direct and indirect health costs of drug resistance include: the need for increasingly expensive second and third line drugs, the transmission and spread of drug resistant virus within communities, and the ongoing need for research and development of new drugs and vaccine options.

In early 2010, the Journal of Science published new research into the prevalence and implications of drug resistance in San Francisco. People living with HIV in San Francisco have been using ARVs extensively since the 1980’s. A team of scientists from the University of California, University of Tennessee and University of Ottawa created a mathematical model to track the transmission of multiple strains of HIV and analyzed the data. The results predict a wave of drug resistant strains emerging over the next 5 years:

“Our modeling shows that 60% of the currently circulating ARV-resistant strains in San Francisco are capable of causing self-sustaining epidemics, because each individual infected with one of these strains can cause, on average, more than one new resistant infection. It is possible that a new wave of ARV-resistant strains that pose a substantial threat to global public health is emerging” (2)

The model was applied to San Francisco, but the same predictions are made for other parts of the world where large scale treatment programs are rolling out. According to Sally Blower, director of UCLA's Center for Biomedical Modeling, "San Francisco is like the canary in the mine. In fact, the most significant implications of our work are for countries where treatment is just being rolled out". (3)

Not surprisingly, those at the frontlines of HIV treatment programs in hyper-endemic areas confirm increasing rates of drug resistance. In South Africa, where free ARVs have been available for 6 years, health care providers are describing high rates of treatment failure caused by drug resistance and an inability to offer their patients alternatives. According to one doctor, "For the first two or three years I was not seeing it. It was rare; now it is really daily”. (4)

In many parts of the developing world, the available supply of anti-HIV treatment consists of what are known as first generation ARVs. First generation ARVs cost less, but are not as effective at controlling HIV as the later generation medications available in resource-rich areas. Unlike newer and more expensive therapies, people on first generation ARVs can develop drug-resistance much more quickly - with only a single mutation of viral genetic code in some cases. To avoid resistance, people living with HIV must have access to an uninterrupted and lifelong supply of ARVs.

Furthermore, many clinics and health centres in the developing world do not have the resources to monitor viral load or perform pre-therapy resistance testing. Consequently, treatment failure caused by drug resistance is often a game of wait and see. Coupled with wide-spread speculation about a lack of ongoing political commitment to HIV/AIDS funding, the ability to provide a sustainable and effective supply of anti-HIV therapy to the developing world is in jeopardy.


Sources:

1. The World Health Organization 2009 List of Mutations for Surveillance of Transmitted Drug Resistant HIV Strains Retrieved Feb 18, 2010 from http://hivdb.stanford.edu/pages/WHOResistanceList.html
2. Evolutionary Dynamics of Complex Networks of HIV Drug-Resistant Strains: The Case of San Francisco. Retrieved Feb 5, 2010 from http://www.sciencemag.org/cgi/content/abstract/327/5966/697
3. New Study Raises Concerns About HIV-Drug Resistance. Retrieved Feb 17, 2010 from http://www.time.com/time/health/article/0,8599,1953718,00.html
4. In South Africa, Drug resistant HIV Emerging. Retrieved February 9, 2010 from
   http://www.msnbc.msn.com/id/34624393/ns/health-aids//

Drug Resistance - Part 1

Recent studies identify an alarming increase in drug resistant strains of HIV, and concerns are growing about the sustainability of HIV treatment programs at home and abroad. Researchers estimate that international levels of drug resistance range from 5% to 30%, up from about 1% to 5% ten years ago.1 Among certain high-risk populations, drug resistance estimates are as high as 80% according to research published by the International AIDS Society.2 Furthermore, unexpected costs associated with monitoring and responding to drug resistance could double the amount of funding the United Nations has designated as necessary to address HIV/AIDS worldwide, funding that is already facing significant cuts and uncertainty.

In the first of this 2-part series on drug resistance, we start with the basics: What is drug resistance and how does it happen?

Mistakes & Mutations

Drug resistance means that medications to control HIV cease being effective. The easiest way to understand drug resistance starts with an explanation of how HIV functions. Like all viruses, HIV’s singular goal is to find a host and replicate. HIV hijacks human immune system cells, changes their genetic instructions, and turns them into virus-making factories. Without treatment, HIV is capable of producing billions of copies in a single day. Newly formed viral copies go on to infect additional cells, produce new copies, and so on. However, a factory trying to produce billions of copies of anything is likely to make some mistakes along the way.

As the HIV factory churns away it makes a lot of mistakes. Mistakes result in new forms of virus that are slightly different than the original; these changed viral copies are called mutations. While most mutations are harmless, some will change in just the right way to resist anti-HIV drugs (also known as ARVs). These mutations are perfectly natural and completely accidental. Ironically, drug resistance happens because HIV is not very good at doing its job.

Missed Doses = More Mutations

ARVs work by limiting HIV’s ability to replicate. Fewer copies of HIV in the body mean less potential to damage the immune system. Fewer copies of HIV also mean less chance of mutations. If a person takes ARVs as prescribed and without missing doses, viral replication is curbed.

However, even a few missed doses allow the amount of new virus to increase quickly. More copies of virus means a greater chance of developing drug-resistant mutations. When ARVs are resumed, the drug-resistant mutations are able to survive and replicate. The new strain will eventually become the predominant or most common type of HIV in the body. The current ARV (and possibly an entire class of ARVs) will no longer be able to control the virus.

Click here for part two where we cover current findings of drug resistance studies in San Francisco and the implications being reported internationally.


Sources:

1. In South Africa, Drug resistant HIV Emerging. Retrieved February 9, 2010 from
   http://www.msnbc.msn.com/id/34624393/ns/health-aids//
2. In South Africa, Drug resistant HIV Emerging. Retrieved February 9, 2010 from
   http://www.msnbc.msn.com/id/34624393/ns/health-aids//

Treatment as Prevention – A Three Part Series

Part Three – Early Treatment for the Good of All?

What if you went to the doctor, and the doctor said, “We know that even though you have HIV, you are healthy and feel great. But, we want to put you on some medication anyway. Our research has shown that this will help prevent you from passing on the HIV, but it may also make you feel terrible and make you even sicker in the long run.”

This is the crossroads health authorities have arrived at, one where individual health priorities could become dwarfed by a public health imperative to start using HIV treatment as HIV prevention. Recent studies have demonstrated that individuals on HIV treatment are less likely to pass on HIV, primarily due to decreased levels of the virus in their bodies (see Treatment as Prevention Parts 1 and 2).

Based on a recent mathematical modeling study, the impact of this could be dramatic in a country like South Africa with a generalized HIV epidemic. The study measured the impact on HIV transmission if all people received universal voluntary HIV testing followed by immediate treatment with anti-retroviral therapy.1 The results are striking, predicting that new HIV infections would drop by 95% within 10 years.2

This seems like wonderful news, a way to end new HIV infections and to stem the tide of a devastating global pandemic. But, this study ignores one very important factor- whether the people actually need treatment! In a North American context, people newly infected with HIV can often live for 10 years without experiencing symptoms. Treatment is typically not started until a person’s immune system starts to falter or the person starts to develop opportunistic infections.

The reason for delaying treatment is to postpone serious medication side effects such as fatigue, nausea, diarrhea, facial wasting, lipoatrophy and neuropathy.3 This delay may also enable people to postpone onset of significant liver, kidney and other health problems.4 Finally, people may develop drug resistances over time so it may be better to delay treatment in order to help prolong treatment efficacy given the limited number of treatment options available.

There are new studies which challenge the exact CD4 count at which people should start treatment.5 However, there is still a general consensus that treatment should be started when an individual’s health status warrants it. Ultimately, individuals have a fundamental right to individual treatment determination, and any public health policy must respect the importance of this.

Before implementing broad based treatment programs for the sake of prevention, it is also important to recognize that regular risk reduction strategies and safer sex practices are still effective ways of preventing HIV transmission. For those who do not engage in high risk activities, placing them on early treatment may simply force them to compromise their good health in order to prevent transmission of a virus they weren’t going to transmit anyway.

Clearly, HIV treatment has an important role to play in improving the health of individuals and contributing to a reduced risk of HIV transmission. Likewise, wider HIV testing in our community would help diagnose people living with HIV earlier and reduce their risk of unknowingly passing on the virus. However, any major shifts in treatment or testing policy must carefully weigh the rights of individuals and the possible long term health impacts on them against the possible benefits of a new and controversial approach to treatment as prevention in our communities.




1 Universal voluntary HIV testing with immediate antiretroviral therapy as a strategy for elimination of HIV transmission: a mathematical model. 2008. Granich, Reuben M, Gilks, Charles F Gilks, Dye, Christopher, DeCock, Kevin M, Williamns, Brian G. The Lancet. Retrieved January 2009 http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(08)61697-9/fulltext
2 Math model: HIV can be eliminated in a decade, 2008. Associated Press. Retrieved January 2009 http://www.msnbc.msn.com/id/27911541/
3 HIV Medications: When to Start and What to Take, 2006.The Body. Retrieved January 2009 http://www.thebody.com/content/art12718.html and Side Effects, Opportunistic Infections and Coinfections Prevention and Treatment, The Body. Retrieved January 2009 http://www.thebody.com/index/treat/oipage.html
4 A Practical Guide to HIV Drug Side Effects, 2006. Canadian AIDS Treatment Information Exchange. Retrieved January 2009 http://www.thebody.com/content/art46570.html
5 Growing Evidence Supports Early Treatment, 2008. Dalton, Paul. Project Inform. Retrieved January 2009 http://www.thebody.com/content/treat/art47351.html