Alberta’s Hidden Heroes

By Jody Lewis, HIV Edmonton's Volunteer & Communications Coordinator

There have been many nameless heroes who championed in the field of HIV right here in Alberta. It is with great sadness the people of Alberta will never get to hear their names, see their picture or know their stories and their causes. Most people with HIV work quietly in the background, giving up their lives while passionately and determined to make right the many wrongs projected on them and to others living with this disease.

Some of our HIV positive heroes have done medical drug trials which eventually destroyed their bodies and minds, with hopes that their sacrifice will save countless lives. Some HIV positive heroes stand up in front of thousands of Albertans every year educating those of the perils of HIV, then quietly blend back in to the community. Some have fought for access to life saving medications, which thousands of Albertans now benefit from. Others fought to change government policies in healthcare, and social policy which benefit every Albertan citizen to this day. Many HIV positive heroes stand up for human rights and access to medical treatments such as microbicides, so women worldwide can have more control over their bodies especially in countries where they have no rights. Yet these heroes remain hidden because of HIV stigma.

If you try looking for the faces of those infected with HIV, you will be hard pressed to find just a handful of HIV positive Albertans that are able to step forward, and to speak confidently and proudly of their HIV positive status. All too often the only names and pictures Albertans see are that of the rogue HIV positive person who has allegedly tried to spread the disease maliciously to the seemingly innocent citizens. A lot of these criminalized HIV positive individuals are unable to, in some manner, disclose their status for many reasons, such as; they have not received appropriate HIV post test counselling or that individual may have a neurocognitive and psychiatric situation. However, this negative portrait of HIV continues to keep the HIV positive heroes of Alberta hidden, forgotten and unrecognized. 

Many of these people deserve recognition, they deserve to be nominated for distinction awards, honours and medals; Most of Alberta’s HIV positive heroes truly deserve the Order of Canada in many ways.  The HIV positive hero proudly live life without these acknowledged achievements, knowing that the work they do may save even just one life. Yet, even in their deaths they are still unable to be honoured with the true dignity and respect deserved of their life’s achievements. Many of the hero’s families continue to be ashamed of that HIV positive status their sons and daughters had carried in life.

HIV Edmonton currently houses five “Memorial Quilts,” on which there are hundreds of names stitched on them. Their heroic deeds are now lost to the threads that hold their stars, so HIV Edmonton would like to invite the public to come and reflect on these marvellous quilts during our regular business hours. If you recognize an HIV positive heroes star, we would like to know and share the stories these threads hold.

“To be a star, you must shine your own light, follow your own path, and don't worry about the darkness, for that is when the stars shine brightest.” African Proverb

Official Announcement from the Board of Directors

The Student’s International Health Association

The Students’ International Health Association (SIHA) is a student group based at the University of Alberta that “strives to transform primary health care philosophy into action.” Our projects are based on the ideals of universal health care with principles of sustainable, community-based programming. SIHA Local coordinates many projects within the Edmonton community and surrounding areas, while our International Projects provide education around the world in countries including Guyana and Tanzania.  

SIHA Local Project’s has been providing “health for all” in Edmonton and surrounding areas since the early 1990’s. In 2003, SIHA formed a formal working partnership with the HIV Network Society of Edmonton (HIV Edmonton) and has since worked with HIV Edmonton to deliver HIV/AIDS education programs in the greater Edmonton Area, including schools and youth groups. In addition, SIHA provides education about sexually transmitted infections (STIs) to these same areas. Ultimately, SIHA’s goal is to provide information about harm reduction in a non-biased, non-judgmental way. This involves presenting youth with options on reducing or eliminating their participation in activities that could put them at risk for contracting HIV or STIs. We are also aiming to address communication skills for youth when negotiating the use of safe-sex barriers, and making related positive lifestyle choices. 

Over the summer, two new curriculums have been developed and we are hoping to have these up and running for the fall! SIHA’s Healthy Lifestyles curriculum includes nutrition, eating disorders and body image education as well as an analysis of media pressure associated with body image. This curriculum aims to assist youth in maintaining a healthy relationship with their bodies.  SIHA has also developed Big Tobacco, which is a curriculum that focuses on the socioeconomic impact of the tobacco industry and how youth are effected. These presentations are aimed at high school students, in hopes of providing a new way for youth to understand the negative impact the tobacco industry. We also provide a Tobacco curriculum for grade 6 students, which provides basic facts, health information and ways in which students can overcome peer pressure associated with tobacco. In addition to our youth education programs, SIHA also works on the University of Alberta main campus to raise awareness among students in regards to all of the aforementioned health topics. It is our hope that with these efforts and all of the education programs mentioned above we can help to promote health lifestyle choices among today’s youth. 

SIHA Local's Main Objectives: 

To provide information, support, and skills around sexuality, STI & HIV prevention, Tobacco use and healthy living to youth through peer-facilitated workshops.
To reduce the incidence of high risk sexual behavior among youth and young adults, using a harm reduction model.
To promote healthy lifestyle choices among youth.
SIHA Curricula Currently Available: 

HIV/AIDS
Sexually transmitted Infections (STIs)
Healthy Lifestyles
Tobacco and Cessation (Grade 6)
Big Tobacco
 

If you are a University Student that is interested in joining our diverse team of educators, we are accepting applications in September! If you would like an application or have any questions, please email Lauren Paul (VP Local) or Amanda Sarrazin (President) at siha.local@gmail.com.

To book a presentation for any of our curricula, please email us at siha.local@gmail.com. 

2011 HIV Edmonton’s Community Education SIHA Summer Student, Lauren Paul

The knowledge and experience that I have gained with HIV Edmonton’s Community Education SIHA Summer Student position at has been so beneficial. I was very fortunate to have had the opportunity to work with so many amazing people this summer and I had the opportunity to learn from my colleagues, especially Tsion and Rob, with whom I worked closely.

HIV Edmonton's Community Education Facilitators, Tsion and Rob, allowed me to help them with many different events and activities which taught me so much about HIV and how to educate others about this disease. I had so many great experiences with conferences I was able to attend, such as the CATIE Harm Reduction conference and training sessions such as Dynamics; previously known as HIV 101.

Before working at HIV Edmonton, I only had an understanding of the basic facts of HIV and AIDS during my time at SIHA (Students’ International Health Association).  I didn’t really understand just how many different factors came into play for someone who is living with HIV. Presenting HIV and AIDS education at schools and working at events such as Dynamics, Boonstock, Millicent’s Red Diamond Retreat and International Youth Day has allowed me to build much more confidence regarding my knowledge of HIV and AIDS as well as my ability to public speak.

 My favorite presentation that I had was with Tsion. We were at the Africa Centre for Career Day. HIV Edmonton’s Community Education Department had been asked to come and speak on HIV Edmonton services. Instead our presentation turned into a discussion on HIV and AIDS. The kids had so many questions, some very off topic (haha!) It was nice to be able to teach the audience about HIV and answer all of the questions they had.

Throughout my position at HIV Edmonton, I also had the opportunity to meet many people from other non-profit organizations. Through talking with them, I discovered a lot about people living in vulnerable situations. There is a lot of incredible services that organizations, like HIV Edmonton, do for the community.

I am so grateful to have learnt from all of the wonderful people associated with HIV Edmonton and I really hope to make a difference working with other AIDS organizations in the future. I have gained valuable knowledge on HIV and AIDS that I didn’t have before. I now have a different outlook and understanding, which I hope to pass on to the volunteers in the Student’s International Health Association (SIHA) this year. I want to be able to increase education and decrease stigma and discrimination. Thank you to all of the staff and clients of HIV Edmonton that have made my experience so memorable!

What’s going on in HIV cures?

 

About The Author

It was on the December 31, while I was looking for a job on the Internet, when my GP phoned to tell me that I was tested positive on HIV. Then I made the most rational decision I had ever made in my life, instead of fall in desperation and despair, I changed my search from jobs to HIV sites. I started to learn about HIV that day, I’m still learning, and I’ve planned carrying on.

I had to attend the classical New Year Eve party that night and I did. It was very hard pretending that everything was right while I had an inner turmoil. I shared my best wishes with everybody while I was thinking: “I’m sick, they aren’t”. As the year was ending and a new year was coming on, my life was changing from past to future.

After a while I changed my mind. Becoming positive was as a door that opened to different horizons in front to me. I crossed the threshold and began to think differently, and to act differently as well. First of all I felt the need to know how would be my future being “positive”. I knew about a lot of researches going on and very much of them are very promising. As I learnt more and more about HIV I got a personal perception of HIV. Now I believe that the first aim of any positive people is to be healthy to receive the new treatments that will be available in the next years. I hope I'll see the end of this movie.

M. Garcia

What’s going on in HIV cures?

Antiretrovirals already reduce HIV to undetectable levels in the bloodstream, even though a person taking the drugs is not cured.

To find lingering virus in a person taking anti-HIV drugs, scientists have to use painstaking methods to collect millions of blood and tissue cells and analyze them for residual HIV. These methods are not practical for use on the general HIV-positive population, particularly since HIV will become rarer and harder to find as methods for eradicating it get better. As a result, many researchers think that HIV cure research will be hampered until a better way of detecting residual HIV reservoirs is found.

It is also possible that it is unnecessary to completely eliminate HIV from the body that reducing it below a certain threshold will ensure HIV cannot rebound to cause a new infection. However, whether this is true, and if so, what that threshold is, are still unknown.

In the meantime, the definition of an HIV cure is likely to follow the path of cancer – people who show no evidence of the disease for a certain period of time, in the absence of antiretroviral drugs, would be declared cured.

Researchers are increasingly turning to the question of how HIV can be cured, or at least put into long-term or permanent remission without antiretrovirals. There are two strategies currently being investigated to cure HIV: sterilizing cures and functional cures. [1]

STERILIZING CURES

The sterilizing cure method aims to eliminate all HIV-infected cells, completely purging HIV from the body.

Sterilizing cure is one that reduces viral loads to less than 1 copy per milliliter of blood, either permanently or for an extended period of time.

The only current example of a sterilizing cure is from a case study of a man with HIV who had acute myeloid leukemia, a form of cancer that starts in the bone marrow.

HIV requires the CCR5 protein, which is on the surface of white blood cells, in order to attach to and infect the cell. People naturally born with an alternate form of the CCR5 gene are almost entirely immune to HIV.

A strategy of using bone marrow transplantation with a CCR5 mutant donor is not a realistic cure for HIV given the toxicity and complexity of the treatment. Additionally, it is still not clear why and

how HIV was eliminated in this patient, although scientists continue to study him.

FUNCTIONAL CURES

A functional cure aims for a remission state and long-term control of HIV, including low viral loads in the absence of antiretroviral therapy.

A functional cure is one that reduces viral loads to less than 50 copies per milliliter of blood, either permanently or for an extended period of time.

One natural example of a functional cure can be found in elite controllers. Elite controllers are individuals infected with HIV whose immune systems are able to naturally control the virus without antiretroviral drugs. These individuals successfully maintain stable CD4 (white blood) cell counts and low or undetectable viral loads.

Researchers are highly interested in further understanding how elite controllers manage HIV and avoid disease progression, since this could help with identification of new methods to treat people with HIV or development of an HIV vaccine.

How to get it?

1.- Using Gene Therapy To Make Cells Resistant To HIV

Gene therapy is an experimental approach that is currently in early stages of clinical testing. Gene therapy involves modifying the genetic information in a cell so that it becomes, for example, resistant to HIV infection.

In most cases, cells are taken from the patient’s body, genetically modified in the laboratory, and then injected back into the patient.

HIV requires the CCR5 protein, which is on the surface of white blood cells, in order to attach to and infect the cell. People naturally born with an alternate form of the CCR5 gene are almost entirely immune to HIV.

Since his transplant, no sign of HIV has been detected in The Berlin Patient.

In one recent high-profile Phase 2 gene therapy clinical trial, HIV-positive people on antiretrovirals were injected with modified immune cells lacking the CCR5 protein. The therapy did not eliminate HIV in these patients, but it did successfully raise CD4 counts in patients whose immune systems had failed to recover after starting antiretroviral therapy.

Another approach under investigation is an RNA-based gene therapy. This strategy works slightly differently but is also aimed at reducing or eliminating CCR5, as well as slowing HIV replication.

Results showed that the treatment was well tolerated and that the gene therapy was successful, although results faded after four weeks. Nonetheless, the study offered a proof-of-concept that RNA gene therapy is possible.

While gene therapy has potential, it may not be particularly practical in the long run. [2]

2.- Therapeutic Vaccines

Therapeutic HIV vaccines work by enhancing the body’s natural immune response, helping to control HIV in people already infected with the virus. This is in contrast to preventative vaccines, which are used in HIV-negative individuals to prevent infection.

Researchers hope that therapeutic vaccines could be used to reduce or eliminate the need for HIV treatment.

Results from two recent studies in Simian Immunodeficiency Virus (SIV)-infected monkeys have been promising. SIV is a retrovirus similar to HIV that infects primates; studying SIV can provide insight into potential therapies for HIV in humans.[3]

A British clinical trial of HIV vaccine demonstrates an approximately 90 percent difference in viral count in HIV-infected people, researchers say.

Gregory Stoloff, chief executive officer of Seek -- a privately owned biopharmaceutical company -- said this is the first time ever that a human immunodeficiency virus vaccine has shown such a meaningful result in a human clinical trial. [4]

3.- Latent HIV Activators

The major obstacle to a cure is latent HIV, HIV that lies dormant during treatment until treatment is stopped. Eradicating latent HIV is a top priority for scientists, and several drugs are currently being tested for their ability to reduce or eliminate this hidden reserve of virus. Since antiretroviral drugs usually work by blocking replication, they do not work on latent HIV.

Zolinza (vorinostat), a drug currently approved to treat a type of lymphoma, shown that successfully activates latent HIV in infected cells in the laboratory. Studies in other patient populations have suggested that Zolinza causes side effects when used long-term, but physicians hope that prolonged treatment with the drug would not be necessary.

Prostratin, a traditional Samoan treatment for hepatitis, also activates latent HIV in the laboratory. Prostratin is still in pre-clinical studies but may be too toxic for use in humans.

Another class of drugs under investigation is DNA methylation inhibitors. This class of drugs is used to treat cancer.

Dacogen (decitabine), a drug approved to treat a group of blood conditions that are often considered cancerous, has been shown to activate latent HIV in cells from people with HIV. Results from other studies showed that Dacogen was more effective when used in combination with prostratin and other drugs.

Finally, researchers are also investigating the protein IL-7, which helps immune cells develop and survive. In a recent study, results showed that IL-7 was well-tolerated, indicating that it may be successfully use to reactivate latent HIV. IL-7. [5]

4.- New Drugs

Researchers at the Massachusetts Institute of Technology’s Lincoln Laboratory have developed and demonstrated a novel broad-spectrum antiviral approach, called DRACO—which stands for double-stranded RNA activated caspase oligomerizer—that may prove to be effective against virtually all viruses, including HIV and hepatitis, according to a report published online by PLoS One. DRACO selectively induces cell suicide, in cells containing any viral double-stranded RNA, rapidly killing infected cells without harming uninfected cells.

In theory it should work against all viruses, says Todd Rider a senior staff scientist in MIT. Mr. Rider began to develop this project 11 years ago. [6]

Unknown Risks: Potential Safety Issues With Current Approaches [7]

Latent HIV Activators

For example, one of the ways scientists hope to cure HIV is by activating latent HIV, HIV that lies dormant during treatment until treatment is stopped. Many of the drugs that are being evaluated as latent HIV activators, including histone deacetylase (HDAC) inhibitors, work by affecting the way cells read and use DNA.

“A theoretical risk of HDACIs [HDAC inhibitors] is that they will induce activation of other retroviruses and/or DNA viruses including cytomegalovirus (CMV), hepatitis B virus (HBV), and JC [John Cunningham] viruses which has been demonstrated in vitro [in the laboratory],” wrote Dr. Lewin and Prof. Rouzioux in their review.

Using Gene Therapy To Make Cells Resistant To HIV

Another treatment that raises cancer concerns is gene therapy. Gene therapy also involves changing the way cells use DNA, often by inserting new genes. If this process does not work as it should – if the new gene is inserted in the wrong place, for example – it can cause tumors to develop instead. This has been observed in some gene therapy trials.

In the most advanced HIV gene therapy trial to date, a Phase 2 clinical trial targeting the CCR5 protein that HIV needs to infect cells, there has been no evidence so far of cancer or other major side effects. However, the researchers will continue to monitor the participants to make sure they do not develop any problems longer-term.

M. Garcia

References

[1] http://www.aidsbeacon.com/news/2011/05/12/advances-and-barriers-to-a-cure-for-hiv-part-1-types-of-hiv-aids-cures/

[2] http://www.aidsbeacon.com/news/2011/05/16/advances-and-barriers-to-a-cure-for-hiv-aids-part-3-gene-therapy-and-therapeutic-vaccines/

[3] http://www.aidsbeacon.com/news/2011/05/16/advances-and-barriers-to-a-cure-for-hiv-aids-part-3-gene-therapy-and-therapeutic-vaccines/

[4] http://www.upi.com/Health_News/2011/07/21/Injectable-HIV-vaccine-shows-promise/UPI-94461311221408/

[5] http://www.aidsbeacon.com/news/2011/05/13/advances-and-barriers-to-a-cure-for-hiv-part-2-targeting-the-latent-hiv-aids-reservoir/

[6] http://www.voanews.com/english/news/health/Drug-Compound-Wipes-Out-Multiple-Viral-Infections-127974633.html

[7] http://www.aidsbeacon.com/news/2011/05/18/advances-and-barriers-to-a-cure-for-hiv-aids-part-4-obstacles-in-finding-a-cure/

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2011 Support and Outreach Summer Student, Rochelle Houle

Hi, my name is Rochelle. I am a Cree woman from a small northern reserve. I have finished my first year in Community Social Work out of Portage College. I am now going into my second and last year. I was given the opportunity to do my first year placement with HIV Edmonton back in December 2010. In April, this year, I applied and was then offered HIV Edmonton’s Support and Outreach Summer Student position.

Since being at HIV Edmonton, I have learned so much as a person and as a student. I was always interested in things like sexually transmitted infections including HIV as well as various other diseases, and I really thought that this position would give me a great opportunity to learn more about HIV and AIDS.

I felt that the biggest accomplishment while at HIV Edmonton was the fact that I was viewed as more as a resource than just someone who is there to observe. In the beginning of my placement, when I had engaged in conversations with clients, they would rarely ask me for anything such as bus tickets. By the end of the summer many people sought me out for information on HIV and AIDS resources, food bank referrals as well as general crisis intervention and support.

Over the past few months, I’ve gotten to know many people and I feel many have enjoyed my presence. Thankfully, I was also given many skill building opportunities, like the chance to sit in with the clients who needed to talk. That experience reinforced communication skills that I am good at doing, well also teaching me that there are some areas I need to work on in the near future.

I was also given the opportunity outreach with HIV Edmonton’s partners, places like Kindred House, Elizabeth Fry Society, Bissel Centre, and Boyle Street Community Services. I was able to see these places and other services providers that Support and Outreach referred clients to and client’s access.

I am very saddened that I have to leave such a great place. I would like to thank everyone at HIV Edmonton for helping me on my journey. I am blessed to know such great people. I have great respect for everyone I have encountered because everyone has taught me something and I have a lot of great memories that will never be forgotten.