Now I have repeatedly admonished you, constant readers, to keep pushing forward, to keep fighting this common enemy we share, to keep giving HIV/AIDS the middle finger.

I’ve offered my opinions and insights as to why I want you to keep fighting, from “no surrender” to “quitting is not an option”, to “together we can win this battle”. More simply it’s because I want you to be happy and healthy and live long rich lives.

I know fighting is not easy, and I know it can often seem so much easier to just give up because it seems the pay-off is too far down the road. I’ve been there, we all have, but I’m here to show you proof that even though the road is long and hard, the pay-off is there, it is attainable. I can prove it; as a matter of fact, I am the proof.

On October 17 2008 I was taken to the hospital in extreme pain and unable to breath. I had severe pancreatitis and pneumonia, my lungs were full of fluid, I was severely anemic and weighed 82 pounds. My viral load was in the millions and my CD4 count was in the mid 70's. In short I was dying.

The doctors drained my lungs three times in four days. I received three blood transfusions. I could neither eat nor drink; my only sustenance was IV fluids and I was unable to take my HIV meds because my body was too weak to handle them. My skin was gray, and I looked like a skeleton. I could not stand on my own, I couldn't sit either, because it was too painful. I existed in a hospital bed pumped full of morphine and antibiotics. The doctors gave me two weeks to live.

I thought to myself, “well this is it, this is how it ends for me, a living corpse just waiting to die”. And every morning that I woke up I would get more angry. Then one morning when I awoke I realized I had a choice here. I could just lay there in a drugged delirium and die, or I could fight. And to my surprise, I wanted to fight, I wanted to get up out of that hospital bed, I wanted to live. Thirty-three years of life was not enough. I wanted more. So I put on my big boy panties and readied myself for battle.

It was hard. It hurt, but every day I pushed myself more and more, and every day the results of the battery of tests the doctors were running on me kept improving. In the middle of January of 2009 I was sent home. I was still very sick, but much to the doctors surprise it was determined that I would live.

I spent months and months going to the doctor twice a week for blood work and to get my weight checked. I was not able to eat much. but at least I was eating and was back on my HIV meds. Little by little I got stronger, I got healthier, I gained weight, and my viral load went down and my CD4 went up. The numbers still weren't good, with my CD4 barely reaching 300 and my viral load still not undetectable. Yes I was getting better, but not better enough. And once again I found myself thinking to myself, what’s the point, I will never be human again.

I saw the pain and fear in my parents’ eyes, as they watched me suffer. But it was like I could read their thoughts. It was the same thought over and over again: “not again, not another one, I can't take losing another son, only this time I have to watch him die.” (My older brother died in 1996 and if it hadn't been for each other, my family would have died with him.)

I saw all this in my parents’ faces and hearts and said no, I will not let this happen. I cannot break their hearts again. So I fought harder. It was a living hell, but I had to do it, for the people in my life who needed me, and for myself, I had never quit before and I was not about to start then.

Fast forward to March 2011. My viral load is 20, my CD4 is 625 with a CD4 percentage of 46, I now weigh 152 pounds. I go see my doctor every 3 months for routine check-ups. I live on my own. I have an amazing job working outreach for other people living with HIV, and I get to share my loud mouthed opinions with all of you!

So for all of you asking “why keep fighting, where is the pay off?” I’m here to tell you the pay-off is out there if you want it bad enough, if you’re willing to fight for it. I have said it before and I will say it again, HIV/AIDS doesn't get to win, not if you don't let it. Stay strong, keep fighting, be well, and remember there is always someone who needs you, who loves you. I love you.

Thank you for reading.

 XXOO Danny

Inflammation is a hot topic and of much concern for many PHAs. However the findings from various research do not provide specific answers but have at least started to look beyond HIV viral load and CD4+.

Cardiovascular Disease (CVD): Research in ongoing HIV disease has found many factors that cause inflammation on a cellular level in the body. We know untreated HIV infection causes a state of intense chronic inflammation, which co-relates with early onset of cardiovascular disease in HIV infected patients. But we also know despite HART, many studies have shown that levels of immune activation and inflammatory markers remain elevated in HIV-infected individuals when compared to the HIV-uninfected. Strategies to further reduce immune activation to normal levels are not established.  

In 1998, a Canadian study found the link between increase in carotid intima-media thickness (cIMT) –or in other words build up of plague in the artery walls causing narrowing of the walls. This makes it harder for blood to flow through. Much of this is due to many inflammatory markers. A similar finding was presented at CROI 2010. Bottom line: inflammatory markers are causing havoc in artery walls and no direct cause and effect equation has been resolved.

Impact of chronic inflammation on organ systems and on mortality:
There are two new markers to measure risk of CVD. They are C- reactive protein (CRP) and fibrinogen.

CRP is a protein that is released in the bloodstream whenever there is active inflammation in the body. Fibrinogen is a blood clotting factor. Heart attacks happen when there is a sudden formation of a blood clot at the site of the coronary artery disease (atherosclerotic plaque). Hence when fibrinogen levels are elevated this “could” mean an increased risk of a heart attack.

There is more and more evidence that there is a relationship between inflammation and coronary artery disease.

One study (n= 922 research participants, 5 years) investigated the relationship between CRP and fibrinogen, and mortality. Conclusion: high levels of both “CRP and fibrinogen levels at baseline were strongly correlated with subsequent mortality” regardless of CD4 below 200 cells or above 500 cells. High baseline levels increased risk of death by 2.6 times.  

Co-infections: HIV positive persons living with chronic Hep. B or Hep .C “creates an especially dangerous proinflammatory state that strongly predisposes to death in the absence of continuous ART.” Persons with chronic liver disease have elevated levels of elevated plasma hyaluronic acid (HA), a correlate of hepatic fibrosis. Conclusion: elevated levels of HA and 3 inflammatory markers (hsCRP, IL-6, d-dimer) increased risk of death by 4.4-6.1-times compared to those with normal levels of HA and the biomarkers.

Kidney health: A small pilot study found kidney inflammation can create inflammatory markers and secrete proteins in urine (proteinuria). Conclusion: further studies needed to interpret the role of the inflammatory markers in kidney health.

Inflammation and Treatment: The common rationale for immune activation and inflammation in patients already on HART is the residual HIV replication. HIV lives in many reservoirs of the body, organs, lymph nodes, CNS, brain, etc.

The study explored intensification of HART by using either raltegravir or maraviroc. Conclusion: “None of these studies found convincing evidence that intensification in patients already well controlled on standard ART produced consistent reduction in HIV RNA or proviral DNA burden” and these studies provide evidence that ongoing HIV replication is unlikely to explain chronic inflammation.

Conclusion from CROI: The cause of inflammation is unclear and is likely multifactorial. Further research is needed to improve quality of life, minimize degenerative diseases and co morbidity in HIV positive persons on HART.

The bottom line: Research is ongoing. In the meantime, keep your mind and body healthy; have an active lifestyle, eat healthy foods, drink water, minimize alcohol consumption and recreational drug use, have great safer sex, and nurture your spirit.

Full report at :

CROI 2010 http://www.natap.org/2010/CROI/croi_96.htm 

http://www.natap.org/2010/HIV/101610_02.htm

Last week I wrote about the Denver Principles, GIPA and the degree to which HIVers in Ontario are engaged with the HIV/AIDS community. To recap, statistically the majority of them are not. Of the 17,000 or so Ontarians who are HIV-positive and know it, only 5,000 or so are using the service of an AIDS Service Organization (ASO) which right now is the only measure that’s available to record HIVer engagement.

Of course counting the number of HIVers entering the doors of an ASO says little about their actual engagement, but it’s a start. And it doesn’t help at all in tracking those HIVers who work largely outside the ASO framework, like for instance, myself.

We also learned that based on the research contained in Living and Serving (1996) and Living and Serving II (2007), some ASO’s have some way to go in being truly “GIPA-compliant” places. Living and Serving II recorded only slight improvements in the situation since its 1996 predecessor report was published. And of the twenty recommendations in the 2007 document, only four by my reckoning have been implemented, with another two a matter of interpretation. That leaves fourteen out of twenty remaining unaddressed

I encourage folks to read the 2007 research findings, in particular the recommendations found on page 53-54, and see for yourself. It’s here. 

Two words of caution in interpreting these results. Firstly, they relate only to the “Community AIDS Movement” in Ontario, which roughly translates to ASO’s. Thus, any HIVer activity taking place outside the doors of an ASO will not be reflected here. Secondly, even since 2007, there are some notable GIPA success stories  - in using HIVers as peer researchers, for instance, and in peer-delivered programming, like facilitators, "survive and thrive" trainers, poz prevention and chat room interventionists. Still, there is clearly a long way to go.

I’ve always been of the belief that criticizing without offering solutions is both mean and unproductive. So . . . here are four suggestions to get the GIPA wheels somewhat better oiled.

1.  Let’s drop the notion that GIPA relates principally to the work of ASOs. That assumption is as exclusionary as all get out. Why?, It looks at the role of the 5,000 using ASO services while ignoring the 12,000 who, for various reasons, don’t. This change in focus is a cultural shift that is entirely manageable, but it entails addressing issues that have never really been addressed before, so some innovative, outside-the-box thinking is required to make this truly work. Let’s talk to those 12,000  - not just those HIVers always at the table - and engage, engage, engage.

2.  We know little/nothing about the 12,000 who don’t use ASO services. Togther with the 5,000 who do, they all need to be given a much louder voice than our current community structure permits. The membership of both the OAN (Ontario AIDS Network) and CAS (Canadian AIDS Society), fine organizations both, is made up of ASO’s, not HIVers. Both organizations have significant poz representation on their boards, and that’s a plus. But that handful of HIVers falls well short of providing a voice for ALL HIVers, who, in any event, played no part in their election. The only viable solution is to create that voice in the form of new HIVer-focussed organization(s) at the provincial and/or national level independent of ASO networks, run by HIVers for HIVers.  A crazy idea? Hardly; they already exist in many other countries, notably the USA (NAPWA), the United Kingdom and Australia.

3. In trying to downplay the role of ASO’s as the sole entities responsible for implementing GIPA (see 1. above), we must nevertheless recognize their important role in leading the way by example. Clearly, if we use Living and Serving II as our evidence, some agencies could have done more. Having said that, we need to know why. Are there, for instance, real obstacles, structurally or culturally, that we don’t know about?  My impression is that there is in fact a collective commitment to GIPA almost everywhere, even if that commitment has not always lead to measurable concrete results. Let’s see what the roadblocks are and strategize around them.

4.  Again, I’m trying to avoid suggesting that ASO’s are the be-all and end-all of GIP implementation when clearly they are not. They are just players, but important ones. On occasion, impassioned Hivers’ voices have suggested that ASO funding be conditional on GIPA implementation. That is problematic on several levels.   Cutting funding would hurt us all, nor is there an appetite from our funders for a “policing” role. Nevertheless ASOs should be accountable to those they serve, and that accountability should be measurable, but there is no real process for that to happen. We need something like a report card for each ASO, an independent assessment, conducted by HIVers for HIVers, as to how thorough GIPA implementation is in each ASO. I can already see petticoats raised at the concept, but the only problem conceptually is the logistics of conducting such a task. In any event, there are clues to the content of the scorecard in Living and Serving II (refer to page 74, Appendix 2 of that report for a suitable framework.)

If the foregoing implies the way ahead is easy, it isn’t. But first comes a cultural shift which in many ways and many places is starting to happen. HIVers already have SCORES of allies in ASO’s for instance, and to suggest it’s an us-against-them scenario is entirely wrong. Some of our best, most eloquent HIVers, for instance, people like Murray J and Jay K. work in ASO’s and use their jobs as platforms for talking GIPA. I admire them immensely. I hope that nothing I have said here downplays the very real contributions that these folks have made.

By the way, I don’t buy the efforts by a few to change the name of GIPA (Greater Involvement of People with HIV/AIDS) to MIPA (Meaningful Involvement of People with HIV/AIDS) It implies we have conquered the greater involvement issue, now let’s concentrate on the meaningful involvement. That’s false. Worse, the name change is a classic case of GIPA non-compliance – presenting something as a done deal, with no HIV community consultation. Let’s be clear: GIPA and MIPA don’t mean the same thing. The use of MIPA merely muddies the waters. It remains greater involvement we are looking for, at least in my book. That it’s also meaningful is a given.

Just recently I came across a story in PARN’s newsletter which I found totally riveting. It’s rare, after all, for a client of PARN, a Peterborough-based AIDS Service Organization I have strong attachments to, to want their story to be told. But Dave Brodrick is clearly no ordinary client. He has given permission for his story to be told here.

Dave is forty-two years old.  He is from Toronto.  He was adopted and at the age of twelve he ran away from home.  He started injecting drugs after he tested positive in 1990.  Dave was the first peer councilor for inmates with HIV in a federal penitentiary in Ontario

While out of prison, Dave's story was featured in the 2009 CBC Documentary “Staying Alive”, about InSite, the Vancouver safe injection site which has had a stormy legal history. (PositiveLite featured that documentary in a recent post about InSite that you can find here. In it, Dave speaks eloquently and movingly about his dependency and its consequences, his segment of the show is here.  Check it out; you'll get a real sense of the intelligent, emotional and conflicted man behind the name.)

Two years later and Dave is in Warkworth penitentiary, just a few miles from where I live, serving a sentence for robbery. He agreed to an interview with PARN's Dylan DeMarch, dealing with the issue of HIV-positive inmates and the difficulties they encounter inside. Dylan did a beautiful job of writing it, so there is little else for me to add. So here it is . .

"Dave Brodrick admits that during his first prison experience more than 25 years ago he would be cruel to fellow prisoners if he knew they had HIV. "I was harsh" he says, "very harsh. Because I was ignorant. The stigma that surrounded people living with HIV in our communities was amplified inside the prison walls."

"Two-and-a-half decades later, and not a lot has changed. "I guess it's a bit better, but you still hear the comments from prisoners and guards" says Brodrick". The one major difference is that now some of those comments are being directed toward Brodrick, rather than coming from him."

"Diagnosed with HIV 20 years ago, Brodrick is now one of thousands of people living with the virus in Canadian prisons.  The rate of HIV infection is nearly 4.6% in Canadian prisons, which is 15 times greater than in the community as a whole, according to statistics released by Correctional Service of Canada in 2010."

"Since March 2010, Brodrick has been serving a robbery sentence at the Warkworth Institution located 60 km southeast of Peterborough. Warkworth is a medium-security facility and with a population of 580 prisoners is the largest federal correctional institution in Canada."

"Chris Ciceri began working with Brodrick shortly after he arrived at Warkworth. As PARN's Prison Support Worker, Ciceri visits regularly with Brodrick and other prisoners living with HIV/AIDS at Warkworth, as well as prisoners at Central East Correctional Centre in Lindsay, Ontario. PARN has offered its Prison Support Program since 1992, providing advocacy, health education, counselling and support for the day-to-day challenges for men and women at the two prisons in PARN's catchment area."

"Ciceri sees first-hand the difficulties that face HIV-positive prisoners. "It's not cool to have HIV in prison," she says. "There is ostracism and abusive comments from the other prisoners. Many prisoners choose to not disclose their status to health-care staff for these reasons and end up not receiving the medical treatment they need while in prison.""

"Warkworth has the highest rate of known HIV positive prisoners in Ontario's federal prisons, not including the many prisoners who keep their status to themselves. Brodrick is open about his status and receives basic treatment in addition to the support he receives from PARN. However, the care he gets is minimal compared to what people living with HIV have access to in the wider community."

"Pain-management is a major concern for our clients in prison", says Ciceri."Prisoners don't have access to the same pain medications as they would in the generalcommunity.” People living with HIV/AIDS also have unique nutritional needs and prisoners have to purchase their own vitamins and additional food from the canteen with little or no income."

""It's a struggle to get anything in here," says Brodrick, "and the treatment isn't really adequate. It is better than it was 20 years ago, and there is more access to specialists, but it is still not enough."  For example, Brodrick is usually prescribed Tylenol 3 for pain management, even though he contracted Hepatitis 10 years ago and the acetaminophen in Tylenol 3 causes further damage to his liver."

"Brodrick's sentence ends in June and Ciceri is currently helping him plan for life once he is released from prison. "I do release-planning with anyone who will be living in the 4 Counties once their sentence is completed. I help find housing and put people in touch with the health care services they require, such as the weekly Positive Care Clinic at PARN."  If prisoners are released outside of PARN's catchment area, Ciceri will help them connect with a local AIDS Service Organization."

"Brodrick is looking forward to his release and a chance to start over, but he hopes that changes are made inside the prisons once he is out. "I have personally witnessed the same syringe being used for the last nine months by so many different people," says Brodrick. "They give us condoms and lube, so I don't see why they can't have a needle exchange.""

""These prisoners are eventually going to get back into the community,"he adds.  "They will be transmitting HIV on the street.""