This article by Michael Carter first appeared on aidsmap.com here. 

Co-infection with HIV and hepatitis C is associated with an increased risk of cognitive impairment, according to research published in the online edition of the Journal of Acquired Immune Deficiency Syndromes.

Investigators from the United States Department of Veterans Affairs compared cognitive function between co-infected men, hepatitis C mono-infected men, HIV mono-infected men and a control group. Co-infection was associated with mild cognitive impairment and significantly poorer scores in a number of tests designed to assess cognitive function. The results are especially interesting as all the men who had HIV and hepatitis C co-infection had well-controlled HIV infection.

“We were able to detect a mild, yet significant impairment in the cognition among the coinfected group,” write the investigators. “Coinfected subjects performed poorly on the attention, executive function, fine motor function and visual and verbal learning memory tests, with significantly lower…scores than either controls or monoinfected subjects.”

Infection with HIV has been associated with cognitive impairment. This is also the case with hepatitis C infection. However, it is currently unclear if co-infected people with well-controlled HIV infection and minimal liver damage caused by hepatitis C are at increased risk of impairment.

Investigators from the Veterans Affairs Medical Center, San Francisco, therefore designed a study involving four groups of male patients aged between 45 and 65 years:

• Co-infected with HIV and hepatitis C (n = 19).
• Hepatitis C mono-infected (n= 17).
• HIV mono-infected (n = 14).
• Healthy controls (n = 28). 

All the HIV-positive study participants were taking antiretroviral therapy and had an undetectable viral load. None of the participants had liver cirrhosis or clinical depression. Individuals with drug abuse or alcohol problems were excluded from participation in the study.

“This study represents many American HIV-infected individuals today, who are compliant with their ART [antiretroviral therapy] and live their lives with undetectable viral loads,” comment the investigators.

The participants were evaluated for symptoms of depression. Cognitive function was evaluated in seven domains and an overall global deficit score was also calculated.

People with co-infection had more symptoms of depression than those with hepatitis C mono-infection (p = 0.049) and the control group (p < 0.011).

Moreover, the people with co-infection had worse global deficit scores than individuals with hepatitis C mono-infected (p = 0.015), patients with HIV mono-infection (p = 0.008) and the control group (p < 0.001).

The mean global deficit score for the group with co-infection was 0.77 putting “co-infected patients in the mild cognitive impairment range.”

On the basis of the global deficit score, some 65% of people with co-infection were classified as impaired, compared to 42% of the hepatitis C mono-infected participants, 29% of people with HIV mono-infection and 18% of the control group. The difference between people with co-infection and the control group was significant (p = 0.004).

The people with co-infection also performed more poorly on individual tests.

Compared to the healthy control group, co-infection was associated with worse scores in attention working memory (p = 0.007), executive function (p = 0.011), verbal learning and memory (p < 0.011) and visual learning and memory (p < 0.001).

The investigators suggest that it is the “synergistic effect of HIV and HCV in coinfection that is responsible for neuropsychological deficits in the coinfected population.”

In the hepatitis C mono-infected participants (but not those with co-infection), a higher hepatitis C viral load was negatively associated with attention, executive function and speed of information processing. “These findings imply that HCV viral load may play an important but subtle negative role in cognition, a role which could be better elucidated by experiments specifically designed to assess its impact,” suggest the researchers.

They conclude, “this targeted study indicates that coinfection in males is sufficient to push this group over the threshold into mild impairment and high viral load in HCV monoinfection may impact cognition.”

Reference

Sun B et al. Differential cognitive impairment in HCV coinfected men with controlled HIV compared to HCV monoinfection. J Acquir Immune Defic Syndr, online edition. DOI: 10.1097/QAI.0b013e31827b61f1, 2012.

To many, it must seem like the recent US elections were a great victory for the LGBT community. Not only did they bring a victory for Obama, responsible for removing a number of impediments to equality, albeit after a great deal of pushing by the community, but also a number of remarkable victories for other openly gay or lesbian candidates. 

Your mind might have gone directly to the marriage votes when I brought up those elections. Maine voters decided to allow the state to issue marriage licences to same sex couples and voters in Maryland and Washington voted to approve legislations allowing same sex couples to marry that had been passed by their respective legislatures and then challenged by referendum. In Minnesota, the victory was a defeat of a proposed amendment of the state constitution to define marriage as being between a man and a woman. 

I'm certainly not against any of those outcomes, but the processes leave me cold. 

Human rights protection is not something that you submit to a popular vote. That is the very antithesis of the protection of minorities — submitting those protections to the will of the majority. In my opinion, the best measure of how successful human rights protections are lies in their capacity to protect the rights of the most despised minorities, not those who have been able to make themselves marginally more acceptable to a bare majority of the population or raise enough money to fight extreme electoral battles that may come around again when next they can. 

How much do these four victories — or three victories and a reprieve — contribute to the marriage equality fight in the other states? Do they make it inevitable or have they set up the population for another what…41?...battles that will cost millions and whose outcomes will be far from certain? With this approach, some states with poorer LGBT communities or stauncher opponents may never extend the same protections and rights to all. It might not take long for those who have fought their own hard won battles to lose interest in contributing to and fighting for others to benefit from what they already have. 

And what about minorities who have not managed to convince a majority of voters that they are worthy of protection? If you read any of the comments on any news sites after the recent Supreme Court of Canada decisions on the criminalization of HIV non-disclosure, you can well imagine how people with HIV might fare in such a popularity contest (not very well, if you need me to spell it out). 

So yes, let's all celebrate the election of legislators and executives who are willing to stand on the side of protecting the civil rights of minorities. But don't expect me to stand up and cheer for a victory in a process that should never have taken place to submit the rights of a minority — even an apparently well-liked minority, at least for the moment — to the will of the majority. Accepting the validity of that process sells the rest of us down the river.

As a Communications and Information Officer at the CTN, one of my key tasks is to take scientific writing on CTN trials and new developments in HIV and make these accessible to a larger audience. In this role, I am often confronted with challenging reports and trial protocols that take time to unpack and understand.

Amidst all the complicated science underpinning clinical research, every now and again a paper is published that is abundantly clear and seemingly requires little interpretation. One such paper was published this summer by some of Canada’s leading HIV and hepatitis C researchers. In the paper, the researchers suggest that after having observed over a thousand Canadians living with HIV and hep C for a number of years, over 50 per cent of the deaths recorded might have been preventable. This is a devastating statistic, one that is hard to truly comprehend. 

To learn more about what these findings signal, I spoke to Dr. Marina Klein. She is a clinician and researcher based at McGill University at the Montreal Chest Institute and she is the lead author of the study for the group that was observed to have such high rates of preventable deaths. For the last several years, she has also been the co-leader of the Co-Infections and Concurrent Diseases Core at the CTN and the Principal Investigator for the Canadian Co-infection Cohort (CTN 222).

Health Canada suggests there are 250,000 Canadians living with hep C. Dr. Klein says that up to 30 per cent of Canadians living with HIV also contend with hep C. “We started the cohort study,” she says, “with the aim of understanding how the two viruses, HIV and hep C interact to affect health outcomes and their treatments. It is clear to us that people with co-infections are often not included in key studies evaluating HIV and hepatitis C medications. As a result, there is limited or no information to base treatment recommendations on except expert opinion. The end result is that co-infected patients are often not included in treatment recommendations or the medication are not advised until additional data becomes available.”

The cohort began recruiting participants in Quebec in 2003 with infrastructure funding from the Fonds de la recherche en santé du Québec (FRSQ). With additional CIHR funding awarded in 2006, Dr. Klein with the support of the CTN expanded the study across Canada. It is now one of the largest observational cohorts of its kind, recruiting participants from 16 centres from coast to coast, and following over 1,100 co-infected people. Within the cohort there are extremely high rates of social instability, poverty, mental illness, and alcohol and drug use. Most of the participants live below the poverty line and only 13 per cent have achieved more than a high school education. Aboriginal peoples are disproportionately represented in the cohort and more than 75 per cent of the participants reported a history of injection drug use. Forty per cent report that they continue to inject drugs and over half of the cohort has been previously incarcerated. 

The cohort study has been instrumental in giving researchers a sense of what is going right and what is going wrong with HIV/hepatitis C treatment in Canada. “We have spent a lot of time describing the situation and understanding it,” Dr. Klein says, “ and now we are looking to move to action and intervention. Building on our research we are developing a community-focused health initiative targeted at interventions geared to improving treatment, access to care, and overall health outcomes.”

In terms of addressing what the researchers indicated as preventable deaths, Dr. Klein says “we really need to start targeting interventions aimed at minimizing vulnerabilities and improve social circumstances, reduce the harms from drug and alcohol use and increase the delivery of hepatitis C treatment.” 

With the many new developments in hepatitis C treatments, the management of HIV/hepatitis C co-infection has become more complex. However, as Klein notes, “Because medication-funding criteria is often based on guidelines, co-infected patients end up being denied medications. This is currently being seen with the new hepatitis C protease inhibitors, which are not funded for people living with HIV- hepatitis C co-infection in many Canadian provinces.” 

Working with key partners, Dr. Klein is part of a collaborative CTN initiative led by Dr. Mark Hull (BC Centre for Excellence in HIV/AIDS) to release the first Canadian consensus statement on HIV/hepatitis C co-infection treatment early next year. The new initiative will consist of a set of state of the art guidelines for selecting treatments, treatment timing, and information on drug-drug interactions and will become influential in terms of clinical practice as well as Canadian health policy.  Thankfully, in addition to these guidelines there are many new hepatitis C treatments currently being tested and the future looks very promising for increasing success, reducing the duration of treatment and improving the safety and tolerability of hepatitis C medications. Ultimately we hope, saving lives.

For more information on the guidelines you can email us at: This email address is being protected from spambots. You need JavaScript enabled to view it. .

Bob Leahy: Hello Barry, It’s a pleasure to talk to you.  PositiveLite.com readers will recall we featured your story here and now you have something new to talk about.  You're about to start cycling across North America, from west to east, right? I want to talk about that in a minute, and I’m excited your tour includes a little piece of Canada, but first I want to delve in to your story, if that’s OK with you. Now your story has similarities with Vaughn Ripley's, whom  we interviewed a few weeks  back.  You know Vaughn right? He sounds like a great guy.

Barry: I first learned about Vaughn when I ran across his book, Survivor, on Amazon. We met for the first time last year and have done some cycling together. He and I both “came out” about the same time and our stories are very similar. He wants to ride across America too, and he may be the only guy I know from the generation of hemophiliacs that contracted HIV that is in shape to do it.

Forgive me if I ask you two similar question but I’m actually really curious about how people who received tainted blood feel about that now.  Do you still hold a grudge, or have you let that go. I mean there must have been anger, right?

It’s been so many years now that I’ve really tried to let go of the bitterness as I’ve gotten older. There was plenty of anger to go around in those days; the 1980s, I mean. We were dropping like flies during that era because there was little research into AIDS, no meds, and very little hope. At first I, and many others, blamed the gay community for spreading the disease. Then, later on, we began to learn about “who knew what and when did they know it” in the pharmaceutical and blood collection industries, and many things came to light as the years went by about just how much of it could have been prevented. There were lawsuits that dragged out for decades and a class-action suit that went all the way to the Supreme Court. Even the National Hemophilia Foundation, our own advocacy group, was a named litigant in the initial lawsuits. It was a very painful time for everyone involved, but as I said, I’ve tried to move away from the anger and focus on more positive things and the cycling and my spiritual faith helps a lot with that, I think. 

Do you want to talk about how you found out you were HIV – positive?  You were only nineteen, right?

That’s right. People with hemophilia were known as the “canaries in the coal mine” for the blood supply, because we consumed enormous amounts of blood and blood-derived pharmaceutical products that were manufactured from pooled lots of more than 10,000 donors. So, when AIDS entered the blood supply in the early 80s, we were sitting ducks. The first AIDS deaths in hemophiliacs were confirmed by the CDC in July of 1982, but there was no definitive test for HIV, then called HTLV-III, until ’85 when most of us were tested. My brother and brother-in-law also had hemophilia and all three of us tested positive. I was notified by mail of my positive status - no counseling or anything like they have today. I still have that letter to this day.

Oy! And your reaction was what?

We were not terribly surprised. I’d had a knee surgery in ’82 (the worst of all possible years) and used a ton of factor-8 and some whole blood too. We’d already been seeing in the news that hemophiliacs were dying of the new disease, but there was so little reliable information available that no one really knew what to think. We just knew it wasn’t good at all.

So did you and your family go to great lengths to keep the news quiet?

It was months before we even told our extended family members. After Rock Hudson died of AIDS, all of America went hysterically crazy. People with AIDS were being thrown out of their churches and schools, fired from their jobs, and many could not even obtain housing or medical care. Perhaps the most egregious act of discrimination was when the Ray family, who had three boys with hemophilia and AIDS, had their home in Arcadia, Florida fire-bombed and burned to the ground. They had been outed by the pastor of their church and then the town formed a coalition to drive them out of town. The Rays didn’t move, so their home was torched. Two of the boys later died from AIDS and their father, Cliff, attempted suicide.  And everyone remembers Ryan White and the persecution he and his family endured before he died in 1990. Some of our guys in the hemophilia community did not even seek medical treatment because of the all the fear and paranoia. They got sick and later died; some committed suicide. I told a few close friends about my diagnosis, but for the most part, I kept it very much to myself.

At what point did you decide to come out.  What provoked it? Was it hard?

I came out in ’08 after my brother died from hep C/liver failure at the very same time I had begun Interferon treatment myself, and it wasn’t working. The docs were telling me I was headed for some really bad stuff. None of my friends at the time knew anything about my medical history; I didn’t even tell anyone I had hemophilia, so I felt I had no one to turn to. I reached that point that recovering addicts refer to as “rock bottom”. I was thinking about suicide a lot and just wanted it all to be over. But, I could never do that kind of thing to my family, so I just hunkered down and held on as best I could. I knew I had to make some big changes. Coming out was really the hardest thing I ever did, but in retrospect, it later proved to be the best thing I ever did and I have no regrets. Sometimes I wonder if I’ll ever be able to get another job or if I’ll ever have another girl-friend; but that just goes along with it.

I think your story is unusual, Barry, in that others in your family were contending with similar heath crises. You’ve seen other family members die from HIV or from hepatitis C, in fact.  Why do you think you are still alive?

Of all the questions I’ve had to ask myself in this life, that is probably the toughest. There is a lot of “survivor’s guilt” among long-term survivors. Of the nearly 10,000 Americans with hemophilia who contracted HIV/hepC in the ‘80s, only 2,000 are still alive, so yeah, I really wonder sometimes why I got picked to hang around. It’s why I’ve dedicated myself to hemophilia and HIV activism. It’s also the primary motivator behind the ride across America; you know, to try to make some kind of difference in the world. The ride raises funds for Save One Life, whose mission is to bring aid and comfort to people with hemophilia in developing nations who have no access to medications because of their high cost.  

Now you’ve also had to contend with Hepatitis C.  For those of us who don’t know, does co-infection make HIV treatment more complicated  - and vice versa?

Co-infection with HIV is a negative predictor of treatment success for hep C. I was also well into liver cirrhosis, which also lowers the odds of successful treatment. I did not respond to Pegylated Interferon and had to resort to daily injections of Infergen, a genetically modified interferon. All things considered, I probably had less than a 10% chance of curing the hep, but somehow, I was able to pull it off.

You are clear of Hepatics C now though, right?  Was the process hard on you?

Yes. The meds for hep C have a very similar side effect profile to chemo. I was on and off the drugs for nearly four years and they completely alter your body chemistry while on it. It can cause severe depression and many people go out on disability because they can’t work. I developed really bad allergic reactions to the Interferon, but eventually developed a tolerance for it and was able to complete therapy and clear the virus. I kept working through the whole thing and even stayed on my bike, though I backed off the serious training and long miles.

I want to turn to cycling now then, Barry. You told the story in your earlier article with us about how you took up cycling and eventually progressed to longer and longer runs. Tell me why you do it – and would you describe yourself as obsessive about cycling now?

"Obsessive" is probably the ideal term! Cycling, for me, is the ultimate act of denial. There is no way I should be able to do what I can do on a bike, and that just drives me that much harder. I like cycling because of its inherent purity. Out on the roads, there is no prejudice or fear, no bigotry or discrimination. There is only you and the open road. If you can’t keep up with the group, it is simply because you haven’t worked hard enough - not because someone told you that you couldn’t do it. Every time I drop a guy who’s perfectly healthy and never had to face anything like what I’ve had to deal with, I get a perverse sense of satisfaction. Cyclists are a great bunch of people and we tend to look out for each other out on the roads. It’s the one and only place where I’m just as good as anyone else (and often better) and no one has any idea there’s anything wrong with me, and I really need that sometimes. A lot of guys my age just don’t have that option, and I know how lucky I am in that regard.

Does the prospect of getting injured worry you, Barry, given your health issues?

Somewhat, but it’s a risk I willingly assume. Considering everything I’ve faced and survived, I’ve come to believe that I must have a really committed guardian angel or something. I’ve had some really close calls out on the road, but I’ve never gone down yet. 

Let’s talk about the big ride you are embarking on.  It’s across North America right?  How many miles is that?

It’s 3,667 miles from Astoria, Oregon to Portsmouth, New Hampshire and takes 49 days to complete. No one with hemophilia has ever crossed the country by bicycle, so I’m really looking forward to being the first to attempt and hopefully complete it.

You are clearly up for the challenge. But do you think it will be hard on you?

I’ve ridden over 13,000 miles in the last sixteen months to train for the ride and I’ve got the right equipment to get it done. My chief concerns are the occasional twinges of knee pain I get in my good knee and in the one that’s been replaced; it’s a little bit of intermittent tendinitis I think, and then I’ve got peripheral neuropathy in my feet that gets really excruciating after 100 miles on the bike. I had to cut the front of my bike shoes out with a hacksaw because my toes were hurting so bad. I get a lot of comments from other cyclists on the weird shoes, and that gives me an opening to tell my story and do a little impromptu AIDS awareness while I’m out training!

Your route passes through Canada, right? The area you’re traveling through – you clip south-west Ontario  - is a fair stretch away from where we at PositiveLite.com call home base, so we won’t see you as you pass through our country.  I’m seeing what we can do about some of the locals  in London, Ontario saying hello though.  Have you been to Canada before, by the way?

Years ago, I made a living as a professional trombonist and I did some touring with the Tommy Dorsey band and a couple of Broadway shows. I played in Vancouver for a week and I remember we hit Thunder Bay and Kitchener and probably a few other stops that slip my memory. The bike tour rolls through London and Brantford and then crosses back into the States at Niagara Falls. As beautiful as I remember the countryside to be, I’m sure it’s going to be a whole lot more amazing when viewed from the seat of a bike.

I see you have a day in Niagara Falls by the way. I recommend the Maid of the Mist. It’s a boat ride, touristy but great fun – and it’s cheap.  An absolute must-do while you're there.

I’ll have to check it out. I’ve been through Niagara Falls and remember thinking that they could have done a better job of keeping the development and the touristy businesses back away from the actual falls, but it was still an amazing sight nonetheless.

OK. You start the ride June 17. You’ve been training hard. What does it feel like on the verge of the ride?

 So much time has been consumed with the fundraising and getting the word out and all the logistics and details worked out, that I’m really looking forward to just getting on the bike and cranking out the miles. There is some nervousness, of course. It feels a little like when I left home and went off to college or when I moved out to Texas to start a new life and get a new job. I have a strange sense that all of the stuff that’s happened to me in my life and all the thousands of lonely hours out on the roads on the bike have somehow converged and that my whole life up to this point has finally realized its true purpose, which is what we’re all searching for anyway. 

Tell me about why you are riding.  It’s for Save One Life, isn’t it, which you can learn about here, but tell me how much you want to raise and why you chose this charity.

Save One Life’s founder, the resourceful and lovely Laurie Kelley, is a big fitness nut, and she recently accompanied a team of climbers up Mt. Kilimanjaro in a similar fundraising effort. I’m a sponsor through Save One Life already, and it just seemed like a good fit for the trans-American bike ride. The finish line is within minutes of Laurie’s home and the Save One Life office in Cambridge, Mass. We’re hoping to raise $50,000.  

Your fundraising page is here. How are you doing so far?

With the addition of Baxter Biosciences International, a manufacturer of hemophilia medications, as presenting sponsor, we’ve raised over $18,500 so far and we’ve yet to send out our fundraising letters. The ride has yet to begin, and we hope that the donations will pick up that much more once I get rolling.

It looks like the focus of your ride is on people with hemophilia, and what is possible.  But are you also riding to make a statement about HIV - and about what HIV-positive people can do?

Absolutely. There is still this prevailing myth out there that an HIV diagnosis means your life is over. It’s ludicrous, of course. I’m a 30+year survivor and I’ve never been sick a day in my life. My viral counts have been undetectable since I can remember, yet few people seem to realize that HIV can be managed and suppressed to that degree in most cases. I’ve never considered myself to be a “victim” of HIV and I don’t really even resent having it; what I DO resent is the way society has treated HIV-positive people and all the stigma and fear that have surrounded the disease for decades. I think guys that are physically active like I am can do a lot to dispel the ignorance by achieving goals like the ones I’ve set, and I plan to devote the remainder of my life to furthering our cause in this manner.

Barry. You are amazing.  Good luck on your ride.  We want to hear all about it when you get back.

Thanks, Bob, and thanks for the great questions and the opportunity to promote the ride. I’ve longed to reach out to the broader AIDS community, but just haven’t found the opportunities as of yet, so thanks for providing a platform to do so.