This morning, I woke up like I usually do on a Saturday morning, earlier than I planned to get up, yet later than I ever sleep during the week.  Each Saturday morning, it is my routine to get up and flip the television over to Food Network, and I spend the morning soaking up culinary inspiration.

The highlight of my morning is watching The Pioneer Woman. For some reason, I connect to her show, her food, her way of life. She and her family live and work on a cattle ranch in Oklahoma. She is very vivacious and down to earth and her food vision is amazing. I have made more of her recipes in just the last month than I have ever made from any other recipe source.

But, I am sort of going off on a tangent. Gotta love age + HIV meds, they do screwy things to your head.

The me from a few years ago, or even a few months ago, would never have found joy in cooking.  I had always held a deep interest in cooking, though for some reason or another (usually just pure laziness) I rarely got on the kitchen and attempted to create.  But when you have HIV, or a terminal illness, I believe a light shines more brightly on your flaws, and one has more of an impetus to change.

All of a sudden your bucket list becomes real. Every day becomes another opportunity to do good, or to start over. Each day is a new recipe of trial and error, to see what fits and what doesn’t.

I know full well there are definite negative consequences to living life with HIV.I live those consequences daily and have written about them either on here of my Facebook. But HIV also has many positives (no pun intended) that I think can be easily overlooked, sort of like when the sun is covered over by clouds.

Walking hand in hand with my mortality enhances my senses, at least the physical senses. I taste things more intensely, I see things (literally see things) that I have not seen before, even on the same road I have been on a thousand times before.  I am always pointing things out to people that I notice and they tell me “Oh, that has been there for years.” (Of course, that could very well be because I am blind inside.)

I have a much greater appreciation for music of all types. I listen to and love things that are so far outside of myself that I would never have listened to or derived pleasure in before.  For example, jazz.  Or country.  Or classical.  All of these have become rich new means for me to feel.  And oftentimes, music has become one of the few ways that I can actually feel things.  I have struggled with depression off and on throughout my life, and to be able to feel again is a true gift.  Maybe one day I can feel outside of music, but for now I will take what I can get.

Having HIV also has taught me a lot about boundaries. To live life with HIV but without boundaries leads to a very exhausted person, or at least that has been my experience.  In the first few years after my diagnosis I was so very cautious and miserly with my energy and my time, to the point that I hid out at home and rarely went out.  Then I went through a period of becoming too social, too far outside of my energy zone.  Now, I am back to being a hermit again, but I really am starting to see the need for a middle road, of a balance between being a hermit and being exhausted.  I just have to figure out where that medium is and I have not done that yet.  I am very much like Goldilocks in that regard.

I guess my point is this: there can be a silver lining in situations, but they may not always be immediately evident. Sometimes you have to dig a bit before you come across any gold. Sometimes you have to bake a crappy batch of cupcakes before you figure out how to make good ones. 

This article originally appeared on Jason’s own blog, Embracing Pozitivity, here.

About the author: I am 38, gay male from Knoxville, TN who is not ashamed of my HIV+ status. I am optimism personified. I am strength realized. I am just me.

Website: embacingpozitivity.blogspot.com Twitter @jjemcdonald

The problem with scare-monger titles like this one is that you can be accused of over-reacting (especially if it turns out to be a false alarm) and therefore devaluing every warning in the future. That said, sometimes the message is more important than the delivery and a dramatic title may at least catch the eye.

Recent reports concerning the deaths of HIV positive men in New York who have suddenly contracted a new strain of meningitis may seem localised (especially when you look at the numbers involved) but they may well be the precursor to a very serious problem indeed. The ease in which meningitis can be spread, both sexually and via normal social contact, makes the New York situation a problem we ignore at our peril.

We can’t forget that HIV began as a localised problem with a few people coming down with strange symptoms. The good news is that there is a vaccine to prevent it; the bad news is that if you already have it, you need to get help before it’s too late.

“The Health Department issued new recommendations today for vaccinating against invasive meningococcal disease – commonly known as meningitis – after an increase in cases. Vaccinations are now advised for men, regardless of HIV status, who regularly have intimate contact with other men met through a website, digital application (“App”), or at a bar or party.”

(March 6, 2013, New York Department of Health and Mental Hygiene.) 

Many people won’t really understand what meningitis actually is, so first, a few facts.

The meninges are three protective membranes which cover both the brain (cranial meninges) and spinal cord (spinal meninges). You could describe them as layers of glue, following every contour of the brain and they prevent fluids from coming into contact with the brain and spinal cord. In this way, the nervous system is protected from blood and other fluids pressurizing those vital organs, although there is a layer of cerebro-spinal fluid between two of the membranes. They also serve as a framework for blood vessels. Isn’t nature wonderful!

Meningitis happens when these membranes become inflamed or damaged. There are two distinct types: viral meningitis and bacterial meningitis and generally, meningitis can be treated with antibiotics. The current problem in New York and amongst LGBT people is that this outbreak is a new form of bacterial meningitis (meningococcal) and it is very easily spread from person to person. It is unique and so new that it hasn’t yet been named but it is particularly deadly and kills one out of three people instead of the normal one out of five, as with other forms of meningitis. Most worrying of all, it seems to be targeting gay men.

Those are the basic biological facts; so what has actually happened in New York and should we be worried?

Since 2010, there have been 22 reported cases; 13 of them in 2012 and four so far this year. Seven of them have died and 12 were HIV positive. The cases are spread across various New York districts and the pattern and connection to HIV is just beginning to be fully realised; hence the warning from the authorities.

“It’s been sort of marching through the community in a way that makes us very scared,” Dr. Jay Varma, the deputy commissioner for disease control at the city’s health department, said last week.

Because meningitis very often attacks young men, the 12 cases of men in their early 30’s; eight of whom were HIV+, becomes an alarming factor. Four new cases in the last month and four deaths among the 12 younger men; plus the fact that the normal incidence of bacterial meningitis amongst gay men is about 20 times higher than in the rest of the population, all adds to the growing sense of alarm.

“Fortunately for meningococcus, we surely have the tools to prevent the next case. A vaccine is available to prevent almost all the cases seen in the U.S. It’s comprised of bits from four of the five strains that cause most human disease. In the usually drab world of hard-boiled science, these strains are organized by an eccentric lettering system: A, B, C, Y, and W135 (don’t ask). The current shot works against all but the B strain, which remains difficult to develop for reasons that only a vaccinologist could describe.”  (Kent Sepkowitz: Infectious disease specialist.)  

So what happens if you get meningitis and what should you look out for?

The symptoms of meningitis usually emerge pretty quickly (normally two to five days after contact) and because they progress very quickly, it can be a fatal disease if not treated as quickly as possible. It can go from a fever, to a headache; maybe a rash of red spots and a stiff neck and then death within a few hours. Without wishing to exaggerate in any way; people have reported sick and have died before the ambulance could arrive. This is a nasty disease. People need to see their doctor and receive at least preventative, prophylactic antibiotics as soon as humanly possible.

“This disease is spread by prolonged close contact with nose or throat discharges from an infected person. Examples of prolonged contact include living in the same household or intimate activities, including kissing and sexual contact.” (HIV and Hepatitis.com)

So yes, unfortunately sharing cups, tooth brushes and all the things that led to stigmas for HIV are pertinent in the case of meningitis.

What can you do about it if you display these symptoms?

First of all, we all know how common these symptoms are individually and how easily people may panic at the first sign of a headache, so it’s important to listen to your body and take action if you know that the symptoms you have just don’t feel normal. If you’re worried, contact your doctor immediately and report both your symptoms and the story behind them. In this way, the doctor will have a reference point from which to start and know what he or she should be looking for. This is a disease where quick action could save lives, so without being pushy, make sure you’re taken seriously. Unfortunately, the vaccine won’t cure those who are already infected but that equally doesn’t mean a death sentence. Quick and effective treatment is the key but delay can be dangerous.

What should you do if you have no symptoms but are now pretty worried that you’re at risk?

Again, try not to give in to rampant hypochondria (we’re all guilty of that from time to time!) but be aware of your local situation. If you live in New York, then you should heed the warnings and get vaccinated; if you live elsewhere, it will do no harm to ring your local LGBT/HIV/local health authority and ask if any cases have been reported near you and what their policy is. It may be that a vaccination is advisable for all gay men, especially younger gay men but then you may meet problems of availability, cost and general unwillingness plus the inevitable insurance coverage issues. Your local LGBT groups may be able to put pressure on health authorities to implement a vaccine programme or at least make the vaccine readily available.

As you may have gathered from reading so far, bacterial meningitis is no joke. Hopefully it will remain confined to small outbreaks but as this snippet from The Daily Beast shows; medical practitioners are holding their collective breath at the potential of this outbreak:

“So when the New York City Department of Health and Mental Hygiene yesterday sent around an alert about recent meningococcus cases in HIV-positive homosexual men, it caused a real gasp among practitioners everywhere—this one is scary. When you see a newspaper photo of people in a town lined up for shots and pills to prevent spread of the case of meningitis, it’s meningococcus causing the problem. Its name, which is already alarming enough, actually understates its potential devastation. The meningococcus bacteria can cause two different diseases—when it’s “just” meningitis, the death rate is about 10 percent, but the more lethal sepsis form (called meningococcemia) kills about half by overwhelming the body’s blood vessels while sparing the brain’s lining. We don’t know yet which manifestation is being seen among gay men in NYC—perhaps cases of both—but the high death rate suggests the more dangerous meningococcemia.” 

Finally…

It does seem cruel doesn’t it? We’re coming to terms with the consequences of HIV and both living longer and developing effective strategies to avoid its spread and along comes something else to scare the living daylights out of us. It may all turn out to be a storm in a teacup (with respect for those who have already died) but if HIV/AIDS taught us one thing, it’s that our own organisations are sometimes quicker to sound the alarm bell than the authorities.

That’s possibly not true in this case. When the New York medical authorities advise all gay men to get vaccinated that’s a pretty swift official response and one that shows how seriously they are taking the threat. They too may have learned their lessons from the past and want to prevent an epidemic before it takes hold. However, the problem is getting the message out.

What happens if you’re active sexually, or using intravenous drugs, or hiding behind marriage, or hiding from stigma, never read the gay press or websites and don’t take much notice of health warnings? These are the guys that may be at greatest risk and the ones who could spread bacterial meningitis out of control. The warnings need to be displayed as widely as possible; in doctors’ waiting rooms, hospitals, train stations, public libraries and of course, all gay establishments, wherever, in order to get the message across.

It’s not the only cloud on the horizon either: the spread of bacteria resistant gonorrhoea and the potential for resistant strains of syphilis and hepatitis may be occupying our thoughts in the years to come. It’s the way of all viruses and bacteria; those life forms have a survival instinct just as we do and are constantly seeking out ways to resist the things we develop to kill them. Plagues and viral epidemics are a part of human history; there’s no reason to suppose it will stop now. The key is remaining alert and just as in New York, reacting quickly when a threat comes along.

Bacterial meningitis is easier to catch than HIV and potentially much deadlier; the good news is that we can vaccinate against it at the moment; the bad news is that making people aware of this is not as easy as it sounds.

Further information:

http://en.wikipedia.org/wiki/Meningitis

http://www.dailykos.com/story/2013/03/24/1196531/-Health-Alert-Meningitis-Outbreak-in-NYC-Among-Gay-Men

http://www.huffingtonpost.com/michael-broder/gay-meningitis-outbreak-new-york-city_b_2932956.html

http://www.queerty.com/nyc-health-dept-issues-meningitis-warning-for-gay-men-20120928/

This article first appeared on aidsmap.com here. 

Now that antiretroviral therapy (ART) works so well, we can sometimes forget how remorseless a virus HIV can be if left untreated. Yet you don’t have to go to countries with poor treatment access to see what AIDS looks like. Even in the UK, people are still turning up at hospital desperately ill, with no immune system, and with severe pneumonia, cancers, wasting, dementia... everything we used to associate with HIV in the bad old days.

Why? Late diagnosis. One of the aims of the recent National HIV Testing Week was to try and bring down the number of people in this situation, the late-diagnosed. These are the people tested for HIV far too late, when they have turned up somewhere – often in hospital – with CD4 counts in single figures. Sometimes they may have been scared to test, but often it’s because they never suspected they had HIV. Some have avoided healthcare services, but too many have known something was badly wrong and been tested for everything but HIV.

Most pull through, but some don’t. We talked to a number of people diagnosed very late to see if there were any common factors in their experiences.

But first, how much of a problem is late diagnosis among people in the UK?

A pricey problem

“Late diagnosis is dangerous – and expensive to manage,” says Dr Ian Cormack, HIV consultant at Croydon University Hospital in south London.

“A year on antiretroviral therapy currently costs about £6000. The care bill for a recent patient who spent six weeks in our intensive care unit was well over £200,000, which would have been avoided if they’d tested a year before.”

In his experience, for some groups, late diagnosis remains the rule rather than the exception. “I’d say at least two-thirds of my current patients here had a CD4 count below the treatment-initiation limit of 350 cells/mm3 at diagnosis.

“My patient group here is two-thirds black African and I do know people from that group who have tested late either because they think HIV is still a death sentence, or are worried about their immigration status.”

But, he says, the people who really do scrape through – and the hospital had no avoidable HIV-related deaths last year, so scrape through they do – are the people who don’t fit the typical ‘high risk’ demographic, the 13% of his patients who aren’t openly gay men or black African people.

“The white heterosexuals are the most likely to turn up actually with AIDS-related symptoms. Them, and black Caribbeans, though we see a number of Asians too. They are often very ill and often have difficulties adjusting to their diagnosis, feeling especially isolated and stigmatised.”

The bisexual man: Brian

One such person is Brian*. The north Londoner, diagnosed at Christmas in 2007, runs his own business as a wholesaler.

He started to worry “because I was looking too healthy. I tend to lose weight in the summer and pile it on again in the autumn. That year, though, I hadn’t had to go on my usual October diet and at first was pleased.

“But something started to scratch at the back of my mind. I didn’t feel ill, exactly. It was more that I felt vulnerable – as if I needed wrapping up and looking after. I started having dark thoughts too, not specifically suicidal but morbid. ‘If I accidentally stepped in the garden pond it would be all over’ – that sort of thing.

“I went back and forth to the GP a few times and they did tests for diabetes, liver function, cancers. All came back blank. Then I started losing my appetite and my GP became concerned: he could see I had unusual weight loss. Looking back, I’m wondering why he didn’t just test for HIV too.

“Just after Christmas, I got a chest infection. The GP took one listen at my chest and said ‘Right, we have to do something’: the next thing, I was in the local A&E department.

“The moment I was there I felt better psychologically; I was being looked after, as I’d wanted. The hospital doctor said ‘We need to broach the subject of your private life’, and I said ‘Go for it’. I realised it was important not to hold back.”

And so he found himself talking for the first time about his bisexuality and his late-night cruising on London commons. He was married with two teenage children, a school governor, well known in the local community. He emphasises that he made a conscious decision not to let fear of gossip stop him telling the truth.

“The doctor was the daughter-in-law of one of my customers. I decided to trust that she’d be professional. I didn’t want a stranger telling my wife, though. So I said ‘Take the day off work’ and told her. I considered saying I’d had a drug problem but decided there was no point in lying. She was devastated, but with the help of counselling at the Terrence Higgins Trust, we pulled through.”

If there’s a message he’d like to give to others, it’s to update their knowledge about HIV. “In my line of business there are quite a lot of bi guys and they’re the ones I always hear myths from. ‘HIV is still a death sentence’, ‘it’s mutating and is resistant to all the drugs’, and so on. It’s these kinds of myths that stop people from testing.”

What late diagnosis does

Late diagnosis kills. A British HIV Association (BHIVA) audit in 20061 found that 25% of all deaths reported in people with HIV were due to late diagnosis. People diagnosed with a CD4 count lower than 350 cells/mm3 have ten times the risk of dying after diagnosis compared with those over the threshold – a 4% risk in the first year compared with a 0.4% one. Most deaths occur within the first three months after testing positive, and most in people with very low CD4 counts (under 100 cells/mm3).

The most recent data from the Health Protection Agency (HPA)2 show that nearly half (47%) of people with HIV are being diagnosed with a CD4 count of 350 cells/mm3 or under, which lays them open to increased risk of illness, and a quarter (26%) with fewer than 200 cells/mm3, the point at which AIDS-related conditions start to become much more likely.

About 35% of gay men, but 56% of women and 64% of heterosexual men, are diagnosed with a CD4 count under 350 cells/mm3. Being in a high-prevalence group makes little difference – African people are just as, or even more, likely to test late, with 61% of African women and 68% of men doing so. Older people leave it later to test than younger: 61% of the over-50s diagnosed in 2011 had a CD4 count under 350 cells/mm3, compared with 48% of the under-50s.

When it comes to women, pregnant women are diagnosed earlier. This isn’t because they present themselves for testing. It’s because pregnant women form the only group in the UK which is universally and routinely tested for HIV unless someone specifically asks not to be. A third of all HIV tests in the UK are performed at antenatal clinics.

The biggest contrast is in the group who test very late. The proportion of gay men who are diagnosed with a CD4 count under 200 cells/mm3 – which in the US is a definition of AIDS – is 16%, but in heterosexual men it’s as high as 43%.

The good news is that the proportion of late testers has been slowly declining overall, most notably in gay men: in 2002 48% tested late and in 2011, 35%. The proportion of late testers in heterosexuals has only gone down relatively slightly, from 67 to 60%. In the case of gay men, the challenge now is not to get them to test, but to test often: the HPA recommends gay men should test for HIV at least annually, and every three months if they have multiple partners, but found that in fact two-thirds of gay men who’d had a test at an HIV clinic had, two years later, not returned for another one.

The traveller: Tom

One interesting group who are increasing as a proportion of the HIV-positive population, and who may test particularly late, are UK-born people who acquire HIV while on holiday or working abroad. The latest HPA report highlights that some 15% of UK-born adults with HIV fall into this category: they are more likely to be older, heterosexual and report contact with a sex worker. And they may test especially late as they are seen, both by doctors and themselves, as falling out of classic risk categories.

One was Tom, in his 50s from Leicester. He’s a reminder that late diagnosis may not only involve danger for the person who tests: in Tom’s case, although he too got sick, what got him to test was the near death of his young son.

He believes he became infected with HIV abroad: he had been going to Thailand twice a year and sleeping with women there. Eventually, he found a wife there – “I could see she wasn’t like the other girls” – and they have been married for eleven years. He doesn’t know if he infected his wife or vice versa.

He started off having jaundice and gallstones for no apparent reason, as well as kidney problems, and then developing what was thought might be anaemia. “I had every test under the sun. I even went to a haematologist who did a general blood cell screen, as I’d had anaemia before. I even asked him if they might do an HIV test. He just said ‘I don’t think we need to, you don’t fit the profile’.”

If they’d thought to test his CD4 count, they’d have found out: Tom’s was 53 cells/mm3 when finally diagnosed and he was in the early stages of PCP, a type of pneumonia.

By that time, however, his young son, who is now six years old but was then three, had already spent eight weeks in hospital with pneumonia and what doctors thought was lymphoma.

“I can’t help feeling guilty. For me and my wife, it was one thing testing for HIV, for him another, he’s just a kid. We feel strong as a couple and my beliefs support me [he has converted to Buddhism] but I think I am going to need support when he starts asking questions about why he has to take medicines twice a day.

“I just wish they’d include HIV among the standard tests they do,” Tom says. “I now hate it when they say ‘We’ll run some tests’. I want to know what tests? And why? What assumptions are they making? There are guys in my office who have taken more risks than me but are too frightened to test because of the stigma attached. It would be a good message if doctors just regarded it as something routine.”

The fast progressor: Annie

Not all ‘late testers’ are older or have actually been infected for a long time. About 7% of people with HIV are ‘fast progressors’ who, for reasons that are still unclear, experience continued high viral replication after acute infection that takes their CD4 count down to below the danger level of 200 cells/mm3 within two years.3

Annie was diagnosed in 2008 with a CD4 count of ten cells/mm3 and a viral load of six million copies/ml. She knows she couldn’t have been infected before 2006. She had had several older boyfriends including one from the Caribbean, a group among whom, says Ian Cormack, “we find late diagnosis is common. Many are reluctant to test and struggle to accept their HIV diagnosis.”

Employed in the finance sector, she worked very hard, but played hard too. She used to go to a central London hospital for regular check-ups for other sexually transmitted infections (STIs) “and never had one. So I reckoned if I’d never had an STI I couldn’t possibly have HIV and, although they always offered me a test, I always declined.”

She realised something was wrong when the ‘play’ bit of her life had to go because of increasing fatigue: “By 9pm, you couldn’t have got me off the sofa with a JCB.” A couple of liver function tests showed worsening results; she developed oral thrush and then pneumonia. She ended up in hospital for three months: “I missed the summer.”

She thinks there were a number of opportunities for testing during the two years between being infected and testing HIV positive.

“I think the public health messages have done a lot of damage. The early ones caused a lot of fear and still stick in people’s minds – people quote them who were not even around when they first appeared – and the later ones made people think you could only have HIV if you were African or gay. A close relative was a staff nurse in A&E for years, and even she said ‘You can’t have HIV, you don’t have the lifestyle’.”

Standardising testing

People like Brian, Tom and Annie are lucky to have made complete recoveries. Ian Cormack says: “Thirty per cent of my outpatients have some sort of long-term health consequence from testing late.”

He wants to see the HIV test offered in a much wider variety of areas. His team at Croydon University Hospital, including doctors David Philips and Ali Elgalib, persuaded the hospital’s consultants and chief executive to start offering HIV testing as standard to all medical admissions from July 2011.

“We made the point that standardising HIV testing doesn’t just protect patients, it protects the hospital as part of good clinical care,” he says.

“We regularly visit the emergency room to motivate staff to offer the test and train nurses to do it. We conducted an acceptability study among A&E patients and 84% said they’d happily take an HIV test, 91% if it wasn’t a blood test. It’s the doctors, I find, who are worried. They don’t know how to say ‘HIV test’ to the patient.”

One thing that would help, he thinks, is “to change from the culture of targeted testing”.

Targeting made sense when the point needed to be made that gay men and African people suffered disproportionately from HIV and needed appropriately more attention, more resources – and more tests.

“The problem with targeting now,” says Ian, “is that it encourages a collusion between doctor and patient not to mention HIV. The patient doesn’t want to disclose, and the doctor doesn’t want to ask.”

Although he is pleased at the progress routine HIV testing has made in his hospital and in the community, he says that GPs’ surgeries are where we will make the real gains.

“But GPs need support. We may well feel like saying ‘Look here, this chap was turning up for two years with HIV-related symptoms, why didn’t you test him?’ but we don’t want them getting defensive. We need to work out how HIV testing can be integrated into GPs’ models of care. GPs need support from the top: HIV testing needs to be prioritised and incentivised; it needs to be part of the package of incentives included in schemes like QOF” [the Quality and Outcomes Framework, which rewards GPs for achieving certain health targets].

We have a long way to go in this direction. An audit conducted by the British HIV Association in 2010 found that while the proportion of people who have been diagnosed with HIV in so-called ‘non-traditional settings’, such as A&E, has increased by 14.4% since 2003, the number diagnosed by their GP only increased by 6.4% during the same period.4

The older woman: Kate

Someone whose GP could have tested her earlier was a person I could not interview, because she died of AIDS in January 2011. Rose Matthews’ mother Kate was 59 when she died: “four stone, confused, scared, and not my mum any more. By the end she couldn’t recognise her reflection.”

Rose has made an official complaint about her doctors’ failure to test Kate Matthews for HIV. Her complaint, and the GP’s reply to it, make tragic reading. Kate first started to notice symptoms in August 2007 and her life could have been saved if she had been given an HIV test at any time in the next three years.

She had multiple problems suggestive of HIV: shingles, loss of appetite, swollen lymph nodes, weight loss, cognitive decline – all presented at some point.

This was not a passive or ignorant patient, either. Kate kept a diary detailing her mysterious illness and her visits to the doctor, and at one point even paid for a private scan, which returned a picture of multiple swollen lymph nodes.

The GP practice made a provisional diagnosis of lymphoma, and stuck to this even though a specialist’s report said there were no signs of it: it appears the reason Kate was not given an HIV test was because she did not ‘fit the profile’. She eventually tested HIV positive in the hospital where she died, too late for her to be treated and saved.

“I feel there should be an HIV screen for all new GP patients everywhere,” says Rose (Kate did not live in a high-prevalence area, where this is now recommended). ”My mum probably had had HIV for ten years: if in 2008 her GP had offered her a test, she’d still be here now.” She is now actively campaigning for a revival of general HIV-awareness campaigns, not least for GPs.

The non-presenter: Ekow

By this time you may be feeling scandalised that so many people are still developing serious illness and some dying, just because healthcare workers (and patients) don’t think to test for HIV.

That’s certainly part of the cause, but the last late-presenter I interviewed, and perhaps the one who had the closest brush with death, reminds us that there may always be a core of people undiagnosed with HIV – and he also taught me that I am not immune from making assumptions about someone’s sexuality and risk.

Ekow is a 43-year-old man from west Africa; he’s been in the UK for 20 years, though he periodically travels back home. A quiet, unassuming man, when asked whether he feels the health services missed opportunities to test him for HIV, he says “No, to be honest.

“I am registered with a GP but I’m one of those men who never sought out health care, like men who never ask directions. Besides, apart from the odd hangover when I’ve had one too many at a club, I’d never been ill. There could be a lot of people in my situation, and some people inevitably will have to fall sick before they get tested.”

Last year he started losing weight rapidly and also developed oral thrush. “My friends were saying, ‘There’s something wrong man – you not eating?’

“But it never occurred to me I could have HIV. I’m not the kind of guy who’s jumped from woman to woman.”

One day he woke up and found he couldn’t walk. “I was like a little old man.” He eventually struggled into A&E where they took one look at him, admitted him, and tested him for HIV. “I remember, all the doctors and nurses gathered round my bed and one said ‘You’ve got HIV’. I nearly died then!”

He nearly did. He had a CD4 count of four cells/mm3 and, when put on antiretroviral therapy, he had the severe, paradoxical complication called IRIS (immune reconstitution inflammatory syndrome), which happens when the immune system ‘reboots’ from virtually nothing and and starts over-reacting to the original infection. He developed terrible abscesses in his neck and throat which required a tracheotomy and is still in the situation where he takes one Atripla pill to control his HIV but a handful of other ones to treat opportunistic infection. However, his CD4 count is now 120 cells/mm3 and on the way up.

When I ask if he has a partner, I realise I’ve made an interesting assumption myself: “No,” he says, “not right now. I did have a guy back in Africa I used to go back and visit...” Up till then I’d been assuming I’d been talking to a heterosexual man. If I can make that mistake, it’s hardly surprising if healthcare workers continue to miss cases of HIV, sometimes with fatal consequences, through trying to guess, on the basis of appearance and what people are prepared to admit, whether they should get tested or not. As Ian Cormack says, targeting is valuable to persuade those at highest risk to test, but we need to normalise it across wider areas of health care to find and care for the people who don’t fit the picture.

*Names have been changed.

References

British HIV Association (BHIVA) Mortality Audit 2005-6. See http://bit.ly/Xw1Jss

Health Protection Agency HIV in the United Kingdom: 2012 report. See http://bit.ly/10DhQuM

Langford SE at al. Predictors of disease progression in HIV infection: a review. AIDS Research and Therapy4:11. doi:10.1186/1742-6405-4-11, 2007.

Ellis S et al. HIV diagnoses and missed opportunities. Results of the British HIV Association (BHIVA) National Audit 2010. Clinical Medicine 12(5): 430-4, 2012. Full text article: http://bit.ly/Xw5K02.

At some point Robert decided to stop taking his medicine. He had his reasons, and I respected his decision. A friend of his, Kevin, told me not to blame Robert, because "he chose to go without meds." Robert had lost hope. He didn't think he was going to get any better. His health was always going to be a roller coaster ride, and he was tired of it. 

If Robert were living now, life for him would be completely different. I remember him having to take up to 15 pills daily. Some of them looked as big as a peach pit. It was a daily struggle for him to down all those pills day in and day out. In many cases the side effects of those drugs were devastating. Nowadays there are people with HIV who only need to take one pill a day. Most Americans with HIV live nearly normal, if challenging, lives.

Secondly, the Internet has made it possible for us to connect with total strangers with the same needs. In the early '90s technology was all about email and instant messages. Now there are thousands of HIV/AIDS organizations throughout the world, all with their own websites, advocating for the eradication of HIV/AIDS through early screenings, education and subsequent medical interventions. "CHANGE HIVSTORY" is but one example. The goal of these good, Vancouver-based people is to end HIV through early detection, treatment and prevention. There are countless other organizations, large and small, staffed by some extraordinary people, too numerous to mention in a blog. A simple Google search will lead you to just about any kind of help you need.

My Twitter feed is also full of individuals like Josh, who is one the many Twitter warriors who keep a blog encouraging others to connect with them to tell their story, thereby reducing the stigma surrounding HIV/AIDS. I like to think that were Robert still alive, he would be doing the same kind of work that these people are doing. Instead of me telling him that he "didn't do anything wrong," Robert would be the one comforting and educating others.

Do we still have a ways to go? Of course we do. Just reading the comments on last week's blog posts about World AIDS Day, I was saddened by the lack of compassion many have toward those with HIV/AIDS. Even more troubling is the cavalier attitude held by others who feel that they are impervious to STDs and continue engaging in high-risk behaviors. It's like we haven't learned anything at all.

I refuse to let the lives of all those known and unknown who died of AIDS have no impact on our lives today. We owe so much more to our children, lovers, brothers, sisters and friends who passed on. If you have AIDS or are HIV-positive, you have an awesome responsibility. Try to see yourself as a leader, mentor and teacher. Be the one to keep the candles burning and the red ribbons on our lapels. Remind yourself daily that there is no room in your suitcase for shame. You will find allies. We number greater than those who turn away from you and offer no help in eradicating this disease.

Don't look back and say, "I coulda, woulda, shoulda." Move forward, and we will move forward with you.

I believe that soon there will be a generation free of HIV and AIDS.

I would like to thank Warren for being extremely patient with me as I relived my journey with Robert, Bob Leahy for inviting me to be a guest author on the volunteer website PositiveLite.com, and all the individuals who encouraged me to continue telling Robert's story.

Follow Gary Nelson on Twitter @morrobayborn.

This post originally appeared in The Huffington post here. 

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

The long-term effectiveness of antiretroviral therapy means that many HIV-positive people should be eligible for affordable life insurance, European investigators write in the online edition of AIDS. Even though HIV-positive people doing well on treatment had a higher mortality risk compared to insured HIV-negative individuals, this excess was within acceptable limits for life insurance cover.

“Our study provides evidence that could allow life insurance up to 20 years term to be offered to lower risk HIV positive individuals at affordable premiums,” write the authors. “Whole life insurance at guaranteed rates may become feasible when data on mortality with longer duration of ART [antiretroviral therapy] become available.”

Improvements in HIV treatment and care mean that the life expectancy of many HIV-positive people is now approaching the average. A small number of life insurance products offering limited cover are now available to people deemed to be 'low risk' – those doing well on treatment with no history of injecting drug use or hepatitis C co-infection.

Despite this, access to life insurance still remains limited.

Investigators from European Antiretroviral ART Cohort Collaboration (ART-CC) were concerned that fair access to life insurance was being denied to people doing well on HIV therapy.

They therefore estimated the relative mortality risk for HIV-positive people from six months after starting antiretroviral therapy compared with the insured population in France, the Netherlands and UK, and with adjusted mortality rates for Italy, Spain and Switzerland.

The analysis was based on data provided by approximately 35,000 people who started HIV therapy between 1996 and 2008. Most (70%) were male and aged between 30 and 49 years (65%). Three-quarters had a CD4 cell count below 350 cells/mm3 when they initiated treatment. None were infected with HIV via injecting drug use or had baseline hepatitis C co-infection.

There were 1236 deaths during 174,906 person-years of follow-up, a mortality rate of 0.71 per 100 person-years of follow-up. Mortality rates fell with age (p < 0.005) and duration of antiretroviral therapy (p < 0.005) and were lower for people who started treatment after 2001 (p < 0.005).

The investigators compared mortality risk between the insured HIV-negative population and the subset of the lowest-risk HIV-positive people – individuals with an undetectable viral load and CD4 cell count above 350 cells/mm3 six months after starting treatment and no history of AIDS-defining illness.

People with these characteristics aged between 30 and 39 years had a relative mortality risk of 459% compared to insured HIV-negative individuals.

The investigators emphasise that this risk was well within the 500% limit normally used as the threshold for insurability.

Mortality risk fell with increasing age and duration of therapy. Individuals in their 40s who had been taking treatment for over seven years and who had a CD4 cell count between 200 and 349 cells/mm3 had a relative mortality risk of 238%.

“Relative mortality compared with insured HIV negative lives declined with increasing duration of ART, and decreased with age despite increases in mortality rates with age, a phenomenon that has been observed in other studies of HIV populations,” note the authors. “The lives of people with HIV tend to become more insurable with increasing duration of successful ART.”

Overall, 61% of people taking treatment had a mortality risk below the 500% threshold and 28% had a risk below 300%.

“Our results imply that more than 50% of patients – those with lower relative mortality – in an HIV positive population with similar risk profile to that analysed in this study cold be insurable,” comment the investigators. They believe their estimates are likely to be conservative as modern HIV therapy is much more tolerable and effective than that taken in the late 1990sand early 2000s. “People newly diagnosed with HIV can be expected to survive longer than those recruited to cohorts between 1996 and 2010: studies such as ours necessarily provide trailing indicators of mortality rates.”

The investigators conclude that the lack of insurance products for people doing well on HIV treatment can no longer be justified, “since the excess mortality of those with HIV is comparable to many other groups with morbidities that are insured…our study provides data that will allow the insurance market to open up to people living with HIV.” The authors intend to communicate their findings directly to insurance companies so that they can amend their policies, “with consequent improvements in the quality of life for HIV positive people”.

Reference

Kaulich-Bartz J et al. Insurability of HIV positive people treated with antiretroviral therapy in Europe: collaborative analysis of HIV cohort studies. AIDS 27, online edition: DOI: 10.1097/QAD.0b013e3283601199, 2013.

This article by Sean Hosein first appeared on the CATIE website here 

Une version française est disponible ici. 

In Canada and in most other high-income countries the cost of HIV treatment is subsidized for permanent residents and citizens. Such treatment, commonly called ART or HAART, helps to stabilize the immune system and reduces the amount of HIV in the blood and genital fluids. ART’s power is so profound that an HIV-positive young adult who initiates therapy and takes his/her medicine every day exactly as directed and who has minimal pre-existing health conditions is expected to live for several decades.

ART also has another effect: Clinical trials in heterosexual couples where one partner has HIV and takes ART have found that effective treatment reduces the sexual spread of HIV. In these clinical trials, screening for and treatment of sexually transmitted infections, safer-sex counselling and condoms are all regularly provided. Clinical trials with same-sex couples are ongoing.

Faced with promising data from clinical trials performed so far, researchers, public health authorities, policy planners, doctors and nurses are increasingly looking toward the expansion of ART to more HIV-positive people as one means of helping to slow the HIV pandemic. This use of ART—to help reduce the spread of HIV—is called Treatment as Prevention (TasP). A key aspect of programs that focus on TasP is testing for HIV.

Traditionally, HIV testing strategies have targeted specific populations who are at high risk for HIV transmission. In addition to diagnosing HIV in those who are unaware of their status and connecting them with care, targeted testing strategies provide opportunities for enhanced prevention counselling in high-risk populations. However, in Canada and other high income countries, a significant proportion of people living with HIV remain undiagnosed despite targeted testing strategies. Often these people access other health services but are not offered an HIV test because they are not identified as high-risk candidates.

In order to help uncover HIV, the U.S. Preventive Services Task Force (USPSTF) is now poised to endorse the routine testing of HIV in people aged 15 to 65 in medical settings, where HIV testing takes place just like any other test. This recommendation is very important because researchers estimate that between 20% and 25% of HIV-positive people in the U.S. do not know that they have this virus. Unaware that HIV is slowly degrading their immune system, such people may ignore warning signs of impending illnesses. This increases their risk of serious AIDS-related infections, which can be difficult to treat, are expensive for hospitals to manage and can lead to death. Furthermore, if someone does not know their HIV status, they may not take steps to help prevent its spread.

In the U.S. there are about 1.1 million HIV-positive people and 56,000 new HIV infections every year. Many public health officials hope that the looming USPSTF recommendations about HIV testing will be a very important step on the road to bringing the HIV epidemic under control.

The USPSTF recommendations will add to the growing consensus from leading public health, medical and scientific organizations in the U.S. that routine HIV testing is an important step forward in helping to reduce the spread of this virus and bring people into care. Such organizations include the following:

• The Centers for Disease Control and Prevention (CDC)
• The American College of Physicians
• The Infectious Disease Society of America
• The American College of Obstetricians and Gynecologists 

Due to changes underway in the American healthcare system, routine HIV testing should increasingly become available at no additional cost to the person seeking it.

Hopefully, the USPSTF recommendations will help to uncover the 20% to 25% of Americans who researchers estimate are HIV positive but unaware of their infection and usher them into care and treatment.

In Canada there are approximately 71,000 HIV-positive people and about 3,200 new HIV infections per year. Public health authorities in British Columbia that have been working to expand opportunities for HIV testing in that province have recently called for the routine offer of an HIV test to be expanded across Canada. As in the U.S., Canada also has a large proportion (about 26%) of HIV-positive people who do not know their infection status.

AIDS was first recognized in 1981, and the cause, a virus we now call HIV, was discovered in 1983. Now, 30 years later, high hopes are being placed on the normalization and expansion of HIV testing and treatment so that the spread of the epidemic can be slowed, particularly in high-income countries such as Canada, France and the U.S. 

Sean R. Hosein

Resources 

Editorial in Canada’s leading medical journal calls for routine HIV testing – CATIE News

High rates of HIV testing among pregnant women in Ontario – CATIE News

The HIV treatment cascade – patching the leaks to improve HIV prevention – Prevention in Focus