/Shafiyah Khan

About Shafiyah Khan

This author has not yet filled in any details.
So far Shafiyah Khan has created 987 blog entries.

HIV positive men undress to raise awareness about ageing with the virus A new campaign highlights the health issues that can affect us as we get older – and which HIV positive people need to be aware about

HIV positive men undress to raise awareness about ageing with the virus
Bisi, Marcos and Graeme are three of the HIV positive men taking part in the new campaign (Photo: HIV is: Just a part of me)

A new campaign aims to encourage HIV positive men to take steps to live a long and healthy life.


Its aim is to encourage men to take an active role in ensuring that they maintain a good quality of life for as long as possible. This means being aware they may be susceptible to other illnesses and will face all the regular challenges of ageing.


Riccardo, 26, from Italy but now living in UK – his body art highlights diabetes (Photo: HIV is: Just a Part of Me)


The campaign has been produced by pharmaceutical giant, Gilead Sciences.

‘The campaign aims to improve understanding amongst gay and bisexual HIV positive men of eight potentially serious health challenges that can affect their HIV health,’ says a press statement.

‘[It] encourages men living with HIV to move forward from just focusing on their viral load as a measure of health, towards considering their risk of developing these eight health challenges.’

The campaign was planned in conjunction with a steering committee of HIV organizations. These included Plus Onlus (Italy), BASELINE (UK) and ARDHIS (France), among others.

Graeme, 32, UK - his body art highlights mental health

Graeme, 32, UK – his body art highlights mental health (Photo: HIV is: Just a Part of Me)


Body paint to highlight health issues

Each man involved took part in a photo project and video. They removed their top and allowed an artist to highlight different body parts that can be affected by ‘co-morbidities’. These include the bones (osteoporosis), lungs, kidneys, heart. Conditions include type II diabetes, among others.

Mental health is also part of the conditions examined. It is known those diagnosed with HIV are more susceptible to mental health problems. This is, in part, due to continuing stigma around the virus.

In their respective videos, they talk about being HIV positive, their health and concerns.

Steps people are encouraged to take include: talking improving their nutrition and keeping an eye on their weight; stopping smoking; or simply talking to their health professionals about ageing with HIV.

‘There are many HIV prevention campaigns, but far too few for those already living with HIV’

One of those included in the campaign is Antonis Papazoglou, 38, from Greece. He has been living with HIV for seven years.

Antonis, 38, from Greece

Antonis, 38, from Greece – his body art highlights cardiovascular health (Photo: HIV is: Just a Part of Me)


‘There are many HIV prevention campaigns, but far too few for those already living with HIV,’ he explains as part of the campaign.

‘I want HIV is: Just a part of me to help others know that they are not alone. It’s normal to be worried and not know how to deal with your diagnosis, but once you do you can move on and look after your long term health.’

Loving myself more

Another of those to take part was Greame, 32, from Liverpool in England. At yesterday’s event he talked about how his diagnosis five years ago impacted his mental health. He told GSN that receiving the news of his diagnosis was like ‘a car crash’.

He said taking part in the campaign had been empowering: ‘Very much so. Before I got my HIV diagnosis, I’d spent a lot of my 20s with serious mental health problems. I’d had some trauma when younger.’

His HIV diagnosis had made him reassess his life and mental health and actively seek out support. ‘I needed to start taking some serious responsibility for my mental health. And start loving me a lot more than I was before.

Bisi, 43, from Nigeria but living in UK - his body art highlights kidney health

Bisi, 43, from Nigeria but living in UK – his body art highlights kidney health (Photo: HIV is: Just a Part of Me)


‘Becoming HIV positive, it’s been bad, but some positive things have come from it, and one of the big things is actually getting involved with this campaign. I was very particular about how I shared my HIV status before I did this campaign. That was the internalized stigma – it stopped me being authentic to me as a person.’

One of the medical professionals supporting the campaign is Dr Tristan Barber, Consultant Physician at Chelsea & Westminster NHS Trust.

‘Our focus for HIV management has changed in recent years and we now need to address the wider health issues associated with living long-term with this disease,’ he said in a press statement.

‘It isn’t just about controlling the HIV virus anymore. Patient awareness of other health conditions linked to HIV could be improved, and we want this campaign to be the catalyst for better understanding.’

Philip, 32, UK - his body art highlights healthy bones

Philip, 32, UK – his body art highlights healthy bones (Photo: HIV is: Just a Part of Me)


‘It isn’t just about controlling the HIV virus anymore’

At yesterday’s launch, GSN took the opportunity to ask: Are the long-term health problems explored in the campaign linked to the impact of the HIV virus on the body, or are any linked to side-effects of long terms medication use?

‘Historically, they were to do with medication or untreated virus,’ says Barber. ‘But what we’re seeing now, as we’re seeing people diagnosed and put on treatment earlier … is there something that happens when you first get HIV that means you’re still at risk a bit down the line of HIV-related issues? Or are we going to see [those issues] slowly fade out as we start treatment earlier?

‘We’re managing a group of people who have been historically treated with lower CD4 counts, who had longer periods of exposure to virus.

‘What we want to do is encourage people newly diagnosed to be on treatment as soon as possible, live as healthy as possible, and we don’t yet know the answer to that experiment which will happen 20, 25 years down the line.’

Barber says the range of anti-HIV drug treatments on the market are now generally well tolerated by patients. He hopes the campaign will encourage more men to talk to their doctors about their health concerns.

‘We have that historic thing where GP practices [in the UK] are often called family practices or family doctors. This excludes a lot of people who may not feel they fit into that heading. I would like to see some of that stigma broken down by a campaign like this.’

Wojciech, 71, from Poland - his body art healthy bones

Wojciech, 71, from Poland – his body art healthy bones (Photo: HIV is: Just a Part of Me)


‘How do you live long with HIV?’

Peter Borg is Medical Director, Gilead Sciences Europe. Asked why Gilead had produced the campaign, he pointed to the fact that 1 in 3 people living with HIV in Europe are over 50.

‘That talks in some respect to the success of treatment, and so one of the emerging issues now is how do you live long with HIV?

‘The whole purpose of the campaign is if you raise awareness that these co-morbidities exist, then you can start having a conversation with your doctor around the best way to manage those.’

He said he hoped the campaign, which focuses on how to live a long life with HIV, would help to address some of the stigma around the virus and encourage more people to get tested.

A similar campaign, aimed at women, is planned for later this year.

‘Bold campaign for a pharma company’

One of those to welcome the campaign was HIV+ postive blogger, Tom Hayes. He said he thought it, ‘A very bold campaign for a pharma company. They usually tend to err on the side of caution with these things. It was nice to see them addressing issues relating to men who have sex with men.

‘I think the most impactful thing anyone in this area – with diseases such as HIV or cancer or diabetes – is to involve people living with that condition in the messaging.

‘It really hits home to other people who are living with the same condition who are watching, and it speaks more to health professionals as well.

Paolo, 31, from Italy - Paolo's body art highlights healthy lungs

Paolo, 31, from Italy – Paolo’s body art highlights healthy lungs (Photo: HIV is: Just a Part of Me)


Matthew Hodson, Executive Director of NAM, also welcomed the campaign. He told GSN, ‘People with HIV are living longer. In the UK now, four in ten people in HIV care are over the age of 50. Increasingly we have to consider how the challenges of aging affect people living with HIV.

‘Heart disease, diabetes and cancer all occur a little more frequently in people living with HIV, although it is hard to separate out what is the result of HIV infection and what is the result of other lifestyle factors. People with HIV are more likely to smoke and have higher levels of stress, both of which can have an significant impact on a range of health issues.

‘Especially as you get older, it’s important to stay in touch with your healthcare providers. The regular tests and screens at HIV clinic appointments means problems can be spotted early.’

Check out all the videos in the campaign here.



There’s an uptick in HIV in these millennial groups. Here’s why

 Candles glow for World AIDS Day on December 1, 2017, in Mumbai, India.
Candles glow for World AIDS Day on December 1, 2017, in Mumbai, India.
Image: Hindustan Times via Getty Images
The Centers for Disease Control and Prevention (CDC) just released a report about HIV trends for people under 30 in the U.S., and the numbers show an increase in one particular group: 25- to 29-year-olds.

After collecting data from all over the country on HIV and AIDS diagnoses between 2010 and 2014, the CDC found that overall rates of infection for 13- to 29-year-olds has remained stable overall. And for some of the younger groups, like those aged 15 to 19, rates have actually gone down.

But “We can’t pat ourselves on the back just yet,” said Craig Wilson, a professor of epidemiology and public health at the University of Alabama at Birmingham, in an interview.

“There are good things if you look at it historically, but the bad part is, why aren’t we doing better?” asked Wilson, who was not involved in the CDC report.

Although these are estimations and not exact numbers, rates increased from around 32 to 35 cases per 100,000 people in the 24- to 25-year range and from around 30 to 34 cases in the 26- to 27-year range between 2010 and 2014. (Collectively, these fall under the CDC data collection system for the 25-29 year range.)

HIV — a virus that attacks and destroys cells in the body’s immune system to the point that it causes acquired immune deficiency syndrome, or AIDS — has existed in the U.S. since the 1970s and was first recognized by medical experts in the early 1980s. Nearly four decades later, tens of thousands of new infections are diagnosed in the U.S. each year. Risk of infection from sex, however, can be reduced by over 90 percent if modern PrEP medications are taken as directed, says the CDC. These drugs are designed to stop HIV from establishing itself or spreading throughout the body. And, of course, a person has to know they’re infected to start taking medication.

What’s worrisome is that the younger demographic of 13- to 29-year-olds makes up a disproportionate number of new HIV infections. The CDC says this group made up 23 percent of the U.S. population in 2014, but accounted for 40 percent of diagnoses that year.

Why aren’t the infection numbers going down?

The flattening trend in HIV diagnosis among younger teens and millennials isn’t bad, in the sense that matters could be worse — and still could get much worse. Wilson cites CDC stats from 2016 that he called “scary”; this government report projected that half of black gay men and a quarter of Latino gay men would be diagnosed with HIV in their lifetimes.

Although there’s potential for HIV diagnoses to dramatically increase in some populations, experts still find the recent flattening trend unacceptable.

“The status quo isn’t so good — we need to do a better job,” said Sharon Nachman, division chief of pediatric infectious diseases and professor of pediatrics at Stony Brook Medicine, who also took no part in the CDC report.

A primary reason why overall rates aren’t dropping, and are actually increasing in 25- to 29-year-olds, is that millennials are failing to take the first preventative steps, like getting tested. “Even though the rates may be stable, millennials are less likely to have had an HIV test, even compared to older groups,” said Brandon Brown, an HIV expert at the University of California Riverside School of Medicine who played no part in the report, over email.

There could be many reasons for this, he noted, like millennials believing they’re not at risk, or possibly thinking HIV is now a manageable illness.

But getting tested is critical to getting the currently “flattening” trend to begin tracking down.

Wilson said the greater goal is for 90 percent of people infected with HIV to know their diagnosis, and then for 90 percent of those who know to receive therapy for HIV — therapy that decreases transmission.

“If we hit those numbers, we’ll start seeing downtrends, because HIV transmission is taking place from those not on therapy,” said Wilson.

Inadequate testing, however, is not just the fault of millennials. Getting people to know their status requires doctors doing a better job about talking to their patients about testing.

Nachman says doctors should ask about about HIV the same way they ask about smoking. And all doctors these days, from cardiologists to dentists, seem to ask whether you smoke.

“Until we normalize HIV testing and remove testing stigma, this will continue to be a problem where many don’t know their status,” said Brown.



HIV prevention: It’s time to stop accepting the status quo, PrEP Summit concludes

PrEP in Europe Summit 2018

The biggest barrier to HIV pre-exposure prophylaxis (PrEP) becoming more available and more widely used is not cost so much as widespread acceptance of the status quo in HIV prevention, the first-ever European PrEP Summit, held in Amsterdam earlier this month, heard.

Ignorance – among politicians, among healthcare workers, and among potential users of PrEP – was the main reason Europe lags far behind the USA in PrEP provision, despite there being a possibly more favourable climate in terms of potential drugs costs.

The decision by Dean Street clinic in London to start selling generic, off-patent Truvada a decision given a you-heard-it-here-first announcement at the Summit by activist Greg Owen of I Want PrEP Now – is just one of a number of innovative solutions countries have had to take to meet rising demand – a demand exemplified by the fact that I Want PrEP Now is now catering for about 25,000 users a month.

And yet the Summit also heard that PrEP provision in many parts of Europe has scarcely started. In eastern Europe, despite international agencies like the World Health Organization (WHO) having given PrEP their full backing for several years, small pilot studies are only just now starting or planned to start this year.

These countries, of course, still face difficulty in providing treatment to people who already have HIV. But the fact that PrEP provision is even being contemplated in Russia, where a pilot study amongst men who have sex with men is planned to start in September, and is already underway in Ukraine and Georgia, may be a hopeful sign that PrEP-using gay men have something to contribute not only to HIV prevention but to addressing the stigma that surrounds gay men, trans people and other populations at risk of HIV.

More worrying is the fact that PrEP uptake has been lower than expected in some countries – including France, which led the way with free PrEP provision via a National Health Service in 2016. Studies and clinical experience show that there may be several reasons for this. Firstly, knowledge of PrEP is still very low among other populations, who might benefit from it, notably women, as Germany’s Harriet Langanke, citing the Flash! PrEP study, showed. Secondly, in some countries several appointments – for assessment, for HIV and other tests, and for PrEP dispensing – may be required and these ‘hoops’ may act as a disincentive to people who may be anxious about starting. Thirdly, as France’s Daniela Rojas Castro said, PrEP has added a burden in terms of staff training and hours to already stretched health systems.

The most fundamental problem may still be stigma, however. In the presentation from Ukraine, Vitaly Andres, presenting on behalf of Dzmitry Filippau of the men’s health foundation MenZDRAV, showed that gay men in Kiev are still widely ignorant about PrEP and would prefer a long-acting formulation rather than a daily pill – something African women have also expressed a preference for, and a possible indication that PrEP’s acceptability may be hindered by fears for privacy and of being seen as either gay or HIV-positive.

The Summit – more details

The PrEP in Europe Summit 2018 was attended by 120 PrEP activists, doctors and policymakers from 33 countries in Europe and central Asia, plus the US and Australia. Forty-seven were “scholars”, with travel and accommodation fully supported, while another 24 attendees were supported by PrEP in Europe’s partner organisations, AIDES, EATG, AVAC and PrEPster.

The meeting was funded primarily by the Netherlands’ HIV Funding organisation Aidsfonds, with additional grants from AIDES and UNAIDS. In addition, funding from two pharma companies – ViiV and Merck – has supported the PrEP in Europe Initiative from the start and made such a meeting possible.

Twenty-four attendees were women of whom three were trans women. Among the 92 men two were trans men. There were 28 attendees from central and eastern Europe plus three from Turkey and Lebanon. We did not ask people if they were PrEP users themselves: a deficit to be corrected in future, though a straw poll in the room revealed about 12 who were prepared to put their hands up.

The 1.5-day meeting heard updates from various European countries on progress towards PrEP provision on the Friday: the Saturday featured presentations on making PrEP more widely available to women, trans people and migrants; presentations on pathways to PrEP provision in western and eastern Europe and online; and considerations of how to spread the word about PrEP on dating sites and social media.

The Summit heard that in western Europe, PrEP provision schemes have multiplied in the last year. The exact model of provision arrived at varies from country to country and, interestingly, so has the rate of uptake, with signs that programmes devised more recently may be recruiting faster.

The English PrEP Impact Trial has already recruited nearly half of its 10,000 participants in its first four months even with only half of its sites open, the National AIDS Trust’s Yusef Azad told the Summit. In fact, some clinics have already filled up their allocation of free PrEP places. In Belgium, during the same time period, 737 people started PrEP, which is a slightly lower number per head of population. In Norway, over a longer period, approximately 700 people have started PrEP. While in Germany, over an even shorter time period, a scheme that takes advantage of a special deal struck between health insurance funders and community pharmacies already has 1500 PrEP users.

In France, however, the European country that first decided to provide PrEP, only 5352 people started PrEP in the first 18 months, for reasons suggested above. These figures contrast with at least 150,000 in the US.

Uptake among populations other than gay men is still very low. In France, only 0.5% of people taking PrEP through the national programme are women and even in the US the proportion of PrEP takers who are women is only about 10% of the number of gay men, despite it being estimated that in numerical terms as many women are at high-enough risk of HIV to need PrEP as men.

PrEP awareness among other populations is also starting from a low base. Michelle Ross and Kate Nambiar of the UK gave an interesting presentation showing that so far 34 trans women and men have joined England’s IMPACT trial via two clinics for trans people in London and Brighton, CliniQ and Clinic T. This is a start but still represents less than 1% of the people in the study.

Messages from the attendees

But at its heart this was an activists’ meeting and the most important aspect of the Summit was probably the breakout sessions that explored facilitators and challenges to PrEP provision, opportunities to overcome those challenges, and future possibilities for biomedical prevention beyond PrEP.

One common theme that emerged from the breakout discussions was that PrEP needed to be ‘demedicalised’. This means it needs to be placed within the mainstream of HIV prevention, and access to this extremely effective prevention method against a deadly disease seen firmly as a matter of human rights, rather than just as a medical issue or one of public health. Indeed, PrEP could be a hostage to fortune if it is ‘sold’ to politicians and healthcare providers purely as a way to shrink a country‘s HIV epidemic – although other attendees commented that educating politicians and healthcare providers about cost-effectiveness and about the economic arguments for PrEP were also very necessary, and might persuade where human rights arguments, by themselves, do not.

It is important to note that a small but significant proportion of the attendees were clinicians themselves. WHO’s Yannis Mamaeltzis, citing evidence from countries that had already achieved some PrEP provision, said that PrEP-supporting clinicians, healthcare workers and researchers, especially when allied with activists, had often been pivotal in persuading policymakers to adopt PrEP. “It might only take a handful – literally five or so – key people in a country to start a PrEP programme,” he remarked.

Author: Gus Cairns


Immune Activation and Inflammation Among HIV-infected Youth with STIs

Patients with HIV infection experience chronic immune activation as a result of disease progression, which is associated with declining CD4+ T-cell counts and development of persistent inflammation. Despite the many benefits of combined antiretroviral therapy (cART), these alterations in immune function cannot be fully reversed. Sexually transmitted infections (STIs), which are common among young patients with HIV, are also linked to systemic effects such as immune activation and inflammation.
Tanya Kowalczyk Mullins, MD, MS, pediatrician and clinical researcher, Cincinnati Children’s Hospital who specializes in the prevention of HIV and other STIs in adolescents, set out with colleagues to study the association between STIs and systemic inflammation and immune activation, among a sample of HIV-infected virally suppressed cART adolescents.

Patients included in the study were 18–24 years old, had been behaviorally infected with HIV, and presented with CD4+ T-cell counts > 350 cells/mm3. Seventy-five patients were recruited at 23 US sites, and patients then received early cART for 48 weeks.

Of the 75 patients recruited, 49 achieved viral suppression by week 24 and maintained suppression through week 48. Patients were monitored for STIs, specifically herpes simplex virus (HSV), syphilis, chlamydia and gonorrhea, at pre-entry, baseline and periodically throughout the study period. Patients also underwent numerous laboratory studies to characterize immune activation and markers of inflammation.

Results of the study revealed that patients who were diagnosed with any STI during the study had significantly lower CD4+ T-cell counts at the conclusion of the study period compared with those patients who did not contract an STI. In addition, patients who were diagnosed with STIs other than HSV demonstrated novel markers of immune activation on CD4+ T-cells.

Mullins and colleagues found that patients contracted STIs throughout the study period, indicating ongoing risky sexual behavior despite counseling by health care providers. They suggest that “because STIs in HIV-infected youth are associated with HIV transmission and systemic inflammation, developing safer sex interventions specifically targeting HIV-infected youth is critical.”

HIV-infected youth in the study with STIs also had lower CD4+ CD28+ percentage.

“Because lower CD28 levels are associated with terminal differentiation and disease progression, these findings further support that STIs may contribute to chronic immune activation among HIV-infected youth even when viral replication is controlled,” Mullins and colleagues observed.

Study authors noted a number of limitations: the timing of STI diagnosis was unknown, meaning researchers could not establish causality; a small number of participants limited the power of the study; the site of STIs was not reported, meaning differences in immune activation by site could not be determined.

Overall, Mullins and colleagues concluded that despite these limitations, clinical evidence of inflammation and immune activation were clear, the study findings were biologically plausible, and they suggest further studies are needed.

Author: Elizabeth Kukielka

Fibromyalgia/CFS patients fighting for awareness of career-ending illness

For years medical profession has questioned if fibromyalgia or chronic fatigue syndrome are real

Peter Dawe was the director of Newfoundland and Labrador chapter of the Canadian Cancer Society for more than a decade.

Peter Dawe was the director of Newfoundland and Labrador chapter of the Canadian Cancer Society for more than a decade. (Mark Quinn/CBC)


Peter Dawe says fibromyalgia and chronic fatigue syndrome —  diseases that can cause debilitating exhaustion, joint and muscle pain — have quietly stalked him since his 20s.

It started as a grogginess he thought was caused by hard work or lack of sleep.

‘The disease’s career won out.’ – Peter Dawe

But during the 16 years he was the director of the Newfoundland and Labrador chapter of the Canadian Cancer Society it got progressively worse.

“This was deep. This is in your bones. I just couldn’t function physically,” said the 57-year-old.

He fought back and after leaving the Cancer Society more than a decade ago he became provincial candidate for the district of Topsail, but in 2010 he quietly bowed out, citing health reasons.

“I had a career and the disease had a career and the disease’s career won out,” he said.

Not taken seriously

Dawe says that along with his symptoms, he was fighting the stigma fibromyalgia and chronic fatigue syndrome carry and the grinding doubts of many people, even members of medical profession, who questioned if his illness was real or “all in his head.”

“You end up being so frustrated, so down on yourself, that you don’t talk to anybody. You stop going to professionals because there is no answer and the more you go, the worse you feel,” he said.

“You get beaten down. Lots of times you end up quitting and you back out.”

Affects different people differently

Chronic fatigue syndrome has recently also become known as myalgic encephalomyelitis or ME. It has many of the same symptoms as fibromyalgia.

Some patients have symptoms of  both chronic fatigue syndrome and fibromyalgia and use the terms interchangeably but many believe fibromyalgia and chronic fatigue syndrome are distinct conditions. They say fibromyalgia patients are more likely to have chronic pain and chronic fatigue patients are more likely to have debilitating exhaustion.


Chronic fatigue syndrome affects people differently. Some cases are mild, but in severe cases it leaves patients unable to get out of bed for months or even years.


Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is known for causing an overwhelming sense of tiredness.


The cause remains unknown and these conditions are difficult to diagnose. Dawe said he had to fight for treatment because very few doctors in Atlantic Canada are knowledgeable about the conditions.

From triathlete to traumatized

One Canadian activist who’s fighting for more research money and greater awareness of myalgic encephalomyelitis said his experience with medical system was traumatizing.


Scott Simpson, of MillionsMissing Canada, met with federal cabinet minister and physician Carolyn Bennett in September 2017 to talk about myalgic encephalomyelitis. (Facebook)


Torontonian Scott Simpson was a triathlete before he became sick. He’s lived with HIV since the late 1990s, but his experience with the medical system didn’t prepare him for becoming sick.

“It was traumatizing. In the context of HIV there is lots of support, there is a lot of support and there is lots of research funding. On the other end of our health care spectrum there is M.E.,” says Simpson, a M.E. patient advocate with a group called Millions Missing Canada.

“I could count the number of M.E. doctor in Canada on one hand.”

St. John’s physician says tide is turning

Dr. Pradip Joshi, an internal medicine specialist in St. John’s, says more members of the medical community are accepting that fibromyalgia is real.


Dr. Pradip Joshi treats fibromyalgia in St. John’s. (Mark Quinn/ CBC)


“There are physicians who believe that this is a true entity and there are others who believe that this is a psychosomatic disorder. Lately, especially in the last five to 19 years, it is obvious that this is a clearly recognized condition,” Joshi said.

Joshi believes more must be done to educate physicians and patients

“There are pharmacological as well as non-pharmacological treatments. Now that we have better criteria and better knowledge of this disease it is much easier to formulate a plan of treatment.”

Prevalence unknown

The Newfoundland and Labrador Centre for Health Information said that in the past five years, 68 people with fibromyalgia have been hospitalized. It said provincial Medical Care Plan (MCP) coding doesn’t capture if a patient visits a doctor for fibromyalgia.

Dawe and Simpson believe the true number of people dealing with fibromyalgia/chronic fatigue syndrome is much higher.

They describe it as an “epidemic” affecting half a million people across Canada and thousands in Newfoundland and Labrador.

“The numbers now are starting to become apparent and it’s startling. Stats Canada from 2015, over a half a million Canadians self-identify with fibromyalgia and chronic fatigue syndrome,” said Dawe.

“You are probably looking at thousands of people in Newfoundland and Labrador who have this condition but there are not getting treated by the medical system. They are not being recognized by the system.”

Author: Mark Quinn


With PrEP, Daily Dosing May Not Be Necessary

One study, known as the Alternative Dosing to Augment PrEP Pill Taking (ADAPT) study, found that individuals who are given appropriate support can have excellent results with non-daily PrEP dosing schedules. The ADAPT study, conducted by researchers in the United States and Thailand between 2012 and 2014, involved 357 men—both cisgender and transgender—who have sex with men. Half were enrolled through a community clinic and clinical research site in Bangkok and the other half were enrolled through a clinical research site in Harlem, a traditionally African American enclave in upper Manhattan. The men were randomly assigned to take either 1 PrEP tablet daily, 1 tablet twice a week along with a post-sex dose, or 1 tablet before and 1 after sex.

The researchers followed up with the participants via self-reports, electronic drug monitoring devices that recorded pill bottles being opened, and dried blood samples or peripheral blood mononuclear cells that revealed whether there were adequate concentrations of the PrEP medications in participants’ systems. In-person clinic visits took place weekly in the early stages and tapered off to roughly once a month for the duration of the trial. The goal was to ensure that study subjects had sufficient coverage for all instances of sexual intercourse via their ingestion of PrEP.

By offering non-daily PrEP regimens, providers can acknowledge that an individual’s sex life may change over time, Robert M Grant, MD, MPH, a professor at the University of California, San Francisco School of Medicine and the lead author of the study, told Contagion®. “People move into and out of seasons of HIV exposure, depending on their relationship status, their substance use, their housing, their employment and so much else,” he said. A non-daily PrEP regimen allows users to easily start and stop the medication depending on their needs.

However, the results of the ADAPT study highlight the need for strong support for patients who stray from the conventional daily-PrEP regimen. In the Bangkok cohort, participants in the daily-dosing arm of the trial achieved an 85% coverage of sexual events, with the twice-a-week cohort seeing an 84% coverage rate. Participants who took PrEP before and after sex saw a 74% coverage rate. The Harlem participants, however, fared much worse: 66% of those taking PrEP daily were covered for sexual events, 47% of the twice-a-week arm were covered, and 52% of those taking PrEP before and after sex were covered.

Why was there such a discrepancy in the coverage rates between the cohorts? “The Bangkok site had extensive experience with gay and bisexual men and transgender women,” Dr. Grant said. “They had been providing high-quality clinical and social services for many years, and this research was built into that framework of trust. In contrast, the Harlem site only does research, and they were working with young men of color for the first time. We have seen how PrEP use is typically highly effective when offered by community-based organizations, while research sites struggle with adherence.”

PrEP’s side effects include nausea, fatigue, gastrointestinal upsets, and headache. The 2 study cohorts experienced no significant differences in neurological or gastrointestinal side effects, although the daily-dose group at both study sites seemed to suffer more side effects around week 10. After week 10, the Bangkok group experienced fewer neurological side effects while Harlem’s were unchanged. Participants in both study sites suffered fewer gastrointestinal side effects after week 10.

The ADAPT study took place before the results of a similar study, the Ipergay study, were available. The Ipergay study, conducted in France and Canada, similarly concluded that non-daily dosing with PrEP was effective in protecting against HIV. As this wasn’t known for sure at the time the ADAPT study was getting underway, the ADAPT study participants were told that daily dosing was effective but that non-daily dosing was experimental. Because of this, the ADAPT study researchers feel that adherence to the non-daily regimens could have been compromised. Had the results of the Ipergay study been available at the time, the ADAPT researchers would have altered the dosing recommendations for the event-driven arm: Instead of recommending one dose before and one dose after sex, participants would have been instructed to take 2 tablets 2 to 24 hours before sex, another tablet the day after sex, and an additional tablet 2 days after sex. “That is important because the post-sex doses are the most likely to be missed,” Dr. Grant said.

According to Dr. Grant, the US Food and Drug Administration and Centers for Disease Control and Prevention still recommend daily dosing with PrEP because drug companies have not yet submitted the results of PrEP dosing studies for review. However, as providers have the leeway to prescribe medications as they see fit, the hope is that better communication between patients and providers will allow for non-daily PrEP dosing regimens that best fit the lifestyles of each user.


Could a New Approach Help Us to Overcome Resistance to HIV Treatment?

Clara chatted with Christian Setz, CEO of Immunologik, to find out how his company is developing a new HIV treatment that could overcome resistance to anti-retroviral drugs.

Over 36 million people are living with human immunodeficiency virus (HIV), which has led to many biotechs, including Abivax, working on better options for patients. Immunologik, a recent ‘Biotech of the Week’, is working on an alternative approach to HIV treatment that could help patients whose virus has become resistant to standard therapies, an issue that causes around 22,000 people to die each year, and stop their progression towards acquired immune deficiency syndrome (AIDS).

Unlike anti-retroviral drugs, which target viral proteins, Immunologik’s candidate, IML-106, “attacks specific cellular proteins that are crucial for the replication of HIV-1,” Setz explained. Deubiquitinating enzymes are the proteins in question and they are essential for viral propagation. Targeting them interferes with viral metabolism and replication and reduces the chances of the rapidly mutating virus developing resistance.

With the biotech taking such a different approach to HIV treatment, we wanted to find out where the idea had come from. The early research was carried out at the Erlangen Institute in Nuremberg. When inhibitors against deubiquitinating enzymes became available, the group was able to “study if these enzymes are really crucial for viral replication.” Once results confirmed their hypothesis, they began turning their approach into a new HIV treatment and founded the company in 2012.

The stages of the HIV life cycle, which provided opportunities for the development of anti-retroviral therapies.

Fast forward 6 years and the biotech has now completed its preclinical studies, during which it “identified the cellular target and established a model to study the influence of our drug ex vivo.” However, this did not come without its challenges as the biotech had to be inventive when selecting a suitable ex vivo model. Eventually, human tonsils were chosen as they contain all the relevant cells, “T cells, macrophages, dendritic cells, and so on,” for an HIV infection.

These were infected with HIV and Immunologik tested two regimens of its HIV treatment. AML-106 was either used permanently, throughout the 50-day study, or on the first and third day following infection. “In both cases, we detected a dose-dependent reduction in replication capacity,” Setz told us. In addition, at the drug’s effective doses, no toxic effects were observed.

This is just one of the challenges that Setz and his team have had to overcome since starting the company but, overall, he has enjoyed the experience “as you don’t always see something in the laboratory and then have the chance to develop it.” Looking ahead, he hopes that IML-106 will reduce the risk of resistance “by blocking cellular proteins, which have 1 million times lower risk of resistance,” boost long-term safety and improve patient compliance by making it available as a single pill.

HIV is able to enter the blood and find new cells to infect.

An HIV cure has been long sought after, so we wanted to get Setz’s opinion on some of the efforts being made in the field. However, he highlighted the difficulty in getting rid of the virus from the body: “The problem is that HIV is inserted into the genome… and your immune system cannot kill these cells as the virus is hidden… If some infected cells survive, millions of other cells can be infected.”

One example that Setz pointed out is the ‘shock and kill approach’, which combines latency-reversing agents that force the virus out of hiding with an immunotherapy that stimulates the immune system. However, he again highlighted that even this approach cannot guarantee that all HIV-infected cells will be killed, putting the patient at risk of remission.

As a result, Setz is unsure of when we may finally see a cure: “It is very challenging to develop such a therapy today. I cannot say if or when a cure will be possible but it is important to make this approach.” That means that, for now, we should be happy with better and safer treatments that help a greater proportion of those infected with HIV.

Author: Alex Dale


Intervention Mitigates New Cases of HIV Among Youth in the Criminal Justice System

A combination of risk-reducing interventions showed the ability to greatly reduce sexual risk-taking among high-risk teens in the juvenile justice system, according to a study published by Health Psychology. The study was conducted by the National Institute on Minority Health and Health Disparities (NIMHD) as part of the National Institutes of Health.

A trial called PHAT Life: Preventing HIV/AIDS Among Teens used role-playing, video games, and skill-building exercises to increase knowledge about HIV/AIDS, coping skills, and problem-solving techniques.

More than 1 million youths are involved the US juvenile justice system each year, according to the NIMHD. These individuals have a higher burden of mental illness, substance use disorder, and sexually transmitted infections (STsI) compared with teens of the general population. The study authors noted that there are limited evidence-based interventions that address this discrepancy.

Included in the clinical trial were 310 urban teens aged 13 to 17 years who were on probation in Cook County, Chicago. The authors noted that 66% of participants were male and 90% were African American.

Individuals were randomized to enroll in PHAT Life or an intensive health information program, both of which included 8 sessions given over 2 weeks at 4 detention-alternative afterschool programs, according to the study.

The researchers tracked the degree of condom use and the number of sexual partners in the 6 months before and after PHAT Life. Participants completed a baseline assessment before the intervention and again after 6 months.

Among those who reported the highest-risk sexual behavior at baseline, participants in PHAT Life were more than 4 times more likely to report a decrease in the number of sexual partners and an increase in consistent condom use compared with those in the other cohort, according to the study.

Among participants who reported having sex prior to age 12, those in the PHAT Life cohort had significantly fewer sexual partners after 6 months compared with control group participants.

“These findings reinforce the need for effective HIV/AIDS prevention strategies among vulnerable populations. Programs like this present opportunities to use effective methods, which result in continual benefits,” said Eliseo J. Pérez-Stable, MD, director of National Institute on Minority Health and Health Disparities.

The CDC reported that 1 in 5 new cases of HIV in the United States in 2015 were among youth aged 13 to 24. This population also accounts for half of all new STIs, which suggests they may also be at a high risk for HIV infection.

“Uniquely tailored interventions like PHAT Life that reduce adolescent risk behavior are essential to mitigate young offenders’ poor long-term trajectories. Limited resources require evidence-informed decisions about who can benefit the most from HIV-prevention efforts,” said lead researcher Geri Donenberg, PhD. “Our findings suggest that PHAT Life can reduce sexual risk among the highest-risk teens.”

Next, the researchers plan to identify how to spread PHAT Life resources to ensure the program is sustained in the juvenile justice system, according to the study.

Author: Laurie Toich

National Prevalence of HIV/ AIDS Reportedly Decreased

Addis Ababa February 22/2018 National prevalence of HIV and AIDS has reportedly decreased, according to a news survey out of the Central Statistics Agency (CSA).

A workshop on the 4th Ethiopian Demographic and Health Survey has kicked off  in Addis Ababa.

The survey covers the period from 2005 up to 2016, was conducted for a period of six months in nine regional states and two city administration on a sample survey on 30,133 respondents with age range between 15 and 49.

According to the survey which was presented by Yemane Getaneh, a senior research at the Ethiopian Institute of Public Health, the prevalence of HIV and AIDS was 1.4 percent in 2005 and has been reduced to 0.9 percent in 2016.

In 2005, the prevalence of the virus among women of the specified age was 1.9 percent and in 2016 it was reduced to 1.4.

The prevalence of the virus among men during the same period  was reduced from 0.9 percent to 0.6 percent in 2016.

Figures for the above mentioned period regarding men and women for the same period largely indicate the overall reduction in the prevalence of the disease.

The overall reduction in the prevalence of the disease is attributed to the expansion of service delivery in counseling and provision of ART facilities

HIV and AIDS prevalence in the urban centers of the country stands at 2.9 percent while figures for rural areas show 0.4 percent indicating seven fold prevalence in urban centers compared to the rural areas.

Resorting to multiple sexual partnerships, unusual sexual practices, low level of condom usage had exacerbated the prevalence of HIV and AIDS in the urban centers of the country.

The prevalence among widows and single persons was reportedly low.

Yemane added that Gambela State registered the highest level of prevalence with 4.8 percent.

Speaking on the occasion, CSO Executive Director Biratu Yigezu said that the findings of the research could be an input for researchers, academicals and development workers.

The survey was funded by the Ministry of Health, USAID and other development partners.


Seasons of Risk: Why Gay and Bisexual Men Quit Taking PrEP


Entering a relationship and reducing one’s number of sexual partners are the two most common reasons why gay and bisexual men choose to discontinue pre-exposure prophylaxis (PrEP), a longitudinal study has shown.

Researchers assessed PrEP use and discontinuation in 1,071 gay and bisexual men from across the country with an online survey repeated every six months. They followed the group for two years and found that 18% of men discontinued PrEP during this time span. A total of 31 study participants provided a written explanation justifying why they decided to quit taking PrEP.

The majority of men who quit PrEP explained that they no longer needed PrEP because they engaged in fewer sexual risk behaviors. These men reduced their risk of HIV infection in a variety of ways, including entering “monogamous” relationships, using condoms with HIV-positive partners, and refraining from receptive anal sex (bottoming). One participant, a 52-year-old white male, added that he decided to quit PrEP after becoming infected with an STI.

“I found out that I had contracted chlamydia,” he said. “I had been solely focused on just avoiding HIV, and I was reminded about the many other risks. So I decided to reduce my number of sexual partners and other risky behaviors.”

Approximately one-third of men quit taking PrEP due to cost and difficulty with insurance coverage. One participant, a 22-year-old Latino male, noted that his insurance would not pay for PrEP even though he had a prescription. Another participant, a 52-year-old white male, added that he quit PrEP to save his $50 copay.

The rest of the participants – about one-fifth of men – decided to quit PrEP due to either medication side effects or adherence difficulty. Even the anticipation of future side effects was sufficient to induce one participant, a 24-year-old Latino male, to quit PrEP.

“I didn’t want to needlessly have such a powerful medication circulating in my bloodstream,” he said.

Results were published in the journal AIDS and Behavior in February. Thomas Whitfield, a doctoral student at Hunter College and lead author of the study, emphasized that researchers shouldn’t focus too narrowly on getting more people on PrEP.

“We need to go further and assess why people who are still at-risk stop taking PrEP,” said Whitfield. “We found that about half of the individuals stopped taking PrEP because they no longer perceived themselves to be at risk. It is absolutely possible that their risk behavior has changed, and some participants even stated they would begin again if their risk behavior increased, which supports the theory that gay and bisexual men have seasons of risk.”

Still, Whitfield pointed out that being in a relationship doesn’t necessarily protect against HIV infection, which is shown by the high percentage of seroconversions that take place in people in relationships.

Survey results also revealed that unemployed gay and bisexual men are nearly five times more likely to discontinue PrEP.

“There are going to be people who are in between jobs at times and it’s important they still have access to this medication,” added Whitfield. “We need to find ways to fill these gaps so that people are able to continue protecting themselves in the most effective ways. Losing your job, or not being able to afford your copay, should not put you at higher risk for HIV.”

Although PrEP continues to gain in popularity, these findings highlight that barriers to PrEP continue beyond starting the medication. As always, talking to one’s physician about risk factors for HIV infection is an important part of making informed health decisions, including whether or not to discontinue PrEP.