Tag Archives: stigma

A patient’s journey through their hepatitis C treatment and care.

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This article is a guest post by David Rowlands, see toward the bottom for contact details.

Insight 7: “Motivation is key”
(Treatment Week 4 of 12)

When I first started treatment I had a number of blood tests, one measuring the “viral load” which showed the amount of hepatitis C present within my blood. At this time my viral load was showing to be 44,270,000, for me this was a very high result and I felt anxious about my next blood tests which were 2 weeks into my treatment. I have now received these blood results and I have had a huge reduction in my viral load. This is fantastic news and now is showing at 452.

Feeling Anxious

I felt anxious about having my blood tests, this is totally normal. I find speaking to a close friend or family before or after getting results does help and you as you are able to air any concerns you maybe having.

Feeling motivated

Receiving these results has motivated me. I am taking the correct prescribed medication at the correct times and these results are showing this. These results are helping me to stay on track of my treatment.

Not every patents viral load drops so quickly. I would contact you healthcare team or AbbVie Care, if you do have any treatment concerns. They may be able to help and support you to make the changes needed, I am sure you will want to achieve the best outcomes from your hepatitis C therapy and making small amends to when or how you take your treatment could be an option.

What motivates me to stay on track?

  • I have high chance of curing my hepatitis C.
  • I feel better now, than in a long time.
  • I might stop feeling so exhausted after clearing my hepatitis C.
    Already I have got rid of the brain fog I was experiencing.
  • I can improve my liver health.
  • I can drink alcohol again when I have completed treatment.
  • I won’t need to worry about passing hepatitis C onto someone else.
  • I won’t have to worry about how to tell people I have hepatitis C anymore.
  • I can live free from fear of serious liver disease or liver cancer in the future.

Motivational messages to help you stay on track

The AbbVie Care patient support programme offers motivational messages throughout your treatment. The programme tailors the support a patients gets using patient activation measure (PAM) score. This score (low, medium and high) will determine the number of messages you receive through your treatment.

Here are some examples you may receive

Week 2 (High and medium PAM score)
“Hello from AbbVie Care. Well done on getting through your first week and welcome to AbbVie Care. We are here to support you if you need us in addition to your specialist team. Call us on 0800 1488322”

Week 3 (Low PAM score)
”Hello from AbbVie Care. Try to keep a positive frame of mind. Think about something that makes you smile or link up with someone who can support you if you are struggling”

Week 4 (Low PAM score)
“Hello from AbbVie Care. Well done on getting to 4 weeks, you’re doing really well. Only 8 weeks left to go till you complete treatment. Remember every single dose counts for the best chance of a good result”

Try something new

It’s the last thing you want to be doing when you don’t feel one hundred percent, but I have found trying something new has given me more energy. Running, walking, and cycling has given me fresh air, even if it has been for a few minutes.

I feel it has improved my moods, stress, and physical health, but also made me sleep better in the evenings. If you don’t feel like you have so much energy, read a new book or learn a news skill, use this treatment experience to do something new, explore something you have always wanted to.

New week…..

My insight will be focusing on “side-effects” I believe this is an important topic to discuss to look at what minimal side-effects I am experiencing and how I addressing these.

About the author:

David Rowlands is the director of Design-Redefined.co.uk, delivering effective healthcare communications to enable people with HIV and/or hepatitis C (HCV) to become better engaged with their treatment and care.

Drawing on his established networks and collaboration with partners, David is able to bring healthcare together, by engaging patients & organisations, healthcare providers, physicians, stakeholders & policy makers.

Contact David via Email, Twitter, or visit his website.

Thanks for reading, let us know what you think in the comments below, or you can find us on Facebook or follow us on Twitter for more!

TWB  FBB

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Russian TV presenter hopes revealing his HIV status will promote tolerance

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Russia is struggling with an HIV epidemic, but you could be excused for thinking that the problem did not exist at all. Sex education and HIV and Aids prevention are not topics for schools, and public service advertising and media coverage is rare. Even many healthcare professionals prefer to avoid the topic.

But while Charlie Sheen-style HIV revelations by celebrities are also unheard of in the country, this week a television presenter, Pavel Lobkov, declared that he was HIV-positive during a live broadcast on TV.

Story via
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Lobkov and activists said they hoped that his statement, broadcast by the small independent channel TV Rain, would jump-start public discussion about the issue, as the number of new HIV cases sky-rocketed.

“It’s not the done thing to talk for real [about HIV], and in Russia it’s a real problem,” Lobkov said. “Maybe after this shock there will be a discussion about what these medicines are, and are there enough doctors specialising in this, is their knowledge adequate to treat HIV infections?”

Lobkov said during the broadcast that he had discovered he had HIV in 2003 while working for the NTV channel. Immediately after he was diagnosed his doctor refused to treat him, telling him he was being excluded from the NTV insurance programme.

Since then Lobkov had had trouble finding treatment for mundane conditions. He said it took him about a year to find a dentist willing to perform an implant procedure after several told him his HIV status would cause complications, despite research showing such concerns to be baseless.

According to Lena Groznova, an activist at the HIV-prevention group Andrey Rylkov Foundation, such ignorance about HIV is common even among healthcare workers, due to the lack of public service information. She said public perception of HIV was outdated and associated the condition with a “quick death”. Widespread disapproval of gay relationships and drug use also played a role.

“Few people from the general population know that a therapy exists that allows people to support their [HIV] status. Even among specialists we run into, police, doctors, have a stigma and fear of HIV people that doesn’t match the threat, which is none,” Groznova said.

Lobkov said several doctors had contacted him in recent days to tell him about HIV-positive patients who did not seek treatment or register for state-provided medicine for fear that their infected status would have a bad impact on their professional and personal lives.

Russia is one of the few countries where the number of HIV cases is rapidly growing. According to the federal Aids centre, at least 986,657 Russians were officially registered as HIV-positive as of 1 November, and the number of new cases had risen by 12% this year.

A consumer oversight agency official in St Petersburg said last month that Russia faced an HIV epidemic. But while the government has increased spending to treat Aids, state policy on fighting HIV has focused on abstinence from sex and drugs, rather than harm reduction programmes.

A message from the Ryazan city government for World Aids Day on Tuesday declared that “even one single sexual contact, even one dose of drugs, can cause HIV infection”.

The state-run Russian Strategic Research Institute said in a report, in October, that rather than adopting western methods, Russia needed to develop an HIV and Aids prevention programme to “reflect real national interests”.

Opioid substitution treatment with substances such as methadone, which aims to help users gradually lose their addiction and is frequently used in the west, is illegal. The Andrey Rylkov Foundation is one of the few groups that hands out clean needles and condoms to at-risk groups such as drug users.

Although the Moscow city Aids prevention centre recently began an advertising campaign around the slogan “Friendship doesn’t transmit HIV”, it was not enough, Groznova said.

Lobkov said: “The government can fight social phobias, it should have information campaigns on tolerance, acceptance. If there will be tolerance, people will go do [HIV] tests, then they will go [to] therapy, and the epidemic will start to die.”

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A Child, growing up with HIV: Clinics with codenames and secrets from schoolfriends

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For many years Daniel was told that he had bugs in his blood and needed tablets and regular blood tests to control them. At 11, his HIV diagnosis was revealed – and he was told to keep it a secret
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One of Danny Germain’s most treasured memories is being 5 years old, cuddled up on the sofa with his mother Millie, watching a documentary about polar bears.  Millie Germain, a New Yorker of Puerto Rican heritage, passed away the next day.  She was HIV+ and died of AIDS-related complications.

Millie had met Danny’s father, Richard, when he was working in New York.  He fell in love with this bright, vibrant Latino girl, they were married, and soon after she found she was pregnant with their much-wanted first child.

It was during routine pregnancy blood tests that an anomaly was found and further investigations revealed that Millie had HIV. Richard tested negative. She had probably contracted it from a previous long-term boyfriend. It was 1992 and the medical world was still learning about the virus.

Millie and Danny as a child

Millie and Danny as a child

When Daniel was born there was a 1 in 6 chance he would also be HIV+ but his parents would not know that he had also contracted the virus until he was 18 months old. Millie, wracked with guilt for passing on the virus to her son, was becoming progressively weaker.  By this time the family were living back in Richard’s home town in rural Suffolk and the family struggled to manage the care needs of a feisty toddler with his mother’s deteriorating health – all the while keeping the truth behind Millie’s frequent hospitalisations a secret.

During the early nineties, the stigma around HIV/AIDS was as strong as ever, it was seen as a disease of promiscuity, drug use and the gay community. After Millie passed away Richard had to protect his little boy and carry the burden of keeping his diagnosis a secret.  Even the hospital clinic had a code name so that it could not be identified, and the doctors and nurses who chose to work there were considered exceptionally brave by their colleagues.

For many years Richard explained to Daniel that he had bugs in his blood and needed tablets and regular blood tests to control them. At the age of 11, he was told that these ‘bugs’ were in fact the HIV virus.  He was also told not to tell anyone.

In the intervening years Richard met Marion, who became a supportive stepmother to Danny.  Richard and Marion had two daughters, Danny’s sisters, and with the help of medical advances Danny’s daily cocktail of drugs reduced the virus in his bloodstream to undetectable levels.

From the moment he learned that he was HIV+, Danny wanted to tell others – but he knew he had to keep his status secret to protect himself from the prejudice that surrounded the disease.  For him the burden was not the disease itself – he was leading a full life, going to school, skiing, scuba diving, and blood tests and daily medication seemed minor inconveniences in the grand scheme of things – but the stigma attached to it.

On graduating from university, Danny began a career as a freelance photographer and film maker, and had become frustrated at living with the secret any longer. He knew from all those clinics he attended as a child that there were lots of other young people like him who were also carrying with them a similar burden of secrecy.

And so, on the anniversary of his mother’s death, he publicly announced his HIV status in a film project titled 27.11.15. He visited aunts and cousins, university friends and extended family members and told them his secret in person. With his father and Marion at his side, he told his teenage sisters. Finally, he went back to speak to the doctors and nurses who had first treated him as a child, and the medical staff who had cared for his mother.

What is obvious in Danny’s story is the love, hope and indeed the normality possible after a diagnosis of HIV. Put simply, it is simply unacceptable that surrounding prejudices are now more of an issue to sufferers than the condition itself. In 2015, we have a responsibility to address this shocking truth.

Danny and Marion

Danny and Marion

 

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The fight goes on against HIV

HIV Stigma

The progress made in the treatment of HIV infection in recent years cannot be overstated. What was once a death sentence is now treatable. A HIV patient beginning treatment today can hope to have to a normal life expectancy, albeit one dependent on continuous medical treatment. Those with undetectable viral loads have almost no chance of transmitting infection, nor does infection prevent people going on to have children.

Story via The Pharmaceutical Journal
@PJOnline_News

You would find it hard to believe therefore that this month the headline ‘Hollywood HIV panic’ ran in the UK’s biggest circulation tabloid The Sun in reference to an actor being diagnosed with HIV. Charlie Sheen announced soon after that he has been living with HIV for the past four years. The worst part about the illness, said Sheen, is the shame that comes with it. People do not take action or get help because of the stigma, he added.

In the West, you could have been forgiven for thinking we had grown to accept people living with HIV. Many individuals who have challenged the early misconceptions about HIV/AIDS and many more people who have learnt to embrace their status and campaign for greater public acceptance have done much to reduce the stigma of disease and educate the public about HIV infection.

Yet stigmatisation of people living with HIV remains a major problem worldwide. The World Health Organization (WHO) cites fear of stigma and discrimination as the main reason why people are reluctant to get tested, disclose their HIV status and take antiretroviral drugs.

Some national governments still deny the existence of HIV, dismissing it as a disease of the West confined to those who are sexually deviant. It is in these countries where those living with the virus will continue to die unnecessarily.

Stigma creates a culture of fear, and this fear could lead to people refusing to get tested, begin treatment and stop the virus from spreading further.

Nonetheless, in the past few years great progress has been made in the battle against the HIV epidemic. Previously, diagnosing HIV infection was cumbersome and slow. The standard medical practice was to hold off initiating treatment until a patient’s CD4 cell count dropped to a level where they were at higher risk of developing AIDS. Much attention is now directed at identifying those at risk and swiftly diagnosing those infected with the virus, and there is growing evidence that those diagnosed should be started on treatment as soon as possible. For example, the START trial, carried out in 35 countries, was stopped over a year early after interim results showed that the health benefits of starting antiretroviral drugs immediately, regardless of CD4 cell counts, outweighed the potential risk to health. The WHO recommends that anyone infected with HIV should begin antiretroviral treatment as soon as possible after diagnosis.

The use of treatment as prevention (TasP) — a HIV prevention method that uses antiretroviral treatment (ART) to decrease the risk of HIV transmission — continues to grow. In 2011, the landmark study HPTN 052 showed early initiation of antiretroviral (ARV) treatment in those with a CD4+ cell count between 350 and 550 for the HIV-infected partner in a serodiscordant couple reduced HIV transmission to the HIV-negative partner by 96%.

Moreover, this year the WHO recommended that pre-exposure prophylaxis (PreP) — giving ARVs to protect people from HIV before potential exposure — should be offered to all those who are at substantial risk of HIV infection (previously, it was recommended that only certain affected populations, such as sex workers, men who have sex with men (MSM) and people who inject drugs, received PreP).

Earlier in 2015, the world exceeded the AIDS targets of Millennium Development Goal 6 — halting and reversing the spread of HIV, with new HIV infections falling by 35% and AIDS-related deaths decreasing by 41%.

Meanwhile, new ARTs continue to enter the market and new formulations are being researched.

All of these indicate that the fight against HIV and AIDS is heading in the right direction in terms of drug treatment and research. However, if further progress is to be made, this will depend on identifying everyone who has the virus, which continues to be a challenge — and stigma plays a large part in this.

So although we have come a long way, there is still more to do, particularly in terms of educating people and changing their attitudes towards HIV, if we are to ever see the last of this virus.

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First HIV Radio Show Set To Launch In Britain To ‘Challenge Stigma’

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It’s estimated that more than 100,000 people are living with HIV in the UK, yet we still shy away from talking about it.  That’s about to change thanks to a new radio show about HIV, which is determined to end stigma.

The show, titled HIV Happy Hour, will run weekly on Radio Reverb, a Brighton-based local station, from 1 October.  The magazine-style programme is the brainchild of author and HIV activist Paul Thorn, who was diagnosed with HIV in 1990.

“The main aim of the show is to challenge some of the negative thinking that many people living with HIV hold about themselves.  There is no reason why anyone living with HIV should be ashamed or feel bad about having the virus. I want this show to be one of the tools to help change that.”

Thorn describes the show as “a programme by and for people with HIV”.

The light-hearted name HIV Happy Hour aims to show that living with HIV doesn’t have to be all doom and gloom – people can be happy living with HIV.

The 60-minute programme will be a lifestyle-based show covering a wide range of topics.  It will be cover health, wealth, happiness, relationships, and lots of tips from experts for getting on with and making the most of the second chance at life afforded to people living with the virus by treatment”.

“There will be some more serious subjects covered also, for example hepatitis co-infection, tuberculosis, and hopefully some surprise celebrity guests also.  More important is that the show is a platform for people living with the virus, they will be playing a major role in output and direction of the show.

A pilot episode of HIV Happy Hour included an interview with the head of a care facility for people with HIV and tips for HIV-positive listeners to set up their own business.  Thorn hopes this wide range of topics will help ‘normalise’ HIV, so people living with it feel more able to speak about their experiences and seek the help they need.

HIV Happy Hour will air on Radio Reverb (97.2FM) every Thursday at 7pm from 1 October.

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Would you buy a magazine laced with HIV-positive blood?

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Story via the National Post

To make a big point, a small Austrian men’s magazine printed an entire edition using ink laced with HIV-positive blood. The idea, said Julian Wiehl, co-publisher of The Vangardist — a “progressive” magazine aimed at young, urban men — was to make a statement about the stigma still associated with the virus that no one could ignore.

I think you’ll agree they succeeded, wildly.

“If you see the magazine . . . the first question that comes to your mind is, ‘Would I touch it? Would I take it in my hands?’ ” Wiehl said in an interview. “And the second question is, ‘Why would I touch it?’ or ‘Why wouldn’t I touch it?’ ”

From a health and safety perspective, picking up the magazine is not a problem. As we’ve known for many years, the human immunodeficiency virus quickly dies outside the body and can only be transmitted by direct contact with body fluids, mainly blood and semen. To be doubly sure, and to kill any other pathogens, Vangardist autoclaved the HIV-positive blood obtained from three donors before mixing it with the red ink used to print the magazine. The ink used in all 3,000 copies of the printed edition is 1 part blood to 28 parts ink, Wiehl said. There also is some blue ink to highlight its “Heroes of HIV” theme.

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The magazine comes in a sealed wrapper, forcing the reader to “break the seal to break the stigma,” Wiehl said. To avoid violating laws that govern transport of blood or blood products across borders, the edition can be ordered only online.

Normally, the five-year-old Vangardist puts out 10 digital issues a year aimed, Wiehl said, at young, progressive urban men who, he said, don’t fit gay or straight stereotypes. It covers health, fashion and sexuality, among other topics.

But with the Life Ball, one of the world’s biggest anti-AIDS charity events, scheduled for May in Vienna, headquarters of the Vangardist, the magazine wanted to make a statement. It came up with a special, printed issue devoted to “Heroes of HIV,” and its Geneva-based ad agency Saatchi and Saatchi suggested using HIV-positive blood in the printing process.

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Three HIV-positive people — the heroes of “HIV heroes” — donated their blood for the magazine: A 47-year-old mother, a gay 26-year-old man and a 32-year-old straight man. (It didn’t take much; all the ink for the edition weighed only 2.5 kilos, or about 5.5 pounds, Wiehl said.) Two of the three donors, he pointed out, don’t fit the stereotype we immediately associate with HIV. That was another point the magazine wanted to make.

“The stigma of HIV, although we have all these medical advances, is still a hard topic,” he said.

Vangardist also wants the public to note that infections are on the rise in parts of the world, and that 30 years after the epidemic began it is still not under control.

“By fighting the stigma, we also want to fight new infections,”Wiehl said.

AIDS activists have cheered the magazine since it was announced a few days ago, Wiehl said, and sales will start May 7. Media coverage is slowly spreading across the globe.

The next time you meet someone with HIV, Vangardist hopes, you’ll already have examined your feelings about him or her, the virus and the ongoing spread of a disease that infects 35 million people around the globe.

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Introducing the Shooting Challenge!

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Throwing out the trash – by Tom Robson

World AIDS Day, observed on 1 December every year, is dedicated to raising awareness of the HIV pandemic caused by the spread of HIV infection.

Around 100,000 are currently living with HIV in the UK and globally an estimated 34 million people have HIV. More than 35 million people have died from the virus, making it one of the most destructive pandemics in history.

Today, stigma and discrimination remain a reality for many people living with HIV and this year, Leicestershire AIDS Support Services will showcase artistic works at an exhibition between 29th November and 17th December at Apex House Gallery, Leicester to remind the public and local government that HIV has not gone away. There is still a vital need to raise money, increase awareness, fight prejudice and improve education.  (More on this will be announced this week).

Part of the exhibition will focus on photography and participants in the shooting challenge are invited to exhibit their work.

Each Monday, we’ll set a theme and ask you submit a photo for inclusion, we’ll consider the photographs over the weekend and pick winner then announce it on the following Monday as we set the next weeks theme.

You don’t need an expensive camera or fancy equipment, we’re simply looking for the pictures you can produce so get your smartphone out and join in if you don’t have a camera!

THE BRIEF:

For our first Shooting Challenge let’s keep it easy, we want you to simply photograph anything, provided there’s a reason for it relating to HIV and what it means to you. It could be that of community, an image depicting HIV medicine, a red ribbon, fear or sigma you name it! Your photo could be thought-provoking or humorous, colour or monochrome, have a ‘message’ or just be a great shot that tells a story without any words.

THE EXAMPLE

Initially, our example photo is tongue in cheek, yet as you gaze closer into the image you begin to question why the person is sitting in the bin, why are used condoms on her and why is her face blurred? This is a statement about social stigma. That society rejects HIV positive people, not unlike the way people casually toss away used condoms. Does the unidentified face indicate a desire to remain hidden or is she shaking her head furiously saying ‘No – I’m sick of being treated like dirt’.

This is obviously a staged photo, with a ½ second exposure time in order to achieve a blur in the face of the character. This image was taken with a Canon 650D, f/22 (ISO100).

THE RULES:

  • Follow the brief
  • Send your best photos by 6PM on Friday 31st October 2014 with “Shooting Challenge” in the subject. We’ll announce the winner on Monday 3rd November as we set the theme for next week’s shooting challenge.
  • Email submissions to photography@lass.org.uk
  • Submissions must be your own work.
  • Photos must be taken after the challenge was published; so no existing shots please.
  • Explain briefly in your submission email the equipment, settings, technique used and the story behind the image/images.
  • We will of course credit you so if you have a website or twitter handle, let us know! – If you’re happy for us to use the images elsewhere on our site – do let us know!
  • Save your image as a JPG, and use the following naming convention FirstnameLastnameEasy.jpg
  • Anyone can enter, regardless of camera gear, or location!
  • The most important rule — HAVE FUN!