Tag Archives: PrEP

A gay man’s experience of using PEP (Emergency HIV medication)

In recent months I experienced something I never thought I’d have to deal with when I faced the possibility that I might have contracted HIV.

I have been sexually responsible for my entire adult life and have always been heavily influenced by warnings of the past regarding HIV and AIDS, however all it takes is one moment of passion to let your guard down and you can find yourself in a situation similar to mine which resulted in me taking the HIV emergency medication known as PEP. The days leading up to my 28-day treatment were possibly some of the scariest of my life. Experiencing this drug first hand and the people I encountered along the way brought on a variety of conflicting emotions and an understanding of sexual health I never thought I’d have to comprehend.

Story via Metro

What is PEP?

Post-exposure prophylaxis (PEP) is a month-long course of medication which aims to prevent HIV infection after the virus has potentially entered a person’s body. The drug is used as an emergency measure on a person who may have been exposed to the virus, either through infection or sexual transmission. Although PEP is not 100% guaranteed to always work, the success rate is very high. It’s very important to make clear that PEP should not be considered an alternative to using condoms as prevention for contracting HIV. Using condoms is the most effective method of preventing HIV transmission as well as other sexually transmitted diseases.

The drug should also not be viewed as some form of a morning after pill either – PEP is a powerful drug and users like me risk side effects, not to mention the fact PEP isn’t taken on just one occasion like with morning after pills. I myself am lucky enough to have not experienced any side-effects of PEP, but the potential side-effects include prolonged headaches, diarrhoea, nausea and vomiting. If you experience any of these side effects you should not stop taking the medication as once stopped, PEP will not be effective. Contact your doctor to discuss any issues you may be encountering on the drug to get an informed decision on what to do next. Timing is also crucial when it comes to PEP. If the course of drugs has not started within 72 hours of potential infection, the drug will no longer be effective.

Why I took PEP

My reasoning for using this often misunderstood drug was down to one thing: paranoia. The partner I had engaged in potentially risky sexual activity with was someone I know to be practising safe sex, and although we weren’t in a relationship we were very open with one another about our fears of HIV risks in the gay community and HIV tests we had previously taken. Nonetheless, I couldn’t shake the feeling of ‘what if?’ after this particular sexual encounter.

After two days of endless overthinking, excessive Googling and sheer panic I decided to bite the bullet and visit my nearest sexual health clinic. On this particular evening the clinic stated upon my entrance that the session was for appointment-only patients – my heart sank as this was my final chance to obtain PEP before the 72 hour window had closed. However, after quietly asking if I could speak to a nurse in private I was humbled to learn how genuinely concerned and helpful the staff at the clinic were. I was ushered into a private room where I explained my situation and within five minutes the nurse had made space for me and I was on the waiting list.

After a short wait I was seen by the doctor who carefully took note of my situation, perfectly explained what PEP was and reassured me that coming to the clinic after potentially being exposed to HIV was the right thing to do. Hearing that my decision to take PEP was the right one was all I wanted to hear from a medical professional at that time. The doctor agreed with my sentiment that if you’re asking yourself ‘what if?’ then you should absolutely take no risks when it comes to HIV, because, ultimately, the only sexual health status you can be 100% sure of is your own. After taking a few blood samples and a quick HIV test, which is something I had done many times over the past few years, I was given my PEP medication.

The instructions were to take one tablet in the morning and two at night, taken exactly 12 hours apart at the same time every day. I was however only given a three day supply of the drug. The doctor informed me that this is normal practice and it’s up to the patient to pick up the remainder of their 28 day supply from their pharmacy. It is absolutely imperative that users of PEP plan ahead to make sure their supply of pills does not run out before retrieving the full medication.

The future

My experience with PEP, which I am currently still using until my 28 days are up, has been both fearful and insightful. In the short amount of time between considering starting a course of the drug and actually taking it I learned more about HIV and the treatments available than ever before. I also came to appreciate the services we have available in this country – if I wasn’t lucky enough to live in such a privileged part of the world who knows how I would be forced to handle a situation like this. Life after PEP will most likely enhance my sexual health paranoia, however I believe that being overly careful is always better than being slack when it comes to an issue such as this. Although I’m confident my treatment will be successful, I am currently still in my PEP bubble which involves a daily routine of taking pills with an alarm reminder at either end of my days. In the end, whether I actually needed the drug or not in the first place, it was most definitely worth it.

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We have the ability to end HIV in our lifetime!

Image by NIAID (CC BY 2.0)

London’s largest sexual health clinic, Dean Street is on track to record a huge drop in new HIV cases for a second successive year. In light of this, Dean Street has set itself a target of zero new infections after  witnessing a two-thirds fall in the number of new diagnoses since 2015.

So what’s happened? – PrEP has happened.  PrEP is a HIV prevention, once a day pill which you take regularly, or semi regular (depending on your circumstances).  For more information on PrEP please visit Prepster or The Terrence Higgins Trust

The reduction in new HIV diagnosis attributed to intensive testing of high-risk gay men, quick access to antiretroviral therapy and trials of PrEP which will be offered free on the NHS to 10,000 people from next month.

Dean Street diagnosed 136 people with HIV between January and July, putting it on course for a total of 233 by the end of the year.  If achieved, this would be the second successive fall in excess of 40 per cent, down from 679 in 2015 and 393 last year, when clinicians first raised the possibility of defeating HIV.

Dean Street’s figures are notable as it is also the largest HIV clinic in Europe and typically accounts for one in nine of all new cases in the UK.

Lead clinician Dr Alan McOwan said the latest figures were “great but not good enough” and told the Standard: “It’s a very exciting time. Everyone is so motivated to make this work. In 2015 we were diagnosing about 60 to 70 people positive a month. It dropped dramatically last year, and it’s still dropping. Over the last few months it’s between 15 to 20 people a month.”

Public Health England figures show that the total number of HIV diagnoses in London has fallen steadily from more than 3,000 in 2006 to 2,603 in 2015. It has risen within the highest-risk group of “men who have sex with men”, who now account for more than half the cases. One in seven gay and bisexual men in the capital has HIV.

Figures published earlier this summer for London’s five busiest clinics, including Dean Street and Mortimer Market, also in Soho, showed a 32 per cent fall in new HIV cases, from 880 to 595, in the year to last September.

Dr McOwan said the initial fall in infections diagnosed at Dean Street since 2015 had been concentrated among “very well-informed, assertive people” who bought PrEP online and followed medical advice.

The clinic’s Plan Zero initiative, unveiled this week, will provide tailored advice online to “harder to reach” gay and bisexual men on how to reduce the risk of contracting HIV, and preventing onward transmission. “Shockingly, there are still groups of people who have very, very little awareness of even the basics of HIV,” Dr McOwan said. Participants are asked to answer five questions about their lifestyle, adapting the answers depending on whether they are HIV positive or negative, have sex with multiple partners, use condoms, or take PrEP.

“We finally have the tools to end HIV,” Dr McOwan said. “Plan Zero brings them together into one package. We will beat HIV if we all act together.”

Dean Street, part of the Chelsea and Westminster Hospital NHS trust, will be among the first London clinics to offer PrEP before it becomes available country-wide by next April.

The drug, previously available to about 1,000 gay men via the Proud clinical trial, cuts the risk of contracting HIV from unprotected sex by about 86 per cent.

NHS England decided to make it available under a £10 million three-year trial after being told by the Court of Appeal last year that funding PrEP fell within the health service’s remit. The trial will be the biggest of its kind in the world.

It is not yet known how Leicester & Leicestershire will be involved in the trial.

The introduction of anti-retroviral therapy two decades ago was credited with transforming HIV from a fatal infection into a chronic manageable condition. However, there were 594 deaths of people with HIV in the UK last year.

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Scotland first in UK to approve anti-HIV drug

Today the Scottish Medicines Consortium announced that PrEP is now approved for prescription on the NHS in Scotland, making it the first of the UK countries to make PrEP available on the NHS.

(Story via HIVScotland)

Availability and prescribing details are currently being confirmed by health boards but we understand patients should be able to access NHS funded PrEP within the next month in Scotland.

HIV Scotland believes this is a fantastic outcome towards reducing HIV transmissions, and shows what progress can be made when professionals and the community are able to join together to learn from each other and find solutions. Hundreds of community members across Scotland got in touch with us and other charities, attending information events, contributing to consultations and decision making groups, appealing to clinics. This outcome was only made possible by these collaborations.

We are promoting a live Twitter videocast tonight (10 April) between 9PM and 10PM – where a panel from HIV Scotland, Terrence Higgins Trust Scotland, and Waverley Care will answer initial questions from the community.

HIV Scotland will continue to offer our support to decision makers and service providers to make sure that PrEP and related HIV prevention services are ready.

We are making up-to-date information available on our website, and we will host an additional live twitter videocast for community to hear from a panel of doctors, nurses and other experts in April or May 2017 (specific date to be decided so stay tuned) by which time we expect implementation details to have been decided.

From our conversations with community over the past six months it is clear to us that there is a growing demand for access to PrEP in Scotland, and also a large amount of uncertaintly. If you consider that almost everyone knows fundamentally what a condom is and how it works, but few people as yet understand the basics of PrEP. This has implications not only for the people who are interested in taking or already use PrEP, but also for their sexual partners. In addition to this we need to ensure that service providers are confident in their own knowledge.

To address this we have partnered with the University of Edinburgh to develop very basic PrEP information resources, using the HIV Literacy work developed by Dr Ingrid Young, and will continue to support work through the SHBBV Executive Leads, NHS Education Scotland, and SHIVAG to make PrEP information available to professionals.

In the meantime if you have any questions at all please get in touch with Kelsey Smith.

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(Scotland): Decision due on ‘game-changer’ Prep HIV drug

Medical chiefs in Scotland are due to announce whether a “game-changing” drug which can prevent HIV infection will be made available on the NHS.

(Story via BBC)

Research suggests a daily dose of a drug known as Prep can protect people at risk of contracting the virus.

HIV Scotland said it was “very hopeful” the Scottish Medicines Consortium (SMC) would approve the medication.

It means Scotland would become the first place in the UK to make it available on the NHS.

Campaigners estimate that up to 1,900 people north of the border could benefit from the drug, which has the brand name Truvada.

The anti-retroviral drug is currently licensed for use in Scotland, where it is used by people already diagnosed with HIV.

However, the SMC’s decision relates to its use on a preventative basis by people who do not have the virus.

What does Prep do?

Pre-exposure prophylaxis (or Prep for short) is a small, blue pill.

The pill works by protecting cells in the body and disabling the virus to stop it multiplying – should it enter the body.

Taking it once a day has been found to reduce the risk of HIV infection by 86%.

It is currently used in the US, Canada, Australia and France to help protect gay men at the highest risk of contracting HIV.


There is a growing demand for the treatment in Scotland, according to HIV Scotland’s chief executive George Valiotis.

He estimates that “a couple of dozen” Scots are using variants of the drug after buying generic versions online.

The Scottish government wrote to Gilead, the manufacturer of Truvada, to urge them to make an application to the SMC last year.

It followed a series of legal battles in England over whether the NHS or local authorities should pay for the medication.

The Court of Appeal eventually ruled that NHS England had the power to fund the drug,

The decision did not mean that NHS England had to fund Prep but in December it announced plans for a large scale clinical trial of the drug, expected to involve 10,000 participants over three years.


‘Why I buy Prep online’

Gordon Garioch is one of around “a couple of dozen” people in Scotland thought to be taking Prep regularly.

He told BBC Radio Scotland’s Good Morning Scotland that he was initially prescribed the drug by a private clinic but it was too expensive.

He now spends around £50 a month on a generic form of the drug he purchases from an online pharmacy.

“It gives me reassurance,” he said. “I’ve always been careful.

“My friends have always been careful but for some reason they became positive. So I take this extra reassurance for me to prevent myself becoming positive.”

Asked what the benefits of the decision would be, he replied: “To me personally, obviously it would be the cost.

“But it’s a generation thing as well, to prevent HIV for future generations for people who are not as lucky as myself who can pay for it.”


Speaking on BBC Radio 4’s Today programme, Mr Valiotis, of HIV Scotland, said: “Prep makes good sense. We know that it works. We know that it stops people from getting HIV, and we know that it’s cost-effective.

“And because it’s cost-effective, what that means is that it makes more money available in the long-term on the NHS to treat lots of other things as well.”

Asked if he thought the SMC would approve the drug, he said: “I’m feeling pretty hopeful because the cost-effectiveness is clear, as is the clinical-effectiveness.

“We know this works. I would be surprised if it’s a no but it’s too hard to guess.”

HIV Scotland believes the use of Prep has played a part in reducing the number of HIV infections in Scotland.

The latest figures from Health Protection Scotland show 285 new cases of HIV were reported in 2016, down from an annual average of 359 over the last five years.

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New HIV prevention treatment can only work if perception improves – DMU experts

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A De Montfort University Leicester (DMU) professor and his PhD student have urged the medical profession and media to change the way in which a new HIV prevention treatment is represented if they want it to work.

Professor Rusi Jaspal carried out the first study to find out what men in the UK felt about PrEP – a new HIV prevention treatment said to reduce the risk of infection by 86% if taken daily.

He found that men who would benefit most from taking PrEP were being put off by its association with “high risk” people – as they did not want to place themselves in this category.

Professor Rusi Jaspal

Professor Rusi Jaspal

The article, published in Cogent Medicine, illustrates how misconceptions and fear of social stigma is hindering the fight against HIV/AIDS in the UK.

Prof Jaspal called on the medical profession and media to do more to improve perceptions and understandings of the potentially life-saving drug.

He said: “The bottom line is that PrEP works. If we are serious about wanting to prevent HIV infections, we need to roll out PrEP to those at highest risk of infection. This needs to be coupled with awareness-raising and stigma reduction. Many people misunderstand PrEP and believe that it’s only for  ‘promiscuous people’. This is misleading. Our research clearly shows that the biggest barrier to accessing PrEP is the stigma that often underpins it. We must challenge this.”

Men who have sex with men (MSM) are the group most affected by HIV in the UK. Around 45,000 MSM were living with HIV in the UK in 2014.

Pre-exposure prophylaxis (PrEP) is a novel HIV prevention option which has been available in America since 2012 and is in clinical trials in the UK. Prof Jaspal’s study involved in-depth qualitative individual and focus group interviews with MSM, comprising HIV-positive and HIV-negative individuals. The interviewees were asked about their views on PrEP in terms of their knowledge of the treatment and their feelings towards it.

They found that many were unconvinced by its efficacy as a method of protection. Some said they would not use condoms consistently while taking PrEP, which is recommended given that PrEP does not provide protection against other sexually transmitted infections (STIs).

Many people said they would feel stigmatised at the idea of being “high risk” by taking PrEP. It also highlighted a general lack of understanding about what constituted high-risk activities.

One HIV-negative participant said he thought PrEP would not benefit him because he did not perceive himself as “high-risk”, despite reporting multiple condomless sexual encounters, because he was not “Someone who is out at chemsex parties every weekend.”

Other participants made reference to the stigmatising label “Truvada Whore”, namely someone who engages in frequent reckless sexual behaviour because they believe they are made safer by taking PrEP. The authors said this reflected negative press reporting of the treatment, leading ultimately to ‘individuals perceiving the treatment as a potentially viable HIV prevention tool at a population level, but unsuitable for themselves personally.

The study’s co-author Christos Daramilas, a PhD researcher in sexual health psychology said: “PrEP would benefit various groups in society, not just MSM. PrEP could also facilitate what we call ‘serodiscordant relationships’, that is, relationships between people who do not have the same HIV status, because it provides both physical and psychological protection.”

The authors also argued that perceptions of PrEP would only change if healthcare professionals and the media altered their approach to representing the treatment. They said it would be more effective to present PrEP as a “further level of protection” against HIV, in addition to condoms and other prevention strategies.

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Call to fund #PrEP on NHS

prepworks

Calls are being made to get a drug that prevents HIV infection in people at high risk of the virus available on the NHS in Scotland.  It follows legal battles in England over whether the NHS or local authorities should pay for it.

Story via BBC Scotland

The drug, described as a “game-changer” by experts, is used for a process known as pre-exposure prophylaxis, or Prep.  The Scottish government wants its makers to apply for it to be assessed for use in Scotland.

In England, the NHS had previously said that local authorities should provide Prep because they are responsible for preventative health but the Court of Appeal insisted this fell within the remit of the NHS.

An estimated 14,000 people would be eligible for the drug – which is called Truvada.

Unlike in England, the Scottish Medicines Consortium assesses all drugs used in the NHS in Scotland so campaigners hope its transition for use in Scotland will be smoother.

BBC Radio Scotland’s Good Morning Scotland programme has learned that the Scottish government has written to Gilead, the manufacturers of the drug, to urge them to make an application.

The SMC said it was anticipating a submission from Gilead so it could make a formal judgement on whether to approve its usage.  The SMC will also make a decision on the cost-effectiveness of the drug, which costs about £450 a month to buy privately.

What does Prep do?

Pre-exposure prophylaxis (or Prep for short) is a small, blue pill.

The pill works by protecting cells in the body and disabling the virus to stop it multiplying – should it enter the body.

Taking it once a day has been shown to reduce the risk of HIV infection by 86%.

It is currently used in the US, Canada, Australia and France to help protect gay men at the highest risk of contracting HIV.

George Valiotis, the chief executive of the charity HIV Scotland, said: “People who take Prep – they don’t get HIV.”

HIV diagnoses in Scotland have continued at an average rate of 359 per year for the past five years, according to Health Protection Scotland.

Across the UK as a whole 100,000 people are believed to be living with virus.

“We have seen no change in our HIV transmission rates over the last 10 years. They haven’t really gone down at all,” he said.

“It’s been an average in Scotland of one person a day for the last 10 years, so we know we need to do something else, and Prep is that something else.”

A spokesman for Gilead said it had been in discussions with the Scottish Medicines Consortium.

He said: “We will make our submission in the coming weeks, in accordance with the required SMC timelines and expect the review to follow normal timelines as well.”

A spokesman for the SMC said it was aware of a report which has been compiled by the charity HIV Scotland, which sought to highlight the benefits of the drug and had support from health professionals.

He said: “The SMC is awaiting a submission from the company for Truvada for use as Pre-Exposure Prophylaxis (PreP) in HIV infection.

“We are aware of the report by the HIV PreP Short Life Working Group. While this report itself does not form part of the submission and therefore cannot be considered by the committee, we expect and encourage patient groups to submit evidence as part of the review for this medicine.

“This will be considered by our committee alongside the information submitted by the company.”

A spokesman for the Scottish government said: “The Scottish government has written to its manufacturer of Truvada to request they make a submission to the Scottish Medicines Consortium, at a fair price, so its routine use in Scotland can be considered as quickly as possible.

“Prevention of HIV infection remains a priority for the Scottish government and there is absolutely no room for complacency on such communicable diseases.”

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Norway provides #PrEP for free! Well done Norway!

ms-files

Yes, you did read that headline correct! – While our NHS is arguing why it shouldn’t be providing, cost effective, life saving and game changing anti-HIV medicine, Norway has become the first country in the world to offer at-risk citizens the pre-exposure prophylaxis (PrEP) drug at no cost, as part of its National Health Service.

Norway joins Canada, France, South Africa, and the United States in offering the HIV prevention drug, although Norway is currently the only country to distribute it for free.

Multiple studies have found PrEP to be highly effective in preventing the transmission of HIV. One study found people could reduce their infection risk by 92-99% depending on how many pills they take per week.

Norway’s government lobbied for the last two years to bring PrEP to those who face an increased risk of contracting HIV — gay and bisexual men and trans women.

“PrEP will contribute to reducing the rate of new infections in the gay community, as gay men are facing a risk of infection much higher than the general population,” Leif-Ove Hansen, the president of HIV Norway, said in a statement, New Now Next reports.

An estimated 2.1 million people around the world were newly infected with HIV in 2015, bringing the current total to approximately 36.7 million people.

While many of the HIV management drugs now allow people living with the condition to enjoy a similar quality of life to healthy populations, prevention is still the cheaper and safer option.

In other countries where PrEP is available, prices for users can range. In the US, many insurance companies cover most of the cost so that patients are only responsible for the co-pay.  In France, the drug is reimbursable once patients submit a receipt.

But Norway is the first to offer the drug to patients without any cost whatsoever.

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