Simon Stevens, approve or resign.

With the NHS refusal to approve PrEP the CEO Mr. Simon Stevens has demonstrated just how out of touch with the public he is, along with a certain amount of arrogance by refusing to listen to MP calls for a u-turn on this disastrous decision. With National PrEP Action Day tomorrow July 1st Positive Moving On are calling on the chief executive to approve Truvada for use as PrEP or resign his position. Please use the wording below in an email to england.ce@nhs.net

—————————————————————————

EMAIL: england.ce@nhs.net

F.A.O. (email subject) CEO of NHS England Simon Stevens, approve or resign.

 

Dear Mr. Stevens.

 

I am writing to you regarding the recent decision by the NHS England not to approve a roll out of PrEP.

 The benefits of Truvada as a preventative treatment for HIV have been acknowledged by scientists around the world with the CDC sighting it as more than 90% successful, a success rate some treatments currently available on the NHS cannot boast. Already the U.S., France and now Australia have made PrEP available with little procrastination leading me to question why the NHS feel it necessary to wait for NICE to carry out a review?

 Further to this the proposed pilot scheme for PrEP is merely that, a proposed pilot which is not an adequate response to the development of a treatment that has the ability to end a pandemic that has spanned three decades, claimed the lives of millions and affected the lives of many more.

 As the CEO of the NHS the lack of compassion and humanity you have demonstrated regarding this matter is not befitting of the person we wish to be in charge of our health service with many people feeling you have failed the public in your duty of care. I call on you to approve PrEP as soon as logistically possible or resign from your position.

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“Stand behind organisations like Stop AIDS”

By Andrew Goyvaerts

@PosMovingOnCIC

 

The race commenced more than three decades ago, at times we have been close only to experience a setback but in the last 12 – 18 months a cure appears to be closer as scientists look at various ways to flush out HIV reservoirs in order to eliminate the virus completely, however, the biggest obstacle in the search for a cure may not be finding one but in it being made available or, accessible to all because the ongoing saga with PrEP demonstrates how scientist finding a cure and authorities making it available are two very different things.

It wasn’t long ago society dreamed of a preventative treatment for HIV, if someone had told me during this time that when it was developed our health authorities would then allow this epidemic to continue by refusing its approval, the idea would have been implausible to me and imagine I would have used the term “conspiracy theorist” to describe that person, yet here we are.

The damning of NHS Directors who made this decision is justified but there is one industry that could help this situation, who’s uncompassionate behaviour receives less attention from society and even less from the media, that is the pharmaceutical industry who set these ridiculous, opportunistic prices. Concern about drug prices is not just a problem for HIV treatment, recent scandals regarding the price of Hep C drug Sovaldi, as well as treatment for certain forms of cancer, have disgusted ordinary citizens and no doubt pleased shareholders in equal measure however, as the budget for our health service plummets due to austerity and we now face further financial instability due to Brexit, the sustainability of treatment on the NHS has to be protected.

One way you can help is to stand behind organisations like Stop AIDS who recently delivered a petition for a campaign they have been conducting called “Missing Medicines”, signed by 6,000 people to the House of Commons. This very important campaign aims to address the format used by pharmaceutical companies to develop treatment which is currently based on profit instead of health need, if successful this would address the lack of treatment for conditions like TB along with helping reduce drug prices and ensure the availability of future treatment on the NHS. You can follow the progress of this campaign on their website http://stopaids.org.uk/our-actions/missing-medicines/ or by following their twitter account @Youth_StopAIDS .

 

Update on PrEP in N.I.

By Andrew Goyvaerts

@PosMovingOnCIC

 

In our ongoing efforts to have PrEP made available in Northern Ireland and throughout the UK we have searched several avenues in hope. The blindsided decision last month by NHS England not to fund its availability came as a shock to the community and indeed the country at large with everybody from politicians, organisations and celebrities, coming out to support the battle for PrEP. This came at a time when Stormont was going through a reshuffle which made our job quite hard but now the dust has settled on a new term, advancements are being made.

One avenue we took recently was reaching out to new members of the N.I. Executive asking if the NHS here will make PrEP available, while ongoing, there has been some communication that would give us slight hope for the future, it should be made clear that the word “yes” has not been part of that communication so as of this moment, there is yet to be a declaration of intent, however, the influence of one particular politician known for her selfless compassion could really make a difference with the decision made by our health board here in N.I. While the NICE investigation is cited by NHS executive after politician people are diagnosed daily with HIV and we cannot ask the virus to wait while bureaucracy takes place, because of this our next move is to mount pressure on the institute to speed up their investigation, especially given the relative speed it took France and the U.S. to make this treatment available for their citizens. Further to this we will continue communication with politicians in the hope that compassion will prevail over cost effectiveness even though we already know preventing is more effective than treating.

Finally, after last week any conversation to do with a political topic, which PrEP and HIV are in many respects, would be unrealistically discussed if Brexit were not included. As mentioned in our Brexit statement yesterday (see full text here https://posmovingon.wordpress.com/2016/06/26/people-appear-to-have-voted-with-spite-instead-of-sense/ ), one of our concerns right now is how much work we might possibly get politicians to do on this matter in the midst of so much upheaval and uncertainty, there are other concerns raised for the Sexual Health sector, not least, what will happen to services in rural areas when the EU stop rural funding and local authorities need to make yet again more cutbacks but in the coming months, ensuring the availability of PrEP on the NHS does not drop to the bottom of the political agenda will be our top priority. We will make contact with NICE in the coming days and update as relevant.

People appear to have voted with spite instead of sense

By Andrew Goyvaerts

@PosMovingOnCIC

 

Do you see the grass so green and fair, young maidens skipping, hair blowing in the air? No? Me neither, nor did I expect to.

On Thursday the country went out ballot paper in hand like a weapon of political destruction to take aim at the conservatives and years of austerity, eh wait a minute is that not May 5th? Comes around every five years, happened last month? Ladies and Gentlemen we got the wrong day.
As the cataclysm of Brexit began to hit home some Bregretters did what they should have weeks ago and googled “what is the EU”, others called the voting office hoping they could change their vote as the rest sat having champagne and kippers for breakfast, all the while those of us who voted to stay sit in the upper gallery looking down on some warped version of Alice in wonderland, wondering what in felicia just happened.
Years of mounting frustration at austerity, lack of opportunity and feeling short changed burst out of the political closet to be taking out on a establishment that had absolutely nothing to do with these matters, that’s what just happened.
While some In voters begin to wonder what next for the Union as Scotland put another Independence Referendum on the table, some are left wondering how our concerns will be addressed as we go forward in the process of leaving. As an organisation which represents an issue that does not recognise political uncertainty we have many concerns with our immediate one being, “how much work will we get politicians to do on matters such as PrEP during this period of upheaval and transition?”, proceeded by concerns for rural services. The EU was such an integral investor in rural areas, with this funding soon to stop we hope when the time comes for more local authority cutbacks, HIV and Sexual Health services will not suffer as they already have.
We will continue to lobby politicians with our ongoing agenda as well as these new concerns raised by Brexit, though with extra vigour just as a reminder that issues surrounding HIV still need to be addressed, that we assure the community.
As broken pieces are put back together questions are asked about where the responsibility of this decision lays, quite simply and perhaps harshly, it lays with those who voted with spite instead of sense. The Leave Campaign may have spouted lies regarding money they would give the NHS but the other side counteracted this saying it was not possible, the In Campaign may have left out vital information but this was available on Google before the 24th of June as so many of us found when we researched and cast our vote based on an informed decision, if we are going to question anything it should be why this was put to the electorate in the first place. That being said, the people of a democratic society have spoke with the majority choosing to leave the EU, that decision, if final, must be respected by both the Stay campaign and the remaining 27 members of the union, this is not a time for pettiness it is a time to get on with it.

This situation surpasses the issue of PrEP

Did you know, by definition of the World Health Organisation the Nation Health Service no longer exists? (Independent, 2016), shocking but true. The devastating impact of the Health and Social Care Act 2012 has led to the NHS being demolished right in front of us leaving staff, patients, the public and some politicians frustrated beyond belief.

As austerity shows no sign of weakening the only hope left is that the Health and Social Care Act will be repealed, though how much damage is done by this time and how repairable it will be, is another matter. For eight years we have lived in a climate of financial fear and uncertainty, projected on us by hyped up headlines and gloomy reports from many of the same people who did not see this crisis coming, it has been proceeded by the bailing out of banks, all the while our public services are being changed beyond recognition and definition, as demonstrated in the Independent article (see below for link).

Of course if we had not supported these industries in a time of need, tens of thousands, indeed even hundreds of thousands, would have ended up unemployed and reliant on the state which would have most likely pushed it to breaking point, however there is a flip side to that coin.

It is all well and good to support or bailout struggling companies/corporations in the name of public interest but if we fail to support our health system the results will be a population of ill-health who are not fit to work for these businesses, perhaps not today but certainly in the future.

This is in an era when we are identifying more medical conditions than ever, combine that with an expanding, as well as ageing population, and we are left with a society in desperate need of a national health system that listens to the people it represents which currently is not happening. PrEP is just one example of the health system not listening to the public anymore so we should use it as our own example to send a message loud and clear that we want the NHS back.

Get behind calls for a PrEP roll out whether you plan on using it or not, whether you are gay, bisexual, heterosexual or metrosexual because this situation surpasses the issue of PrEP showing the functions of public services today are not what we intended them to be.

http://www.independent.co.uk/voices/terrifyingly-according-to-the-world-health-organisation-definition-the-uk-no-longer-has-a-nhs-a6923126.html (With thanks and credit to the Independent for this article)

“That is infuriating and whether or not you are going to take PrEP it should infuriate you too”

It was a busy day yesterday for the launch of our “Wise Up, PrEP Up” campaign which encourages everybody to get behind calls for the NHS to roll out a HIV preventative treatment that comes under the name Truvada, otherwise known as PrEP. Currently the support for this to happen is overwhelming, however, with the NHS showing such reluctance to do the compassionate thing we need to up our efforts.

The name of the campaign is simple, the health service/s need to wise up (a common phrase here in Northern Ireland that tells one they are being foolish), stock up on PrEP and provide the public with what many have called the end of HIV. The CDC report that PrEP can reduce the risk of HIV transmission through sexual intercourse by more than 90% leading the U.S. to approve it for availability in 2012, followed by France in 2015.

Although we have condoms which people should still use for protection from other STIs, PrEP is the way forward to protect from and end HIV. Now we truly have the tools to end the UK epidemic once and for all, Positive Moving On want people to mobilise their community spirit like never before and make this point clear, the devastating effects of this epidemic have been the centre of society for over three decades, dominating our lives with no end in sight, a generation have grown up in its shadow, concerned that they might be the next one to be diagnosed, for some that shadow turned into reality. We now have an end in sight but our national health system, the establishment we rely on to care, refuse to make it available.

That is infuriating to us and whether or not you are going to take PrEP it should infuriate you too because it could be anybody’s nephew, niece, brother, sister, uncle, aunt or friend who wants PrEP, fails to get it and becomes the next person to sit in a small room across from a doctor and hear those words too many of us have heard, “your HIV test came back positive”. If we allow this to happen now, it will be downhill from here, who knows what else will not be provided in future due to “law”, so get writing to your MP, many of whom are outraged by this themselves, state in a respectful manner that you do not feel the NHS represents the public anymore and sight PrEP as an example, better still write to the CEO of the NHS, also in a respectful manner, get on Twitter, Facebook, Instagram and the countless other social media sites there are calling on the NHS to approve PrEP, sign a petition, organise a peaceful march it doesn’t matter if you live in a city, town, hamlet or isolated dwelling, HIV does not distinguish between rural and urban, neither should you, get up and make a noise.

“The NHS need to wise up and PrEP up”

By Andrew Goyvaerts

@PosMovingOnCIC

 

To say the topic of who should pay for PrEP has divided opinion would be as understated as saying Boris Island was the dream of an ego trip, or perhaps a bit too much of that French Champagne and Wine Mr. Johnson talks about so much, but the use of Truvada as a preventative treatment has itself divided opinion with a minority saying it should not be made available because it is not something they themselves would take and so believe others should not be allowed to either. In a situation like this, for many people, one main question arises, why can’t those who are not in favour just stand back and say, “okay, this isn’t for me but it won’t harm me by others having it, so I support it for their sake”.

Personally, cosmetic surgery for the sake of it is not my thing, the growing wrinkles on my face will not be treated with something that was probably developed in Porton Down but if that is your thing, feel free, so long as you are not being forced into it who would I be to say you shouldn’t, after all it is your right and if by chance that right is ever under threat I will stand with you in full support, even though I personally believe that unless it is for reconstructive or medical purposes cosmetic surgery is an unnecessary thing and you could find alternate ways of looking young but again, so long as you are not being forced into anything.

PrEP will not be compulsory to take, nobody will be forced, coerced or peer pressured meaning anyone who does so will want to take it and above all else be taking it to protect themselves so why not support it? I am a firm believer in everyone having a right to their own opinions, to air those opinions and live life in their own way. As long as those opinions are not expressed in a threatening/aggressive manner, said in the hope of inciting others to commit acts of hatred or that lifestyle does not aim to oppress the lifestyle of another, there is no reason why society should not be able to coexist peacefully with our many differences and support each other, however, when people try to impose their views on others, even if that is not in a threatening or aggressive manner, they are expecting others to live life under their rules which begins to feel like absolutism, an insufferable existence at any time but at a time when the population along with the variety of beliefs that exist in society continue to grow it threatens or ability to live together each in our own way with our own views.

If you don’t want to take PrEP that’s fine, just don’t be a dictator by supporting the withholding of it from those who want to take it. As for who foots the cost and those who say it should not be the NHS, the evidence is clear to anyone who has knowledge, preventing HIV costs much less than treating it. When weighing up the cost of prevention vs treatment, some of the few costs one needs to take into account are, ART, physician visits which can be as regular as every two weeks to every 1/3/6/12 months depending on how stable a persons’ health is, along with the cost of medication some people must take to treat other HIV associated non-AIDS conditions (for me 3 tablets per day as well as 2 ART tabs), this far outstretches the cost of providing PrEP. To most people its simple, the NHS need to wise up and PrEP up the people who want it.

From Epilepsy stigma to HIV stigma it feels like deja vu to me

By Andrew Goyvaerts

@PosMovingOn

(Insert image taken during what was unknown by me at the time to be seroconversion, one minute I would feel and look great, next the symptoms would just flare up)

Playing with toys that had probably been donated from one charity or another, this was me at my element with a new found friend, engrossed in our play neither of us could give a flying hoot that we were at the hospital waiting to see a doctor. For a child who was 7 or 8 at the beginning of all this, it surprises me that I don’t ever remember feeling afraid of the machines, or wires connected to my head, but do remember feeling dread of the cold stethoscope and Dr. Cotter I believe his name was, burping in my face as he used it, a repetitive habit of his.

Back then there was no target time for patients to be seen meaning some days you could spend several hours waiting past your appointment time only to be told come back, so the company of another child to play with was very much welcome, especially given the company normally tended to be a lot of older people who kept trying to force feed me opal fruits or commenting on my curly hair. Both mother’s were sitting behind us speaking to one another when after maybe two hours the little boys mother asked mine why we were at the hospital, when my mother explained I had epilepsy and we were waiting to see a neurologist, without another word, the woman stood, picked up her child, walked to the other side of the room to take a seat, refusing to let her child near me again, in spite of his pleas. You see in those days epilepsy was a terribly misunderstood condition, in many ways it still is, with some parents fearing that if their child was playing with me and something happened that lead to a seizure, for example I accidently banged my head on the corner of a table etc., that child might be accused of doing something wrong.

While aware that some parents had this fear/paranoia, nobody had ever physically removed their child from my presence like this and in that moment I learned that fear can make people react in a very cruel way. Looking back the other boy was probably more upset by it than me because he wasn’t used to his mother reacting like this and often wonder what effect that experience had on him. I on the other hand had become used to the stigma that came with the condition, as well as the restrictions. Watching my brothers go off to play football with their team was one of the worst, it didn’t bother me that I wasn’t allowed to play because I liked football, if anything I bucking hate the thing, it was missing out on the social connection it provided in a rural area where there was very little else to do except play football that bothered me, then, at the age of 12 the seizures stopped and the stigma, as well as the restrictions, became much less allowing me to live a usual life for the first time and although by this stage young childhood had already past I made the most of this new freedom. In the subsequent years, as a teenager I began to cook and then got into sailing, whenever my brothers used to head off to football or into the village I would walk up the backroad from our house where there was the most perfect viewpoint and spend hours staring out at the Atlantic, dreaming of being out there, so when it started to become reality life could not have got better.

During training in Greece I took sick midway through, at first my thoughts were, “its  probably not as bad as I feel”, but when the most laidback skipper I have ever crewed for insisted on calling the doctor, knew something must be wrong. After a check up and been given the all clear to keep sailing with instructions to see my doctor at the end of the trip on arrival back to the UK, Texas Longhorn sailed on. Once home, in truth not even, I remember transferring at Gatwick when my throat started swelling up again and continued to do so over the following days while my muscles ached, the sweating was unbearable, and on top of that I had severe pain that after a couple of nights in hospital turned out to be anal fissures. More than two weeks of still experiencing pain from the fissures along with the other symptoms, it was suggested I get my regular sexual health screening early, convinced something else was wrong and concerned that it was actually throat cancer due to the bad swelling, I went to the clinic in order to tick a box so my GP would refer me to the next person

It was a Tuesday afternoon when the nurse who took my blood called to say the chlamydia test came back inconclusive and needed to be taking again the next day. Most people might have started to panic, perhaps it was me subconsciously diverting my attention away from any panic, but instead I got so annoyed.

Imagining someone must have messed up and lost the sample, I was furious at having to go back meaning it would now take longer to get the all clear so they could continue with the medical investigation in the hope of sorting all this out. Taking a seat, it took everything in me to stay composed while covering up my deep annoyance at being back, my only clear recollection of the remaining time are four words, HIV, positive, bad and seroconversion.

Since then I have began treatment, now have an undetectable viral load and good CD4 count to go with it, but stigma as well as restrictions have become a common part of life again. An intended sailing trip to the UAE had to be cancelled as they will not allow tourists who have HIV enter, certain insurance needed to race now being unattainable due to my status means I cannot partake in it as competitively as I used to, would like to and have the ability to, this is also an issue for general insurance policies such as those a self employed person might want, along with the general experiences of HIV stigma we all come by. Although these days its not mammies removing their children from my company there has been a feeling of deja vu over the last few years when talking to a guy and after revealing my status he comes out with “sorry that’s a deal breaker for me” (one of the more politer responses).

Stigma is stigma, in many ways it doesn’t feel any different if you have epilepsy or HIV, are gay or belong to another minority group but stigma is something I’m done with and what lead to the creation of this organisation. I’m 28 now, twenty years is long enough to live under stigma derived from the opinions, fears and judgements of other people, since they say I’m not going anywhere for a long time I have no intention of putting up with it for another twenty.

 

 

 

I’m not egotistical enough to say I’m definitely right

By Andrew Goyvaerts

@PosMovingOnCIC

 

Since my blog clarifying a comment made about chemsex, a friend questioned if my interpretation of the concept is incorrect given I view it as something that should mostly (key word, mostly), be approached from a drug use or addiction perspective. Perhaps it could be, I am not egotistical enough to say my opinion is definitely the right one, some of the worlds leading scientists don’t claim definitive correctness (thank god or that whole the earth is flat thing could have stuck around for a while), so who would I be to do so.

As my understanding goes, which is more personally experienced than most people know(its not just a mainland UK thing), chemsex, is a concept popularised within the gay community and consists of three main factors, the first two are the consumption of a certain group of drugs which lower inhibitions and when combined with a higher sense of sexual pleasure/desire lead to people taking higher sexual risks than one would normally take, mainly engaging in unprotected, group sex. The third factor, which compounds the situation, is the use of telecommunication apps, or dating apps as they are more commonly know, to engage in these actions with ease.

If that interpretation is wrong then my mind is always open to enlightenment and being challenged with alternative thoughts/beliefs, if anything I love the challenge as long as it is done in a non-aggressive, non-degrading manner, society seems to have turned debate into an argument at times, understandable with such a large population but there is really no need, we can all have our opinions, debate them and coexist in peace, as said in the past, it does not need to be a case of one opinion is right and the other wrong, both opinions may have merits.

If it is correct, then one solution could be for the sexual health, addiction and telecommunications services to work together on the matter of chemsex instead of the responsibility being placed on sexual health services, as it currently appears to be. There are ways of opening up dialogue with the telecommunication sector, due to connections in this sector I know for certain some dating apps are working towards addressing the issue of chemsex, which will hopefully lead to improvements in the near future. Addiction services are under severe pressure and this only adds to it, however, if the various sectors work together to highlight a need for extra funding due to this problem there is the possibility of securing funds that will give the potential to make our addiction services stronger, and more advanced, than at any other previous time. As for the sexual health sector, not self glorifying here because as yet, we have had little to do with this matter except monitor from the side-line,  sexual health services are doing everything possible to address chemsex with the resources available, which currently are stretched due to local authority cutbacks and the impact of other austerity measures.

What would be useful from my perspective is to see nationwide data showing how many people who engage in taking higher sexual risks when on Meth, G, Meph etc., do so when sober, at the moment it appears the only data available is localised to one area or based on the experience of service users from a sole service provider, collaborative studies showing evidence from several areas of the UK or service providers would perhaps be more conclusive, in my opinion, but once again, I would never be egotistical enough to say my opinion is definitely the right one, especially when about a situation so complex and one of which few professional studies have been conducted.

If anyone feels they have a point that could change my opinion please do feel free to get in touch, I am not an unreasonable person, just don’t tear me apart for having my own opinions in life and daring to air them.

 

 

NHS are giving in at the first hurdle.

By Andrew Goyvaerts

@PosMovingOnCIC

 

As the National AIDS Trust find avenues to challenge the NHS ruling on PrEP and look set to take action, it demonstrates to some a clear reluctance by the NHS to provide this treatment given their failure to look at these other avenues themselves.

Let’s hypothetically say that a law does indeed prevent the NHS from approving PrEP, in the act that would set out such a law, in most cases, there are clauses in place to negotiate said law when needed and if a clause is not in place there is always the power to include one. These clauses and powers were set up for the very reason of enabling government, or governmental body (NHS), help in times of a humanitarian/social crisis. Some might feel it melodramatic to use the word crisis but after more than thirty years with no end in sight it would be fair to consider the HIV pandemic a crisis.

Now there is an end in sight, PrEP, but the NHS appear to be giving up at the first hurdle, if they truly wanted to make it available they could find the power to do so. We find the power to fix social crises any other time so why not now? It feels like the sole basis of this decision is the involvement of sex, after all, preventative measures are provided for diabetes, cancer and obesity, yet somehow when it comes to HIV there is a law preventing it. Sure people will point at condoms and say “they work most of the time in preventing HIV”, which they are right to do because we need to continue our encouragement of condom use to protect from other STIs and non resistant strains, but is that really a reason to withhold this treatment from the public? Does this now mean the same people will also start to point at the overconsumption of sugar, smoking or over eating and say “abstinence prevents some cases of diabetes, forms of cancer and incidents of obesity? Will the NHS now say these preventative treatments also cannot be provided? Society will go down a very slippery slope if people start pulling at threads like that.

In the past, it’s always been a pleasing moment when abroad and someone has commented on how great it must be to live in the UK where there is a national health system, making me feel endlessly lucky. Though I am terribly grateful for the benefits of the health system along with the amazing physicians, nurses and other workers who have nothing to do with this decision, goodness knows between HIV, epilepsy and whatever else I benefit from its existence enough that I should be grateful, after endless cuts without a second thought for staff on the frontline as well as service users and uncaring decisions like this, there is now a slight shame when someone brings it up. Why? It’s embarrassing because it appears hierarchy within one of our own institutions could not care less anymore about the people they are supposed to represent.