Monday, April 3rd, 2017
I’ve been on my HIV treatment for a while and have become quite settled with the meds I am taking. Last week I was asked by my doctor to switch to cheaper HIV meds that she said are just as effective but will save the NHS money.
Will the treatment be as good and do I have to make the change?
This is a question that most people taking HIV meds should be getting their heads around as the NHS is bringing in new prescribing guidance on HIV medication options. For those whose doctor hasn’t yet discussed this with them, they probably soon will, so being prepared for the conversation is a good idea and that you understand what is happening and why.
When a drug company makes a new medicine, it is controlled under a patent. It has an approved, or generic, name as well as its own brand name chosen by the company. For example when you need pain relief you might buy Boots own Ibuprofen (that is the generic name) rather than the more expensive Nurofen (this is the brand name). They are basically the same drug, but once the patent runs out, other drug companies can make the drug at a lower cost. These are called ‘generic drugs’. More than 70% of all medications prescribed by the NHS are generic and it is routine for the NHS to use generic drugs wherever possible to treat any health condition.
HIV treatment is usually a combination of three or more different drugs – called a ‘regimen’ – and comes in the form of a small number of pills that you take each day or a single combined pill known as a Single Tablet Regimen (STR). Doctors have access to a range of HIV meds that they can prescribe. The costs of these drug regimens vary significantly, however they all work equally well in managing your HIV. The best regimen for you will be based on your test results, any other health conditions or other medications you may be taking. Your doctor will also consider other factors, your occupation for example, that may affect the choice of which is the best regimen for you.
Generic HIV medications are already in use, but as more HIV drugs become generic and more patients switch to them, the potential annual savings for the NHS run into millions of pounds. This is why you may be asked to change from a branded product to a generic one. If you are on a Single Tablet Regimen, this might mean increasing the number of tablets you take. The appearance of the packaging or the tablets may also change, but their quality and effectiveness will be unaffected.
I know that drug names can be hard to pronounce, let alone remember, so stick with me here. Let’s take an example. Atripla is a single tablet branded HIV med containing three different drugs. The NHS are switching people from Atripla (3 drugs) to Truvada (2 drugs) and generic efavirenz (1 drug). The two options contain identical drugs but are in either one pill (Atripla) or two pills (Truvada and efavirenz). The two pills are about £700 a year cheaper. This is just one example and there are lots of HIV drug combinations, so the chances are that your regimen may well contain a generic alternative.
Any changes proposed to your medication should be discussed with you by your doctor and you shouldn’t suddenly start getting a different medication without knowing about it in advance. You might also want to ask whether you can make the switch to generic alternatives. Knowing that you are doing all you can to keep the prices of your meds as low as possible helps you do your bit by freeing up resources to meet other people’s needs across the NHS. Switching from one to two pills a day (which is what I plan to do) doesn’t seem like much of an inconvenience if it’s going to help the NHS. Another money-saver is home or local (e.g pharmacy, work or post office) delivery of HIV meds, which saves the NHS the 20% VAT, so you might want to consider that if you don’t already use it. To find out more, see this article from aidsmap.
It’s important to remember however, that if there’s a good reason why you should stay on your current regimen, then your doctor shouldn’t force you to make the change and you shouldn’t feel bad about doing so. Your safety and your needs should always come first. Keeping an open and honest dialogue with your doctor and HIV team is really important here, whether this is your first time on meds or you are thinking to make a switch. Make sure you talk to them about the following if they are relevant:
Your mental Health: An HIV diagnosis can trigger mental health issues and some HIV drugs can make mental health worse. How you are feeling now and in the past can help your doctor decide what medication option is best for you. If you suffer from mood swings, anxiety or depression, tell your HIV team.
Shift work or irregular hours: These may affect your treatment options – some drugs can make you feel dizzy, some you have to have with a meal.
Other medication and health conditions: Your doctor should ask what other medications and herbals or supplements you are taking. Think about anti-depressants, pain management, statins, hormone treatments etc., including non-oral medicines such as inhalers.
Recreational drugs: tell your doctor if you are taking any recreational drugs as these can also interact with HIV meds.
Sharing health information: Your healthcare will be easier and safer to manage if your GP knows your HIV status. Your GP is best placed to manage non-HIV related conditions or make referrals to other specialists as well as ensuring you are part of any national programmes such as flu vaccination or cancer screening. They need to know all the medicines you take (including HIV meds) to safely prescribe any drugs. Your clinic will check you are happy for them to write to your GP – you should tell them if you are not.
If you need any further advice or support around this, talk to the HIV team in your clinic. HIV i-base is also a good source of treatment information who you can call or email with questions, as is aidsmap. At Positively UK we provide one to one and group peer support for and by people living with HIV and we regularly discuss our experiences and questions around treatment. MyHIV offer online counselling and advice, live chat and an online community forum, should you want to check in with others about their experiences.
If you’ve got a question you’d like answered around living with HIV, please email firstname.lastname@example.org
Wednesday, February 1st, 2017
Since I started treatment and got to undetectable I’ve felt a lot better about meeting guys and having sex again. But because I know I’m not infectious, I’m not sure whether I need to tell them about my HIV.
What do you think?
Great to hear you’re feeling back to your old self. When we become undetectable and realise we can’t transmit the virus to anyone, we start to get our ‘mojo’ back and that does wonders for our confidence and self-worth. Meeting and dating guys can be difficult at the best of times, regardless of our HIV status, so removing this one complication makes things a whole lot easier.
But like so many things in life, there’s always a flip side. Living with an undetectable viral load places us in an odd position. On the one hand we should stay perfectly healthy if we take our meds, but on the other we’re not actually cured. We’re still HIV positive men. A friend who was diagnosed many years back recently told me that in the old days you would disclose your status to a guy you liked because you wanted to give him a simple choice. A choice as to whether to sleep with you or not. Because in those days there WAS a risk of passing on the virus. If he didn’t want to get involved with you or do the business then you wouldn’t like it, but at least you tried to respect it. Nowadays it’s different. It shouldn’t really be about giving someone a choice based on your status, it’s more about you wanting to open a dialogue, to have the conversation about what it means to have a healthy sex life and relationship. Of course they may not want to sleep with you for other reasons, but if it’s because of your HIV when there is no risk of passing on the virus then it makes it harder, in my view, to respect them.
Having the conversation though, starts by having it with yourself. We all need to think through whether we will tell someone, when and how we do it and how prepared we might be for the reaction. If it’s just a hook up or a one-night stand, I don’t think there’s necessarily the need to disclose because you’re not exposing him to any HIV risk and having ‘that’ conversation can be a bit of a passion killer. But if he then later asks you, you need to be clear what you’re going to say because it’s hard to predict how someone might react if you disclose to them only after you’ve had sex. Personally, I almost always disclose because I prefer to lay my cards on the table and for both of us to go into things with our eyes open. This way we both feel more relaxed and there’s better connection and chemistry.
If we do disclose, say in a dating situation, a common question I get asked is when best to do it. Do we break the news when we meet someone and get it out the way so as not to waste time barking up the wrong tree? Or do we wait until they’ve got to know (and hopefully like us) a bit better and then be more likely to overlook the issue of our HIV? Of course the risk of waiting is that we may then be open to accusations of not having told them earlier. Personally, I think we do ourselves down if we wait too long before we say anything. Think about it. What are we telling ourselves if we start from a position where we feel we are ‘damaged goods’ and that perhaps they’ll ‘overlook’ our status once they’ve got to know us? Isn’t it better to go on a date feeling sexy and confident? After all, we’re doing our bit. We’re on treatment, we’re undetectable, we’re looking after our health. We should be proud of that!
Of course he may react badly, or show high levels of ignorance. If this is the case, start off with trying NOT to be defensive. Use it as an opportunity to educate him. Ask him when he was last tested and whether he’s thought about taking PrEP. Find out about PrEP yourself so you can give him the right information (visit I Want PrEP Now and Prepster). If he needs time to think things over, make sure he knows you’re cool with that. More than likely he’ll like and respect you more for this. And if he doesn’t then he’s probably not worth it anyway.
Then of course there’s the Apps. To their credit, many of them now have options around choosing what you say about your status. Not just whether you’re positive or negative, but also whether you’re undetectable or on PrEP. Being upfront about this before anyone even messages you can avoid awkward conversations down the line. This way you can filter out people who might have an issue with your status before they even contact you. Being honest may also lead to more interest from other positive guys and also from other guys that know if you’re undetectable, they can’t catch HIV from you. In short if you’re being honest about your status on line, chances are people won’t think any less of you. I’ve noticed more guys being upfront about their status which is a really good thing, whether we’re poz or neg. Telling the world we’re undetectable or on PrEP isn’t something everyone wants to do, but every one of us that does it makes an important contribution to bringing our lives with HIV and preventing onward transmission into the light and reducing stigma around it.
We don’t have to, or generally always want to, tell the world about our HIV but when we do we’re acknowledging that it’s an important part of our personal story about which we shouldn’t feel any guilt or shame. It’s just one of life’s challenges that are thrown at us, I believe, to make us better and stronger people. But this only happens if we learn to open up, talk about it, and have those better conversations.
If you’ve got a question you’d like answered around living with HIV, please email email@example.com
Wednesday, December 14th, 2016
Since my diagnosis in the summer, I’ve told one or two close friends but am finding it hard to be more open about my status and haven’t told my family yet. I’m going home to see them at Christmas and would like them to know but am worried how they’ll react.
What shall I do?
You’re far from alone. Telling our friends and family about our HIV status is one of the biggest challenges we face as people living with HIV and having feelings of uncertainty around it is very common. Deciding who to tell, when and how to do it can feel so overwhelming, especially after a new diagnosis, that some of us opt to stay in the viral closet for fear of negative reaction, judgement and rejection. For us gay men, we remember only too well how that feels from our experiences coming out as gay and how we approach disclosing out HIV status is closely informed by those times. In many ways it’s a second coming out.
Here are my 5 most important things to consider when disclosing to family and friends:
It’s your choice who you tell, and yours alone
The first thing to remember is that choosing who to tell and not tell is your personal decision. You don’t have to tell anybody, or feel any pressure to do so – it’s your choice and your right. Living with HIV is in many ways no different from living with any chronic medical condition and is a private matter. So when you do decide to open up, it’s better to be selective and take your time to consider who to tell and how to tell them. You want to get it right, because once you’ve told people you can’t take it back.
Once you’ve decided to tell, be clear why you are doing the telling
Usually, we’ll be telling family and friends because something important has happened to us and we want to share important things with those we are closest to. But we should check in with ourselves whether we’re feeling anxious and are just doing it to ‘dump’ our feelings. Often being able to talk about what’s on our mind is a great relief and that is enough in itself, but if you’re not sure you’ll get the support or understanding, or that they won’t be able to handle it, then think carefully. A good rule of thumb is to ask yourself the question, what is the benefit to me of telling them? If that’s not clear, don’t do it.
Think about what you want to say
Once you’ve decided to disclose, it’s good to think about what you want to say in advance and be ready for the questions. You might want to say that you’re telling them because of how much they mean to you and how much you love them. And that you want them to be there for you. Think about what it is you want to tell them about your HIV. Keep it simple if you can – you don’t have to tell your life story. You’ll probably want them to know that they don’t need to worry about your health, and that you’re going to be OK. And whether you’re on meds or not. Or undetectable. Offer to answer their questions but be prepared for the ‘how did you get it?’ one (errr… through sex?). Basically, the better informed you are, the more likely you are to re-assure them and reduce any anxiety they may have. If you’re anxious, they’ll probably be anxious too. In my experience, how you are and come across in these situations will determine more than anything else the reaction you get.
Be ready for the reaction
Having said that, we can never know for certain how people will react. So we need to be ready for this. Christmas may or may not be a good time to do it, depending on who is around and how long you’re all around for, so think about that. Whatever the response you get, and even if it doesn’t go the way you’d hoped, more than likely when that person has digested the news and thought about it, their reaction will change. I always find it useful to remember that my knowledge and understanding of HIV before I was diagnosed was, to my shame, not great so if I am faced with ignorance then I’ll be sympathetic, rather than defensive. The act of telling is not in my experience a one-off event, but rather a journey, a conversation, that takes time to unfold and develop. In fact, on receiving the news, it’s the other person that might want to get support and talk to someone else about it, so you need to consider whether you’re happy with them disclosing to other people or whether you’d prefer it kept in confidence.
And if all this just feels too difficult, don’t isolate yourself
There may be lots of reasons why you still don’t feel able to tell your nearest and dearest. Perhaps you’re not out, or there are cultural attitudes in your community that would simply make being open about your HIV status an unbearable prospect. If this is the case, then don’t isolate yourself. Allow yourself to draw on the support and experiences of others that have been in the same situation. A number of organisations, including Positively UK, provide one to one and group support giving you opportunities to explore your feelings and hear how others have dealt with these issues in a safe and confidential space.
For further guidance on telling people about your HIV try these websites:
I’ve been very lucky in that all the people I’ve told have been supportive and this has only strengthened my ties with family and friends. I come from a close family so it never even occurred to me not to tell them. But in terms of my friends, I made a conscious decision that if they couldn’t deal with it, then really they weren’t people I wanted in my life. People living with HIV that I know and work with often talk about their post diagnosis life as being like a ‘filter’, an opportunity to re-assess their relationships and focus on those that are genuine and nurturing. Time to get rid of the fake friends perhaps.
There’s no perfect roadmap to disclosing your status Cristian, but if you trust your instinct and not your fears, you’ll be on the right track. Thousands of others have dealt with this and have found their way through it. You will get through it too.
If you’ve got a question you’d like answered around living with HIV, please email firstname.lastname@example.org
Wednesday, November 30th, 2016
I started HIV treatment a few months ago, and my viral load has just become undetectable. I know this is good news and that there is now virtually no risk of passing on the virus, but I still feel anxious about it and how it will affect my sex life and relationships.
Can you help?
It’s great news you’re now undetectable. This means that you have a level of virus in your blood that is so low it cannot be detected by the tests used in clinics. Not only does this mean that your body’s immune system is making a full recovery and you should live a long and healthy life, but that you’re no longer able to pass on HIV. That was a great feeling when it happened to me and knowing I was not infectious made me feel a whole lot better about myself.
But reaching the undetectable milestone, does raise new concerns and doubts in our minds. We know we’re not cured, but we know we’re basically OK so it feels like we’re in some kind of no man’s land of neither one thing or the other. And into this space pour the questions. Am I really uninfectious? Do I still need to use condoms? How do I talk about being positive and undetectable with my partners? Do I even need to disclose my new status? Suddenly things don’t feel quite so straightforward.
Let’s start with the facts. In terms of passing on HIV, the science has been building a pretty conclusive case. In 2008 it was claimed, through what has become known as the Swiss Statement, that if you’re on treatment and your viral load has been undetectable for at least 6 months then you don’t need to use condoms during sex. At the time, this caused a lot of controversy but more recent studies such as HPTN 052 and the PARTNER study are now backing this up as fact. The latter followed a group of straight and gay people living with HIV and on meds and their HIV negative partners as they had condomless sex to see whether treatment did prevent transmission. Out of 58,000 instances of sex without condoms, there was not a single case of HIV linked to their partner. Not one.
This was an important study because it included a large number of gay couples, showing that treatment prevents transmission via anal sex. This study is ongoing and further results are expected next year, but the take home message is if you have had an undetectable viral load for 6 months, and you have regular viral load testing showing that you remain undetectable, then the risk of passing on HIV to the other person without a condom is negligible. We can’t say zero risk, but that’s as close to zero as you can get. So whether you do or don’t use condoms, in the end comes down to the extent to which you and your partner worry about things that happen very rarely.
Before my diagnosis I’d been using condoms fairly religiously (although perhaps not religiously enough) but then after diagnosis and for the first time in my life, I realised I didn’t need to avoid getting HIV. This might sound obvious, but it was a much more significant moment than I imagined. The feeling of liberation I have discovered is shared by a lot of positive men. Finally, the fear is over and we can get on with the business of having sex the way it was meant to be, which after decades of living through the AIDS epidemic is something very powerful.
Unfortunately, condomless sex, particularly with multiple partners, leads to increased infection with other STI’s and the need for regular antibiotic treatments. This is unhealthy for us, costly for the NHS and if current predictions are anything to go by, the rise of antibiotic resistant strains of STI’s could mean that these infections become untreatable. STI’s such as Hepatitis C can also be more difficult to treat if we’re living with HIV. So we need to find ways of keeping ourselves and our partners healthy and STI free, while enjoying our sex lives. This comes down to asking ourselves what kind of sex and relationships we want.
Working out how to talk about our undetectable status can be tricky, particularly as there still appear to be high levels of fear and ignorance about it in the gay community. In a gay sex survey carried out last year by FS Magazine, it was found that 49% didn’t know what undetectable meant. It also showed that high numbers of men, particularly younger men, said they wouldn’t have sex with a positive guy. However, when it was explained to them what undetectable meant, a third of these men reconsidered their stance. This shows that although there remain high levels of ignorance, educating our friends and partners about undetectable viral loads goes a long way to combating stigma and rejection.
So, getting yourself informed about your undetectable status, and knowing the kind of sex and relationships you want, will give you the knowledge and confidence around whether to disclose to your partner, how you talk about it if you choose to do so and what you decide to tell him. It will also give him the confidence to know he can trust you. He may not take you at your word straight away and might want to go away and make up his own mind. That’s fine. At least you’ve got the ball rolling. In the end you’re both operating from a place of openness and honesty. Where things go from there depends on that magic thing called chemistry but at least you’ve got off on the right foot.
Check the hashtag #undetectable on twitter
For further reliable sources of information go to:
Friday, October 21st, 2016
I was recently diagnosed with HIV, started my meds straight away and thought I was doing OK. But I’m not sure how well I’m really dealing with it or how I’m supposed to feel.
Can you advise?
These days because modern HIV meds are so good, more people living with HIV than ever before are living healthily and able to continue life much the same as before we were diagnosed. As long as we pop those pills every day and take reasonable care of our bodies, there’s no reason why we can’t live a completely normal lifespan. This is great news of course, and for some of us this is where the story ends. We just get on with life, put it behind us and don’t worry about it. After all, it’s just a virus and the meds are taking good care of that. End of.
But like many things in life, it’s not always that simple. We might struggle to accept what’s happened, feel full of confusion about the impact it’s going to have on our lives and are worried about the future. After the numbing shock of it so many questions come flooding into our minds. Who am I going to tell? How will it affect my relationships? What about my family? All this can feel overwhelming. When I was diagnosed two and half years ago the first thing I did was go out and start drinking in a soho bar (which trust me is not a good idea after a large shot of Penicillin). By the time my mate finally turned up, I was a shivering mess in the corner.
The thing is, there is no set way we are meant to feel after a diagnosis. Everyone’s circumstances, reactions and ways of dealing with it are different. In my work at Positively UK, some people have come to me saying that they feel OK but that somehow they feel they shouldn’t and instead are waiting for some kind of ‘crash’. Perhaps this reflects the negativity and very real past horrors around HIV and AIDS that still sit in our collective conscience, and which then bump up against the new brighter realities of Anti Retroviral Therapy and undetectable viral loads. I guess we still can’t help asking ourselves the question: ‘is this really not going to kill me?’
But then some of us really do go through some sort of crash, especially if our lives weren’t going that swimmingly before the diagnosis and indeed might have contributed to why we got infected. Feelings of low self-esteem, guilt or shame – which we may have been feeling for years anyway around our sexuality – can be made worse by the HIV. But this is also where it can be something of a wake-up call, a realization that we need to deal with stuff and make changes in our lives. So a new diagnosis can give us a positive opportunity to face up to things we might have been avoiding. In my case, my working life had lost direction and I decided to get some life coaching. It really helped to bring some focus back into my life which I’m not sure I would have done without the diagnosis.
So what would I advise? Here are the 5 most important things I tell people who are recently diagnosed:
You will more than likely have been diagnosed in a sexual health or GUM clinic and will continue to get your care there, but in the NHS you can go to any clinic you like and where you think you’ll get the best service. If you’re not happy at the way you’re being treated, you can just go somewhere else. And as you’ll be having your bloods taken every few months as well as collecting your pills, you’ll want the experience to be as easy and painless as possible.
Many of us didn’t know much about HIV before we were diagnosed and we certainly didn’t get taught about it at school. Getting ourselves educated about HIV gives us the confidence to be able to ask our healthcare providers the right questions and helps to re-assure our loved ones that we’re going to be OK. Be wary of Google searches – there’s a lot of misinformation out there. Your clinic or an HIV charity can point you in the right direction.
Once we’ve had the news, we immediately start thinking about who we are going to tell, how we’re going to tell them, or how on earth we’re going to keep it secret. Of course we will more than likely want to tell someone. But remember there is no legal obligation to tell anyone (except in very limited circumstances) and once you’ve told them, you can’t undo it. Better to do it gradually, and get yourself ready and informed so that you you’ll be OK when the barrage of questions come your way.
It’s good if you can tell at least someone you trust, because you’ll feel the relief of sharing the burden and getting some emotional support. Even better, talk to others you know who are living with HIV and if you don’t know anyone then ask your clinic whether they have or know of any peer support services. Positively UK offers one to one and group support to gay men right across London as well as Recently Diagnosed weekend workshops. There are lots of us around that have been through the stuff you’re going through and can share the benefit of our experience.
Being diagnosed with HIV does marks a milestone in our lives and this undoubtedly has an impact on how we feel about ourselves. To start with it might feel like the world has caved in and we struggle to think about much else other than what’s happened. But soon enough we realise that we still enjoy going out with our mates and all the other things we enjoyed in our pre HIV life. So don’t be hard on yourself, just take things one day at a time.