Frequently asked questions

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U=U is a gamechanger for those of us living with HIV.

U=U stands for ‘Undetectable = Untransmittable,’ It means that a person living with HIV, who has an undetectable viral load, is at no risk of transmitting the virus to their sexual partners.

HIV viral load refers to the amount of HIV in the blood of a person living with HIV. If you take HIV treatment consistently, you can reduce the viral load to a level too low to be detected by a blood test. Once your viral load has fallen below this level, it is said to be undetectable. For most people, this occurs after taking HIV treatment consistently for 3 to 6 months.

This idea was first recognized in 2008 in the Swiss statement. It was issued to doctors in Switzerland stating that those who are on treatment do not pose a transmission risk to their sexual partners. However, at the time, there were no scientific studies to back up the idea strongly enough for it to become accepted fact. In subsequent years there have been several scientific studies that have proven this, the most well-known is the Partner Study. The study recorded over 58,000 incidents of sex in relationships, where one person was positive and the other negative, without condoms. In all instances there was not a single documented transmission between partners.

Not everybody living with HIV has an undetectable viral load. It is vital that we also support those who chose not to, or cannot take treatment.

U=U is the evidence that we can live long, happy, healthy lives without fear of transmission to our sexual partners. For many of us this information can mean we have sex or relationships for the first time without the burden of fear. It means that for those of us who wish to have children, we know we can become pregnant and prevent transmission to the baby.

Check the hashtag #undetectable on twitter

HIV is not an easy virus to catch sexually, but if you are worried that you may have been exposed to a risk the first thing you should do is go to your doctor or a sexual health clinic and get an HIV test. If you do this straight away (and within 72 hours) you may also be prescribed PEP (post exposure prophylaxis) which can stop the virus before it has a chance to take hold. PEP is also available at any hospital Accident and Emergency department. If you have HIV already and have an undetectable viral load there is no risk of passing on HIV to anyone else and a hospital would not prescribe them PEP. Please consult your doctor if you are unsure about your viral load or medication.

It’s also helpful to understand how HIV is and is not transmitted.

HIV is found in body fluids including blood and genital fluids (semen and fluids in the vagina and rectum). The main ways that HIV is passed on are through unprotected anal or vaginal sex and by sharing injecting equipment. Performing oral sex may pose a very small risk if there are open sores or bleeding gums, as this provides an easier route for infection, but the person with HIV would need to have high virus levels (viral load) to make this possible. Condoms provide excellent protection against HIV transmission during sex, as well as protection against other sexually transmitted infections. Effective HIV treatment removes the risk of HIV transmission once the levels of virus in the blood (viral load) are undetectable.

Saliva, spit, urine and faeces are not infectious for HIV. You cannot get HIV from kissing, hugging, or shaking hands with somebody with HIV – or any other normal social contact. HIV is not passed on by spitting, sneezing or coughing, or by sharing household items such as crockery, cutlery, or bed linen. Many sexual situations have no risk of transmitting HIV such as masturbation, receiving oral sex and vaginal or anal sex using a condom.

Telling a sexual partner about HIV is an individual decision, and it can be difficult one to make. If you would like support, you could speak to one of our peer-support workers - someone else living with HIV who has gone through similar experiences.

Talking about our HIV status to others can be one of the most challenging things about living with HIV. Deciding who and how to tell can feel very daunting, especially when we are first diagnosed. There are lots of different people we might want to tell: a partner, family, friends, work colleagues and healthcare providers. Here are some general tips on how to go about this. For more information and things to consider with particular audiences, download our Talking about HIV fact sheet.

There’s no perfect roadmap to talking about your status, but if your knowledge is up to date and you trust your instinct and not your fears, you’ll be on the right track.

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.

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 tell someone, 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. Basically, the better informed you are, the more likely you are to reassure them and reduce any anxiety they may have. If you’re anxious, they’ll probably be anxious too. In our 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:
We can never know for certain how people will react, so we need to be ready for this. 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. It’s useful to remember that our knowledge and understanding of HIV before diagnosis may not have been great so if faced with ignorance then we should be sympathetic, rather than defensive. The act of telling is necessarily 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 talking about it 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.

Consider the five “W’s” when thinking about telling someone, as they will allow you to make a well thought out decision: who, what, when, where and why:

  1. Who do you need to tell?
  2. What do you want to tell them about your HIV infection and what are you expecting from the person you are telling? What is the benefit for them?
  3. When should you tell them?
  4. Where is the best place to have this conversation?
  5. Why are you telling them?

For further guidance on telling people about your HIV try these websites:

  • aidsmap – telling people you have HIV
  • Life with HIV
  • MyHIV – Telling Peopletelling

Many people living with HIV travel regularly for holidays, work or to study, and in most cases, HIV is not a barrier, but if you want a hassle-free trip it’s essential you do some planning before you leave as this could save you a lot of time and money if things go wrong.

Countries with entry restrictions
(see http://www.hivtravel.org/)

Although the number of countries limiting entry to people with HIV is decreasing, some continue to enforce some form of restriction. According to UNAIDS as of 2015, there are 35 countries which still have some restrictions, although this is down from 59 in 2008. These are mainly countries in the Middle East, North Africa and Russia. Five countries still have a complete bar on entry. These are Oman, Sudan, United Arab Emirates, Yemen and Brunei Darussalam. Restrictions have been lifted in recent years for the United States, Singapore and China.

Whereas travelling for short stays (up to 90 days) is OK in most countries, if you are looking to emigrate, work or study in another country, there may be additional entry restrictions including the need to provide proof of your HIV status. The best way to find out what restrictions currently exist is to contact the embassy or consulate of the country you want to visit. If you are an EU citizen, or have the right to live in an EU country, then there should be no restrictions on travelling to another EU member state. Whether this will change post-Brexit is something we’ll need to watch.

If the country you want to travel to imposes some kind of restriction then you will need to decide if you want to take the risk of travelling there or at least how you can better manage that risk. It’s unlikely you will be stopped by customs or immigration, but if you are and they establish you are HIV positive, they may refuse entry and deport you.

Travelling with medication
One of the most important things to think about is how you are going to carry and take your HIV meds. If the country has HIV-related travel restrictions, you may get questioned about your meds when going through customs. You can disguise them by putting them in a different container, a vitamin bottle for example.

Or you might take a letter from your doctor stating the treatment is for a chronic health condition and that the medication is for personal use – it doesn’t need to mention HIV. In this case it’s best to use the container the meds came in as it will have your name on it.

Make sure you take enough meds for the trip, and some extra in case of delays, and keep them in your hand luggage or some in different bags to avoid losing them if bags go missing.

Access to medical care and medication supply
If you need to get supplies of your medication after you’ve left home, you may find this very difficult or impossible – which is why it’s important to take enough with you. But in case this happens, make sure you have a record somewhere of the names of the pills you take as they may have different names in the country you’ve travelled to.

If you’re travelling in the EU and you have the right to live and work in an EU country, you can obtain a European Health Insurance Card. This isn’t essential for you to access HIV meds if you need them, but it will save you a lot of bother and extra paperwork if you do.

Travel insurance
Because modern HIV meds are now so good, most travel insurers include cover for HIV-related claims. Insurers will usually ask for your HIV status, but if you’re undetectable and on treatment, you shouldn’t have to pay much of a premium and some insurers do not charge any extra. Remember, even if an accident or illness abroad is not HIV-related, omitting to let your insurer know about your HIV status may invalidate your policy. There are companies that specialise in, or have experience of, insuring people living with HIV. You can find lists at aidsmap.

If you need to access HIV meds whilst abroad, an insurance policy that includes HIV-related claims should cover the cost of treatment (check the small print) and if the medication you need isn’t available in the country you are travelling to, the policy should cover the cost of shipping the meds out to you.

Vaccinations
It’s always important to check whether you need any vaccines for your destination and if already vaccinated whether these are up to date. Modern HIV treatments don’t interact with vaccines, and even most ‘live’ vaccines these days are fine if you’re living with HIV and on treatment. However, it’s worth discussing this with your doctor or someone in your HIV health team in good time before you travel.

Talking about your HIV when you get there
Finally, it’s worth remembering that people’s attitudes and levels of knowledge about HIV may be very different outside of the UK and to what you are used to. Be aware of this, particularly when deciding whether to talk about your HIV with guys you meet or hook up with. People in countries where homosexuality is less accepted, or illegal, are more likely to view HIV in a negative light, so be discreet.

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 must 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.

Women living with HIV can have healthy babies as long as they collaborate with their doctors and midwife and take HIV medications as prescribed. The main risk factor in HIV transmission is your viral load. If this is ‘undetectable’ (which means that there is very little virus in your blood: below 50 copies/mL) then it is extremely unlikely that you will l transmit HIV to your baby. The risk increases if your viral load is detectable, particularly at the time of the baby’s delivery, but the risk of transmitting HIV can still be very low with appropriate treatment and medical care

Yes, as long as there are no other complications that would otherwise prevent a vaginal delivery.

Reasons that may prevent this could be:

  • Other sexually transmitted diseases may be present such as active genital herpes.
  • Other pregnancy complications such as:
    • Pre-eclampsia
    • Uterine rupture
    • Cord prolapse
    • Placenta abruption
    • Placenta previa
    • Breech position
    • Fetal distress
    • Multiple births (twins)
    • Diabetes

If you don’t have an undetectable viral load at the time of the birth your health care team may recommend for you to have a caesarean section as this would offer more protection from HIV in your blood to the baby.

This would depend on the reason for having a previous caesarean (C-section). If the only reason was that you had a C-section due to having HIV, this has now changed and women with HIV can choose to have a natural birth.

In the UK most NHS trusts will consider a Vaginal Birth After Caesarean (VBAC)after one C-section.

If you have had two C-sections, then they might prefer for you not to deliver by a vaginal birth. You can insist, but the risks increase with every birth. If you have any other types of surgery on your uterus they might advise against a VBAC. Every surgery increases the risk of possible uterine rupture.

One of most problematic causes of a failed VBAC is uterine rupture, which is when the scar on your uterus from your previous C-section re-opens during labour, putting you and your baby at serious risk. Fortunately it’s extremely rare: only one in 100 women who attempts a VBAC experiences uterine rupture.

A few hospitals will have a specialist HIV midwife. In most hospitals you will be seen by a special midwife who specialises in care for patients who may have some health conditions, including HIV.

If you have been on treatment and your viral load is undetectable at the time of the birth your baby will be given zidovudine monotherapy.

This means he or she will take this single anti-HIV drug, usually twice a day, for four weeks, starting within four hours of being born.

If you have not been on HIV treatment at all during your pregnancy, and your baby is less than three days old (72 hours), your baby should be started on HIV treatment immediately. Again, the recommended treatment in this situation is a three-drug combination, taken for four weeks.

Not all anti-HIV drugs available are considered suitable for use in babies. Which anti-HIV drugs are used in a three-drug combination can also depend on any treatment you have been on (because your baby will have been exposed to those drugs in the womb). Doctors will use the best available evidence to help them choose the right combination for your baby.

This is a question asked by many. According to BHIVA guidelines, breastfeeding can be an option, but you must MUST understand that you are taking a risk even if it’s very small. Any woman who wishes to breastfeed must be highly adherent to medication, your viral load must be under 50 throughout your pregnancy and you must be engaging with your clinical multidisciplinary team (MDT). Any choices/decisions must be informed and guided by your clinical team.

For more info information, check out

Dr. Hermione Lyall – BHIVA Presentation

Avert – Fact sheet on breastfeeding

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