Basic HIV Information
HIV stands for Human Immunodeficiency Virus. It is a virus that damages the cells in a person’s immune system and weakens the body’s ability to fight everyday infections and disease.
AIDS stands for Acquired Immune Deficiency Syndrome. It is the name given to describe potentially life-threatening infections and illnesses that happen when a person’s immune system has been severely damaged by HIV.
HIV is found in the bodily fluids of an infected person, notably semen, vaginal and anal fluids, blood and breast milk.
The most common way of getting HIV is through having unprotected anal or vaginal sex. Other ways of getting HIV include sharing needles or syringes and from mother to baby during pregnancy, birth or breastfeeding.
HIV cannot be transmitted through sweat, urine or saliva and you cannot get HIV from kissing, hugging, sharing food or drinking utensils, toilet seats or insect bites.
There is currently no cure for HIV but there are very effective drug treatments for HIV known as ART (Anti-Retroviral Therapy). ART involves taking daily medications and it works by reducing and then keeping the virus to an amount that is so small it cannot be quantified. This is called having an undetectable viral load and it keeps HIV at bay, meaning people living with HIV can now live long and healthy lives.
Another benefit of being on effective treatment is that a person cannot transmit HIV to another person. This is because when a person has an undetectable viral load the amount of virus is so tiny it cannot be passed on. This is known as U=U, meaning Undetectable equals Untransmittable.
What is U=U?
What is U=U?
U=U stands for Undetectable equals Untransmittable.
What Does U=U Mean?
This means that a person on HIV treatment with an undetectable HIV viral load cannot transmit HIV to another person. UK guidelines state that HIV clinicians should discuss U=U with their patients, so this should not be new to people living with HIV.
How is that Possible?
Viral load is the term used to describe the amount of HIV in the blood. The higher the viral load, the greater the risk there is to a person’s own health and illness through HIV. Viral load is also related to the risk of HIV transmission through sex. The aim of HIV treatment is to bring the amount of virus down to undetectable levels. Having an undetectable viral load means that the HIV treatment has effectively reduced the virus to an amount that is so small it cannot be quantified. When a person is undetectable this is good for their own health and it also means that there is too little of the virus in sexual fluids for it to be transmitted.
How Can we be Sure About U=U?
There have been two large studies called PARTNER 1 and PARTNER 2. These studies included couples where one partner was HIV positive and undetectable on HIV treatment and the other partner was HIV negative. PARTNER 1 followed gay and heterosexual couples who had sex without condoms more than 58,000 times. PARTNER 2 followed gay male couples who had sex without condoms more than 77,000 times. The outcome of these studies was that there were zero linked transmissions of HIV. Evidence has now meant that U=U has become widely and confidently accepted and is endorsed by the British HIV Association (BHIVA) as well as equivalent international organisations.
What’s Needed for U=U to Work?
Guidelines recommend that a person has an undetectable viral load for at least six months before guaranteeing the protection of U=U.
U=U is dependent on maintaining an undetectable viral load. For the person living with HIV, this means taking daily HIV medication as prescribed. Good adherence is key to U=U. Viral load monitoring is part of the routine testing that happens when a person attends their HIV clinic appointments.
What Does U=U Mean in Practice?
The PARTNER studies looked at heterosexual couples including HIV positive men and women as well as gay couples, meaning that U=U applies to all. It also included acts of oral, vaginal and anal sex and passive and active roles, meaning that U=U applies to different types of sexual situations.
The bottom line is that if you are HIV+, take treatment and maintain an undetectable viral load, you can have sex knowing that you won’t pass HIV on to your sex partner. If you were using condoms with a sex partner solely to stop the transmission of HIV, then this is no longer a reason to keep using them. However, U=U doesn’t protect against other sexually transmitted infections or prevent pregnancy, which may be a reason that people opt to keep using condoms.
What is the Significance of U=U?
U=U is extremely important in challenging the stigma that surrounds HIV, stigma that is often fuelled by a fear of transmission.
Bruce Richman, the founder of Prevention Access Campaign and Undetectable = Untransmittable, said:
“First, we focus on internal stigma because there are millions of people worldwide who are suffering because they don’t know U=U,” he says. “But then there is the external stigma as well. U=U changes the way we see ourselves, but it also changes the way other people see us: the way we’re treated in clinics and healthcare settings, the way policy decisions are made about us in employment, housing and education. Stigma is such a challenge but because U=U absolutely changes the definition of what it is to live with HIV, it dismantles that stigma.
“We now have an unprecedented opportunity to do that. And that changes everything.”
HIV and Stigma
A definition of stigma is: “The shame or disgrace attached to something regarded as socially unacceptable.”
There may be a feeling of ‘us and them’. People who are stigmatised are marked out as being different and are blamed for that difference.
Despite medical advances in the treatment of HIV, the stigma surrounding HIV persists. Many people have fears, prejudices or negative attitudes about HIV. Stigma can result in people living with HIV being insulted, rejected, gossiped about and excluded from social activities. At its most extreme, stigma can drive people to physical violence
People living with HIV often feel nervous about telling others that they have HIV due to the fear of stigma or discrimination. Stigma, whether perceived or real, often fuels myths, misconceptions and choices, impacting people’s education and awareness. It can result in people with HIV believing some of the things that other people say about HIV, even when these are not true.
Stigma is often attached to things people are afraid of. Ever since the first cases of AIDS in the early 1980s, people with HIV have been stigmatised. There are a number of reasons for this:
- If undiagnosed and unmanaged, HIV can still be a serious, life-threatening illness. There is a long history of illnesses being stigmatised – cancer and tuberculosis are two other examples;
- People who don’t understand how HIV is transmitted may be afraid of ‘catching’ it through social contact;
- Some people have strong views about sexual behaviour. They may think that there are situations in which sex is wrong or that certain people shouldn’t behave in particular ways; and
- The way people think about HIV depends on the way they think about the social groups that are most affected by HIV. Some people already have negative feelings about women, gay men, immigrants, black people, people who use drugs and others.
(Info source https://www.aidsmap.com/about-hiv/what-stigma)
The Brunswick Centre knows from people living with HIV about the negative impact that stigma has on their lives. We also know that stigma can prevent people from coming forward to have HIV tests. We are committed to challenging stigma in our daily work and at a strategic level both locally and nationally.
We provide support to people living with HIV and to their carers across Kirklees and Calderdale. The type and level of support we offer will very much depend on what your needs are. You may already be very clear about what you need support with. Alternatively, we can offer you the opportunity to complete a needs assessment during which we can assist you to establish what your support needs are and then develop an action plan with you, which we will review regularly together. Our support will be strengths-based and we will work with you towards greater self-management of your continued HIV health and well-being.
Health and Wellbeing
We offer themed workshops, yoga classes and one-to-one complementary therapy sessions.
We can help you manage a wide range of symptoms associated with HIV, working alongside your existing medical treatment programme. Some of the ways we help include:
- Relaxation and stress management;
- Improving digestive function and circulation;
- Boosting energy levels;
- Relieving muscular tension and keeping the back and joints moving;
- Relieving sleep problems;
- Managing anxiety and building self-esteem; and
- Supporting your immune system.
We also offer self-care management advice and support.
We post regularly on Facebook and Twitter about these sessions and we also post self-management tips. To find out more on how to access therapies and workshops please contact the office.
How to Access the HIV Support Service
You can refer yourself:
If you are a Kirklees resident, you can contact Cath Ellis, our dedicated Kirklees Community Worker, on the office number 01484 469691 or on her work mobile number 07733 065281.
If you are a Calderdale resident, you can contact Dionne St Hilaire, our dedicated Calderdale Community Worker, on the office number 01422 341764 or on her work mobile number 07732 271747.
You can be referred:
You can ask someone to make a referral on your behalf. This could be a member of your HIV clinical care team, a professional from another agency or a family member. They would need to contact the relevant community worker as above.
We have found that many people living with HIV have felt unable to disclose their status to others, whether family, friends or other professionals. As a consequence, this can leave people feeling isolated; it can be useful to have a safe and confidential space to air thoughts and feelings and discuss particular problems that arise from being HIV positive and ways of dealing with them. Our workers can offer emotional support as well as helping to reflect on options available to problems that people may raise.
Our one-to-one support can range from a one-off session to a series of regular sessions over a period of time, which we will regularly discuss and review with you.
Advocacy and Signposting
Staff within the HIV Support team will be happy to advocate with or on behalf of service users, subject to need. This can be of use to service users who are finding it difficult to approach another service or who are not getting what they need from a particular service.
Moreover, the team is well networked with other services, organisations and professionals and can signpost or refer service users to services that are more appropriate to their needs. This may include housing services, social work or other specialist health agencies, for example.
Nutrition and Dietetic Support
We offer a nutrition and dietetic service at the Brunswick Centre for anyone living with HIV. Our registered dietitian has years of experience of working with adults, children and families living with HIV both in the UK and South Africa.
The service provides individual nutritional support to service users experiencing problems around eating or getting the right food for their health needs.
What Your Dietician Can Offer:
- Advice on eating a well-balanced diet to support you maintain a healthy weight, keep your immune system strong, meet all your vitamin and mineral needs and still enjoy eating;
- Support and advise you on eating well on alternative diets, including vegetarian, vegan and traditional African or South Asian diets;
- Information on eating well when you have a limited budget;
- Advice on storage and handling of food and water to prevent infections if your immune system is low;
- Dietary changes for medical problems, including heart health and raised blood fats, raised blood sugar, weight loss or gain, bowel problems (constipation, diarrhoea, IBS), food intolerances, bone health and vitamin D deficiency;
- Adherence support and managing the side effects of medication, including nausea and vomiting, taste changes, bowel problems, loss of appetite, fatigue and lipodystrophy; and
- Support for a healthy pregnancy and feeding your family.
What Happens When You See the Dietician?
The dietician will ask you several questions (including current food intake) in a relaxed manner to get a picture of your lifestyle and diet. This helps tailor advice to meet your needs. You may be weighed and the dietician may use a tape measure to measure your waist and arms. By having this information, the dietician can monitor your nutritional status over time.
If you think you would benefit from seeing the dietician, speak to a member of the HIV Support team at the Brunswick Centre about a referral. Appointments can also be arranged through the Huddersfield, Halifax or Dewsbury HIV clinics.
The HIV Support team are aware of the financial hardship and poverty many people with HIV face and how this can have a detrimental effect on health and wellbeing.
The Brunswick Centre raises money and receives donations for its welfare fund with the aim of reducing the effects of financial hardship and poverty. Small grants can be accessed by people who live in Calderdale and Kirklees who are living with HIV and are experiencing financial hardship and poverty. These grants are typically small and are designed not for long-term support but to assist service users in the short term. Whilst this is not a crisis fund, emergency payments can be made to service users who are experiencing sudden and unexpected financial hardship. We are also able to provide personal hygiene products and food vouchers to people who have no income or recourse to public funds.
Staff are also skilled in accessing external hardship funds for individual service users and can obtain funding for a variety of items. We are also a referring agency for the Terrence Higgins Trust Hardship Fund.
Benefits and Welfare Rights
We have a dedicated specialist worker, Billy Durrant, who provides welfare benefits advice and support to residents of Kirklees and Calderdale who are living with HIV and to their carers. This includes:
- Advice on entitlement to welfare benefits and how to claim;
- Support to complete welfare benefits applications;
- Support at welfare benefits assessment appointments;
- Support in appealing a welfare benefits decision; and
- Representation at appeal hearings.
Where people are experiencing problems with debt and are in need of debt advice, our welfare rights worker puts people in contact with specialist debt advisors.
If you have queries about welfare benefits or are experiencing difficulties with an existing benefit, you can contact Billy Durrant on our office number 01484 469691/01422 341764 or on his work mobile number 07738 719504.