HIV/AIDS awareness in Cyprus

HIV in Cyprus - Womens Matters

This booklet is intended for women living in Cyprus affected by HIV/AIDS

Introduction

This booklet is intended for women living in Cyprus affected by HIV/AIDS. It provides a guide to HIV services, how to access them, and a range of other relevant topics for women. It looks at how HIV is passed on, how women can protect themselves, and pregnancy issues.

What is HIV and AIDS?

Human Immune-deficiency virus (HIV) is a virus that attacks the body’s immune system and slowly breaks down the body’s ability to fight infections and disease. A person with HIV may feel completely well and have no symptoms. However, after a long time the virus may damage the immune system making the body unable to fight off infections or serious illness. When this happens, a person is said to have AIDS. Nowadays, doctors prefer to use the term advanced HIV disease rather than AIDS. This is because several anti-HIV drugs known as combination therapy, which help to keep the infection under control, are enabling people to live longer.

How is HIV passed on?

You can get HIV through:

• Sexual intercourse without a condom
• Blood containing HIV (e.g. transfusion)
• Injecting drugs – sharing drug injecting equipment with someone who is HIV positive
• A mother who is HIV positive can infect her baby during pregnancy, labor, and delivery or while breastfeeding

How are most women infected?

The greatest source of infection for women is sexual intercourse. Women are two times more likely to be infected through sexual contact than men are.

Why Should I Take the HIV test?

• So that you can know, if you are worried
• So you can look after your health if the test is positive
• So you can make an informed choice if you want to have a baby
• So you can delay or prevent illness with new treatments if you are HIV positive
• So you can know whether HIV is a possible cause of your partner’s ill health or death, or if you have recently had a baby who is always unwell and not responding to treatment.

HIV Testing

• It is important to think carefully before you decide to take the HIV test because of the emotions that arise after testing.
• Some women find it easier to inform their partners before going for the HIV test.
• A positive test means that your life will never be the same again for you and your family.
• You need to think carefully about why you want to be tested

Where to go for the test

• You can go for a test at a General Hospital or a chemistry laboratory. The service is free and confidential.

HIV testing for pregnant women

• The test will be one of the many tests given to pregnant women as part of their antenatal care.

Will I be forced to take the HIV test?

•  No. If you are pregnant, it is up to you to decide whether to go ahead or not with testing.
• If you decide not to take the test, your antenatal care will still continue in a normal way.
• Some women have felt under pressure to take the test while in a hospital or at the antenatal clinic. You do not have to agree to a test until you are ready.
• If you feel you are being treated unfairly for refusing to take the test, you have a right to make a complaint.

What happens when you go for a test?

• You will normally be asked if you want pretest counseling. If you are not asked, it is advisable to ask for it yourself, as this is important. Usually, a health advisor or counselor does it.
• You will also be asked for your consent, which will be put in writing on your file.
• After the test, you will be asked to return in person for the results.
• Results take from one day to several days depending on where you take the test.
• Doctors recommend that both you and your husband or boyfriend take the HIV test, as their support is important.

What does a positive result mean?

• A positive result means you have HIV. It does not mean you have AIDS.
• The test cannot show whether you are ill or will become ill.
• Different people react in different ways to results of a positive test such as feeling shocked, angry, sad, or frightened, and that is normal.
• You will have many decisions to make about yourself and others.
   

What does a negative result mean?

A negative result means that you are HIV negative. However, be aware that when someone becomes infected with HIV, it can take up to three months for their immune system to produce enough antibodies to show up on an HIV test. This gap is called the window period. It is therefore advisable to take another test after three months to be sure.

Who do I need to talk to after the test?

• You will need to talk to a counselor or someone who knows about HIV and what it means to live with the virus.
• Some women have found it also helpful to speak with another woman who is HIV positive.
• Telling someone about your HIV status can be helpful especially trusted friends and family members; otherwise the burden of secrecy can be hard to bear.
• Some women fear to tell in case their partners leave them. Others prefer to keep information private as long as they practice safer sex. It is up to you to decide what is best for you and your partner.

Who else can I tell I am HIV positive?

• Telling your GP can be helpful as he/she can help you understand treatments and manage side effects. He can also prescribe drugs for other illnesses, which would be harmful to HIV. GP’s are the only doctors who do home visits, and this is useful if you need to be visited at night.
• It is also helpful to let your child’s school, nursery, or child-minder know in order for them to know what to do if your child is ill and be able to offer support.
• Be aware that your child may be treated unfairly if he or she is positive, as some people are still ignorant about HIV.
• Many women also get support from their faith. The leaders of their church or mosque can also be a source of support if there is knowledge of HIV issues and a positive attitude towards HIV.

Confidentiality

• Confidentiality means keeping information private.
• The law requires all hospitals and health authorities to maintain strict confidentiality of information about people with HIV.
• No one should tell other people that you have HIV without your permission. If you are afraid of going to a support group for fear that someone might tell other people, meet with the support group worker privately until you are confident. However, no one can be sure that confidentiality in a group will always be kept.

PART TWO

Living with HIV

• Many people with HIV live for a long time if they look after themselves. There are several things you can do to take care of your health. If you are HIV positive, taking anti-HIV drugs can reduce the level of HIV in your blood and improve your health.
• Health checks and medical monitoring
• It is very important to have your health checked and monitored regularly once you test positive.
•  Ideally you need to have your health checks every three to six months even if you have no HIV related symptoms. Ask questions if you do not understand anything.
• If you start to develop symptoms or start anti-HIV treatments, you will need health checks more often.
• When you have health checks, it is important to keep appointments for check-ups even when you are feeling well so that any problems are dealt with early.
• You also need to have regular cervical smear tests once a year to check for any changes that may need treatment.

CD4

• HIV targets CD4 cells (a type of white blood cell). If the cells are few, your immune system will not function well.
• The CD4 cell count shows the state of your immune system. Stress, fatigue, or poor eating affect the amount of CD4 cells in your blood.
• If the CD4 count falls and remains low, you will be at risk of developing infections.

Viral Load Test

• Viral load test measures the amount of active HIV virus in your blood and shows how fast the virus is reproducing.

How can I avoid stress and stay well?

• Try and set aside time for rest, relaxation, and fun.
• If you have young children, try and find an hour to do something you enjoy after the kids have gone to bed.
• Ask your social worker to refer you to a center for respite care so that you can have a few days of break from your responsibilities at home.

Is Food and Diet important?

• Yes. A balanced diet maintains strength and body weight.
• If you are on HIV treatments, you may have to adjust your meals but you will be able to eat many things.
• A dietician at your treatment center will help you plan a balanced diet. You will need to take extra care in preparing and cooking your meals.

Can I still have sex?

• Yes you can. HIV does not stop you from having a sex life.
• Some women who are newly diagnosed initially lose interest in sex.
• Whatever your situation, whether you continue with your relationship or start a new one, it is important to practice safer sex.
• Using safer sex measures like a condom or a femidom for sexual intercourse can also reduce the risk of transmitting sexually transmitted infections, which can stress your immune system and other strains of HIV that may be resistant to treatments.
• Regular sexual health checks are therefore very important.
• Remember that alcohol and other drugs may make it harder to practice safer sex.

Most women find it difficult to talk about sex. In addition, not all partners can handle the news of your being HIV positive. You can get ideas about making sex safer and enjoyable for both of you.

When to start treatments for HIV

• Starting treatment is an individual decision. However, most people begin medication when their CD4 count is falling towards or already is below 200.
• It is helpful to hear other women’s experiences but remember everyone is different.
• Medical treatment for HIV is still growing and changing. It is important to have up to date information to help you make decisions.
• Anti-HIV drugs have to be taken indefinitely on an ongoing basis.

What Is Combination Therapy?

• Combination therapy constitutes three or more medicines to fight HIV.
• Taking combination therapy helps to increase the CD4 count, prevent opportunistic diseases, and stop the virus reproducing itself in the body.
• People who take combination therapies have a reduced risk of becoming ill or dying.
• If you fail to take your medicines regularly at the recommended dose and times of day, HIV will become resistant to the medicines.
• If you do not want to start combination therapy, tell your doctor.

 

Your rights to getting treatment:

• You have the right to say no to any medication. A good doctor should listen to your opinion, respect what you have to say and discuss other possible treatments.
• If you disagree with your doctor and have difficulties speaking English or expressing your opinion, you can get support and advocacy from one of the organizations listed at the back of this booklet. You can also ask for an interpreter.
• You have a right to a second opinion from another doctor if you disagree with what your doctor is saying.
• You have a right to be seen by a woman doctor if you don’t want a male doctor.

Clinical Trials

These are a kind of research to try out new drugs. If you decide to take part, they may be helpful but be aware that there are risks as well. It is important to understand the issues involved.

Can I use complimentary, traditional, and alternative therapies?

• Yes. Complimentary therapies are known to strengthen the immune system, relieve stress, and side effects and symptoms of HIV related illnesses.
• Traditional remedies may not have been tested scientifically but have been helpful to some women.
• It is important to tell your doctor that you are taking them as they might affect other HIV treatments. It is important to keep hospital appointments so that your health can be monitored.

Pregnancy and Children

For many women having children is important. If you are planning to have a baby, there are many things you will need to think about:

• How can I avoid passing HIV to my baby?
• How will I cope if my baby is infected?
• Do I have the energy to care for my baby?
• Who will care for my baby if I become sick?

You may need to discuss these issues with your partner, a trusted friend, or relative. However, remember in the end, it is your decision.

Having HIV may sometimes affect your periods, which may make it difficult to become pregnant. If this happens, talk to your doctor about it.

If my child has HIV, will they be ill all the time?

• Many children with HIV have many years of good health.
• Some children become ill in the first two years of their life; however, doctors will normally monitor their progress to see how they are doing.

How do I manage my children’s treatments?

• Your doctor will advise you on how to manage them including their side effects.
• There are several treatments available now with new ones being developed from time to time.
• All children under the age of 19 years are entitled to free treatments regardless of their immigration status of their parents.
• Some women have accepted treatments for their children that they did not agree with for fear that their children will be taken into care. This will only happen if it is clear that you are putting your child in danger by not looking after them properly or are seen as unfit to look after them.

It is important to develop a good relationship with your doctor to enable you to discuss your child’s needs honestly. If you find it difficult, you can get support from the Cyprus Coalition of People Living with HIV.

How will my family cope?

• HIV is a family matter and will affect everyone in one way or another.
• Sometimes families can be overcome and experience many emotions like anger, guilt, frightened or helpless, or feel they must take care of you.
• Let them know how you would like them to help and how you want to manage your life.
• They will need support, information and counseling. Make sure you are not left coping with everyone’s feelings.

Where can I get information and practical support?

 How can I make long-term plans for my children?

• It is not easy to plan for the future care of your children if you are HIV positive, but it is important.
• The most difficult part is coming to terms with the possibility that you may not be able to look after your children yourself.
• You need information about available choices (options) on childcare, guardians, making a will, or practical support if you become ill.
• If you are ill or have to go into the hospital, social services can arrange for someone to look after your children occasionally to give you a break (respite care).
• Your children can be looked after in the carer’s home or in your home. If you feel anxious about your children going to stay with a carer, you can nominate a friend or relative in this country to look after your children. The following section explains the different choices available.

What is Fostering and adoption?

Foster Care

• Foster care refers to arrangements that social services make for children to be “looked after” when their parents die or if they are unable to care for them.
• The child is placed in public care whether through voluntary agreement with the parents or through some compulsory order.
• Foster care arrangements can be temporary or long term and care is provided in the carer’s home. The carer may be a stranger to the child or family or a relative or friend.

Adoption

• Adoption is when the care and parenting of your child is legally transferred to a new family if you die or decide to give up your responsibility for your child.
• It also means that you and your relatives could lose your rights to contact the child.
• If you choose for your child to be adopted, it is possible to have a chance to select and know the adoptive parents.
• If you wish to share legal responsibility for your child with another relative or with a close and trusted friend, a residence order will give responsibility for your child to such a person.
• The order is legally binding and does not remove your own responsibility or rights as a parent. It also decides whom your child should live with.
• If you choose for your child to be adopted, it is possible to have a chance to select and know the adoptive parents.

What can I do?

• You can contact the children and families section of Social Services
• If you want to appoint a friend or relative as legal guardian, it is very important to discuss your plans with them before making any decision and to think about long-term foster care or adoption.

   

Do I need to talk to my children about being HIV positive?

• Yes. However, telling your children about your HIV status is not easy. It is up to you to decide when and what to tell the children.
• In most cases women want to protect their children from painful experiences that HIV brings by not telling them. However, children often notice when something is wrong.
• They often imagine that things are worse than they are, especially if someone in the family is obviously ill, or think that it is their fault. They will need to be told something to help them deal with what is going on.
• Some women find it best to tell the children when they are old enough to understand and keep confidentiality, or when the child begins to ask questions. Only you can tell when your child is ready to deal with such information.
• If you feel that your children are not ready, you can tell them about the illness without mentioning HIV.
• Once they know that there is HIV in the family, your children will need support.
• Do not allow anyone to put pressure on you to tell your children if you feel that you or your children are not ready.

Breast-feeding:

• Breast milk is known to have HIV. Mothers who breastfeed risk passing HIV to their babies. In addition, if the nipples are cracked or bleeding, you risk passing HIV to your baby through blood.
• Maybe you will need to think about how to explain why you are bottle feeding instead of breastfeeding.

What services can I get from my Local Authority?

• Before you get any services, a full assessment of your needs will have to be made. Some of the services include:
• Help if you are unwell, particularly if you are looking after children of your own
• Advice on health care if your children are under 5 years old from a health advisor
• Home-help/domiciliary care for cleaning, washing, shopping, or preparing meals if you are unable to cook
• Help with childcare such as child-minding or taking the kids to school if you are unable to do so
• Adaptations to your home like handrails to assist you in going up and down the stairs
• Transport in the form of a travel card or taxi card depending on your needs
• Home medical care depending on your needs from a district nurse;
• Buddies or volunteers from voluntary HIV organizations who provide practical support such as shopping as well as emotional support

IMMIGRATION AND WELFARE BENEFITS

Does HIV affect my immigration status?

Having HIV does not refuse you the right to stay. However, it may affect you in many ways. You need to get expert advice, but whatever your situation you should take the following steps:

• Get advice right from the time you enter Cyprus and well before the end of any time limit on your stay. This time limit may be stamped in your passport, travel document, or letter. It is very important to avoid overstaying your permission to remain in Cyprus as this could have serious consequences for you.
• Make sure you know your exact immigration status in this country. This may affect your ability to take a job or claim benefits. Claiming a benefit which you are not entitled to can seriously affect your ability to remain in Cyprus.
• Always take advice about immigration matters from a good qualified legal advisor. Be aware of ‘immigration specialists’ who ask for large fees to help you stay in this country.

Where can I get advice?

What do I need to know before claiming benefits?

• There are no benefits specifically for people who are HIV positive and being HIV positive does not affect your entitlement benefits.
• No one needs to know the reasons why you are a refugee or asylum seeker.
• What you can claim depends on your own particular circumstances such as your health, whether you are working, or any other money you have coming in and your immigration status.
• If your status does not allow you to have “recourse to public funds” it means you are not allowed to claim most benefits including housing provided by the council.

Relationships and HIV

• Being HIV positive does not stop you from dating or having a boyfriend or family. However, think first about it before making a decision.
• You may find it beneficial to involve your husband or boyfriend in matters of childbearing and any discussions around HIV.

Female Genital Mutation

GLOSSARY

Adviser/Advocate. A person who can help put your case forward e.g. a health advocate can help you in communicating with your doctor.

Asymptomatic. A person with HIV but is generally well and has no HIV-related illness.

CD4 Count. A CD4 count measures the number of CD4 cells in your blood. CD4 cells coordinate your body’s fight against infection.

Clinical trial. Is a research study to find out how well a medicine or treatment works.

Combination therapy. Means taking more than one type of anti-HIV medicine at the same time. Research has shown that for most people this works better than taking only one (monotherapy).

Compliance. Sometimes called adherence means taking medicine at the right time, in the right way; otherwise HIV will develop resistance to the medicines. Taking anti-HIV medicines in the wrong way can be worse than not taking them at all.

Drug-resistant HIV. When HIV becomes resistant to anti-HIV medication.

Immune system. The body’s way of fighting off infections. HIV attacks the immune system, which is why people with HIV get infections that usually do not affect people with healthy immune systems.

Prophylaxis. Taking a drug to prevent or delay an illness or infection.