Life with HIV
Everyone copes and reacts differently to HIV. Your approach to work, socializing and living with HIV will be unique and that is ok.
Different stages of HIV
Acute HIV infection/Seroconversion
When you first contract HIV, your body begins to produce antibodies. Some people say they feel like they have the flu. Doctors call this ‘seroconversion illness’ because this is the very first time your body is trying to cope with HIV. Common symptoms may include a high temperature (fever), sore throat, a blotchy rash on the body, tiredness, swollen glands and joint and muscle pain. However, you may not experience any of these.
Blood tests confirm there is HIV in your body by picking up the antigens and antibodies your body produces in reaction to the virus. In the early stage, there is a lot of HIV in your body (high viral load). However, during this window period some of the blood tests can actually give a negative result. This is because your immune system is still reacting to the virus and very few antigens and antibodies are being made. In reality, this high viral load means the risk of transmission is much higher now than at other times.
Chronic infection phase
A few weeks after the initial infection, if you’ve been ill, you may start to feel better and symptoms will disappear. HIV is, however, still present in your body and causing harm to your immune system – it can also still be transmitted to partners through unprotected sex. This is called the ‘chronic HIV infection phase’. How long this phase will last is, again, different for each person and for some, it can be several years.
Doctors use two key ways of finding out how active HIV is in your body and its impact – CD4 count and viral load. The CD4 count will give an idea of the damage done to your immune system, if any. The viral load test indicates the number of copies of the virus in your body. These tests give you and your doctor useful information to plan your treatment. If you have any questions about when you should start treatment you should discuss this with your doctor.
Over time, your CD4 count is likely to decline and this is a sign that your immune system is getting weaker.
AIDS stands for Acquired Immunodeficiency Syndrome and nowadays, with effective HIV treatment and management, a vast majority of people living with HIV never develop AIDS.
We talk about AIDS when people develop diseases which normally do not occur in individuals with healthy immune systems. Most of these conditions are cancers or opportunistic infections caused by bacteria, viruses, fungi and parasites that are normally controlled by the elements of the immune system that HIV damages. With the right treatment and care, people diagnosed with an AIDS-related illness can recover.
You may have a number of different illnesses. This is why AIDS is referred to as a syndrome – a collection of signs and symptoms caused ultimately by the same virus, HIV.
Your legal rights and responsibilities
People living with HIV have the same human rights as everyone else, including the right to health, privacy, non-interference from the state and non-discrimination. No one can refuse you a job, housing, medical services or dental services because of your HIV diagnosis. In fact, it is illegal in NZ to discriminate based on HIV status under the Human Rights Act and you can complain to the Human Rights Commission if you feel you have faced discrimination.
If you think you have been discriminated against, the first step is to contact the Commission’s InfoLine team: freephone 0800 496 877 or email
email@example.com – or you can send a letter or use the complaint forms available at www.hrc.co.nz.
This right to non-discrimination extends to your partners, family, friends, colleagues and other people associated with you. No one can treat people unfairly because of their relationship with you.
In New Zealand, although you are not obliged to tell anyone your status, the law may require you to disclose your status under certain circumstances. If you want to donate blood, semen, eggs or organs, then it is quite important to disclose your HIV status to doctors.
For some things, it is quite straightforward. For example, the Department of Immigration requires most people applying for permanent residency to New Zealand to provide the results of an HIV test.
You might encounter unexpected problems sometimes. If you’re thinking of applying for life insurance, some companies may ask you about your HIV status. Some might refuse to insure you if you’re living with HIV or if you refuse to tell them your HIV status. There are exceptions in the Human Rights Act that may allow this, though you can check with the Human Rights Commission if you’re not sure.
As far as relationships go, the decision to tell or not to tell sexual partners is yours to make. Under New Zealand law, everyone has a legal duty not to endanger the life, health or safety of others. In law, this means that people living with HIV must take ‘reasonable precautions’ to avoid transmitting HIV to sexual partners. ‘Reasonable precautions’ would mean participating in sexual activities that involve a very low risk or no risk of transmission, for example, masturbation, oral sex and kissing, and using condoms for anal and vaginal sex.
The legal consequences of having an undetectable viral load have not been tested in New Zealand courts. In this case, even though there is no risk of sexual transmission, it is recommended to use condoms with partners who are unaware of your positive status.
People living with HIV who disclose their HIV status to their sexual partners before having consensual sex avoid legal liability. There are some considerations to be mindful of here.
Donating blood, organs, semen or eggs
Blood donations are screened for HIV for everyone. It gets risky if you donate in the window period of infection, because the test may not actually pick up the presence of HIV in your blood. It’s different if you want to donate organs, semen or eggs.
With a little planning, you’ll easily be able to avoid any hassle while travelling. You’ll need to carry your medication with you, so ask your doctor for a letter explaining that you need to take it regularly and that it’s for personal use. The letter doesn’t have to discuss your HIV status.
You can get HIV medication at pharmacies only if you have a doctor’s prescription for them, so carry this with you to show immigration officers in case they ask for it. As most modern HIV medicines don’t need any special storage, it is easy to carry them when you’re away.
You may have to answer questions at border control if you’re carrying your medication, depending on the country. Some countries have an entry restriction for people living with HIV. Check it out beforehand, because if you travel there with HIV medicines, you may be deported. The UNAIDS and aidsmap websites provide helpful information about countries to which you may not be able to travel if you are living with HIV.
It’s not worth skipping HIV medicines for any reason, even if you are travelling to a place you really want to visit. If you miss your medication, you may become resistant to the drugs and you may also become ill. Be aware of different time zones, because you need to take pills at the same time daily. Discuss how you can work out timings on your journey with your doctor if you’re going to a country with a huge time difference or if your travel involves long flights. Carry documents and medication in your hand luggage and have enough medication to last you the whole trip.
Pregnancy and childbirth
There are many parents living with HIV who are raising healthy, happy kids. If you think you might be pregnant or want to get pregnant, there are different ways to make it possible and reduce the risk of transmission. Talk to your doctor sooner rather than later.
Positive Women Inc also has excellent resources on HIV and pregnancy.
There is a risk of mother-to-child transmission during pregnancy and during or after childbirth but, with the right care, it can be greatly reduced. Babies of pregnant women living with HIV with an undetectable viral load, who are on treatment, have greatly lowered risks of getting HIV. Anti-HIV drugs may enter the baby’s body while still in the womb and act as a preventive method against the virus.
At the time of birth, medication makes the chances of HIV transmission low. Options for delivering the baby will depend on the mother’s health and results from key blood tests. Babies are given anti-HIV medicines after birth for some time as well.
For women, an HIV diagnosis may change your life in ways both similar and different to men. However, you can have children if you wish and continue to work, study and have meaningful relationships. In New Zealand, there are laws to protect you from discrimination too.
There are different kinds of contraception and options will vary, depending on whether you’re on antiretroviral treatment yourself or if you are sexually active with a person living with HIV.
Condoms remain the most effective way to prevent pregnancy and transmission of HIV and other STIs. Other forms of contraception may prevent pregnancy, but will not offer the best protection from HIV.
Some types of hormonal contraceptives could interfere with antiretroviral treatment and you may not be able to take emergency contraceptive pills.
Taking the pill or having an IUD fitted is an effective contraceptive option. However, without a condom, it won’t stop the transmission of HIV. Spermicide is usually used with diaphragms and caps. Doctors don’t recommend this if you’re living with HIV. Using this method will often irritate the vagina. You may itch and get genital sores or lesions, which increases the risk of HIV transmission.
If you’re concerned or afraid for any reason and think you could be rejected, blamed, excluded or physically attacked by someone because of your HIV diagnosis, there are people you can talk to. Call a helpline such as 0800 REFUGE, Positive Women or contact one of NZAF’s counsellors.
Many women find counselling, peer support and access to good healthcare helpful. In that sense, it is no different from men living with HIV. A non-judgmental environment and supportive friends and whānau make the journey to acceptance and change easier.
Work and employment
People living with HIV are protected against discrimination by the same laws that protect people living with disability. Knowing your rights and responsibilities as well as your employer’s rights and responsibilities can help through all stages of employment.
You are protected from discrimination in employment by the Human Rights Act (1993). Under this Act, employers cannot refuse to employ somebody solely on the basis of their perceived or actual HIV status. The Act also outlines avenues for appeal if you feel abused, neglected and/or harassed. The only context in which employers can insist on an employee having an HIV test is if being free of illness or disease is essential for the job. This may be the case for surgical staff for example. Regardless of their HIV status, all employees must be provided with protection from any reasonable risk of infection, including the risk of HIV transmission.
In most work and employment scenarios, you are not required to disclose your HIV status to your employer. If you do disclose your HIV status, your employer is accountable and has to take all reasonable steps to protect you from harassment at your place of work. This means your employer or colleagues cannot disclose your HIV status to others.
People living with HIV live with the reality that disclosing their status might result in discrimination and stigma. A decision to disclose your status is best done in consultation with people such as friends and HIV experienced counsellors who can provide adequate support.
The law states that your employer has to make every effort and adjustment to ensure you have an environment at your place of work where you are not at a disadvantage so you’re able to do your job properly. You may need to take time off for clinic appointments or need flexible start-finish times, for example.
Some people living with HIV still face workplace discrimination in New Zealand. You can complain to the New Zealand Human Rights Commission, but also check to see if there is a formal complaint procedure at your place of employment. It’s a good idea to think through the drawbacks involved in a complaints process – you may forfeit confidentiality around your HIV status. Be sure of what you want to ultimately get out of making a complaint.
Living with HIV doesn’t mean an end to having and meeting financial goals. Many say that once they’ve sorted through their treatment plan and are felling well again, they carry on as normal. There is nothing stopping you from buying a house or saving for a pension, for example.
HIV can be a bit of a cost. In New Zealand, HIV treatments are funded for all people living with HIV, regardless of their residency status or general eligibility for public healthcare. This means that you will only need to pay a prescription fee (usually around $5) for your meds and all your HIV appointments should be subsidized. This provision only covers HIV-related expenses, so if you need to see your doctor for other reasons you will still need to pay the full price if you are not a New Zealand permanent resident or citizen and your private insurance doesn’t cover this. This is because HIV infection is now a notifiable disease, which means that New Zealand public health agencies collect data on the new diagnoses to keep track of epidemiology. It does not mean that your HIV status is shared with anyone else.
When it comes to insurance, e.g., health, property or car, some insurance companies may refuse to insure you if you choose not to disclose your HIV status or are living with HIV.
Support organisations for people living with HIV
Organisations such as NZAF, Body Positive, Positive Women, Sexual Health Services and INA (a support organisation for Maori and Pacific people with HIV) are available for support and guidance. NZAF also provides support to African communities.
Contact details here.