Living with HIV

Here we have gathered information on living with HIV, how treatment works, the rights of people living with HIV and information on meeting other people living with HIV.

Care and treatment

Everyone living in Sweden is entitled to free treatment.

Free treatment

You have the right to free treatment. Doctor's visits, tests and medicines related to your HIV infection are free of charge. This applies to everyone living in Sweden, even if you are an asylum seeker or undocumented migrant. For other medical visits and dental care, you have to pay as usual.

Participation

You have the right to be involved in all decisions about your treatment, in consultation with your doctor and healthcare professionals. This means that you have the right to change treatment if you feel uncomfortable with it, and also the right to remain on a treatment that you are satisfied with. Your wishes and needs should be at the heart of the matter. You have the right to change your doctor. If you feel that you are being mistreated, you have the right to file a complaint against the healthcare system.

Rules of conduct

Your doctor will give you a code of conduct that you must follow. You have the right to discuss these rules and the right to an individual assessment. You can appeal against your doctor's decision to the infectious disease doctor in your region.

Mental and sexual health

You have the right to psychosocial support and the right to choose who you want to talk to. You also have the right to support in regards to sexuality and sexual matters. Not all clinics have a counselor, but you still have the right to see a counselor if you want to. Talk to your doctor.

Confidentiality & record keeping

Healthcare professionals and interpreters are bound by professional secrecy and confidentiality, which means that no one can talk about your status living with HIV or what is said during your visits. Comprehensive record keeping means that all healthcare providers you visit can see what care you have received. The aim is to facilitate treatment and provide better care; for example, it may be important to know how different medicines work together. If you do not want this, you have the right to block this information. Since your records cannot be read by different healthcare providers, you have a duty to inform them if there is a risk of hiv transmission. It may be a good idea to tell your HIV doctor if you are receiving other care. You also have the right to read your own medical records.

Equal treatment

You must not be denied the care you need because you are living with HIV. This also applies to private healthcare providers who are reimbursed by the Swedish Social Insurance Agency.

Combination treatment

There are currently around 20 HIV medicines in five groups on the Swedish market. By combining different drugs, you get combinations that are much more effective than individual drugs on their own. The drugs must also be given in combination to prevent HIV from becoming resistant to the drugs.

With proper treatment, the amount of virus drops to levels that are not even measurable. The immune system usually recovers to normal and infectiousness is minimized. The treatment provides 100% protection against sexual transmission. Research has not been able to provide the same clear results for breastfeeding and blood transmission, but the risk of HIV transmission through sex is zero.

Regular monitoring is important to detect treatment failure. In particular, the amount of virus is measured, but other tests are also needed to detect possible side effects.

Which combination is best?

Often, the doctor and the patient have to work together to find a combination that gives the best possible effect and as few side effects as possible.

A common 'first' combination is two NRTIs plus one NNRTI. Another common starting combination is two NRTIs together with a protease inhibitor.

In patients who have developed resistance to HIV medicines, efforts are made to find a combination of newer medicines to which the patient's virus has not developed resistance. In some cases, however, five or six drugs may be needed to keep the viral load down.

HIV medicines, group by group

  • Nucleoside analogues (NRTIs) are almost always part of a combination treatment for HIV. Nucleoside analogs work inside HIV-infected cells. The name, nucleoside analogs, is derived from how they resemble naturally occurring building blocks (nucleosides) in the genome of the virus. By first binding to an enzyme in the virus, the nucleoside analogs are built into its genome as 'fake building blocks'. This stops the formation of new virus particles.

  • Non-nucleoside RT inhibitors (NNRTIs) also act inside the HIV-infected cells. NNRTIs affect the same phase of the virus life cycle as the nucleoside analogs, but in a slightly different way. Virus replication is stopped by blocking an enzyme in HIV.

  • Protease inhibitors are a group of HIV medicines that have been available in Sweden since 1996. These medicines block the protease enzyme in HIV. This enzyme is needed to split large proteins into smaller ones in the formation of new virus particles. Blocking the splitting process prevents the virus from multiplying.

  • Integrase inhibitors work by preventing HIV from integrating into the DNA of the target cell that the virus is about to infect.

  • Entry inhibitors prevent the virus from entering the body's cells. These medicines therefore act earlier in the life cycle of the virus than other medicines. The first drug in the group is a so-called fusion inhibitor, which must be taken in the form of self-injections. Fusion inhibitors prevent the virus from infecting cells by blocking a protein that HIV releases to enter a host cell. The fusion between the virus and the host cell is prevented. So far, fusion inhibitors are used when other combinations of HIV drugs have been tried, for example when resistance and side effects occur. There are also other entry inhibitors that inhibit other receptors that viruses use to infect other cells.

Your rights and obligations

Law and legislation

Disability discrimination legislation applies to people living with HIV. Other rights are regulated in, for example, the Infectious Diseases Act and the Health Care Act. Here you can read more about the rights and obligations that apply to people living with HIV in Sweden.

  • You are entitled to free doctor's visits and tests under the Communicable Diseases Act. Your treatment, i.e. HIV medication, is also free. Other health care visits and treatments not related to HIV are charged as usual. You have to pay for your own dental care, even though poor dental health can be a consequence of medication.

  • You have the right to be involved in all decisions about your treatment in consultation with your doctor and healthcare professionals, according to section 2 of the Health Care Act. This means that you have the right to stop, change or renew your treatment if it makes you feel unwell. Talk to your doctor if you experience side effects from your medication that do not go away, such as headaches, fatigue and nausea. You also have the right to change your doctor if you wish. If you feel that you are being mistreated, you can file a complaint against the healthcare system.

  • You have the right to stay on a treatment that suits you well. You do not have to change if you are satisfied, even if your doctor wants you to try new medication. It is your wishes and needs that should be at the center and you are involved in decisions about your treatment.

  • In order to be healthy, it is also important to be mentally well. You have the right to psychosocial support to process how you feel and have the right to choose who you want to talk to. Not all places have a counselor, but you have the right to see a counselor if you want to according to Chapter 4, Section 1, paragraph 2 of the Communicable Diseases Act. Talk to your doctor about this.

    To have a good quality sex life, you have the right to support in regards to sex. sexuality and information on how to have safe sex.

  • Healthcare professionals and interpreters are bound by a duty of confidentiality and secrecy, which means that no one is allowed to talk about the fact that you are living with HIV or what is said during your healthcare visits. The same applies to voluntary organizations, which also work under a duty of confidentiality.

    Today, the health care system uses a single record, which means that all health care providers you visit can see what care you have received. The purpose of this is to facilitate treatment and provide better care - for example, it may be important to know how different medications interact. If you do not want medical records to be read by different healthcare providers, you have the right to block this information. You have a duty to provide information and need to tell people about blood infections as there is a significant risk of HIV transmission. It may be useful to tell your HIV doctor if you are receiving other care. You also have the right to ask to read your own medical records.

  • HIV is not a barrier to employment. You can work in almost every industry and with anything you want. You can work with food, children, in health care and in the restaurant industry. The only profession that does not employ people living with HIV is air travel. This is due to a rule from the European Aviation Authority, probably issued to ensure that air traffic controllers, pilots and other technical staff are always 100% alert and not under the influence of any medication for safety reasons. Otherwise, you never have to disclose whether you are living with HIV or not.

    Refusal of employment

    If someone denies you a job because you do not want to take an HIV test or do not disclose your HIV status, this is a reason to file a discrimination complaint. The same applies, of course, if you are dismissed or reassigned because of HIV.

  • You should not be denied the care you need because of HIV. This is regulated by the Disability Discrimination Act. Private healthcare providers who receive compensation from the Swedish Social Insurance Agency are also covered by this. Healthcare professionals are the ones who assess whether you are in need of care or not.

  • The Infection Control Act gives people living with HIV both rights and obligations. It regulates, for example, the right to free care and treatment and the right to advice and support. The Communicable Diseases Act covers some 60 diseases, about half of which can be life-threatening, cause long-term illness or severe suffering. These diseases are usually categorized as socially dangerous or generally dangerous and include, for example, salmonella, infectious jaundice, hepatitis A, B and C, tuberculosis, gonorrhea, chlamydia, syphilis and HIV. HIV is both notifiable and traceable. This means that you have to report that you have HIV to an infection control doctor. Infection control is about ensuring protection against the spread of infectious diseases.

  • Your treating doctor will decide on an individualized rule of conduct for you. The decision and rules are largely based on wether you are deemed to have a well-adjusted treatment. According to the Infectious Diseases Act, the rules may only relate to:

    1. restrictions on work, schooling or participation in certain other activities,

    2. a ban on blood and organ donation,

    3. prohibition of lending or otherwise transferring used injection tools,

    4. obligation to inform healthcare providers and those performing non-medical procedures,

    5. obligation to inform sexual partners,

    6. the obligation to behave in a way that minimizes the risk of transmission during sexual contact,

    7. an obligation to observe specific hygiene practices; or

    8. obligation to maintain regular contact with the treating doctor.

  • You do not need to disclose your HIV status when there is no risk of transmission. If you are on well-adjusted/effective treatment, you do not have to tell your sexual partners that you are living with HIV. For people who do not yet have undetectable levels of the virus, the obligation to inform before sexual intercourse remains. Before medical and dental procedures where there is a higher risk, such as surgical procedures, you need to inform that you have a "blood infection". If your treatment is working well, you do not need to disclose it for simple tests, including blood tests and injections. This is regulated in the code of conduct given to you by your doctor.

Plus plant

Peer support - talking to others in a similar situation

Being diagnosed with HIV involves medical, social, sexual and legal aspects. Knowing how to navigate and manage these aspects is difficult. Questions like Who should I tell? Dare I tell? How will they react? are common questions that most people with HIV have faced at some point.

Not dealing with these types of issues can easily lead to stress and shame. This can result in some people diagnosed and living with HIV becoming withdrawn and isolated, resulting in poorer mental health.

Peer support is an antidote to this, providing knowledge and tools to process issues, make decisions and become more confident in dealing with HIV. Peer support also provides access to a network of peers who are in the same situation. Together we can support and learn from each other and live a better life with HIV.

Positively Group South has developed a methodological material based on the work of Positively UK in the UK.

What is peer support?

Peer support is a method of sharing experiences and knowledge. The aim of peer support is to provide support and contribute to development, with the ambition that HIV should never be a barrier.

Peer support provides an opportunity to build understanding and community between peers. To meet someone living with HIV is to meet a person who can deeply understand and relate to the unique problems that come with an HIV diagnosis.

By listening to others who have gone through similar situations, you can develop your own ability to deal with HIV-related issues in your daily life.

In a peer meeting, there is not only the opportunity to feel community and empathy with each other, but also to practically share personal stories that both inspire and provide concrete everyday tips and advice. The exchange of experiences and knowledge also provides an opportunity to develop coping skills to deal with and respond to negative attitudes and ignorance about HIV in society.

Meet others living with HIV

Stories of living with HIV

Positiva Gruppen Väst collects knowledge and experiences about living with HIV on its website levamedhiv.org.

Twenty-nine project participants and some of their relatives are interviewed in the book Living Life. They are life stories that are different from each other, but precisely because they are different, together they show the everyday reality of HIV. The book is written by Lars Åberg.

The book's photographer, Martine Castoriano, involved the project participants in designing the images for the life stories. Those who chose not to be in the pictures have also been able to influence the design. This adds an extra dimension to the stories.

You are not alone. Around the country there are associations that work to provide support for people living with HIV. At HIV-Sweden we have an employed ombudsman. Get in touch if you have any questions.