YOUR RIGHTS

Do you identify as a woman, and are you living with HIV in Sweden? Below, we have tried to gather information about your rights in different areas. Some rights are valid for everyone living in Sweden, while other rights are specific for women and/or people living with HIV.

If you are currently undocumented or seeking asylum in Sweden, there are certain exceptions. You can read more about the exceptions under the very last title on this page.

 

Press the different titles to read more about your rights

In HIV healthcare

If you are HIV-positive you have the right to free doctor’s appointments, testing and treatment as long as such is related to the transmission of HIV. Treatment of other diseases is not free, and one will have to pay a normal patients’ fee for other visits. Medication which is prescribed by a doctor and which is assumed to reduce the viral load, shall also be offered to you free of charge. If you are HIV-positive you also have the right to psychosocial support (for example sessions with a psychologist or curator).

Your HIV doctor will give you some rules of conduct (”förhållningsregler”). According to the Swedish Communicable Diseases Act chapter 4 § 3, you have the right to appeal against (complain about) the rules of conduct. As an example, if you have undetectable HIV, you can ask the doctor to be exempt from the obligation to disclose your HIV status before having sex with someone.

Short summary:

  • All treatment and medication related to HIV is free.
  • You can talk to your HIV doctor about changing your rules of conduct. 

* diseases that are not included in Smittskyddlagen’s (the Swedish Communicable Diseases Act’s) list of dangerous diseases

Sources: Medibas, Hiv-Sverige/RFSL, Smittskyddslag (2004:168)

 

In regular healthcare

For healthcare that is not directly linked to HIV, you should go to your local health clinic (”vårdcentral”). When you visit your local clinic or other non-institutional healthcare facilities (öppenvård)*, you will have to pay a fee. The fees can differ depending on whether the visit is in primary healthcare, emergency healthcare or specialist healthcare. In Stockholm, you pay 200 SEK when visiting a doctor at your local clinic/vårdcentral and also in local emergency facilities (”närakut”). If you visit a hospital’s emergency facilities you pay 400 SEK, and seeing a doctor at a specialist clinic is 350 SEK. If you live in a different county than Stockholm county, the fees might be different.

Every time you visit an non-institutional healthcare facility, this is registered electronically. If and when you have spent 1100 SEK on non-institutional healthcare visits during a period lasting less than 12 months, visits will be free for what is left of the 12 months. When you have reached the 1100 SEK, you have what is called a ”Frikort” or ”Högkostnadsskydd” (”high-cost protection”). You can read more about it here.

There is even high-cost protection for prescription drugs (medication). The high-cost protection entails that one is not to pay more than 2200 SEK for  prescription drugs during a period of one year (12 months). Such a year is called a high-cost period (högkostnadsperiod).

Some visits to non-institutional healthcare are always free of charge. Some examples are:

  • Visits to maternity- and children’s healthcare clinics (”MVC” and ”BVC”)
  • Mammography screening in the age group 40 – 74 years
  • Visits to the school nurse (including the vaccines that are offered through the school healthcare)
  • Visits for children and adolescents (normally up to 20 years of age)
  • Non-institutional healthcare visits for patients over the age of 85 years

Short summary:

  • A normal visit to the doctor costs 200 SEK.
  • You shall not pay more than 1100 SEK for doctor visits per year.
  • You shall not pay more than 2200 SEK for medications per year.
  • Visits to the midwife if you are pregnant is free. Giving birth is also free.  

* non-institutional healthcare/öppenvård = all healthcare that does not require hospitalization

Sources: www:1177.se (1, 23 and 4)

 

In dental care

If you do not have any symptoms that you think are related to HIV, you can seek dental treatment in the general or private dental care sector. If you do experience dental problems related to your HIV infection, you should get a prescription to a specialized infection dental clinic.   

If you reside in Sweden, you have a right to a ”general subsidy” for dental care (”allmänt tandvårdsbidrag”) from the 1st of July the year you turn 22 years. The general subsidy entails that you receive a subsidy of 600 or 300 SEK from Försäksringskassan every year, earmarked for dental care. If you are between the age of 22 and 29, or over 65 years of age, you will receive 600 SEK. If you are between 30 and 64 years old, you will receive 300 SEK. You can save your general subsidy for one year, but not longer. You can read more about the general subsidy here.

There also exists a so-called special dental care allowance of 600 SEK per 6 months (1200 SEK per year). The special dental care allowance can for example be granted to persons who suffer from mouth dryness as a side effect of long-term medical treatment, or to persons with impaired immune system function due to medical treatment. Attestation from your doctor is required, as well as a saliva sample. Read more here.

As in healthcare, there is also a a high-cost protection system in place in the dental care sector. However, it is not designed in the same way as the healthcare high-cost protection system. In dental care, you will have to cover your own costs in total until you have paid 3000 SEK. If you need dental treatment for more than 3000 SEK, the amount that exceeds 3000 SEK will be subsidized (discounted) with 50%. The 50% subsidy is valid for your expenditure (costs) between 3000 and 15000 SEK. If you need dental treatment that exceeds the amount of 15000 SEK, the amount that exceeds 15000 SEK will be subsidized with 85%. The subsidy is based on a list of reference fees, thus it is recommended that you check if your dentist has fees that are lower or higher than the reference fees. Read more here.

Certain patients even have the right to ”dental care to patients with special needs of dental interventions”, which is financed via the county council. If you are in the target group for such aid, you can get high-cost protection similar to the one in the general healthcare sector (pay maximum 1100 SEK per year) applied to your dental care, or in some cases free or for a special fee. In a report from The National Board of Health and Welfare (Socialstyrelsen) in connection with the dental care reform that was introduced in Sweden in 1999, it is written that patients with ”symptom-causing HIV infection” should be counted as part of this target group.

Short summary:

  • If you do not have symptoms that you think are related to HIV, you can go to a normal dentist.
  • You get a subsidy (discount) from the state for going to the dentist. Adults get 300 SEK per year, young and elderly get 600 SEK per year.
  • If you have special dental problems, you can apply to get a special subsidy (1200 SEK per year).
  • If you have to pay a lot for your dental care (more than 3000 SEK), you can get financial help. The state (Försäkringskassan) subsidizes parts of your treatment (50% or 85% depending on your fees).
  • If you have a symptom-causing HIV infection, you can apply to get cheap or free dental care.

Sources: Noaks Ark, Försäkringskassan (12 och 3), Riksdagen, Socialstyrelsen

 

In maternity and obstetric healthcare

It is fully possible for HIV positive people to have children. If you are pregnant and not receiving any treatment for your HIV infection, there is a risk that HIV will be transmitted to the child. But if you are on well-functioning HIV treatment, the risk of transmission is minimal. If you are pregnant and if you are not already undergoing treatment, treatment with prophylactic drugs will be introduced in week 14-18 of the pregnancy. If you are pregnant and you already have a well-functioning treatment (undetectable viral loads), the treatment normally goes on as usual.

Maternity health clinics in Sweden are often referred to as MVC (”mödravårdscentral”). If you are pregnant, you have the right to visit the MVC on various occasions during the pregnancy. The first visit is usually scheduled between pregnancy week 6 and 12, and from then on you have a check-up every month. From the 30th week onwards, you will have controls every other week. You have the right to one free ultrasound examination during pregnancy weeks 18-20. You can even ask your midwife for help with getting in touch with others who are expectant parents if you are interested in social support. Visits to the MCV are always free, and you are able to chose freely between the different MVC’s, as long as they have availability. If you are not happy with your MVC, you also have the right to change it.

If you are pregnant and living with HIV, you have the right to extra follow-up during and after pregnancy. A team consisting of HIV doctors, gynecologists, pediatricians, midwives and curators will monitor you and the future baby. Your viral load will be measured every third months, and also shortly before delivery. The aim is to maintain the viral load below 50 copies/ml.

It is becoming increasingly more common for HIV positive people to chose vaginal delivery. If your treatment is well-functioning and if HIV-RNA are less than 50 copies/ml, vaginal delivery is recommended. You also have the right to chose a cesarean delivery if you feel more comfortable with that. If HIV-RNA copies are more than 50 copies/ml, cesarean delivery is recommended in week 37-38.

In Sweden, HIV positive people are recommended not to breastfeed. This is stated in the County Medical Officers’ infection prevention sheet about HIV.

If you wish to have children but find it hard to become pregnant, or if you do not wish to become pregnant through sexual intercourse, alternatives do exist. For example, you can do a home insemination. If you are HIV negative while your partner is HIV positive, you have a right to IVF treatment and sperm wash (if applicable). In Sweden, IVF or insemination is not permitted if the one who wants to be pregnant is HIV positive. However, at ”Reproduktionsmedicin” at Karolinska Huddinge in Stockholm, there is a research project that may give this opportunity. You can read more about it here. HIV positive people do have the possibility to do IVF or insemination in some other EU-countries, for example in Denmark.

If you wish to terminate an ongoing pregnancy (do an abortion), you can get in touch with an abortion clinic or gynecological clinic. It is the pregnant person who decides if an abortion should be made or not. You have the right to do an abortion until the 18th week of pregnancy. You do not have to tell or defend to anyone why you would like to do the abortion. If you do an abortion, the cost is the same as any specialist doctor visit, approximately 350 SEK. A fee of 200 or 350 SEK can be added if medical or surgical abortion is done at a clinic.

Short summary:

  • Today it is possible for HIV positive people to be pregnant or to make someone pregnant, without any risk that the baby will have HIV.
  • HIV is no obstacle for having and giving birth to children, regardless of whether it is you or your partner that has HIV.
  • All healthcare and treatment at the MVC is free
  • If you are pregnant and HIV positive, you will get follow-up from a special team, and your viral load will be measured regularly during the pregnancy
  • If the viral load is low (less than 50 copies per ml), you can chose to deliver vaginally
  • Breastfeeding when HIV positive is not recommended in Sweden
  • IVF of a person living with HIV is not permitted in Sweden, but it can be done privately, for example in Denmark. If you live in Stockholm you may also be eligible for this research project.
  • In Sweden you have the right to do an abortion up until the 18th pregnancy week, without explaining to someone why you want to do so.

Sources: HivUpdated, 1177.se, InternetmedicinBristol-Myers Squibb, Noaks Ark, Smittskyddslagen, Avgiftshandboken SLL, Smittskyddsläkarföreningen

 

At work

You have the right to chose the career or job that you want, regardless of your HIV status. Your HIV doctor decides whether you will be given rules of conduct (”förhållningsregler”) in relation to your job, but it is very uncommon that such rules are given. In the uncommon case that you have to leave your job due to regulations in the Swedish Communicable Diseases Act, you have the right to ”Smittbärarpenning” (economic compensation) from Försäkringskassan. For certain jobs, for example within the police and military forces, applicants are required to fill out health declarations. Certain countries do not grant work permits to people who are living with HIV. You can read more about visa and permit restrictions on this link.

In Sweden, it is not allowed to discriminate against someone because they have HIV. If you experience discrimination in your workplace due to your HIV status, you should contact the Discrimination Ombudsman (DO).

Short summary:

  • Being HIV positive is not a reason for losing your job. If you are fired from your job because of your HIV diagnosis, this is discrimination, and you should report your employer to the Discrimination Ombudsman.
  • In some special cases, HIV positive people who have contact with blood in their work, can face restrictions. If such restrictions affect your ability to work, you have a right to economic compensation.

Sources: Noaks Ark, Försäkringskassan, Försäkringskassan (2)Discrimination OmbudsmanThe Global Database on HIV related travel restrictions

 

As a young person, pupil or student

As a young person, you can contact the youth guidance centre (”ungdomsmottagning”) in your city or county if you have questions concerning sex and relations, prevention or bullying. There are different youth guidance centres in all of Sweden’s counties, and the help and guidance one can get there is always free. The age limit for those who can receive support from the youth guidance centres is different between different counties and even between different centres. Normally, the upper age limit is 23 or 25 years. At the youth guidance centre, you have the right to guidance concerning prevention, and you can also get emergency prevention (morning after-pills). You do not have to worry about getting reported if you have had unprotected sex – the people who work at the youth guidance centres are bound by professional secrecy. You can read more about the youth guidance centres in Stockholm here. You can also find guidance in English online, through UMO.

As an HIV positive person, you have the same right to education as everyone else. You should be able to attend school and study at the university without any restrictions. If your are experiencing discrimination in school or at your educational facility because of your HIV status, this is a breach of discrimination laws. You should contact the Discrimination Ombudsman (DO) in the case of discrimination.

Every Swedish municipality has a responsibility to provide schooling to all children according to their needs. A municipality can never ignore such responsibility with the excuse that a child has HIV. The parent(s) of an HIV positive school child is not obliged to inform the school about the child’s HIV status. According to Stockholm county’s guidelines for pre-schools and schools, the child’s HIV doctor should inform the parent(s) that it is recommended that parent(s) inform the school nurse that the child has a blood borne infection. In other words, the HIV doctor is obliged to inform the parent(s), but the parent(s) is not obliged to tell the school or school nurse.

Short summary:

  • If you are under the age of 23 or 25, you have the right to free counseling concerning prevention, and also to emergency prevention, through your local youth guidance centre (ungdomsmottagning)
  • You have the right to study without facing discrimination, and neither you nor your parent(s) have a legal obligation to disclose your HIV status in schools.

Sources: Stockholms Stad, lista över ungdomsmottagningar i Stockholm, Vårdgivarguiden, UMO

 

With sickness compensation

Of those who got their HIV diagnose before 1996, many were granted what was then called ”early retirement pension” (”förtidspension”), and which is now called sickness compensation (”sjukersättning”). This is not the same as sickness benefit. Sickness compensation is a compensation for people who will probably never be able to have a full-time job due to sickness, injury or disability. If you have sickness compensation, you can have that until the month that you turn 65 years old. In order to have the right to sickness compensation, you have to be insured in Sweden (be part of the public social security insurance). It is also a requisite that you were insured in Sweden when you got sick or got the injury/disability. You are part of the Swedish public social security insurance if you live or work legally in Sweden.

If you live in another country, you can still receive sickness compensation if you have lived or worked for a sufficient amount of time in Sweden before moving to another country. If you live in a different EU or EES country, you should contact the pensions office there. Otherwise, you can turn to the Swedish Försäkringskassan.

If you have had sickness compensation for at least one year and then decide to work for a try-out period, you can apply for something called resting sickness compensation (”vilande sjukersättning”). With resting sickness compensation, you maintain your right to sickness compensation during a certain time period, enabling you to try to work. If you work, you will receive 25% of your sickness compensation in addition to your wage. You can have a resting sickness compensation for a maximum of two years.

Short summary:

  • If you cannot and probably never will be able to work due to sickness, injury or disability, you could have the right to sickness compensation (”sjukersättning”).
  • If you have lived or worked in Sweden, you may have the right to sickness compensation even if you live in another country.
  • You can have a ”resting” sickness compensation for maximum two years.

Sources: Försäkringskassan

 

As a retired person

In Sweden, there is no fixed pension age, but you can begin to claim all or part of your pension from the month you reach the age of 61. You are entitled to work until the age of 67, but if your employer agrees to it, you can continue to work even longer.

Everyone who has worked or lived in Sweden will receive a general pension, but how much money you get depends on how much you have paid in taxes. The pension is based on one’s income. However, income does not only mean pay. For example, unemployment benefit, sickness or activity benefit, sickness compensation and parental benefit also counts as income.

Many people who were diagnosed with HIV before 1996 when the effective HIV treatment came, received sickness compensation (formerly known as ”early retirement”). Sickness compensation counts as income and is therefore pensionable*, but many people experience the pension as insufficient. Persons with low pension can apply for additional housing allowance and elderly support.

If you have had little or no income in Sweden, you will receive a low income-based pension, or none at all. However, you may be entitled to ”guarantee pension” (”garantipension”).  In order to be entitled to a guarantee pension, you must have lived in Sweden for at least three years. In order to get a full guarantee pension, you must have lived in Sweden for at least 40 years.

Knowledge network for women living with HIV organized a seminar on the subject of pensions and rights in September 2017. You can read more about what was brought up and discussed during the seminar here.

Short summary

  • You are entitled to start claiming your pension from the age of 61.
  • General pension is based on your income, such as salary, different forms of compensations, allowances and benefits.
  • If you have a low pension, you can apply for extra allowance and support.
  • If you have had low or no income at all in Sweden, you may still be entitled to a guarantee pension.

* pensionable income means the income that your pension is based upon, and is often related to how much you have paid in taxes.

Sources: : Pensionsmyndigheten (1, 2, 3 and 4)

 

For undocumented or asylum seeking persons

In Sweden today, it is assumed that there are between 10,000 and 35,000 people who are undocumented or without legal permit to reside in Sweden. According to a law from 2013, you who lack permission to reside in Sweden are entitled to some county council-funded (landstingsfinansierad) healthcare (Law 2013: 407). If you are 18 years or older, you are entitled to acute health and dental care which cannot wait*, maternity care, abortions and abortion care and contraception counseling. The different county councils may also choose to provide healthcare beyond what the law subscribes. Undocumented children and adolescents under the age of 18 are always entitled to full health care, regular full dental care, and medicines (ie, care to the same extent as the one that is offered to residents in the county). When you are undocumented or if you are seeking asylum, there are special (discounted) patient fees. Patient fees are governed by a 1994 regulation, and you can find them here. The high-cost protection for healthcare does not apply to people who are undocumented.

All asylum seekers are offered a free health assessment. At the health assessment, a voluntary HIV test is offered. If you are diagnosed with HIV, you have the right to treatment. All HIV positive people in Sweden receive free healthcare in relation to HIV. This also applies to those who are undocumented or asylum seekers. You cannot be deported or obliged to leave the country for being HIV positive.

If you do not understand Swedish, you are entitled to receive free assistance from an interpreter when visiting the healthcare or dental care. Healthcare professionals and interpreters are bound to professional secrecy.

Regarding dental care fees, an acute treatment for asylum seekers is 50 SEK at Folktandvården or at a dental practice which the county council has an agreement with. For those who are undocumented, acute dental treatment also costs 50 SEK. The treatment should then be done by dentists who are affiliated with the state dental care subsidy system. Asylum seeking and undocumented children and adolescents under the age of 18 are entitled to full dental care, free of charge.

All asylum seeking and undocumented children have the right to attend school from the autumn term of the year that the child turns six. In order to have the right to attend upper secondary school, asylum seekers must begin their studies before they turn 18. While their parents study or work, asylum seeking children (who have turned one) are entitled to attend preschool. From the autumn term of the year in which the child turns three, he or she is also entitled to 15 hours of preschool per week. This is free of charge.

Most often, undocumented persons in Sweden are not entitled to financial support such as allowances and benefits. However, in the Social Services Act there is room for giving financial support to undocumented persons. Some municipalities for example provide economic support for undocumented children, some support to undocumented adults in urgent situations, as well as shelter for undocumented women in vulnerable situations.

Short summary:

  • As undocumented in Sweden you are entitled to acute care, maternity care, abortion, contraception counseling, as well as care and treatment in accordance with the Infectious Disease Act (Smittskyddslagen). This includes HIV treatment.
  • HIV treatment is free for everyone, regardless of residence status.
  • Health and dental care fees are subsidized for undocumented and asylum seeking persons in Sweden.
  • Undocumented and asylum seeking persons are entitled to free interpreters when visiting and being in contact with healthcare.
  • Asylum seeking and undocumented children have the right to attend school.
  • Some municipalities offer financial support for undocumented persons. 

*Read more about what is included in ”care which cannot wait” here.

Sources: Regeringskansliet/Lagrummet.se(Förordning 1994:362)Regeringskansliet/Lagrummet.se (Lag 2013:407), Regeringskansliet/Lagrummet.se (Lag 2008:344), 1177.seRöda Korset, Migrantinfo.seFlyktninggruppernas Riksråd/FARR, RFSL, Vårdgivarguiden, Socialstyrelsen

 

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