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Merry Christmas and a Happy New Year from the Knowledge Network for women who are living with HIV!
Throughout 2019 we will keep hosting seminars, meetings, workshops and the like. Keep an eye on our site for upcoming events.
Stigma, quality of life and what’s important for women living with HIV in Sweden today
On the 8th of November, Kunskapsnätverket together with PG Väst and Noaks Ark Göteborg och Västra Götaland organized a workshop in Gothenburg. Maria Lindberg Reinius, nurse and researcher at the Karolinska Institute (KI) presented results from her thesis on HIV related stigma and talked about quality of life for people living with HIV in Sweden today.
This is why the workshop on the topic, What is important for women who are living with HIV today?, took place. The participants took up the importance of meeting with other women living with HIV and that research om women living with HIV should be a priority. Read more
Maria Reinius stated that lately, there has been discussions on a fourth 90 % goal: the goal on life quality. Sweden is one of the first countries in the world to achieve the UNAIDS 90-90-90 goal which means that 90% of everyone living with HIV should be diagnosed, that 90 % of these should be having treatment and that 90% of these should have an undetectable viral load and therefore be living with untransmittable HIV.
Maria Reinius is today a participant in a research group working with quality of life for persons living with HIV. Through questioners and interviews with persons living with HIV (during the research) it has been established that despite access to medicines the quality of life for people living with HIV in Sweden is lower than average. Maria Reinius thesis shows that the quality of life in relation to health for people living with HIV who see themselves as stigmatized is lower/worse. A lot of those questioned in the study said that even though they don’t really dwell on their HIV status, a good number of them have experienced a difficult social status where they are constantly fighting the thoughts of whether they should tell about their status or not.
Knowledge of untransmittable HIV must reach the general public
To decrease the stigma around HIV, Maria Reinius is adamant that the public be well informed that undetectable viral load equals untransmittable HIV, U=U and also to look over the laws and regulations that can be discriminatory for people living with HIV. It is also important to work on same goals that will better the life of people living with HIV and be able to measure the quality of life plus their experiences on stigma over time.
The importance of meeting other people living with HIV
During the workshop with the theme ”What is important today for women living with HIV?” the participants listed the following points:
- To be ale to meet with other girls/women living with HIV.
- To be respected and received professionally.
- That lessons on HIV should be included in the primary level school curriculum.
- Women should be given a priority in research.
- Continuous update on knowledge regarding HIV.
- To make women living with HIV more visible, (goes together with respect, acceptance and reception).
- To emphasize health issues especially regarding the physical and social aspects.
- To react with respect and understanding to women living with HIV.
- To talk about love.
- To talk about meeting women with multiple illnesses/sicknesses with respect.
Ex: When one meets a doctor they want to be met by knowledge and not one who is illusive because then there can be confusion when one has multiple diagnosis. Most doctors are professionals in one area and it can take a lot of time and energy to have to visit an array of different doctors to get a complete diagnosis. A problem when the health system is more and more specialized.
- To be able to go to gynaecologists with knowledge of HIV in women.
If you did not have the opportunity to participate in the evenings lecture and have questions, ideas or thoughts on the subject in question, you are welcome to send them to email@example.com
Menopause – an inconvenience or new possibilities?
Menopause is the period when one transits from having periods and being fully fertile to stopping having periods. The decrease of oestrogen in the body causes an acute hormone imbalance. For many women this is an inconvenience, a bother, but for many too it can be something good.
On the 25 th of October 2018, midwife, Åsa Enervik and sexologist, Suzann Larsdotter, gave a lecture at Kunskapsnätverket on the positive and negative aspects of menopause and what one could do to decrease the negative effects. Read more
Suzann and Åsa talked about the various situations before the onset of menopause. The experiences are varied and can be very difficult both emotionally and physically. The different changes in the body can be uncomfortable and uncontrollable, for ex the onset of hot and cold sweats. One of the most common inconveniences of menopause is the huge temperature changes in the body. Dry mucus membranes and sleep disorders are also some of the common problems.
Even though many experiences some form of inconvenience with menopause, it does also have positive sides. For example, if one has had very difficult, painful periods with heavy bleeding, menopause can actually be a relief.
When does one get menopause and how long does it last?
Åsa proclaimed that the length of time for menopause is very individual. There are no distinct/obvious limits for when it starts or stops, but for most women the onset is between the ages of 40 – 55 years. One can actually say that, menopause starts about five years before the last menstruation, and can continue over a long period of time, but for many, the possible negative effects stop five years after the last menstruation. Menopause is actually the term used to describe the period after the last menstruation. When one has gone a couple of years without menstruating, then the logical conclusion is that one has menopause. Many women have irregular periods that come and go over a very long time.
Menopause party or menopause crisis?
The physical inconveniences with a direct connection to menopause and which is also connected to the decrease of oestrogen production is night sweats, sleep disorders, temperature changes and dry mucus membranes in the vagina. Others may experience even extreme mood swings, memory loss, pain in the joints dry skin, worrying and reduced sextual activity. When we consider women with HIV it can be very difficult to know which disorders are connected to menopause and which ones are caused by the side effects of both medication and/or HIV, but it can also be that the two intensify each other.
The level of discomfort varies from person to person. Some experience a lot of discomfort while others hardly feel a thing. Because menopause discomforts can be hereditary, it is possible to predict how much discomfort you are going to get just by watching your mother or grandmother, but even this can differ.
Åsa and Suzann explained that even though discomfort is common, some women actually feel better in a lot of ways when they start menopause. One can get a heightened self-esteem, be more self-assured because one has more life experiences or that one has a more relaxed relationship with one’s body. One can or may have an increased sexual desire and feel that it’s a relief not to have to worry about being pregnant.
What can one do to decrease the discomforts?
If one is suffering from menopause discomforts then one should get in touch with a doctor who would then prescribe Hormone Replacement Therapy (HRT). Hormone treatment means the application of more oestrogen in the form of tablets, plaster or gel. For many, the treatment is most effective when started early and can help against warm flashes, sweating and sleep disorders. With disorders in the vagina or urinary tract, for ex. dryness or itchiness, a local treatment, vaginal cream, suppositories or vaginal ring can be used.
Some women are afraid to use HTR’s because it is said that oestrogen heightens the risk for cancer and blood clots, but according to Åsa one should not worry about this because before starting an oestrogen therapy, a lot of tests are done to ensure that the individual has not previously had blood clots or a risk thereof, breast cancer or cancer in the uterus membranes, or that one has not had vascular spasms, heart attack or stroke. An alternative to medicinal therapy can also be alternative therapy in the form of mindfulness and relaxation. These exercises focus om breathing technics and can actually decrease the discomforts and increase the wellbeing. Even physical exercises have proven beneficial to menopausal disorders, especially exercises where you get very sweaty and must shower. A 45 minute training three times a week for the big muscles groups, alternated with brisk walks is a great help to many.
Menopause, lust and sex
According to the World Health Organization , (WHO) sexual health is a right. Surveys actually show that older women actually want more sex and intimacy contrary to the belief that they have lost interest in sex. At the same time there are studies that show statistically that women actually experience a decrease in sexual lust in connection with menopause, but that it can depend on psychological or social aspects like one being uncomfortable with one’s body or that dry mucus membranes cause uncomfortable sex even if one is horny. Suzann thinks that if one has decreased or no sexual lust, one should start by asking themselves, ”Do I have the lust to have lust?” If one has the lust to feel lust and does not have it then there is a problem, otherwise there is no problem.
The older one gets the more time it takes to get aroused. This can be caused by aging in the blood vessels. That’s why its important to be patient, giving both yourself and your partner more time. It is also very beneficial to talk about and communicate about sex, what one wants and how you want it, and also by trying to be intimate in other ways, ex kissing and hugging can be very good.
Suzann compared this to if your eyes are failing or your ears don’t hear too well, then you get yourself eye glasses or a hearing aid. One can use the same thought process in lust and allow themselves to get help with their sex life. It can be anything from a lubricant, a vibrator, and other sex toys or arousing erotic novels, pictures or films.
If you did not get the opportunity to participate at the evenings lecture, and you have questions either to Kunskapsnätverket or to Suzann and Åsa then you are welcome to send them to firstname.lastname@example.org
– We shouldn’t have to educate healthcare providers when seeking help
Many women that the Knowledge Network has been in touch with have experienced meeting healthcare personnel that are afraid, ignorant and prone to asking inappropriate questions. On Tuesday the 12th of June, the Knowledge Network arranged a seminar on rights, discrimination and how one is treated in the health sector. During the seminar, women could access new knowledge and at the same time share their stories. Read more
The seminar on the 12th of June consisted of a presentation on rights within Swedish healthcare (see presentation), a conversation with lawyer Åsa Cronberg about discrimination and concrete discrimination cases (see video), as well as a short workshop focusing on the participants’ own experiences. Parts of the information concerning rights can also be found on the Knowledge Network’s sub-site “Your Rights”.
Some time before the seminar, the Knowledge Network sent out an anonymous survey to women who are living with HIV, which contained some questions about experiences with the healthcare system. As of today, twelve women have shared their experiences through the survey. We will leave the survey open so that more women get the opportunity to share their experiences. You can find the survey here.
Women’s experiences in Swedish healthcare
Through the aforementioned survey and the workshop conducted in relation to the seminar, we have gained insight in HIV-positive women’s experiences in different parts of the Swedish healthcare system. How are women living with HIV treated in HIV/infection healthcare, general healthcare, within private healthcare, dental care and maternity care?
Overall, many women seem to be satisfied with how they are treated within HIV/infection healthcare. All respondents in the survey state that they are “pretty satisfied” or “very satisfied” with how they have been treated. Women’s testimonies show that doctors dare to think outside the box in order to secure their well-being, and personnel at Venhälsan in Stockholm are given special credit for their approach.
In general healthcare, experiences are more mixed. About half of the respondents state that they are “pretty satisfied” or “very satisfied” with how they have been treated there, while the rest have rated the treatment as “mediocre” or “pretty bad”. Women report:
”Some have perceptions about how to treat one and what one is allowed to talk about, about how I got [HIV] for example…”
“They told me that everyone should wear gloves when testing patients, but that they did it now because they knew I was HIV-positive”
“A doctor of ’the old school’ refused to shake my hand”
Similar stories from general healthcare arose during the seminar, where many women stated that they have been interrogated about how they got HIV, and even accused or scolded for choosing not to disclose their HIV status to healthcare personnel.
Within private healthcare, women’s experiences are also diverse. About 30% of the respondents state that the way they have been treated has been “very good”, while 40% and 30% have had “mediocre” or “pretty bad” experiences respectively. One woman expresses herself in the following way:
”I was going to do a laser operation on my eyes. The first provider didn’t want to do it because of my HIV, while the other provider had no problem”
Another woman said that a private provider refused to perform acupuncture on her due to her HIV status.
Within dental care, experiences are relatively positive, but there are also aspects that could be improved here. A majority (70%) of the women who have participated in the survey reported that the way the have been treated in dental care has been “pretty good” or “very good”. The rest of the participants have been treated in a “mediocre” or “very bad” manner. Some women express themselves in the following way:
”It has been different, depending on where I’ve gone. Now I go to Aqua Dental, and they are amazing”
“She [the dental hygienist] started scolding me about my responsibility to inform, and then she put on gloves very quickly”
“They are providing me with correct care, but I can feel their fear and it turns silent and the ambience in the room is strange. But I don’t care. I feel bad for them”
The women who participated in the seminar reported that a lot has improved within dental care, especially when comparing to the fear and ignorance that dominated in the 80s and 90s.
In the survey we also asked about women who are living with HIV’s experiences in maternity care. Half of the respondents experience being treated in a “very bad” or “pretty bad” manner, while the rest are equally divided between “mediocre”, “pretty good” and “very good” experiences. One woman writes:
”I was pregnant a long time ago. I felt as if they wanted me to do an abortion”
Another woman says that staff at the delivery room asked her very inappropriate questions.
Even though these testimonies cannot say something about how all women who are living with HIV are treated in the Swedish healthcare system, one can draw the conclusion that there is a lot of work to be done in many parts of healthcare. As one of the women from the survey states it: ”we shouldn’t have to educate healthcare providers when seeking help”.
Are women living with HIV experiencing discrimination?
Receiving bad treatment does not necessarily mean that one has been a victim of discrimination. However, if one has been “disfavored” or “violated against” due to one’s HIV status, it can certainly be the case that discrimination has taken place. When asked whether they consider themselves being victims of discrimination within healthcare due to HIV, seven out of twelve women answered yes. All of the women who participated in the seminar also considered that they had been discriminated against.
The survey participants that have experienced discrimination within healthcare due to HIV, have experienced this within maternity or gynecological care, within private healthcare or at eye clinics. Under half (approx. 40%) of the participants denounced or reported the discrimination.
But what should I do if I experience discrimination in healthcare? To bring answers to this and related questions, we invited lawyer Åsa Cronberg to come speak at the seminar. Among other things, Åsa talked about the Swedish Discrimination Act (Diskrimineringslagen) and the grounds for discrimination. According to the Discrimination Act, disfavoring (unfair treatment) can only be termed discrimination if it happens because of gender, transgender identity or expression, ethnicity, religion or other belief system, disability, sexual orientation or age. As HIV is classified as a disability, disfavoring someone due to their HIV is potentially punishable.
There are various entities you can report to if experiencing discrimination, depending on the sector in which the discrimination has taken place. If you have experienced discrimination in health care, you can either turn to IVO (the Health and Social Care Inspectorate), the Equality Ombudsman (Diskrimineringsombudsmannen/DO), or the Patient Advisory Board. If you find it difficult to report a discrimination case alone, you can seek help from Swedish HIV organizations that offer support and/or legal assistance, such as Posithiva Gruppen or Hiv-Sverige.
Concrete discrimination cases – real life examples
Åsa Cronberg presented two specific discrimination cases that she has worked with. The first case concerned violation of confidentiality in health care, and the other one was a more ”classical” discrimination case.
In the first case, an asylum-seeking woman was hospitalized due to a depression that occurred after she received her HIV diagnose. The woman was to be offered accommodation in a women’s shelter, and a nurse told the responsible at the shelter that the woman was HIV positive. The person in charge at the shelter, in turn, told social services. Afterwards, social services contacted the asylum-seeking woman and asked her to bring the responsible person at the shelter with her to her HIV doctor. The woman denied to do this, after which she was scolded by the social services employee on the phone. Fortunately, the woman recorded the whole phone conversation, and brought the recording to Åsa. Åsa took up the case, and the woman police reported the case as violation of confidentiality.
The case was also reported to IVO. IVO does not only work with injuries or illness that have occurred in healthcare – they can also investigate complaints about ”healthcare events that seriously and negatively affect or threaten patient self-determination, integrity or legal position”.
The case is under investigation and is nowadays in the hands of the police. Åsa and the woman are still waiting for answers from the police.
The above case is an example of breach of confidentiality. Åsa emphasizes that it is illegal to violate the obligation of confidentiality and that all healthcare professionals are bound to secrecy. This means that no healthcare professional can share information with their colleagues unless those colleagues are responsible (part of the same treatment team) for the very same patient. Other examples of breach of confidentiality are when an unauthorized person reads a patient’s medical record, or when patient information is given out to relatives in cases where the patient has not given their consent.
There are some exceptions to healthcare personnel’s confidentiality obligation, which means that healthcare personnel may disclose information about you even though you have not consented to it. For example, healthcare professionals are obliged to provide information if the police, court or prosecutor is requesting such. The same applies if social services demand information as part of an ongoing investigation. If a healthcare worker suspects that a child is in danger, they are forced to break their own obligation of confidentiality by reporting this to social services. Åsa also informs that the confidentiality of one’s medical records is automatically breached if you apply for sickness benefit (sjukpenning) through the Swedish social insurance system (Försäkringskassan).
Discrimination within social service
The second discrimination case that Åsa presented during the seminar, also concerned a woman who was to live in a shelter. In initial conversations between the shelter and the woman, the staff asked the woman if she took any medication, to which she responded that she was taking HIV medication. The manager of the shelter then informed the woman that she could not live there because they shared the same toilet, ate together and so on. Instead, the woman was offered an isolated accommodation at a campsite. The woman’s doctor called the shelter and criticized them for their lack of knowledge about HIV and undetectable HIV, but the staff still refused to offer the woman accommodation in the regular shelter.
With the help of Åsa, the case was reported to the Equality Ombudsman (DO), as discrimination on grounds of disability. DO investigated the case from the point of view of the woman and the shelter respectively. Since the Discrimination Act is not only limited to the aforementioned grounds for discrimination but also to specific sectors in society, the shelter tried to deny that they were part of the sectors defined in the Act. Among the sectors of the Act we find healthcare providers and social services. The DO concluded that the shelter was indeed to be counted as a part of social services, which led Åsa and the woman to win the case. The shelter was sentenced to economically compensate the woman as well as cover the legal costs.
Åsa concludes that all providers who carry out some kind of healthcare, must be prepared to offer services to all kinds of people. If situations occur where providers lack knowledge, they should ask experts in the field instead of acting in ways that could be discriminatory. Discrimination must be taken seriously as it is a ”violation of a human being – of human worth itself”, says Åsa.
See the recording of Åsa Cronberg’s lecture here.
Knowledge makes us stronger
Through women’s stories and Åsa’s professional experience, we have gained new knowledge about how women living with HIV are treated in the Swedish healthcare system. We have also identified that there are many areas in which healthcare staff’s knowledge is insufficient. The Knowledge Network will continue to work towards ensuring that information about rights reaches out to women who are living with HIV, but also that knowledge about women and HIV increases among health care staff. By demanding respect for our rights and freedom from discrimination, we can influence how women living with HIV are being treated in healthcare in the future.
If you could not find the information you were looking for regarding legislation, rights, treatment and discrimination in healthcare in the above text nor on the “Your Rights” page, please feel free to contact us at email@example.com and we will help you find the information you need.
If you have been subjected to discrimination and need assistance in taking your case further, please contact the legal counselling department at Hiv-Sverige. Alternatively, you can report discrimination directly to the Equality Ombudsman (download the application form here), to IVO (send complaints online here) or to the Patient Advisory Board (access online contact form here).
International Women’s day 8th of March
Many thanks to all the women who sent us their stories on the occasion of the International Women’s day on the 8th of March. All images and stories can be found here.
IVF: A new opportunity for involuntary childless HIV-positive women in Sweden
A new research project in Stockholm can finally give HIV-positive women with fertility issues access to the fertility treatment method called “IVF”, commonly known as “test tube fertilization”. Read more
Recently, the branch for reproductive medicine (“Reproduktionsmedicin”) at Karolinska University Hospital in Huddinge, released a patient information on Assisted Reproductive Technology (ART) for HIV-positive women and men (read the original document in Swedish here). IVF (In Vitro Fertilization), or test tube fertilization, is a form of assisted reproductive technology. This kind of treatment has been available for HIV-positive women in Denmark for many years, but not in Sweden.
Now however, Reproduktionsmedicin at Karolinska Huddinge in Stockholm wants to offer IVF treatment to HIV-positive women through a research project. The research project was first rejected by The Central Ethical Review Board in March 2017, but in May the very same year the project was accepted. Starting 2018, Reproduktionsmedicin has gone public with their call for participants to the project. Reproduktionsmedicin at Karolinska Huddinge is the first and only entity in Sweden that can offer IVF for women who are living with HIV.
Who can take part?
The research project targets (heterosexual and lesbian) couples in which the woman who wants to carry the child is HIV-positive and undergoing successful treatment. Successful treatment encompasses that one has low or undetectable viral loads. The woman also has to be of fertile age.
Infectious disease doctors at Karolinska University Hospital assess which patients are suited for treatment. All couples should comply with criteria for assisted reproductive treatment following Stockholm County Council’s (Sll’s) rules. If treatment is done with donated sperm cells, the couple must also comply with the criteria from The National Board of Health and Welfare (Socialstyrelsen) 2009:32.
The woman’s egg is fertilized by micro injection of partner’s or donated sperm cells accordning to normal routines at Reproduktionsmedicin. Women who get pregnant through the project will later receive follow-up according to normal routines for all HIV-positive women. Maternity clinic controls are conducted at a specialized clinic at Karolinska University Hospital in Huddinge.
For more information about participation in the research project, one can call Reproduktionsmedicin at 08 585 875 06. Other contact details to the ones responsible for the project, can be found in the patient information document.
You can learn more about pregnancy, Assisted Reproductive Technology and maternity healthcare for HIV-positive women in this video made by the Noaks Ark National Association. You can also read more about HIV-positive women’s rights to maternity- and obstetric healthcare on the Knowledge Network’s very own site “Your Rights”.
Merry Christmas and a happy new year!
The year 2017 is coming to an end, and on that occasion, the Knowledge Network for women who are living with HIV would like to present a short summary of what has been going on during the last couple of months. Read more
Many things have happened during the fall. On the 12th of September we hosted the year’s first “temakväll” (seminar) on the topic of “Pensions, Rights and Starting your own business”. We invited Birgit Karlsson from the Swedish Pensions Agency, as well as the business-woman Cissi Centerwall. Fifteen women participated, and the seminar was video recorded. You can read more about the seminar on this page, or watch the video here.
A few weeks later, we finally finished the Knowledge Network website that you are currently browsing. On the 13th of October the time had come for the network’s release party and mingle. Approximately 40 guests showed up, three women shared their personal stories, and a woman from the network presented some songs. The ambience was very good indeed! You can read more about the release under “latest news” from October, or you could have a look at the video recording here.
Later the very same month, the project group travelled to Milan in order to participate in the 16th European AIDS conference. It was an intense and inspiring experience, and various questions concerning women and HIV were to be found in the programme. You can read our own summaries of the women-centered lectures that we participated in here.
On the 14th of November, we arranged a new “temakväll” (seminar) bearing the title “What is stigma?”. The scientist Maria Lindberg Reinius came to the Knowledge Network to talk about her research, followed by a group discussion. Detailed documentation and more information about the seminar can be found on this page, and a video recording from the seminar can be found here.
During the seminar that the Knowledge Network arranged in September, many women had questions concerning pensions. Birgit from the Swedish Pensions Agency therefore offered to get in touch with some of the agency’s service advisors asking them to pay the network a visit. Words turned into action, and on the 21st of November the Knowledge Network arranged a “Pensions Day” in cooperation with PG. Three counselors stayed for a whole day at our premises, providing 45 minutes of individual counseling for a total of 16 participants.
The Knowledge Network’s last activity before the end of 2017, was a movie night. We screened the movie “Life Support”, and helped by questions for debate inspired by the movie, we had a conversation about the future development of the Knowledge Network. You can read a summary including the thoughts and reflections that emerged during the conversation via this link.
Apart from hosting seminars, workshops, events and meetings during the fall, we have also been persistent in our aim to document the Knowledge Network’s activities in text, photography and/or video. We have also developed evaluation methods for our activities, as well as made a survey for women who are living with HIV (in Sweden). Women in the target group are welcome to answer the survey here.
So far, activity-specific evaluations testify that the Knowledge Network participants are satisfied:
- 81 % of the respondents stated that the activity in question was very good
- 19 % of the respondents stated that the activity in question was pretty good
Furthermore, a total of 85 % stated that they had gained a lot or pretty much knowledge about the topic in question during activities.
By analyzing the Knowledge Network survey, one can identify that a majority of those who have been actively involved in the network are women who…
- …are between 40 and 69 years of age (88,8 %)
- …are born in Sweden or Ethiopia (50 % and 19,4 % respectively)
- …understand Swedish and/or English (88,8 % and 78,1 % respectively)
- …reside in the Stockholm area (63,9 %)
In the time to come, we therefore hope that more women below the age of 40 as well as over the age of 70, would like to join the network. The same goes for women who are born outside of Sweden and who are residing in other Swedish cities than Stockholm. More Swedish-born women aged between 40 and 69 who reside in Stockholm are of course welcome too – the more people who get involved, the more things we can change together.
Throughout 2018 we will keep hosting seminars, meetings, workshops and the like. Keep an eye on our site “upcoming events” for an overview of activities.
Merry Christmas and a happy new year from the Knowledge Network for women who are living with HIV!
Reflections on the seminar ”What is stigma?”
On Tuesday the 14th of November, the Knowledge Network hosted a seminar about stigma. What is it, and what could it be for persons who are living with HIV in Sweden today? Read more
The Knowledge Network for women who are living with HIV had originally invited the two scientists Maria Lindberg Reinius and Desireé Ljungcrantz who were supposed to reflect upon this topic. Unfortunately, Desireé became ill last minute, but Maria came and presented highly interesting research.
Maria is trained as a nurse, and she is currently investigating the relations between HIV-related stigma, health-related quality of life and treatment results at the Karolinska Institute (KI). I her presentation, she touched topics such as stigma, prejudice, quality of life, openness, treatment and confidence. Maria’s thesis will be published during the spring months of 2018. In this video recording you can see Maria’s full presentation from the seminar, and the presentation will allow you to familiarize yourself with both Maria’s and other researchers’ theories on the concept of stigma.
Before and after Maria’s presentation, the participating women engaged in group discussions. Before the presentation the topic for discussion was the very word ”stigma”. What does it mean? The discussion and brainstorming resulted in the following mind map:
After Maria’s presentation, various questions were brought up:
- Have you ever been treated badly because of your HIV?
- Is it important to tell people about one’s HIV? Why?
- Do you usually disclose your HIV status? To whom and in which settings?
- How will things appear in the future?
- What can we do to get rid of the stigma about HIV?
The discussion and exchange of experiences were fruitful, and the Knowledge Network would like to thank everyone who participated and Maria who was in charge of the seminar. Those who would like to reflect or talk more about the research and the questions that emerged during the seminar are more than welcome to write us at firstname.lastname@example.org.
Press Here to see Maria’s list of references and links to related research concerning stigma.
Updates from the 16th European AIDS conference in Milan
Between the 24th and 27th of October 2017, the project group behind Knowledge Network for women who are living with HIV is visiting Milan to participate in the 16th European AIDS conference. Read more
In this dynamic post we will publish summaries of relevant workshops and lectures that we have attended. In a database called JustriSlide, you can find all PowerPoint-presentations from the conference, and even from previous EACS conferences (you get access after creating a free user account).
WAVE workshop, 25th of October
WAVE is short for Women Against Viruses in Europe, and they strive to involve healthcare professionals and community representatives in order to promote the welfare of HIV-positive women in Europe. WAVE is currently surveying what kind of assistance it can provide for actors working with women and HIV, and on which topics. Relevant topics include psychosocial support, breastfeeding, HPV-related cancer, menopause/ageing, HIV testing and PrEP. Read more about WAVE here.
WAVE hosted a 3-hour workshop on the conference. They started by reporting from the last workshop that was held in Brussels in 2016. Objectives from Brussels included developing mission statements and participating in the review of EACS guidelines: tasks which have both been undertaken. A WAVE position statement promoting high standards of care for women living with HIV is in press at the moment.
First, a woman who has lived with HIV for over 20 years shared her personal story: “20 years with HIV – the longest relationship I ever had”. At the end of her talked she spoke about why it is important to talk about women and HIV. Primarily, she emphasized mental health care, especially linked to handling feelings of guilt, rejection and depression. Secondly, she drew the attention to family and reproduction. She would have loved to receive clear information about the fact that she could be pregnant as an HIV-positive woman, she said.
The next speaker, Sharon Walmsley, talked about the role of “integrase inhibitors” in treatment of women with HIV. An “integrase inhibitor” is a drug that stops HIV from making the enzyme called integrase. The drugs Raltegravir, Elvitegravir and Dolutegravir are examples of integrase inhibitors.
Walmsley asked whether there is such a thing as an optimal ART (Antiretroviral Therapy) for women. She also talked about how most studies on ARV (Antiretrovirals) study men, and often MSM (Men who have Sex with Men). She said that typically, the proportion of women in ARV studies are less than 20%. In a recent study it was as little as 4%.
Some companies have recently done women-only studies. Examples are the WAVES study (read more) and the ARIA study (read more). Researchers have had more virologic success with the drugs containing integrase inhibitors, and no women in either study developed resistance to the integrase inhibitors. The integrase inhibitor Raltegravir has even moved to the “recommended” list of ARVs for pregnant women, especially after the IAS conference in July 2017 where evidence for Raltegravir’s safety and efficiency was strengthened. Stribild and Genvoya are not recommended for pregnant women.
Walmsley also talked about co-morbidity and whether that differs between HIV-positive men and women. A Canadian study from 2014 (read more) found that women are more likely to be affected by co-morbidity than men. Menopause and early menopause can also contribute to the problem of co-morbidity, said Walmsley. Reasons for early menopause include immunosuppression, smoking and socioeconomic status. HIV-positive women also have a higher risk of bone breakage and osteoporosis. The risk is especially heightened when combined with high age, drug (especially cocaine) use, Tenofovir (a type of ARV), among other factors. NRTI sparing strategies on the other hand show less bone loss, Walmsley mentioned.
Summing up, Welmsley reminded the audience that women do represent more than 50% of the global HIV-positive population, and that gender-specific issues must be considered when selecting ARV treatment. She also stressed the importance of having registries for pregnant HIV positive women in place, as the reporting has been poor. Registries and research is needed as the number of pregnant HIV-positive women is growing.
Models of care in Western, Central and Eastern Europe
In this part of the workshop, three women representing different parts of Europe presented findings from mini-surveys undertaken in the respective regions.
First was Annette Haberl, representing Western Europe. She presented data from Italy, Spain, Switzerland, Austria, Denmark, France, Portugal, the UK and Germany. Among the findings were:
- Common models of care do not really exist
- Not all the countries have pregnancy registries
- Only one of the countries has special women’s clinics
Haberl also informed that several women-specific studies from the region are underway, for example a study on bone density from Italy, the “SWIFT” initiative, the “BESTT” study and the “PACIFY” study from the UK, and also a study of Osteoporosis from Denmark.
Haberl also talked briefly about HIVCENTER Frankfurt and their interventions, which include “SHE workshops” and “HelpingHand” education programs. Lastly, she called for an increased coordination and cooperation between European actors regarding women-specific activities, and urged WAVE to take the role as facilitator of such.
Christiana Oprea represented Central Europe, and had collected data from HIV clinics in 14 different countries in the region. She stressed that it is important to talk about women because of mental health, cervical cancer, conception, contraception and early menopause. But also because women’s access to care is restricted and different of that of men due to various structural barriers, whereof the most common in the region were:
- Community stigma and discrimination (a barrier in 13 out of 14 countries)
- Educational barriers and lack of peer-to-peer support (a barrier in 9 out of 14 countries)
- Fear of meeting someone they know (a barrier in 8 out of 14 countries)
- Other less prevalent factors included geographical barriers, lack of economic resources and/or health insurance, lack of family planning programs, care responsibilities for children and/or other family members, lack of integration between gynecological and HIV health services, and cultural barriers (in Roma population).
Oprea further noted that the HIV burden is very different between the different countries in the region. The biggest prevalence is found in Poland, Turkey and Romania. Romania faces many challenges that other countries in the region do not face to the same extent, for example there is a high prevalence of mother to child-transmissions, high rates of women injecting drugs, and signs of therapeutic fatigue among young women who have had long-time exposure to non-optimal ART regimens.
Oprea also noted that statistics have improved in the region as a whole during 2015 and 2016: more women out of the total number of women living with HIV have contact with healthcare facilities, and a bigger percentage of HIV-positive women are undetectable. Oprea ended by saying that efforts that are to come should focus on women friendly facilities and campaigns, building a network of clinical research on women, creation of programs targeted to women, and exchange of experiences across Europe.
The last speaker in this session was Inga Latysheva from St. Petersburg, representing Eastern Europe. She started by informing that the HIV epidemic started later in the east than in the west, and that the main way of getting HIV is through injection or heterosexual contact. She emphasized that women are a key population in Eastern Europe because they are more affected, more vulnerable (socially and biologically), due to childbirth, and due to what she calls alarming statistics.
The highest prevalence of HIV among women is found in Ukraine and Russia, said Latysheva. Most women found out about their HIV status through testing with specialists (30%) and 18% found out in relation to pregnancy. Latysheva stressed the importance of multidisciplinary approaches in the management of women living with HIV, and showed examples of how approaches were designed in Russia. MTCT (Mother To Child-Transmission) has gone down drastically in Ukraine and Russia during the last ten years: from around 10% in 2006 to less than 2% in 2016.
Is cART enough? What about PrEP?
After an interactive session where the audience were to recommend treatment regimens for a set of cases, Sheena McCormack said a few closing remarks. She asked whether cART (combined Antiretroviral Treatment) is “enough”. Her answer was both yes and no. Maybe it is enough when meeting a serodiscordant couple, but not as a public health strategy. In order to succeed with the latter, we need PrEP too, McCormack said. She also talked briefly about the Undetectable = Untransmittable (U=U) campaigns, and how that discourse indeed can help shift people’s beliefs about HIV. However, she does not think it is enough, as there will always be individuals that fall out between tests, and also because cART is not yet universally accessible. Concerning PrEP for women the noted that it all relates to adherence, and that PrEP works for women although women to longer to reach the adequate levels of protection, compared to men.
If you have any questions about the findings from the WAVE workshop, please get in touch with us so that we can try and find the answer. The project group behind Knowledge Network for women who are living with HIV was very inspired by the workshop, and we will look into the opportunities for membership and future participation in WAVE’s activities.
”Breastfeeding in Europe for HIV-positive women: its time has come”, 27th of October
On the 27th of October, a session on breastfeeding in Europe was arranged at the EACS conference.
Speakers brought attention to the urgency of this topic, and pointed to the lack of research done in Europe and especially in high-income countries where child mortality is generally low and many HIV-positive women are undetectable because of universal access to antiretroviral treatment (ART). Clinicians increasingly face the dilemma of being asked for guidance concerning breastfeeding, but clear guidelines are lacking. The session on the conference was meant to broaden the debate, and also to show how complex questions the on breastfeeding can be on a societal and personal level.
The session stared with a “pro/con”-debate, where one woman first represented the “con” point of view (against breastfeeding for HIV-positive women) and afterwards another woman represented the “pro” point of view (in support of breastfeeding for HIV-positive women).
These were the most important aspects brought forward by the ”con” side (against breastfeeding):
- 1/3 of all children who get HIV, get HIV through breastfeeding.
- Even though ART (antiretroviral treatment) does bring down the HIV RNA levels in breastmilk, it does not bring down the HIV DNA levels in breastmilk sufficiently.
- Due to the stress that new mothers experience in the time after birth (including possible postpartum depression and irregular sleep patterns), one cannot expect that these mothers adhere to their ART regimens. A study from 2016 found that 31% of mothers who were undetectable at delivery, had a viral rebound within the first year. In short, poor adherence = viral rebounds = risk of mother to child-transmissions (MTCT).
- The data on toxicity of ART in the breastmilk is insufficient, and also depends on the type of ART.
- Infants exposed to ARV through breastmilk run a high risk of ARV resistance if they do get HIV. Analyzes of data from the PEPI Malawi study (read more) showed that 30% of the breastfed children of mothers on ART showed multiclass resistance.
- In conclusion: “why support something that is not proved to be 100% safe?”
These were the most important aspects brought forward by the ”pro” side (in support of breastfeeding):
- One must think about the mother too – not just the “risk” for the baby. The mother might have social, cultural, personal or economic reasons for wanting to breastfeed.
- If clinicians and authorities adopt a black-and-white strategy, they might miss an opportunity to engage in dialogue with women who want to breastfeed, and also with women who are already breastfeeding.
- If a woman living with HIV is already breastfeeding, it is important that the clinician is able to give support and guidance in the choice that the woman has made.
- Breastfeeding in general is healthy for the mother. Among other things, studies have found that breastfeeding reduces the risk of breast cancer and diabetes.
- Because most studies on breastfeeding among HIV-positive women are done in Africa, they are not necessarily applicable to Europe. In resource-rich settings, both child mortality and mother-to-child transmission in pregnancy looks very different from numbers in low-income settings.
- In WHO’s updated fact sheet concerning breastfeeding, breastfeeding is recommended for mothers who live in areas of high morbidity and mortality due to diarrhea, pneumonia and malnutrition. Attention is also drawn to the reduced risk of MTCT when the mother is on ART (read more). This is a sign that the conversation is opening up. It is no longer so black-and-white.
- A similar “opening up” of the conversation can be found in the newest EACS guidelines. Even though they advise against breastfeeding, they add that “In case a woman insists on breastfeeding, we recommend follow-up with increased clinical and virological monitoring of both the mother and the infant” (read more).
What is best for the baby?
How about the baby’s perspective? Panelist Karina Butler O’Connell said that although formula feeding has proved to reduce the number of mother to child-transmissions, little difference is seen in infant survival and death numbers. She referred to various studies, among others a study from 2010 (read more) showing that very few infants were getting HIV from their mothers when mothers were on ART. She repeated the facts from the “con”-part of the session: women with perfect adherence to ART have no HIV RNA in their breastmilk, but ART does not decrease HIV DNA.
Even though it is often claimed that breastfeeding increases infants’ IQ and that it promotes other health benefits in infants, it is hard to find clinical evidence that breastfeeding is significantly better than bottle feeding. O’Connell said that before we have more data, general recommendations should not change. The time has not yet come to recommend breastfeeding for HIV-positive women, but the time has definitely come to start talking about it, said O’Connell.
Adherence and substitution of milk replacement
A key question for the panel was whether one can “say yes” to breastfeeding for women on ART when studies show that many women do not adhere to their ART regimens. Even though patients tell their doctor that they adhere to the regimen when talking with the clinicians, it is not always so, claimed some panelists. One of the participants in the panel briefly mentioned the PARTNER study as a similar example, in an attempt to strengthen this last argument: even though all patients who came to her clinic said that they always used condoms, it was fairly easy to find people to participate in the PARTNER study. One of the requirements for participation in the study is that you have had unprotected sex.
In the end of the session, attention was also brought to the question of economic coverage of milk formula. The audience, which consisted of many clinicians and specialists from many European countries, were asked whether milk formula was covered (paid for) in their countries. Very few countries in Europe seem to cover this, and it is still not covered in Sweden either. One expert in the field testified that this challenge is very real for women in the UK. It was also commented that it is not only about the formula, but also about the additional things that are needed, such as bottles and sterilizing equipment.
Many participants in the session wanted to see more sharing of experiences with breastfeeding among HIV-positive women in the European countries, to investigate how the situation looks in Europe as a whole.
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