Between the 24th and 27th of October 2017, the project group behind Knowledge Network for women who are living with HIV visited Milan to participate in the 16th European AIDS conference.
On this page you can find summaries of relevant workshops and lectures that the project group attended. You can read more about the organizer (EACS) and about the conference itself here. 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).
Press the titles below to see the project group’s own summaries of the workshops and lectures.
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
On the 27th of October, a session on breastfeeding in Europe was arranged at the EACS conference. The full title was ”Breastfeeding in Europe for HIV-positive women: its time has come”.
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.