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Tweetchat 3: What keeps stigma alive, and can innovation help to end it?

SA AIDS Conference 2019:  Tweetchat 3

What keeps stigma alive, and can innovation help to end it?

Moderator:                         Vanessa Carter (Health Care Social Media and Communications South Africa)

Date:                                     Thursday, 13 June 2019

Time:                                     13:30 – 14:30 (SAST)

Hashtags:                            #TBHIVCare #StopStigma

How to participate:

Start your answers with T1, T2, T3, T4 or CT for transcript purposes. Answer only after the moderator prompts. Questions will be prompted every 10 minutes, but keep answers coming using the relevant T and number. Anyone can participate! Use the #TBHIVCare or #StopStigma hashtag in all your tweets so that you are visible to others in the chat and on the transcript.

Chat Overview

Join us for a 60-minute Twitter with TB HIV Care – live from the 2019 SA AIDS Conference in Durban. Everyone is welcome to join the chat, including those at the conference and those not, doctors, nurses, entrepreneurs, policymakers, advocates, academics, pharma, educators, students, IT developers, journalists, data scientists, civil society, NPOs, researchers, etc. both locally and internationally.

Our topic for the session focuses on stigma – what keeps it alive, how it can be addressed and if innovation can play a role in ending stigma.

The transcript will be recorded by Symplur Analytics (https://www.symplur.com).

 

Questions

T1: How does stigma affect people, especially those affected by HIV and/or TB? (e.g. reluctance to seek treatment and follow-up care)

T2: What drives stigma?

T3: How do we address stigma and what do you think are the greatest challenges of doing so?

T4: How do you think digital technologies and other innovative ideas could help address stigma in South Africa?

Closing: What other thoughts would you like to add?

 

Blog: 3. What keeps stigma alive, and can innovation help to end it?

Stigma refers to the process of devaluing or discrediting individuals – often because of perceptions related to culture, gender, race and health. People with HIV and TB (and other illnesses) often face stigma. Discrimination follows stigma, and is the unfair and unjust treatment of an individual based on their real or perceived HIV and/or TB status. Stigma has a profound effect on individuals, communities and society. It results in a range of excluding behaviours, it isolates, divides and breaks down communities; it undermines human rights and results in the internalisation of blame and shame. (Source: Southern African HIV Clinicians Society).

This internalisation of shame is referred to as self-stigma and it, in turn, has an impact on a person’s mental health, but it also impacts on the uptake of HIV testing, prevention and treatment services. Crucially, for people living with HIV, self-stigma often means that they don’t access life-saving antiretroviral treatment. (Source: http://frontlineaids.org/wp-content/uploads/2019/05/FrontlineAIDS-SelfStigma-Report-A5-AW_Web.pdf)

There is a strong relationship between stigma and HIV. People who experience stigma and discrimination are often marginalised (socially, economically and legally) and made more vulnerable to HIV (such as sex workers and people who inject drugs), while those living with HIV are more vulnerable to experiencing stigma and discrimination.

South Africa’s national People Living with HIV Stigma Index (2014) showed evidence of some positive strides being made in terms of combatting stigma and discrimination as experienced by PLHIV – especially in the healthcare sector as only a small proportion of individuals in the study reported having experienced discrimination because of their HIV-positive status. Nevertheless, there is still some evidence of stigma and discrimination of PLHIV experienced in the health care sector. Moderate levels of HIV-related external and internalized stigma and discrimination were found. Moderately high TB-related stigma was also found. Of concern is the level of internalized stigma found in this study, which is probably a consequence of the lack of adequate psychosocial support that is currently available for PLHIV to address the psychological consequences of receiving an HIV-positive diagnosis including associated mental health issues. As the report concludes, ‘stigma mitigation campaigns are greatly needed in the South African context’. (Source: www.stigmaindex.org)

How do we address stigma in 2019? Myths and misinformation around HIV persist; can we adopt a new approach to tackling stigma and discrimination? Can e-health play a role? During this 60-minute session, we explore why stigma remains so difficult to overcome and what we can do differently. This session is hosted by TB HIV Care as part of their SA AIDS Conference 2019 conversations.

Tweetchat 2: Men Matter. How can we better involve men in the HIV response?

SA AIDS Conference 2019:  Tweetchat 2

Men Matter. How can we better involve men in the HIV response?

Moderator:                         Vanessa Carter (Health Care Social Media and Communications South Africa)

Date:                                     Wednesday, 12 June 2019

Time:                                     13:30 – 14:30 (SAST)

Hashtags:                             #TBHIVCare #MenMatter

How to participate:

Start your answers with T1, T2, T3, T4 or CT for transcript purposes. Answer only after the moderator prompts. Questions will be prompted every 10 minutes, but keep answers coming using the relevant T and number. Anyone can participate! Use the #TBHIVCare or #MenMatter hashtag in all your tweets so that you are visible to others in the chat and on the transcript.

Chat Overview

Join us for a 60-minute Twitter with TB HIV Care – live from the 2019 SA AIDS Conference in Durban. Everyone is welcome to join the chat, including those at the conference and those not, doctors, nurses, entrepreneurs, policymakers, advocates, academics, pharma, educators, students, IT developers, journalists, data scientists, civil society, NPOs, researchers, etc. both locally and internationally.

Our topic for this session focuses on men – and more specifically, how we can better involve them in efforts to end HIV.

The transcript will be recorded by Symplur Analytics (https://www.symplur.com). 

Questions

T1: What factors affect gender disparity in terms of access to healthcare and health outcomes (in South Africa or globally)?

T2: What is the biggest challenge when it comes to addressing HIV prevention, treatment and care with South African men?

T3: What does the health system need to do differently in order to engage men in the HIV response?

T4: How can digital technologies or other innovations help overcome the challenges faced when involving men in the HIV response?

Closing: What other thoughts would you like to add?

 

Blog: Men Matter. How can we better involve men in the HIV response?

In many societies, men generally enjoy more opportunities, privileges and power than women, yet these multiple advantages do not translate into better health outcomes. What explains this gender disparity? According to the WHO European Region’s review of the social determinants of health, chaired by Sir Michael Marmot, men’s poorer survival rates “reflect several factors – greater levels of occupational exposure to physical and chemical hazards, behaviours associated with male norms of risk-taking and adventure, health behaviour paradigms related to masculinity and the fact that men are less likely to visit a doctor when they are ill and, when they see a doctor, are less likely to report on the symptoms of disease or illness” (Source: https://www.who.int/bulletin/volumes/92/8/13-132795/en/).

In South Africa, we see similar patterns at play. UNAIDS reports that men are less likely than women to use health services and tend to be sicker when seeking medical help. They are also less likely to take an HIV test (for example, in 2016 an estimated 45% of men tested for HIV compared to 59% of women) and this means they are less likely to know whether they are HIV positive. As a result, fewer South African men living with HIV start and remain on HIV treatment, and men are more likely to die of AIDS-related causes, as well as tuberculosis (Source: PDF: A snapshot of men and HIV in South Africa – UNAids).

A recent Community Rights and Gender Assessment undertaken by TB HIV Care for the Stop TB Partnership shows that Gender impacts on vulnerability to infection, access to TB diagnosis and treatment, quality of care and treatment completion. Men are markedly more vulnerable to TB infection and disease and have higher mortality than women. National mortality rates for 2016 indicate that TB was the leading cause of death in men in South Africa, accounting for 7.6% (18 153/240 001) of deaths. TB was only the fifth leading cause of death in women, accounting for 5,2% (11 246/214 988) of deaths. Structural barriers to accessing TB services for men include cultural attitudes towards health-seeking (incl. cultural expressions and notions of strength and masculinity undermining engagement in care) and insufficiently tailored healthcare services (e.g. male-only spaces in healthcare facilities or after hours services).

Several recent studies in Malawi, South Africa, Uganda and Zimbabwe suggest that notions of masculinity not only increase the risk of infection with HIV, but they also inhibit men from getting tested for HIV, coming to terms with their HIV-positive status, taking instructions from nurses, and engaging in health-enabling behaviours. Cornell et al. have argued that we have a “blind spot” when it comes to men and antiretroviral therapy (ART) in Africa. These researchers note, for example, that disproportionately fewer men than women access ART across Africa, that men start ART later in the disease course than women, and that men are more likely than women to interrupt treatment and be lost to follow-up. (Source: https://www.who.int/bulletin/volumes/92/8/13-132795/en/)

Men are critical in the HIV response, but they are being left behind. What needs to change? How do we change the conversation with men? How do we involve them more in the HIV response? Examples include creating male-friendly spaces within facilities, creating more men-only support groups and structural programmes and tailoring e-health solutions and innovations to meet men’s needs. During this 60-minute session, we explore the challenges involved in reaching men, and what we can do differently. This session is hosted by TB HIV Care as part of their SA AIDS Conference 2019 conversations.

Tweetchat 1: Can data save lives?

SA AIDS Conference 2019:  Tweetchat 1

Can data save lives? Exploring how data can help reach epidemic control

Moderator:                         Vanessa Carter (Health Care Social Media and Communications South Africa)

Date:                                     Tuesday, 11 June 2019

Time:                                     13:30 – 14:30 (SAST)

Hashtags:                             #TBHIVCare #DataSavesLives

How to participate:

Start your answers with T1, T2, T3, T4 or CT for transcript purposes. Answer only after the moderator prompts. Questions will be prompted every 10 minutes, but keep answers coming using the relevant T and number. Anyone can participate! Use the #TBHIVCare or #DataSavesLives hashtag in all your tweets so that you are visible to others in the chat and on the transcript.

Chat Overview

Join us for a 60-minute Twitter with TB HIV Care – live from the 2019 SA AIDS Conference in Durban. Everyone is welcome to join the chat, including those at the conference and those not, doctors, nurses, entrepreneurs, policymakers, advocates, academics, pharma, educators, students, IT developers, journalists, data scientists, civil society, NPOs, researchers, etc. both locally and internationally.

Our topic for this session focuses on data – and how innovations in data collection, analysis and reporting can help South Africa achieve epidemic control.

The transcript will be recorded by Symplur Analytics (https://www.symplur.com). 

Questions

T1: Why is data so important in the HIV response?

T2: What are some of the biggest challenges to collecting data for HIV/AIDS in South Africa?

T3: Have you seen data make a tangible difference in the HIV response? Can you share an example?

T4: How can innovations or new approaches help close the gaps in the HIV response?

Closing: What other thoughts would you like to add?

 Blog: Can data save lives? Exploring how data can help reach epidemic control

In a study published in 2016, AVAC (Global Advocacy for HIV Prevention) warned that major gaps in global HIV/AIDS data stand in the way of delivering HIV prevention advances to millions of people around the world. The report identified several critical weaknesses in HIV prevention data collection and monitoring systems, with Mitchell Warren, AVAC’s Executive Director saying, “In an era in which big data are expected to improve essentially every part of our lives, there’s no excuse for HIV prevention data systems to be so uneven, incomplete and inefficient. To have any chance of ending the epidemic by 2030, we need to be collecting and accounting for every bit of useful information from every person living with or at risk for HIV.” (Source: https://www.avac.org/press-release/data-gaps-hinder-global-efforts-reduce-hiv-infections-avac-report-warns-improved-data)

The study reports that today’s HIV prevention data is:

  • Not sufficiently broken down by age, gender, income status, key population status and other vital categories
  • Missing or incomplete for key populations most in need of prevention, including adolescent girls and young women, men who have sex with men, transgender women, and others
  • Not tied to useful HIV prevention metrics and indicators, so that it is impossible to know whether prevention programs are actually averting infections and improving health
  • Not effectively informing the HIV prevention research agenda

Three years on from this report, does the landscape look any different for HIV prevention? Crucially, gaps don’t only exist in HIV prevention, there are also significant issues in terms of data on the care and treatment of people living with HIV, including:

  • The link between data and health facilities
  • Patients often move between facilities, but their health records don’t (leading to incomplete clinical records or duplication of records)
  • Data is often not reviewed, meaning gaps are not identified and opportunities are missed
  • Under-capacitation of clinical staff, i.e. staff need to be capacitated and supported in terms of data literacy, to empower them to use data for decision making

How do we address these issues? Are new systems and innovations having an impact?

During this 60-minute session, we examine both the challenges and opportunities surrounding HIV/AIDS data, explore how data can help South Africa achieve epidemic control and examine what we can do differently. This session is hosted by TB HIV Care as part of their SA AIDS Conference 2019 conversations.