Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 1

Where’s the hope? Dialogues for Solidarity

27 April 2017

Session 2: Life experiences – Women as service users and providers with guests Sophie Strachan and Memory Sachikonye, Sophia Forum

Where’s the Hope?, a year-long series of dialogues for solidarity, is coordinated by ReShape, an independent London-based think tank formed to respond to the ongoing crisis in sexual health.

Working together, activists and organisers will share their experiences and explore new op-portunities to address explore chronic obstacles to successful organising in HIV, HCV and re-lated sexual and mental health concerns. Emerging advocates and organisers are especially welcome.

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 2

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 3

Background to the series

Huge gains have been made in HIV and HCV, related sexual and mental health con-cerns. We have the science and practice to prevent and treat HIV and HCV; we know more than ever about related sexual and mental health concerns. We are reframing our problems to aim toward sexual health and social wellbeing.

Yet individuals, organisations, the media and systems continue to stigmatise people living with these diseases and conditions and they often stigmatise themselves. One could al-so argue that these conditions are less stigmatised within the healthcare system today, than they once were - at least HIV - but MORE stigmatised outside of the healthcare system.

Where’s the Hope?, the result of extensive dialogue with UK and international activ-ists, is a ReShape series of inter-related community dialogues, in partnership with leading UK HIV/HCV/sexual health and well-being sector organisers, organisations and out-of-country experts. The series will explore the key challenges and gaps of the day, and seeks to promote solidarity, community engagement, organiser mentoring / co-mentoring and effective initia-tives.

Where’s the hope? intends to be inclusive of people living with HIV (PLHIV), people living with HCV, BAME (Black, Asian, Minority, Ethnic), trans people, elders and young people, as well as social researchers. The ReShape series is designed to assist organisers, activists, advocates and service users impacted by HIV, HCV and related sexual and mental health con-cerns, with a special focus on emerging advocates and organisers.

All dialogues will be documented, disseminated and posted to contribute to local and international dialogue. The series will run monthly for a year, on the last Thursday of every month.

Sheena McCormack European ChemSex Forum, 2015

We can’t keep compiling our lives as

a series of problems one after the oth-

er, HIV, Chemsex, hepatitis C, de-

pression... We need to create institu-

tions where people can get support

for themselves in a holistic way

around sexual health and well-being,

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Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 4

Life experiences: women as service users and providers

The second session in the series took place on Thursday 27th April 2017 with

Sophie Strachan and Memory Sachikonye, co-chairs of Sophia Forum.

The session explored key challenges for women as service providers & service us-

ers.

Guest Presenters: Sophie Strachan & Memory Sachikonye

Sophie Strachan, Co-chair Sophia Forum

Sophie is Co-Chair of the Sophia Forum, living with HIV since

2003. Following her diagnosis Sophie provided peer support in

prisons and clinical settings through her former role at Positive-

ly UK. She is an accomplished Trainer, facilitator and interna-

tional speaker, Sophie currently works as a sexual health advi-

sor based in London.

Pieces of work include leading on a piece of research looking at

“Are the health and social care needs of people living with HIV in UK prisons being

met?”. An abstract of this work was presented at Washington 2012 World AIDS confer-

ence. Sophie has been instrumental in being an advocate for this population of people and

has written aspects of her own story in magazines, which have reached women all over

the world. She mobilised the invisibility of lesbians and bisexual women living with HIV

developing a project voluntarily run. Sophie was invited to speak and present on these

issues at the 2010 World AIDS conference in Vienna.

Sophie worked as an associate with The Salamander Trust as a global reference group

member in the design and research on sexual and reproductive health and human rights

of women living, commissioned by WHO to inform the development of its new guidelines

on this topic.

Sophie has spent the last 2 years contributing to policy development and implementation

through her patient voice advisory role at NHS England health and justice board. She sits

on the BBV opt out policy for prisons task and finish group and the immigration and re-

moval assurance group and is a specialist committee member with NICE, developing

quality standards around the physical health of people in prisons. She was a member of

the NICE guideline development group, which published guidelines on the physical

health needs of people in prisons. Sophie also sits on the Royal College of General Practi-

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 5

tioners Secure Environment Group and has delivered workshops at the health and justice

summit conference for the last two years on patient voice, prison reform.

Sophie has been an advisory member with GNP+ key population group since 2013 con-

tributing to the development of their human rights count tool and their positive health,

dignity and prevention operational guidelines. She co-facilitated a workshop in Durban at

the World AIDS conference on Stigma alongside a Key population member. Sophie re-

mains a member of the Global Coalition on Women and Aids, and was invited by UN

Women to present on women’s leadership in the response to HIV, in Kazakhstan last year.

Sophie was recently appointed a member of Gilead's European Community Advisory

board, and is a member of United4PrEP.

Memory Sachikonye, Co-Chair Sophia Forum

Memory Sachikonye has been living with HIV since 2002 and

currently works for HIV i-Base as co-ordinator for the UK

Community Advisory Board (UK-CAB). UK-CAB is network of

HIV treatment advocates from across the UK with over 850

members and 120 organisations. It focuses on HIV treatment

and treatment-related areas.

She is the Co-chair Sophia Forum, which promotes and advocates for the rights, health,

welfare and dignity of women living with HIV through research, raising awareness and

influencing policy.

Memory is a member of the European AIDS Treatment Group (EATG). She is the co-chair

of EATG's Development and Membership Advisory Group (DMAG).

Memory has also supported the setting up of the African Community Advisory Board

(AfroCAB).

Memory’s other advocacy involvement include:

• Community representative on HIV studies steering and management committees;

includes input into the design and management of clinical trials.

• One of the four patient representatives on the NHS England HIV Clinical Reference

Group (HIV CRG) from 2012 to 2016.

• Service User Representative for the Enfield and Haringey HIV Providers’ Forum

and chair of the HIV patient forum at North Middlesex hospital.

• PozFem UK - a unique national voice and support network of women living with

HIV that keeps women informed of HIV, health and social issues. It works to in-

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 6

crease the understanding of issues for women amongst policy makers and service

providers locally and globally.

Memory volunteered at Positively UK (then Positively Women) from 2002. She is a mem-

ber of Poz-Fem UK. She is an experienced public speaker and advocates for asylum seek-

ers, especially women’s rights to services and access to treatment. Memory has many

years experience in UK and international support networks and services.

Life experiences - Presentations

Memory Sachikonye

Memory opened the meeting with a recount of her experience as a woman immi-

grant living with HIV, exploring issues around immigration, support, fear and stigma.

Born in Zimbabwe, Memory was diagnosed while visiting the UK, when a cold

was unexpectedly diagnosed as HIV. At the time of her diagnosis, her CD4 count was less

than 10 and her viral load was above 65000. This left her with an impossible choice: to stay

in the UK in order to get treatment, as ARVs were not yet available in Zimbabwe, or go

home to die. Although the situation has now changed, issues around intermittent drug

stock outs remain a problem in her home country today.

A family member living with HIV introduced Memory to Positively Women (now

Positively UK), where she was able to access support services. There, with the support of

other women, she was able to regain her self-esteem and learn about living with HIV.

Her visa was running out at that point so Memory started the difficult and lengthy asy-

lum application process. While waiting, she started to volunteer as a coping mechanism

against stress. 6 and half years later, Memory was finally granted refugee status in the UK

as her role as an HIV activist would have made her liable to prosecution in her home

country.

Treatment was difficult and as a late presenter she had to start treatment immedi-

ately. She developed IRIS (immune restitution inflammation syndrome), had to be hospi-

talised and found out she was also suffering from a kidney disease. She was also suspect-

ed to have TB. Her recovery was quite slow and it took 2 years for her CD4 count to get

back up to 200.

Meanwhile, Memory also had to cope with the stress of being a mother living in

another country, her son being 15 when she left. She had left the UK for 3 weeks and in-

stead ended up staying. She relied on her parents who had to take care of her son who

was still in school.

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 7

During that time, her main source of support was from Positively Women, which

helped her realising she was still alive and helped her regain what she thought she had

lost. It also helped her to disclose her HIV status. They offered lots of peer support, pro-

vided information on where to go for other services, offered training, and much more.

The support was just for women, which made her feel comfortable and gave her the con-

fidence she did not have.

Memory’s story highlights the many difficulties faced by immigrant women, who

have unique challenges and needs to overcome. From the dilemma of having to chose

whether to stay to access treatment or to return home to their family, to fears of deporta-

tion, loss of status, loss of family and friends. Having the added responsibility of caring

not only for themselves but also for their children and families they have left behind can

be a profound source of stress as well as generate a sense of guilt and powerlessness.

Support groups can allow women in this situation to start working through their feelings

of loss, helping them to realise their worth and reshape their lives.

However, today, to access services, women need to be proactive. Peer support and

most of the services have closed down due to lack of funding and there are very few ser-

vices for women. Women have other responsibilities as mothers, wives, carers, and to be

of use, services need to meet women’s additional needs, such as supporting them with

childcare, education and work. Service providers, if they want women to be responsive,

will have to develop suitable services, able to demonstrate they can face difficult issues

and communicate with women at a deeper level.

Sophie Strachan

Sophie focussed her talk on women as service providers, looking in particular at

women, intersectionality and HIV.

Sophie started her presentation by noting that recently, in the post Brexit era, there

had been a massive drive towards immigration control and a recent article in the Guardi-

an indicated that the government had reached a deal with NHS digital to share patients’

personal information with the Home Office in order to track down undocumented mi-

grants. Doctors of the World, the National AIDS Trust, Liberty and Privacy International

have called for a suspension of the data sharing service and have started the #stopsharing

campaign to put pressure on the government.

Doctors of the World have also produced a toolkit for GPs, the “Safe Surgeries”

toolkit giving GP practices concrete ways to defy the data-sharing deal by keeping their

patients’ addresses off NHS records, including using the GP practice address as c/o ad-

dress.

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 8

Women migrants in the UK, who do not have confirmed residency status, are not

accessing healthcare, antenatal care and potentially life saving treatments because they are

afraid of being identified. Additionally, many of these women have experienced traumas

in their home countries and accessing healthcare should not be another traumatic experi-

ence. The NHS must remain a safe place for undocumented migrants, asylum seekers and

refugees. On policy level, this data sharing policy is also contrary to the Sustainable De-

velopment Goals the government has signed up to, which is about reducing inequalities

and ensuring healthcare and wellbeing for all, by guaranteeing access to healthcare, medi-

cines and vaccines.

The Women Health Equality Consortium recently published a report on the value

of women’s health services highlighting how the move towards competitive tendering

and reduced funding have made it harder for smaller women voluntary sector organisa-

tions to compete. The report makes a series of recommendations to commissioners, asking

them to consider women’s health needs in the broader context of gender inequality and

other intersecting inequalities, and to understand the value of a holistic approach to ser-

vice delivery, by looking at specialism and making linkages. It also recommends the de-

velopment of infrastructure support for smaller organisations to help them bid as partner-

ships or consortiums. The report demonstrates the impact that women’s voluntary and

community organisations have on the health and wellbeing of the women and girls who

access their services and its value.

Kimberly Williams Crenshaw

If we are not intersectional, some of us, the

most vulnerable, are going to fall through the

cracks.

When we don’t pay attention to the margins,

when we don’t acknowledge the intersection,

where the places of power overlap, we not

only fail to see the women who fall between

our movements, sometimes we pit our

movements against each other.

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 9

Going forward – Key points from the discussion

Globally there is a stronger understanding about the interconnectedness between

gender and HIV and the fact that gender inequality is a key driver of HIV. It is recognised

that gender-based violence is a cause and consequence of HIV, that gender discrimination

and reduced access to education and information are driving HIV transmission and ac-

quisition. This is not embedded in the UK response. The case still needs to be made to

start thinking of women without any specific parameters, of women as a group, rather

than as African women or migrant women, or other women sub-groups. Because there

has not really been this recognition that women, as a group, are affected by HIV, the space

for women organising has been limited. This is also partly due to the HIV response being

epidemiologically driven, thus focussing on gay men and African women. But for women

living with HIV, moving away from the prevention and transmission space onto women

lives with HIV, gender has an enormous impact.

PrEP in particular has illustrated how being in a room as women can be exhausting

and often fruitless because of this absence of recognition of women as a group. Despite

many discussions and meetings, it is not clear that any outcomes have occurred. Taking it

forward is difficult. It is easier to do risk assessments for MSMs for whom STI diagnoses

carry with them a calculable risk of catching HIV, which can then be explained and used

to make MSMs think about their risk behaviour and recommend PrEP. However, the ma-

jority of African women who get HIV get it from their partner. What are the criteria in

these situations for risk assessment? Until we have a conversation with women and get

them to understand or even just think they might be at risk and encourage them to go to

their sexual health services, no women will get PrEP. Therefore, physicians and healthcare

workers need to be educated to ask women about their risks and explain about PrEP. The

data is not as good in women, a fact thought to be related to adherence issues, but never-

therless, study results show that if women take PrEP everyday it works. PrEP gives wom-

en control, especially as it is often difficult for women to negotiate condom use. To get bet-

ter data and facilitate women access to PrEP, it is imperative to make a case for improved

women’s participation in upcoming PrEP trials, starting with better trial design to take

women’s requirements into account.

Dr Jane Anderson, one of the meeting participants, noted that not enough attention

was paid to negative HIV tests. A negative diagnosis requires attention with a risk analy-

sis and a conversation. She felt we were still in an era where we were seeking viruses and

testing to find the positive people rather than to protect the negative people. Positive tests

should be seen as a failure of prevention. As services get streamlined and fewer people

are having face-to-face information, we need to find a way to convey this message and

pass on information to people.

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 10

Jacqui Stevenson, presented some of her research on women’s experience of ageing

with HIV in the UK, demonstrating how women face specific gendered experiences and

challenges, including biological issues like the menopause, and social experiences such as

providing care for others. Isolation, lack of access to support services, socio-economic

challenges, stigma and fear of disclosing, were some of the key themes emerging from the

study. The risks and fears around disclosing also stopped many women from engaging in

sexual relationships and in participatory workshops taking place in the context of the

study, the term “undetectable” was hardly ever mentioned or understood.

Women also felt left behind in the dialogue around HIV today, with healthcare profes-

sionals not being able to answer questions relating to women ageing with HIV, leaving

them to face uncertainty.

The research also shows that cuts to funding were having a particularly big impact on

women living with HIV with the disappearance of peer support services. These were of-

ten the only places where women were getting support or having safe social interactions.

The latest stage of the research will involve life story interviews of women living with

HIV aged 50 and over. Jacqui noted that in HIV women stories have been ignored and

have not been at the centre of the epidemics. The more these stories are brought forward,

the more women will be able to compete to have the space they need and have better ac-

cess to services.

As an increasing number of women living with HIV are getting older, a key issue

for clinicians is to be able to guide and inform women around issues related to the meno-

pause in the context of HIV. Dr. Shema Tariq, a Consultant in HIV and Sexual Health,

and her team have been developing the PRIME study (Positive tRansItions through

the MEnopause), a mixed-methods observational study exploring the impact of the men-

opause on women living with HIV from all ethnic backgrounds. The research is a mixture

of qualitative and quantitative research, including measurement, surveys, blood tests, and

semi-structured interviews about women’s experiences.

Preliminary data show that women were unprepared for the menopause. Participants of-

ten attributed menopausal symptoms to their HIV medicines, which impacted on their

adherence. They were reluctant to take Hormone Replacement Therapy and were often

frustrated by the lack of awareness amongst their healthcare providers. Cultural taboos

and isolation from their kin further exacerbated the situation for women from Sub-

Saharan Africa. The women participating in the study expressed their needs for peer-

support and access to information and supportive healthcare providers.

The team hopes this study will inform the provision of appropriate services for women

living with HIV thus ensuring that they are supported in maintaining optimal health and

wellbeing as they get older.

The meeting participants noted that migrant women often get their diagnosis while

struggling with their immigration status. They often lack information and knowledge

about HIV and find it hard to participate in groups, whether because of stigma in their

community or because they are scared the government will find out and deport them.

Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 11

Participants felt strongly that after 30 years of the HIV epidemic and advances in HIV

treatment and prevention, we should not still be talking about Stigma. This is where and

why grassroots organisations should be helping migrant women access services other

than clinics. Education and improved youth engagement need to be fostered if we want to

move forward and improve women’s lives.

The meeting concluded that women also needed to think of innovative ways to sus-

tain their own places and provide services that are needed, taking into account women’s

additional responsibilities such as providing a practical and affordable way to ensure

childcare while attending a support group. Women issues are different: childcare, preg-

nancy, being care providers, late diagnosis and, domestic violence.

Organisations are needed where women are able to make the case for safe spaces run by

and for women. The importance of safe spaces for women is specifically important in the

provision of drug services where about 90% of women using these services have been vic-

tim of domestic violence at some point in their lives while 60% of men using drug services

admit to having committed domestic violence. One must feel physically safe to make

progress. Women grow when they convene and meet other women, getting confidence

from hearing other women’s stories.

Next event

Where’s the Hope? Dialogue for solidarity

Session 3 of the series – African and Afro-Caribbeans

Date & Time: 29 June 2017 @ 7pm

Location: Stillpoint Spaces, 23 Clerkenwell Close, London EC1R 0AA

Please print out a map when you come the first time. It’s hard to find if you don’t. Very

near Farringdon Station.