{"id":2900,"date":"2024-04-12T08:31:00","date_gmt":"2024-04-11T23:01:00","guid":{"rendered":"https:\/\/hepatitissa.asn.au\/communitynews\/?p=2900"},"modified":"2024-05-03T10:56:09","modified_gmt":"2024-05-03T01:26:09","slug":"supporting-women-with-hepatitis","status":"publish","type":"post","link":"https:\/\/hepatitissa.asn.au\/communitynews\/2024\/04\/supporting-women-with-hepatitis\/","title":{"rendered":"Supporting Women with Hepatitis"},"content":{"rendered":"\n

Around the world, women living with hepatitis face barriers to getting care and treatment, beyond those faced by their male counterparts. This was the clear message from an international panel of women leaders from the hepatitis-affected community at a recent World Hepatitis Alliance forum to mark International Women\u2019s Day 2024.<\/p>\n\n\n\n

Speakers from Nigeria, Romania, Australia and the UK South Asian community, grappled with questions around supporting women who live with viral hepatitis. They spoke from their own lived experiences as well as their work in leading viral hepatitis organisations in their communities.<\/p>\n\n\n\n

Information and Access<\/h3>\n\n\n\n

Marinela Debu, President of Romanian Association for Patients with Liver Disease, said many women don\u2019t know that they can get tested for hepatitis free if they are pregnant, but apart from lack of information about available health services, women tend to put themselves last. \u201cIn a family, if a man has hepatitis and woman has hepatitis, the woman will think it\u2019s important to make sure her man is okay and healthy, then maybe will look at herself,\u201d she said.<\/p>\n\n\n\n

\u201cIn rural areas, it is much more difficult to get access to health services with hospitals 15, 20, 100 kilometers away. Women have no time to look after themselves; they have to work the land and look after the family.<\/p>\n\n\n\n

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Women in rural areas have no time to look after themselves; they have to work the land and look after the family.<\/figcaption><\/figure>\n\n\n\n

\u201cEven if women can get access to testing, what is the next step? Doctors can prescribe therapy if you\u2019re insured but if you want them to carry on life as usual, they must know the correct information about transmission so they can protect [and stand up for] themselves.\u201d<\/p>\n\n\n\n

She said because of ignorance, women are often ostracised when they\u2019re diagnosed with hepatitis B. She has seen blame and discrimination within families lead to divorce with emotional consequences for the children and the mothers.<\/p>\n\n\n\n

…women\u2019s social position, plus limited access to education and information means they don\u2019t know about health services, or they could be exploited by unscrupulous service providers.<\/p><\/blockquote><\/figure>\n\n\n\n

She recalled a distraught woman who was diagnosed with hepatitis B, who didn\u2019t know what to do about her husband because he was \u201caccusing her of giving hepatitis to their future children\u201d. Marinela spent hours helping the woman explain to her family what she needed to do, to understand it was not \u201cthe end\u201d, and that she won\u2019t give hepatitis to their children if she discussed with the doctor and took the necessary steps to reduce chances of mother-to-child transmission of her hepatitis B.<\/p>\n\n\n\n

Shabana Begum, National South Asian Project Coordinator at The Hepatitis C Trust, UK, said women\u2019s social position, plus limited access to education and information means they don\u2019t know about health services, or they could be exploited by unscrupulous service providers.<\/p>\n\n\n\n

\u201cFor example, in Pakistan even if women do have access to healthcare, they need somebody to go with them, and they need someone to explain things to them. One of my cousins actually got treated for hepatitis a couple of years ago. She told me her story\u2026 she did the three months [hepatitis C] treatment on the new medication; at the end of the three months, the doctor said \u2018there\u2019s still a bit of hep C left in you, why don\u2019t we, just to be on the safe side, do another three months?\u2019 She didn\u2019t have to do that at all, but because she didn\u2019t have the education and the knowledge, she was conned into doing another three months of treatment and had to part with more money,\u201d she said.<\/p>\n\n\n\n

…the medication, even if available, could be unaffordable and the situation would be even worse with home births.<\/p><\/blockquote><\/figure>\n\n\n\n

Annie Madden, Executive Director of Harm Reduction Australia, pointed to the difficulty of getting any funding for women-specific services, for women who inject drugs even though women are known to be more at risk of hepatitis C transmission because they are usually last in line for the needle, something that\u2019s reflected in the higher hepatitis C infection rate among female prisoners compared to male prisoners.*<\/p>\n\n\n\n

Ojoma Sylvia Obaje, Hepatitis B Foundation Storyteller from Nigeria, said many women in developing countries don\u2019t know they have hepatitis B until they are tested when they\u2019re pregnant, and when diagnosed, they may not have access to the necessary treatment to protect their baby. The medication needed might have to be transported from great distance in cool packs and may affect the efficacy of the drugs. That also means the medication, even if available, could be unaffordable and the situation would be even worse with home births.<\/p>\n\n\n\n

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What Women with Hepatitis Need<\/h3>\n\n\n\n

Panelists agreed that key strategies needed to meet the urgent needs of women living with hepatitis B and C, are information and education, women-specific services, and peer support networks.<\/p>\n\n\n\n

\u201cIt comes back to education,\u201d said Shabana. \u201cWe need to get the information out there through TV, radios like we do on World Hepatitis Day, information targeted at women targeted for them and their children, information in different languages that they can actually understand.\u201d<\/p>\n\n\n\n

She said, a booklet about hepatitis C in English and Urdu, which the Hepatitis C Trust took a year to put together was very well received by the South Asian community \u2013 \u201cgoing like hot cakes\u201d.<\/p>\n\n\n\n

\u201cIdeally if something like that can be translated into other languages, it would give women the information and at least they can make their own decisions. It\u2019s really essential that they are educated because they don\u2019t have that education, they get put on the back burner.\u201d<\/p>\n\n\n\n

…when I was educated by my lovely nurse and learnt more about hepatitis transmission routes, I was able to overcome that and think, okay \u2013 I\u2019ve not done anything wrong.<\/p><\/blockquote><\/figure>\n\n\n\n

Sylvie would like to see public education campaigns with stickers, billboards everywhere, and social media, to help people \u201ccome to the realisation that this disease is like every other disease and is not a death sentence. You can have hepatitis and live a normal life\u201d.<\/p>\n\n\n\n

Education and information empower women to stand up to stigmatisation and finger pointing. \u201cWhen I was diagnosed with hepatitis C I was stigmatized,\u201d said Shabana. \u201cPeople close to me, stepped away… it was like a death sentence, and it wasn\u2019t nice. But when I was educated by my lovely nurse and learnt more about hepatitis transmission routes, I was able to overcome that and think, okay \u2013 I\u2019ve not done anything wrong. So, I think I can help other women going through the same thing.\u201d<\/p>\n\n\n\n

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The highly successful South Asian Program of the Hepatitis C Trust. Source: https:\/\/www.hepctrust.org.uk\/find-support\/community-peer-programme\/south-asian-outreach-programme\/south-asian-community-programme\/<\/a><\/figcaption><\/figure>\n\n\n\n

Shabana believes normalisation is an important part of removing stigma. \u201cOf late, I\u2019ve been trying very hard to normalise hepatitis C,\u201d she said. \u201cPeople are okay talking about diabetes, getting the blood test, BMI done and everything\u2026  can we join that with everything else? TB test, HIV, antibody tests. What\u2019s the difference? There\u2019s not much difference.<\/p>\n\n\n\n

\u201cPeople come up to me and ask if we are testing for diabetes, and I said no we\u2019re actually testing for hepatitis C and in some cases, hepatitis B and HIV as well. Have an open conversation instead of being in a closed room. What I\u2019ve actually done with the South Asian Community is have tests done openly so there are lines and lines of people\u2026 people waiting, looking on\u2026 oh what\u2019s happening they\u2019ll ask, and you explain it\u2019s a hepatitis test, oh that\u2019s all right, we\u2019ll get it done.<\/p>\n\n\n\n

…she stands there proudly to say it\u2019s okay [that] you know, I have no problem standing here saying I have hepatitis.<\/p><\/blockquote><\/figure>\n\n\n\n

\u201cIf you go to a mosque on a Friday, there are hundreds of people there even if they don\u2019t want to get tested, they\u2019ll walk away some information. People that do get tested are quite happy and they\u2019ll pull in other members they know , friends, colleagues: we are getting tested, why don\u2019t you get tested as well.<\/p>\n\n\n\n

\u201cNormalising hepatitis B and C testing, that it\u2019s ok to get tested within community settings – it’s very similar to what Marinela was saying, she stands there proudly to say it\u2019s okay [that] you know, I have no problem standing here saying I have hepatitis.\u201d<\/p>\n\n\n\n

Mutual Support – Empowerment<\/h3>\n\n\n\n

Education was important to help women with hepatitis B understand and feel better about their situation, said Marinela. \u201cWhen I found I had hepatitis, I lost some of my friends. If we want to lose stigmatisation, we must discuss it. If you don\u2019t overcome stigma, you can\u2019t solve the physical impacts, because if you don\u2019t solve the problem, you can lose people important to you.\u201d She said more and more people are being diagnosed, and if people talk about hepatitis openly as part of normal daily conversation, they give each other the power to talk about what they are facing and help each other.<\/p>\n\n\n\n

While women-specific health services will help to reduce barriers for women to get the healthcare they need, Annie pointed to the “appalling reality” that it is very difficult to get donors, funders and governments to be interested in women-specific services, particularly in relation to viral hepatitis. \u201cThat has been my experience in various countries and regions, not just Australia,\u201d she said.<\/p>\n\n\n\n

…So that we know that it is not the end of the world \u2013 we can thrive, live like every other person…<\/p><\/blockquote><\/figure>\n\n\n\n

A suggestion was made to push for a women-focus theme or activity in the 2024 World Hepatitis Day campaign, to raise the profile of issues faced by women living with hepatitis.<\/p>\n\n\n\n

It was also pointed out that mutual support was crucial in helping women work through their diagnoses, find answers to their questions and take care of their mental and physical health. One suggestion was for a WhatsApp group for women to come together every single day, not just one day a year on International Women\u2019s Day.<\/p>\n\n\n\n

\u201cIf you\u2019re woman, and a mother, you must have the courage to discuss your disease,\u201d said Marinela. \u201cEncourage people to vaccinate \u2013 it is very important. Be open to discuss with your husband, your mother, family. Sometimes you could be in for a big surprise, someone in your family might get tested positive and you have saved their life.\u201d <\/p>\n\n\n\n

For Shabana, education is key. “From my experience, it is the only way to reduce stigma. It\u2019s up to you to do that, not anyone else. We have power to empower other ladies as well to participate, get educated, tested and treated and raise awareness everywhere.\u201d<\/p>\n\n\n\n

Sylvie wants “women all over the world to hear our voices to push this cause so that every woman, every child everywhere [with hepatitis] would live a normal life. So that we know that it is not the end of the world \u2013 we can thrive, live like every other person, that we are not less of a human because we are diagnosed with the virus. That is what I want \u2013 yes.\u201d<\/p>\n\n\n\n

* https:\/\/www.aihw.gov.au\/reports\/prisoners\/health-australia-prisoners-2018\/summary<\/a><\/p>\n\n\n\n

\n
Watch the forum recording<\/a><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

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