Sophia Forum: A Space for Women Living With HIV Created by Women Living With HIV
Terri Wilder: Thanks for joining me today. What can you tell me about the organization Sophia Forum?
Sophie Strachan: Thank you very much for the invitation. The Sophia Forum is a national U.K.-based charity, which promotes and advocates for the rights, the health, the welfare, and the dignity of women living with HIV. We do this through research, raising awareness, and influencing policy. Our work reaches women with different ethnic, faith, and gender identities and sexual orientations, ages, immigration statuses, and relationships with the criminal justice system.
A key part is that we ensure that women living with HIV are meaningfully involved in all of our work. It’s currently led by a collective of women of diverse ethnicity, age, gender identity, and sexual orientation.
Wilder: One of the activities that’s part of the Sophia Forum is what’s called the WISE UP+ Ageing [Positively] weekend. Can you tell me a little bit about that?
Strachan: Sure. WISE UP stands for Women Inspire Support and Empower to Unleash Positive Potential. The weekend itself is a structured series of workshops designed and led by women living with HIV, with the sole aim of building a dynamic community of female HIV advocates.
The sub aims of that weekend are, one, to help alleviate isolation. We have delivered these nationally in the U.K. There are women who are based more rurally who have no, or very low, access to services. Within the advocacy program of the weekend, it’s also about highlighting the unmet needs of these women that can then go on to help inform a change in policy and service design, for instance.
It’s about increasing the knowledge and power for the women that attend that will help women feel more empowered to go back and maybe have a conversation with their consultant, that they didn’t feel that maybe they were able to do, whether that be through a lack of information or they just felt that they had to put up with an element of their care. For some, it’s about wanting to become part of a community of women.
Another element of it is about really exploring and unpacking the health disparities specific to women around culture and age, and the intersectionality that goes on. Another strand is about endorsing positive sex messages so that women can have the lives and the relationships that they want.
We’ve had weekends where women have never knowingly met another woman living with HIV—and it’s so powerful. It’s important to say not knowingly met another woman living with HIV, because we don’t walk around with a banner on our head. The stereotyping of women living with HIV is changing through education, and by women becoming public-facing around their status.
It’s an incredibly powerful, safe community space.
“We Are Still Here”: Greater Visibility for Older Women Living With HIV
Wilder: The “We Are Still Here” campaign highlights the experiences of older women living with HIV. And how did the campaign come about?
Strachan: It was developed based on the research findings from Dr. Jacqui Stevenson’s research, which was looking at the experiences of women over 50 living with HIV in London. That explored both the positive and negative experiences, and also looked at the tools, their strengths, and strategies that women have used to be able to live well.
Her research was the foundation, and we then went on to develop the WISE UP+ Ageing weekend. The big focus of that weekend was the menopause. We had 23 women for over two and a half days taking part in different workshops. But also, there was one very interactive session, where there was an HIV menopause specialist that came along. We had a Q&A session, and then we took the questions from that session to go on to form the menopause book club.
We also took from that weekend their advocacy asks, where they were highlighting their unmet needs, to then go on to develop this campaign, which we will roll out nationally. We’ve provided them with the resources, not just for the women living with HIV, but also the clinicians and non-HIV clinicians who just aren’t confident about having conversations about the menopause and don’t have the relevant, or enough, information.
Then there’s ongoing policy work that we will be doing. You’ve seen the advocacy asks. We’re constantly shouting as a research organization for more research to be undertaken on women, with the involvement of women living with HIV.
So, from the very start, in terms of Jacqui’s research, right to the coproduction of it, it has involved full engagement of women living with HIV to inform that campaign. Otherwise, how are we going to meet the needs of women living with HIV without them being involved?
Filling Gaps in Menopause Information and Support for Women Living With HIV
Wilder: The campaign has eight asks, and the second one states, “Accurate, accessible, and comprehensive menopause information and support in HIV clinics.”
Can you talk about this ask? Women living with HIV are aging. As clinicians are thinking about other aging issues, why do you think there wouldn’t be information about menopause at HIV clinics?
Strachan: I love that question. One part of it is, the fact that we are aging is quite new.
In general, there is a complete taboo and silence around the menopause for women. There’s a huge amount that’s been going on in the U.K. over the last couple of years, but there is still a heap of work to be done. So, in the U.K., it’s like the messaging around the menopause is, it’s something that will happen around your 50s. You might get a hot flush [called “hot flash” in the U.S.] and night sweat. They’re the symptoms that are sort of advertised: night sweats and hot flushes.
My own experience was that I entered the menopause slightly early. A hot flush and a night sweat were not my experiences, and I literally had no resource. There was no information. And there had been no earlier conversation with my HIV consultant of, “Oh, you’re approaching your mid-40s. Let’s have a conversation about the menopause and what to expect.” It was only when I’d presented as not having a period for three months that she was like, “Oh. How old are you?” I was like, “43.” And that’s how it started. Because the messaging was, like, 50, it was nowhere on my radar.
So, not having information is not unique to an HIV clinic. There is no information, in general, on the menopause out there. I read a report yesterday that 87% of the population of women are not prepared for the menopause at all.
Wilder: Let’s talk about the No. 8 ask: “Treatment advocacy and peer support training tailored to women, including menopause mentors.” I’m wondering what the women in the group imagined a menopause mentor would be, and why it would be important to have one.
Strachan: The language might vary differently from the U.K. to the U.S. A ‘peer mentor’ is language that’s used across the HIV sector. It’s a peer, so it’s another person living with the same condition that you have. A menopause mentor is fundamentally going to be a woman living with HIV who has experienced, or is experiencing, and has knowledge around the menopause that will support another woman who may be approaching it (so there’s an education element that could be provided) or could be going through it, but doesn’t feel able or empowered, or even understand what question it is she needs to be asking—because it is just such a hive of information.
It’s taken me years to understand. I wish I’d known at 30 how much having hormone imbalance would impact me when I reached, or started to reach, perimenopause stage. I’d have been doing a lot more beforehand in preparation. A menopause mentor is just about giving somebody support, directing them.
What No One Tells You About Menopause and HIV
Wilder: On the Sophia Forum website, there is an amazing 20-plus-page document called, “A Guide to Menopause for Women Living with HIV,” and it is very comprehensive in its information. It also has really eye-catching designs. We’ve talked about why it was probably necessary to create this guide—because there’s no information.
Can you talk about the information that is in the guide?
Strachan: First and foremost, there certainly hasn’t been enough information. When we talk about “accessible,” it’s also about accessibility in language. I can read stuff, and it’s just complete gobbledygook in the medicalization of the language and the references. So, this was about it being accessible in a reading format that would be easy for the women to read and absorb instead of, for some instances, scientific data.
Also, because there is some research out there about how women living with HIV can experience more severe symptoms of the menopause, it was really important that there be a balance of “This is what you can expect.” Being HIV positive isn’t going to make it any different, in the fact that you’re still going to go through the menopause. But there are some things that you may experience more intensely.
In it, we cover things like symptoms and what the long-term health risks can be due to the menopause. Then there are treatment suggestions for the menopause beyond HRT [hormone replacement therapy]. There are ways that you can replace the loss of estrogen through diet. Then, it talks about types of HRT. Importantly, it talks about the risks and the benefits of HRT, and then also what HRT you would need to take if, for instance, you still had your womb. And what you wouldn’t take if you didn’t have your womb. And it talks about different stages of the menopause.
So, it is comprehensive because, again, it was based on research interviews, and also the WISE UP weekend. These were the questions that were being asked. I’ve never seen a group of women so thirsty for information. They were buzzing. We could have gone on for a week.
Wilder: Since we’re discussing menopause, it would be helpful to have a basic definition. Also, what are some of the symptoms of menopause?
Strachan: In terms of what the menopause is, it refers to the last period of a person’s experience. It can really only be diagnosed retrospectively because it is only possible to know for sure that the menopause has occurred if there have been no more periods for a year after that person’s last period.
The menopause occurs because the ovaries have run out of eggs, which results in the ovaries no longer producing the hormones estrogen, progesterone, and testosterone.
In terms of symptoms—again, I had no idea, and a lot of women don’t have any idea of the quite exhaustive list of symptoms that women can experience. The very common ones you hear about are night sweats and hot flushes. What women don’t tend to know about is loss of memory. The brain fog. Potential hair loss. The increase in pain. The impact of vaginal dryness, vaginal atrophy. There is the loss of libido, but it’s also about how you have those conversations with your partner, for instance, how you communicate this with an employer that’s done in a way that is respected by the employer, rather than, “Oh, she’s just really hormonal.”
So, there is work being done. The trusts that I work for have developed a workplace policy around the menopause. They have a specialist menopause clinic within the trust, which is really excellent.
But there is a really exhaustive list. The mood swings, the irritability, the rage that can come up, and the changes in your skin which you, if you are informed, will understand that that’s about the loss of estrogen.
There’s lots. And it will be so individual. The most traumatic thing for me was the memory loss, because within the memory loss was a complete loss of confidence. I went from a really high-functioning woman—a multitasker and alert—to literally feeling like a wreck who couldn’t remember. I would be sitting, talking to a patient, and I would know all the information—and it’s like, the word would be there somewhere, but it would just be a complete blank. At one point I really did think I was going mad, and it was all down to a complete hormonal imbalance. It’s taken about four different HRT regimes to reach where I am now, which is good. It’s not perfect, but it’s good.
Wilder: Near the beginning of the guide, it states, “Some symptoms of the menopause can be very similar to some of the symptoms of HIV. And during the menopause women sometimes worry that their HIV is no longer under control.” Can you talk more about this concern, and why it was important to include that statement in the guide?
Strachan: I cautiously say it’s well known that night sweats can be a symptom of HIV, because I don’t want to assume that all the audience reading this knows. It can definitely be a symptom of somebody who is undiagnosed, so therefore, untreated. I know people where they still experience night sweats, even though they’re on medication and have an undetectable viral load. These symptoms don’t necessarily go away for everybody.
The other thing is that there are other conditions that would be representative of a potential secondary comorbidity, which might be TB or a lymphoma, both of which can be common or an increased risk factor for people living with HIV. So, for somebody who, for instance, is stable on antiretroviral medication but starts experiencing night sweats, it might have been something that they experienced way back earlier on in their diagnosis and could cause concern. Yet, in terms of women of a perimenopausal age, it’s a potential symptom.
Also, there’s fatigue. The fatigue could be due to HIV. It could be a side effect of the medication. One thing that you wouldn’t associate with HIV is a hot flush. If somebody starts to experience hot flushes, there wouldn’t be a concern from a clinician’s element of, “There’s something going on with your HIV.”
So, there are a couple of examples. And again, it does feed into the need for the information to be out there, not just for the patient, but also for the clinician.
Efforts to Reach as Many Women as Possible
Wilder: I realize that this was a guide that was created in the U.K. and came about because of women who live in the area working together. Do you feel like this is a guide that women with HIV from other parts of the world can benefit from?
Strachan: Totally. We are talking to a number of organizations in Europe. We’ve had such an amazing response globally for this resource. We’re in the process of having it translated into about 15 different languages. We’ve reached women in Jamaica, and we are working with an organization in the Netherlands and having it translated there. Part of that conversation is that we have to take into consideration the differences in health care in these countries.
Also, very interestingly for us and a learning for us, was women’s want or desire to actually take HRT. There was a piece of research that was undertaken in the U.K. by Dr. Shema Tariq—it was the PRIME Study. One of the findings there was that there was very low uptake of HRT amongst women living with HIV. Some of that was driven by the outdated information about increasing cancer risks and stuff like that.
But the other element, which was true for me, was about the pill burden. I was very clear at the beginning, for me, that I didn’t want to take another tablet. And yet, they put me on a tablet.
There’s a classic example of, with a menopause mentor, where you may have a woman who’s coming back and saying, “Look. I’ve gone back to my GP [general practitioner, a primary care physician in the U.K.] three times. They still won’t put me on a patch. But the pill isn’t working for me.” So that’s where that kind of support can come in.
So, it’s about making it country specific. There are going to be countries that don’t have the same HRT that is relevant to the U.K. But we are totally open to collaboration with other organizations in different countries to make it country specific and adapt the information that suits their country.
I appreciate the size of America, for instance—that could be quite tricky. But also, your health care system is very different currently to the U.K. one. And also, the epidemic in America is very different to the U.K. But, yes—we want this to reach as many women as possible, and we will work with whoever wants to work with us to ensure that happens.
Wilder: I really appreciate you talking to me about this. I think it is so important. Is there anything that you’d like to share in closing that we haven’t already talked about?
Strachan: We have developed a national campaign, and the advocacy asks, as far as we’re concerned, can be taken anywhere in the globe. So if you, as an organization or as an individual or as a policymaker or as a commissioner in your whatever-country-you’re-in reading this, sees our advocacy asks and believes that this needs to happen for women living with HIV, then use it.
In the same way, if you would like to collaborate with us to ensure that this resource, specific around the menopause, can help educate and inform and empower your community of women living with HIV, then reach out to us.
But to everybody: Every single [cisgender] woman is going to experience the menopause. And everybody has the right to accessible information and education. You can make that happen with this resource.