The Symptoms No One Connected
The silence around perimenopause is sustained by what research misses, what training skips, what funding overlooks, and what care fails to connect.
If you are a woman somewhere in your forties, some of this may already be happening to you, and no one may have told you why.
It begins quietly. You wake up one morning and your knees ache, and you cannot think of a single reason why. A few weeks later your shoulder stiffens and you cannot reach the top shelf. You are fine, then you are crying, then you are fine again. You are hot. You are cold. Some nights you wake at three in the morning soaked through, heart racing, and you lie there wondering what is wrong with you. You are tired in a way that sleep does not fix.
You do not connect any of it. Why would you? No one told you these things travel together.
This is perimenopause, the years before the last period, and for many women it stretches close to a decade. Some women are hit hard. Some barely notice the shift. Many feel a version of it and reach for an explanation that has nothing to do with hormones, because that is the only story they were ever handed.
The knee pain may have a name. So may the frozen shoulder. In late 2024 a group of researchers proposed a term for this wider cluster, the musculoskeletal syndrome of menopause. The numbers are not small. Around seven in ten women in the transition report joint and muscle pain, and for roughly a quarter of them it is bad enough to change how they move through an ordinary day. The pain travels, turning up in one joint and then another.
This is one cluster among many. The same hormonal shift can arrive as anxiety, broken sleep, brain fog, a temper that surprises you, heavier bleeding, a body that stops responding the way it used to. Different women meet it through different doors.
What they share is the dismissal. The tests come back clean. The bloodwork looks normal. She is told she is just getting older, or that she should lose some weight, or that it is stress. She goes home with a body that feels ten years past where it was six months ago, and no words to explain it. A normal test result should not end the conversation while the pattern is still speaking.
Here is the part that should unsettle us. That cluster had no name until recently, in a field that has studied women’s bodies for more than a century. Women felt it the whole time. The knowledge had simply not been built, named, or taught with enough seriousness.
Money does more than pay for care. It decides which questions get asked, which symptoms get named, and which women are studied closely enough to be believed.
This is why the news in June mattered. Melinda French Gates put another 215 million dollars into women’s health, and she named midlife and menopause as a clear priority. Her total commitment over two years now sits above 600 million. She has been open about what she is doing. She is sending a signal to other people with money that this is a category worth backing, and that women’s health does not have to remain the thing everyone calls important and too few people fund.
I want to be glad about this, and I am. More money and more attention can move research that should have moved decades ago. The silence has lasted long enough, and the cost of it is finally too visible to ignore.
Then comes the harder question. Where is the signal pointed?
Most of what medicine knows about this transition was learned from women in high-income countries, and mostly from white women. The largest and longest-running study of the menopause transition we have, the Study of Women’s Health Across the Nation, followed women across the United States. It did something rare and worth crediting. It included Black, Hispanic, Chinese, Japanese and white women, and it showed that the experience is not the same across them.
Black women tend to reach menopause earlier, stay in the transition longer, carry heavier and longer-lasting symptoms, and are less likely to be offered treatment for any of it. Researchers have a word for the wear that chronic stress and discrimination put on the body over time. They call it weathering.
Now hold that study next to the woman in Nairobi, Cotonou, Maseru, Bissau or Ndjamena. The evidence that shaped her doctor’s training was not built on her body. The studies that exist on African women are comparatively few, scattered and small. Those few studies suggest that some women may reach menopause earlier than the textbook age of fifty-one, often somewhere in their late forties, with their own pattern of symptoms. We are mostly guessing.
Her clinician, if she has one, likely trained on material that rarely covered menopause in any depth. She arrives with knees that ache and nights that burn, and the system meets her with a shrug shaped by data that rarely included women like her.
I keep returning to the same thought across this series. The failure here belongs to no single person. Researchers studied the bodies that were easiest to reach. Medical training left a gap and never closed it. Health systems built around acute illness kept little room for a slow transition. Funding followed attention, and attention was elsewhere. Women, taught that this was private and a little shameful, kept the silence with one another. All of us could have done better. All of us still can.
Talk about it. Name the knee pain to your sister, your friend, your doctor. Ask whether what you are feeling could be part of the transition, and keep asking if the first answer is that you are simply getting older.
Clinicians can read the pattern even when the test result reads normal. Funders can send the new money toward the women who have been counted least. Researchers can build evidence that finally includes the woman in Nairobi, Cotonou, Maseru, Bissau and Ndjamena.
The woman in Maseru deserves to be counted inside the evidence. Right now she is spoken for by data built on other women.
This phase was always going to come. The silence around it did not have to.
Endometriosis: What Happens After Women Are Finally Believed
Part two of a series on the conditions women are taught to carry quietly
Last week I wrote about adenomyosis, the condition that hides because almost no one gives it a name. Endometriosis is different. Many people have heard of it. It has an awareness month, foundations, research centres, and women with large platforms who speak about it openly. The usual story is that women are not believed, and in many cases that is true. But disbelief is not the only failure. Pain is also minimized, normalized, misread, or treated as something a woman must simply learn to manage. I want to follow the story further than recognition.
Endometriosis happens when tissue similar to the lining inside the uterus grows outside the uterus. It can be found on the ovaries, fallopian tubes, bowel, bladder, and other parts of the pelvis. In some cases, it is found beyond the pelvis. This tissue responds to hormonal changes, which means it can swell, bleed, and trigger inflammation. Because it is outside the uterus, the body cannot shed it in the same way it sheds a period. Over time, this can lead to pain, scarring, and organs sticking to each other. For some women, the pain starts around their period. For others, it becomes pain that follows them through the month, affecting sex, bowel movements, urination, fertility, work, school, and daily life. Roughly one in ten women and girls of reproductive age live with endometriosis, about 190 million people globally.
The part that holds my attention as a practitioner is not only the seven to ten years that often pass before diagnosis, long as those years are. It is what we hand a woman once the name finally arrives. The options on offer can help and often do. Hormonal therapy, which uses medicines such as contraceptive pills, injections, implants, or other hormone-regulating drugs, can reduce bleeding, slow the activity of endometriosis tissue, and quiet pain for many women. Excision surgery, where a trained surgeon cuts out endometriosis lesions rather than simply burning the surface, can bring real relief when it is available and done well. Pain management, pelvic floor therapy, and fertility support each have their place when a woman can reach them.
The problem is rarely any single one of these options. The problem is that they often arrive as a narrow menu rather than a pathway built around a life. Too often, a woman is left to navigate that menu largely alone: manage symptoms, weigh surgery, watch for recurrence, protect her fertility if she still can, and keep rebuilding her days around a condition no one has fully designed care around. There is no cure at the end of it, which makes the shape of the care matter all the more.
The issue is not that these options have no value. Many women need them, and many women benefit from them. The issue is that care is still too often organized around the disease rather than the woman living with it. It is built around the lesion, the bleeding, the scan, the prescription, the surgery, and the next appointment. It is less often built around the child she may want, the job she cannot keep losing days from, the relationship under strain, the school she is missing, or the ordinary Tuesday she would like to live without counting the hours.
That is a design failure, and design failures have design answers. This is where the conversation usually stops. It is where I think it should start.
People-centred care appears in many health strategies, but too often it disappears at the point where women need it most: diagnosis, treatment choices, pain management, fertility decisions, and long-term support. Human-centred design would begin with the woman’s own definition of a good outcome, not only the clinicians. Social and behaviour change would reach the silence that keeps her from naming the pain at all, long before she ever sits in a clinic. Public health already has these disciplines. The question is why we have not applied them, with enough seriousness, to conditions like this.
I keep returning to the question I asked last week. Who failed them? This week I want to be more precise about where the weight falls. The burden is the woman’s, and that much is visible in any waiting room. The responsibility sits heaviest with the people who design care without her in the room: the ones who set the research budgets, who decide what counts as a treatment, and who decide what counts as success. The researcher, the clinician, the policymaker, the company, and the community all hold a share. The largest share belongs to whoever holds the pen when the system is drawn, because that is the moment a woman’s life is either kept in view or left out of the picture.
The gap widens across many African settings. For decades, endometriosis was framed in medical literature as a condition more commonly seen among white, affluent women, and by inference, rare among Black women and women of African descent. That framing was not supported by evidence. It was shaped by who had access to diagnosis, specialist care, and surgical facilities, and by whose pain was taken seriously. A 2022 paper in Reproduction and Fertility documented how this misconception has directly contributed to long diagnostic delays, limited access to care, and a stark scarcity of research on endometriosis among African women. That history still has a clinical life. It shapes what is suspected, what is investigated, and how urgently pain is treated. In Uganda, a 2025 audit found that just four specialists remain to manage the condition across the entire country. Laparoscopic surgery, the most reliable diagnostic pathway, costs more than most families can afford. Specialist consultation is concentrated in urban centres and largely inaccessible through routine public services. A condition that is already hard to diagnose and treat becomes, here, one that many women may never get the chance to have properly named, let alone managed with care.
Recent clinical guidance has begun to shift away from making surgery the price of a diagnosis. The 2022 guideline from the European Society of Human Reproduction and Embryology supports diagnosis based on symptoms, examination, and imaging where appropriate, rather than requiring every woman to undergo laparoscopy before her care begins. The American College of Obstetricians and Gynecologists moved in the same direction with new guidance in early 2026. This matters, because it means a woman’s account of her own body is finally being taken more seriously. It also fixes the front door while leaving much of the room unchanged. The treatments available today are still largely the same one’s women were offered a generation ago.
I am staying with this series because the questions carry from one condition to the next. What did we know? Who should have acted? What do we owe the person living inside this body? Adenomyosis asked us to see what hides. Endometriosis asks us to look hard at what we offer once we have seen, and to admit that recognition without a better answer is only half a kindness. Perimenopause is next, and the same question waits there.
Over the coming weeks, I will sit with these questions. I hope you will sit with them too, not only as readers, but as practitioners, funders, researchers, policymakers, and women who know that being believed should be the beginning of care, not the end of it.
If you are working on women’s health, public health systems, care pathways, research, or community-centred programming, we would be glad to connect. Orpesi Collective supports partners to design approaches that begin with people’s lived realities and move toward practical, lasting change.
Reach us at info@orpesicollective.org.
Adenomyosis: The Condition Too Many Women Suffer Through Before It Is Named
I am a public health practitioner working in women’s health. I am also a woman. Those two facts sit in the same body, and they do not always agree with each other.
When I visit my gynaecologist, I rarely leave on time. I ask too many questions. I follow the answers into places most appointments do not have room for. Part of that is temperament. Most of it is what I carry from working in this field, where I have watched women describe pain that the system has trained itself not to hear.
Adenomyosis is one of those places the conversation rarely reaches.
Say the word out loud and watch what happens. People pause. They ask you to repeat it. Many have heard of endometriosis, and a few can describe it. Adenomyosis lands as something new, even among women who have lived with its symptoms for years. That gap between how common the symptoms can be and how rarely the condition is named carries the whole story.
Let me explain it plainly. Adenomyosis happens when tissue similar to the lining of the uterus grows into the muscular wall of the uterus itself. It can cause heavy bleeding, deep menstrual pain, chronic pelvic pain, an enlarged uterus, and exhaustion that many women carry while being told their periods are simply difficult. Some women may also experience fertility challenges, while others may have few or no symptoms at all. That variation is part of what makes the condition so easy to miss.
Here is what unsettles me as a practitioner. Adenomyosis has been recognized in medical literature for more than a century, yet for much of that time, the most certain diagnosis came only after hysterectomy, when the uterus could be examined directly. Think about what that means. For generations, the clearest confirmation often came after a woman had already lost the organ at the centre of the pain. Imaging has shifted the standard of practice. Transvaginal ultrasound and MRI can now support diagnosis without surgery, but they offer probability, not certainty, and only when the tools are available, the signs are recognized, and the person interpreting the results knows what to look for. In many health systems across Africa and beyond, that level of access still sits far out of reach.
Women wait, and the waiting compounds. They are told their pain is normal. They adjust their lives around it. They learn to plan their months around bleeding they cannot predict. Years pass before anyone names the condition, and a good deal of trust has been spent along the way.
I keep returning to one question. Who failed them?
The honest answer is that the failure is shared, and it runs through every level of the system. Research and funding decided long ago that this pain sat low on the list, and the science moved too slowly. Medical training has not equipped enough clinicians to recognize the condition early or to hold the conversation with care. Health systems offer no clear pathway, and they rarely measure whether a woman’s quality of life improves. Industry has too often followed the treatments that are easiest to package, rather than the care pathways women need across their reproductive lives. Families and communities’ taught generations of girls that suffering quietly was a form of strength.
Women themselves learned to doubt their own bodies. That last part is the one I want to handle gently, because it is real, and it carries no blame. You cannot name what no one gave you the words for.
This is why I think of it as a shared responsibility. The researcher, the clinician, the policymaker, the company, the community, and the woman who has been taught to wait each sit somewhere in this story. No single villain stands at the centre of it. A web of small refusals to act adds up to one woman in a waiting room, wondering whether she is imagining her own pain.
I am starting this series with adenomyosis for that reason. If we can learn to see the condition that hides best, we may also learn to see the systems that keep women’s pain unnamed for too long.
Endometriosis and perimenopause follow, and the same questions will travel with them. What did we know? Who should have acted? What do we owe the person living inside this body?
Over the coming weeks in June, I will sit with those questions. I hope you will sit with them too, not as observers, but as people who are part of the answer.
The Distance Between a Room and a Decision
I founded Orpesi Collective because I have lived this problem, not because I read about it.
Four years ago, I worked with two donors who made a choice that remains less common than it should be. They did not arrive with a predetermined answer. They funded a process with enough trust to allow learning, and enough discipline to demand a serious outcome. The mandate was clear: go into the market, understand what was actually needed, engage the full ecosystem, and build a sustainable model from what emerged.
My team and I took that seriously. Over two years, we engaged funders, government actors, private sector partners, young people, health practitioners, researchers, evaluators, and organizations working close to the realities we were trying to understand. We used a human-centered design approach to listen carefully, test assumptions, and gather what stakeholders actually needed, rather than what the sector assumed they needed.
That process produced an investment case, a three-year strategy, and four viable business model options. The approach was unusual, and it worked. It worked because the donors were willing to fund the conditions for learning, not only the outputs. They trusted the process long enough to let it produce something real.
That experience stayed with me. It shaped how I think about funding, institutional resilience, and the distance between good intentions and decisions that change the trajectory of an organization. It also shaped what Orpesi is now being built to do.
The reason I am writing this now is that recent conversations about financing, localization, and sustainable development have made it difficult to stay quiet. Across conferences, published reflections, and sector convenings, the language has shifted in the right direction. The intent, in many rooms, feels genuine. Local leadership is no longer being treated as a side conversation. Equitable partnership is now part of the mainstream vocabulary. There is growing recognition that development architecture cannot remain sustainable if the organizations closest to the work remain structurally underfunded.
The distance between that intent and a decision that changes the trajectory of a local institution, however, remains significant. Naming that distance honestly is what this piece is about.
Across this series, I have tried to name what is still too often left unsaid. The money exists, but the path to it does not. The back-office burden is structural, not incidental. Outcomes-based financing has the right theory but often the wrong design. The old architecture has fractured and rebuilding it along the same lines will produce the same results.
The series has been building toward a simple and uncomfortable truth: the tools exist, the models exist, and the locally led organizations exist. What remains missing is not innovation. It is the willingness, from every actor in the ecosystem, to take responsibility for closing the gap between what is said and what is funded.
There are two sides to this coin, and both matter.
Funders who are serious about locally led development need to stop designing systems that make it structurally difficult to achieve. Due diligence processes built for large international actors, grant cycles that leave little room for organizational learning, and reporting requirements that consume the capacity they claim to be strengthening are not neutral features of the system. They are design choices, and they can be changed.
Flexibility and trust are not soft virtues. They are strategic decisions. The donors in my own experience made those decisions deliberately. They did not abandon accountability. They created the conditions for better accountability by allowing the work to be shaped by evidence, engagement, and learning before locking it into a fixed model. That is not charity. It is strategy.
Locally led organizations also have work to do, although that work must be understood within the reality of unequal power and constrained resources. The strongest case for a different funding architecture is not only a well-worded proposal or a powerful critique of the current system. It is also an organization that has built its own systems, documented its own outcomes, understood its cost structure, and arrived at the table with evidence that makes the argument difficult to ignore.
Advocating for a fairer system is legitimate and necessary. Building the institutional discipline to absorb and manage direct investment is equally important. One cannot replace the other. The sector needs more funders willing to change how they invest, and more local organizations supported to build the systems, evidence, and confidence required to receive and shape that investment on their own terms.
Evaluators, learning partners, and storytellers also carry a responsibility that is rarely named directly. The evidence of what works in locally led development exists. The stories of organizations that have built something durable exist. What remains thin is rigorous, accessible, and emotionally resonant documentation of those lessons at the scale needed to shift funder behaviour. Evidence does not always move people on its own. Evidence told well can. That is a craft, and it deserves investment.
Orpesi sits in the middle of this deliberately. Our work is not about helping locally led organizations fit into a system that was not built for them. It is about supporting the redesign of how strategy, institutional strength, learning, and financing come together so that these organizations can deliver, grow, and be trusted at scale. The conviction behind that work is clear: locally led organizations should not have to choose between doing the work and becoming fundable. Those two things should be the same project.
We are still in the early stages of building this, but the direction is not in question.
The donors in my story chose flexibility over control. The organization inside that process did not squander it. Something was built that the ecosystem valued enough to absorb and sustain. That outcome was not accidental. It required a certain kind of funder, a certain kind of team, and a process that took the question seriously before reaching for an answer.
None of those conditions are impossible. They are choices. The question this series has been asking, from the first piece to this final one, is who is willing to make them.
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This is the final piece in Orpesi's series on institutional resilience, locally led development, and the financing architecture that either enables or prevents both. To continue this conversation, reach Orpesi at info@orpesicollective.org
Global Conferences Are Talking About Local Leadership. Where Is the Direct Investment?
In May 2026, a particularly full week of international development convenings unfolded across several global spaces. The World Health Assembly was taking place in Geneva, the Global Partnerships Conference was underway in London, and several other forums were happening in parallel across the sector. For those of us who follow international development closely, it was a week filled with updates, session summaries, reflections, photographs of panels, and glimpses of side conversations. I followed from a distance, taking in the themes, the language, and the signals emerging about the future of development. Much of it was genuinely encouraging, particularly the growing consensus around local actors, equitable partnerships, and the need to rethink what a sustainable development architecture should look like going forward.
At the same time, I kept returning to a question I could not quite set aside.
When we consider the full cost of a week like this one, the flights, the venues, the staff time, the side events, the publications timed to coincide with each convening, a different kind of calculation becomes possible. The relationships formed in those rooms are real, the conversations matter, and commitments made at that level can move significant resources. That is precisely what makes the question worth asking: how much of the energy concentrated in those rooms this week translated directly into investment in a local organization that is trying to build itself into something durable?
The Global Partnerships Conference included a session framing local actors as designers of development's future and asking how traditional institutions could better support that vision. It is the right question. What I would love to see alongside it is a different kind of session, one where the people present make live, named commitments to specific local organizations, where the conversation moves from "how do we support local leadership in principle" to "here is what we are funding, who we are funding directly, and what we are trusting them to build." Those rooms carry that authority. The format does not always create space to use it.
There is also something worth sitting with regarding the sheer volume of simultaneous events. Each convening has its own logic and its own constituency, and I understand why the ecosystem looks the way it does. For local organizations working in the systems these conferences discuss, though, the fragmentation creates real costs. Tracking multiple agendas, preparing for multiple engagement opportunities, synthesizing multiple sets of signals about where priorities are moving: all of that absorbs capacity that smaller organizations cannot easily spare. The organizations with the least slack carry the highest cost of a sector that convenes itself frequently and across many rooms.
What I keep returning to is that there is genuine momentum right now. The language has shifted, the intent feels real, and weeks like this one are part of how that momentum builds. The question I am holding is how to close the distance between a commitment made in a conference room and a decision that changes the trajectory of a local institution in Nairobi, or Dhaka, or Kampala six months from now. That closing of distance requires fewer intermediary steps, longer funding horizons, more direct relationships between investors and institutions, and a willingness to fund the infrastructure of an organization, its governance, its financial systems, its ability to learn and adapt, rather than only the programs it delivers.
The conversations happening this week are the right conversations. What I am watching for now is how the commitments that emerged from them show up in the partnership agreements and budgets that follow.
The Money Exists. The Path to It Doesn’t.
The money for women’s and girls’ health exists. It is committed, announced, and tracked. What does not exist is a system that allows the organizations closest to communities to access it. For example, in Kisumu, a community health worker knows exactly which girls have dropped out of school, which mothers have stopped coming to the clinic, and why. She has built that knowledge over years. The organization she works for is effective by every measure that matters on the ground. It is largely invisible to the system that controls funding. This is not an isolated case. It is how the system works.
There is growing interest in locally led and outcomes-focused financing. The intent is right, but the design is not. Most funding systems were built for large international actors, with layers of compliance, reporting, and risk management that smaller, locally led organizations were never resourced to carry. The result is a contradiction we are not naming clearly enough. Funders say they want to resource local organizations, while continuing to use systems that exclude them. What we are seeing is not a capacity gap. It is a design failure. Until that is addressed, the organizations with the deepest reach into communities will continue to sit outside the funding structures that claim to prioritize them.
How the system was built, and why it is holding.
For the past two decades, global health funding has followed a familiar structure. Donor governments and major foundations allocate funding to international organizations, multilateral agencies, and large contractors. These actors then subcontract local partners to deliver work on the ground.
This model created scale, but it also created distance. By the time funding reaches a community health worker, it has passed through multiple layers of management, compliance, and reporting, each shaping what is funded, how it is delivered, and how success is defined. That system is now under strain. Funding is tightening. Political priorities are shifting. Large bilateral flows are becoming less predictable. The question is no longer how to restore that pipeline. It is whether that pipeline was ever designed to support locally led delivery in the first place.
The localization gap is structural
The gap between intent and reality is not subtle. Most funding systems rely on due diligence processes, financial management requirements, and reporting structures designed for large organizations with established infrastructure. When these same systems are applied to locally led organizations with smaller teams and deep community relationships, the conclusion is often that they are “not ready.”
That framing misses the point. The infrastructure required to meet these expectations was never something most local organizations were funded to build. Expecting it to exist without investing in it creates a circular logic that keeps the same actors at the center of funding flows. The focus, then, remains on strengthening individual organizations to meet existing standards, rather than questioning whether the standards themselves are fit for purpose.
New financing models are often presented as a way forward, but they are not a silver bullet. Two approaches in particular are receiving increased attention : trust-based giving and outcomes-based financing. Both respond to real limitations in the current system. Neither automatically resolves them. Trust-based approaches shift the relationship between funders and organizations. They reduce administrative burden, extend timelines, and place more emphasis on long-term outcomes, creating space to respond to what is actually happening in communities. But access remains uneven. Entry into these funding relationships is often relational, and many locally led organizations remain outside those networks.
Outcomes-based financing shifts the focus to results rather than activities. In principle, this should favor organizations that deliver meaningful outcomes, regardless of size. In practice, it introduces new requirements. Organizations need upfront capital, reliable data systems, and the ability to absorb financial risk if results fall short. These conditions tend to advantage larger actors. These models are not flawed in themselves. They are operating within a system that has not been redesigned to support them.The conversation we are not having enough: aggregation
There is one idea that remains underdeveloped, and it is central to making any of this work. Individually, most locally led organizations will not meet the threshold that large funders require. The transaction costs are high, the perceived risk is concentrated, and the infrastructure needed to manage large grants is difficult to sustain at that level.
The sector’s default response has been to strengthen individual organizations, improve their systems, support proposal development, and build compliance capacity. That work matters, but it is not enough. The issue is not only the capacity of individual organizations. It is the unit through which funding is structured.
Aggregation changes that unit.
When locally led organizations operate as networks with shared accountability frameworks, pooled data, and coordinated delivery models, they become legible in a different way. They shift from being seen as small, high-risk actors to being recognized as collective delivery systems with scale and reach. This is not about merging organizations or creating additional layers that dilute value. Poorly designed aggregation can replicate the same inefficiencies the sector is trying to move away from.
When done well, aggregation distributes risk across multiple organizations rather than concentrating it in one, creates shared infrastructure for financial management, data, and reporting that no single organization would realistically sustain alone, and allows funders to engage at scale while maintaining the contextual depth that sits within each organization.
In our work with locally led organizations, one pattern is becoming clear. The most significant shift is unlikely to come from any single organization becoming more “fundable” on its own. It will come from organizations becoming visible and credible together in ways that none of them could achieve individually. This is where aggregation becomes a viable pathway, not as theory, but as a practical response to the concerns funders are already raising around scale, risk, and accountability. If outcomes-based and trust-based financing are to work for locally led actors at scale, aggregation is not a side idea. It is one of the few pathways that can make both models viable in practice.
What practitioners can do now
Most organizations do not have the luxury of waiting for systems to change. There are practical steps that can be taken within current constraints. The first is clarity on outcomes. Not activities or outputs, but what is changing in the lives of the people you serve. This requires disciplined thinking and consistent documentation. The second is strengthening core institutional foundations. Financial records that can withstand scrutiny. Governance structures that function in practice. Clear accountability mechanisms. These are the basis on which trust is built. The third is intentional network building. Identifying peer organizations working on related challenges and investing in relationships before a funding opportunity requires them. Networks built over time are more likely to function as genuine delivery systems rather than transactional alliances.
What needs to change
The community health worker in Kisumu will continue doing her work regardless of how the system responds. The question is whether the system will continue to operate at a distance from that reality. What needs to change is structural. Funders will need to redesign due diligence processes, so they are proportionate to organizational scale. They will need to invest in institutional infrastructure as part of funding, not as a precondition for accessing it. And they will need to engage with aggregation models that allow impact to be understood and supported at a collective level. For locally led organizations, the path forward is not to replicate systems that were not built for them. It is to define, together, what credible, accountable, and scalable delivery looks like in their context, and to build toward that collectively. This is where the next phase of work sits.
At Orpesi, we are working alongside organizations and networks that are navigating this shift. The work is not about helping individual organizations fit existing systems. It is about redesigning how strategy, institutional strength, and financing come together so that locally led actors can deliver, grow, and be trusted at scale.
The money and ambition exist. The missing piece is the system that connects them in a way that reflects how change actually happens on the ground. That system can be built. The question is who is willing to build it differently.
Mental Health Is Already in Your Programs. Most Organizations Just Haven't Looked
A reflection on mental health, the silence we inherited, and the work that comes next.
I don't know where to start! That was my answer.
A friend, and a colleague I respect deeply in this industry, looked at me across the table and asked what I thought of mental health, and whether it was a topic I wanted to explore through my organization. I had walked in carrying a story I had not planned to tell. A few weeks before, a parent had shared in our school’s WhatsApp group that a friend’s daughter had taken her own life. The girl was young. She was not unwell in any of the ways we have been taught to recognize. The people who had loved her had no warning, no pattern to point at, no language ready for what had just happened to them.
It turned out my friend knew this family. So I told her about the girl first, before I answered her question, and I told her about the conversation I sat my own children down for the next morning. Because of where I have spent my career, in reproductive health, I do not believe in withholding hard topics from children when they are old enough to ask hard questions. I asked them what they understood about suicide. I asked them whether they had ever felt close to a place they could not return from on their own. I listened more than I spoke.
Then I answered her. I told her I would love to do more in this space, but I did not know where to start. And as soon as the words were out, I wondered whether that was a strategic thing for someone in my position to say. Strategic people are supposed to walk in with a thesis, an entry point, a positioning statement. I think the truth, especially in mental health, is that the people who pretend to know exactly where to start are the ones we should be most cautious about.
What follows is not a strategy memo. It is me thinking out loud, on the page, about a problem I am no longer able to set down.
What I grew up believing
When I was growing up, suicide existed. It was almost certainly underreported, but the more important fact is that it was almost never discussed. There was an embarrassment around it, a shame that landed on the family of the person who had died. People did not say the word out loud. They said “she passed” or “he was sick for a long time,” and the rest was implied through silence. What that silence taught a generation of us is that mental anguish is a private failure. That feeling unwell in your mind is something you manage in the dark, on your own, until you cannot anymore. That asking for help is the same as admitting to a flaw in character. We have moved less far from that than we like to believe.
What the numbers actually say
The World Health Organization estimates that close to one billion people globally live with a mental health condition. In low- and middle-income countries, between seventy and eighty five percent of those who need care do not receive it. Across much of sub-Saharan Africa, there are fewer than one psychiatrist per one hundred thousand people, with some countries reporting extremely limited specialist capacity. Suicide remains among the leading causes of death for young people aged fifteen to twenty-nine globally, with growing concern about rising mental distress among adolescent girls and young women in several contexts.
The treatment gap is the headline. The gap underneath the gap is harder to capture in a statistic. It is the distance between the language we use for mental distress and the languages people speak at home. It is the distance between formal services and the people who would never walk into them. It is the distance between a clinical diagnosis and a young woman who simply could not see a way through her week.
What has already been tried
It would be unfair, and inaccurate, to pretend that nothing has been done.
The WHO’s mhGAP programme has spent more than a decade translating specialist mental health knowledge into protocols that non-specialists, including primary care nurses and community workers, can use. The Friendship Bench in Zimbabwe, designed by Dixon Chibanda, trained grandmothers to deliver problem-solving therapy on wooden benches outside clinics, and produced outcomes for depression and anxiety that rivalled clinical care. StrongMinds in Uganda has scaled group interpersonal therapy through lay counsellors. BasicNeeds has worked across Africa and Asia to integrate mental health with livelihoods and rights. The Lancet Commission on Global Mental Health put serious intellectual weight behind reframing mental health as a development priority rather than a niche specialty.
These are real efforts, designed by serious people, and many of them work. But they sit inside a global ecosystem that still treats mental health as a vertical, a side programme, a thing that earns a paragraph in a national health plan and less than two percent of the health budget. They have not been brought to the scale the problem demands. And they are not yet woven into the systems that touch most people’s lives most often: schools, workplaces, primary care, social protection, faith communities, and families.
Where the real gaps are
If you spend any time looking honestly at this field, three gaps come into view. The first is a workforce gap. There will never be enough psychiatrists in Africa and Asia to meet the need through specialist care alone. This is not a temporary shortage. It is a structural reality. It means any serious mental health response has to be built around task-shifting, lay providers, and trusted community figures, with specialists held in reserve for the most acute cases.
The second is a systems gap. Mental health is treated as a thing that lives in clinics, when in fact it shows up in classrooms, in employment offices, in police stations, in maternal health visits, in refugee camps, and in almost every social service interaction a person has. The systems that touch people are not equipped to recognize mental distress, let alone respond to it. Teachers are not trained. Frontline health workers are not trained. Managers are not trained. Parents, like me, are mostly not trained.
The third is a conversation gap. Even if we built the workforce and re-engineered the systems, we would still be left with the silence I grew up inside. The shame. The suspicion that something is wrong with you if you cannot manage on your own. The belief that the people in your life would think less of you if they knew. This gap is cultural, and it does not close from the top.
Why a human-centered approach is not optional
A great deal of what has been tried in mental health, across Africa and Asia and elsewhere, has fallen short for a single reason. It was designed without enough listening. Programmes get built around a clinical category, a screening tool validated in another context, a manual translated into a local language but not adapted to a local logic. They are launched with the assumption that if we hold a community sensitization meeting and put up a poster, people will walk in. Most of the time, people do not. And when we ask why, we discover that the architecture of the programme: who delivers it, where it is delivered, what it is called, how it is paid for, was decided in a room that did not include the people the programme was meant to serve.
A human-centered approach starts in a different place. It begins with the question of what mental distress actually looks like in this community, in this school, in this workplace, and in this family. It asks who people already turn to when they are unwell, and whether those people, the aunt, the pastor, the form teacher, the WhatsApp group, the grandmother on the bench, can be supported rather than replaced. It treats stigma not as a target to be reduced through messaging but as a design constraint to be engineered around.
Designed this way, mental health programmes look less like clinics and more like seams in everyday life. A maternal health visit that includes a real conversation about how a mother is sleeping and feeling. A school where teachers are supported to notice the child who has gone quiet. A workplace where managers can name what they are seeing without reaching for a referral form. A WhatsApp group where a parent can share the news of a death by suicide and receive something other than silence.
Why mental health has to be an intersectoral conversation
This is where I find myself returning to my reproductive health background. We learned, slowly and at significant cost, that reproductive health could not be solved as a vertical. The most consequential work happened where reproductive health intersected with education, with adolescent development, with gender, with livelihoods, with rights, and with the way young people moved through the systems around them. The technical interventions were necessary but not sufficient. The integration was where the change actually lived.
Mental health is the same shape of problem. Treating it as a stand-alone health issue makes it harder, not easier, to reach the people who need it. The integration points are everywhere if we are willing to look. Adolescent girls’ programmes that already operate across Africa and Asia are a natural home. Primary care platforms, where pregnant women and new mothers are already showing up, are a natural home. School systems are a natural home. Workplace wellness, in formal sectors and increasingly in informal ones, is a natural home. Social protection programmes, faith institutions, and community-based organizations are all natural homes.
An intersectoral approach does not mean adding mental health to everyone’s job. It means recognizing that mental health is already in everyone’s work, often unrecognized, and helping the systems around it become competent at noticing and responding. It means designing partnerships across ministries, across sectors, and across the artificial boundary between health and not-health.
So what, for Orpesi
This is the question we ask ourselves at Orpesi about everything we work on. So what. Why does it matter that we, specifically, take this on. What do we add that is not already being added.
What I have come to believe, over the last few weeks of thinking about this, is that the gap in mental health is not primarily a knowledge gap. The evidence base is real. The models exist. The policy frameworks are written. The gap is a translation gap. It is the distance between what is known in academic and donor circles and what is actually built and sustained inside organizations on the ground.
That is the work Orpesi was set up to do. Designing programmes that fit the contexts they will run in. Strengthening the institutions that will carry those programmes after the funding cycle ends. Turning what has been learned into what others can act on. We do not need to become a mental health implementer. We need to help the organizations we already work with, in adolescent health, in education, in livelihoods, in social protection, in primary care, recognize the mental health that is already inside their work and respond to it well.
The call to action is therefore not for Orpesi alone. It is for funders, for governments, for INGOs, and for the locally led organizations that already serve the communities where mental distress is rising. Stop treating mental health as a separate problem awaiting a separate solution. Bring it into the work you are already doing, the people you already trust, the systems you already hold. Do that with the discipline of listening first, designing with people rather than for them, and staying long enough to see whether what was built actually held.
Where I am starting
I told my friend I did not know where to start. I think I was wrong about that, in a small way. The starting place was the conversation we were having. The starting place was the conversation I had with my children. The starting place is every WhatsApp group, every staff meeting, every school assembly, every clinic waiting room where someone has the chance to break the silence and chooses to.
I do not believe Orpesi will solve mental health. I do not believe anyone will. But I do believe that if we apply the way we already work, listening hard, designing with rather than for, building institutions that can carry what is started, and translating what is learned into what others can use, to a problem this big and this human, we will be useful. And that, in the end, is a strategic thing to say.
Beyond the Slogans: Who Funds Real Change?
When the funding tide recedes, who is left carrying the weight of change?
This afternoon, I joined a session hosted by YieldHub and FEMNET on Financing Youth and Feminist Futures: From Tokenism to True Investment. Again and again, I heard the same refrain: we have been asked to show up, share our stories, and move mountains while receiving short-term project funds, rigid frameworks that stifle innovation, and almost no trust. Young people in the room said they do not only need a seat at the table but resources to back their ideas and their work. As leaders gather this week in Sevilla in Spain to renew global financing commitments, I can’t help but wonder: How many more decades will we diagnose the problem without building the courage and flexible, sustained funding to finally do something about it?
The last few months have been hard. I’ve watched the dismantling of global health programs, the quiet retreat of investors, and the shrinking of aid that so many communities rely on.
I spend a significant amount of my time working alongside small organizations. These are people who show up every day with big dreams for their communities and a commitment that is humbling. Organizations like LVCT Health in Kenya, which has pioneered community-led HIV prevention. Or Reproductive Health Uganda, which has expanded reproductive care in rural areas. Or Pakachere Institute in Malawi, where Malawian professionals lead social behavior change grounded in local realities.
These groups know their context better than any consultant could. Yet, despite years of impact, they are still held to thresholds that few can meet without predictable support: compliance systems, reserves, and boards that tick every box.
At times, it feels like the market is correcting itself after years of inefficiency, but in a haphazard, not planned, way. The rhetoric of localization has become a convenient exit ramp. “It’s your turn now,” donors say as resources evaporate.
Where is the truth here? It lives in the tension between aspiration and infrastructure. Between calling for locally led transformation and actually funding the patient, the unglamorous work it takes to get there.
How do we move the middle?
It begins with being honest about the cost of building strong institutions. Rethinking what “risk” looks like and who gets the benefit of the doubt—funding not just programs but the backbone systems that sustain them.
And it also means remembering this:
This is not about the Global North versus the Global South. It is not a zero-sum contest where one side wins and the other loses. There is a place and a responsibility for both. Years of progress were achieved through collaboration: the innovation of a lab in Europe, working in conjunction with the insights of a nurse in Africa, and donor dollars combining with local government efforts to scale up treatment.
We should not throw away the good that has been built. There is space at the table for all contributors, including international and local NGOs, governments, community leaders, and private sector partners. What needs to change is how that table is arranged, and who sits at its head.
In an ideal future, communities in the Global South will be firmly at the helm of determining their health priorities. They must be, because they have the most at stake and the deepest understanding of what works. The Global North can still play a supportive role. That can mean funding (yes, funding will still be needed), sharing technology, convening responses to cross-border threats, and sometimes stepping back and listening more than talking.
The relationship must be built on mutual respect and accountability, not paternalism.
I remain a cautious optimist. Budgets are tightening, and uncertainties loom large. Yet I see determination in the local organizations I work with. I see donors grappling with how to do things differently, some earnestly trying to reform.
We may need a shock to force conversations that were easy to ignore during the boom years.
If we truly put our money where our mouth is, we can turn this into a turning point, not a disaster.
For me, the guiding light is leaving no one behind. In health, that means every community has access to care. And it also means no capable, passionate organization should be left behind because of arbitrary barriers or lack of support.
To solve the challenges ahead, we need all hands on deck. That includes small-town NGOs with big dreams and seasoned global funders alike.
Our challenge now is to move the middle and find the balance where local leadership and global solidarity meet.
If we can achieve that, then even in an era of shrinking aid, we will not be shrinking our ambitions to build a healthier, more equitable world for everyone.