PESHAWAR – HIV care for transgender people is often discussed in terms of awareness, testing, treatment and adherence. All are important. But one fundamental question receives less attention: who gets a say in how the HIV response is designed, funded and monitored?
If transgender people are expected to use health services but have little influence over the institutions and decisions shaping those services, exclusion can persist even when programmes are designed to be inclusive. A stronger HIV response therefore requires more than access to medicine. It requires meaningful transgender participation in health governance.
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This question matters in Khyber Pakhtunkhwa, where the HIV response has expanded but significant challenges remain in identifying people living with HIV and connecting them to care. Figures released in July 2026 by the Provincial AIDS Control Programme reported 10,655 registered people living with HIV, including 250 transgender people, while estimating the overall number of people living with HIV in the province at about 39,000.
The gap between registered and estimated cases does not explain who remains outside the formal system or why. It does, however, underline the limits of judging an HIV programme by treatment infrastructure alone. Understanding who is not being reached requires listening to communities whose experiences may remain largely invisible in administrative data.
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Representation must lead to influence
Inclusive governance begins with representation, but representation alone is not enough. Transgender people should have a meaningful role in setting priorities, designing programmes, reviewing services and monitoring outcomes.
Too often, communities are consulted after major decisions have already been made. Being invited to a meeting is not the same as having influence over its outcome.
Representation is not necessarily participation, and participation is not necessarily power. Meaningful inclusion requires access to information, space to question decisions and a genuine opportunity to influence priorities and resources.
Pakistan already has a legal framework recognising rights and protections for transgender people. The challenge is translating formal commitments into administrative practice and equitable public services.
In healthcare, this means examining whether procedures, budgets, institutional arrangements and accountability mechanisms respond to the needs of transgender people. In Khyber Pakhtunkhwa, government measures have recognised the importance of dignity and privacy in healthcare, including directions concerning registration arrangements, wards and washrooms.
Such measures matter. But inclusive governance must go beyond making healthcare institutions easier to enter. Transgender communities should also have a voice in determining how those institutions operate.
HIV vulnerability extends beyond the clinic
This is particularly important for HIV because vulnerability is shaped by conditions beyond the health system.
Discrimination in families, education, employment, housing and public spaces can contribute to economic insecurity, violence and social isolation. These conditions can affect whether someone gets tested, starts treatment or remains connected to care.
A person facing housing insecurity, unemployment or concerns about personal safety may struggle to attend regular appointments even when HIV medicines are available. HIV programmes therefore need mechanisms through which communities can identify these barriers and help ensure that institutional responses reflect people’s everyday realities.
Transgender-led organisations have an important role in this process. Their contribution, however, should not be limited to implementing programmes designed by others.
Community organisations often possess knowledge that government systems struggle to capture: why people avoid particular services, where confidentiality may be weak, how discrimination affects treatment continuity and which outreach approaches build trust.
The key governance question is whether this knowledge influences policy and budgets or is sought only when institutions need communities to mobilise participants.
Nothing about transgender health should be designed without meaningful transgender participation.
Better data must also protect privacy
Data presents another governance challenge. Without appropriately disaggregated information, disparities affecting transgender people can disappear within broader HIV statistics.
Governments need to understand whether transgender people are accessing testing, entering treatment and remaining in care. Yet collecting information about gender identity can create risks if confidentiality and data protection are weak.
The answer is neither statistical invisibility nor indiscriminate data collection. Information should be collected only for legitimate purposes, protected rigorously and used to improve services rather than expose individuals.
Transgender communities should have a voice in deciding what information is collected, why it is needed and how it is protected.
Sustainable funding matters
Financing is equally important. Inclusion cannot depend entirely on short-term projects.
Community engagement, outreach, monitoring and other activities that build trust require continuity. When funding disappears at the end of a project, relationships and expertise developed over years can disappear with it.
Governments and development partners should therefore consider how essential community-led functions can be financed sustainably while preserving the independence of civil society.
If participation exists only while a project is funded, inclusion itself becomes temporary.
Accountability should include communities
Accountability brings these issues together. HIV programmes understandably measure testing, treatment initiation, retention in care and viral suppression.
They should also examine whether services are equitable, confidentiality is protected, discrimination is addressed and affected communities have meaningful opportunities to influence decisions.
Complaint mechanisms must be safe and accessible, but accountability should not depend solely on individual patients filing complaints. Community monitoring, transparent reporting and regular review can help identify systemic problems before they become accepted practice.
Building a more inclusive HIV response
Inclusive governance also requires coordination. HIV does not sit neatly within a single institutional box, particularly when social exclusion affects health outcomes.
Health authorities, social welfare institutions and other relevant public bodies need clear responsibilities and mechanisms for working with transgender-led organisations and civil society.
Community participation should be built into these arrangements rather than added occasionally through consultation. The aim is not to create a separate HIV system for transgender people, but to make the existing system more responsive to people it has historically struggled to reach.
Ultimately, inclusive governance is about the distribution of power.
Policies can promise equality, clinics can provide medicines and programmes can organise consultations. But the deeper test is whether transgender people can influence decisions affecting their health, scrutinise how commitments are implemented and seek corrective action when institutions fail.
A meaningful HIV response for transgender people in Pakistan should therefore ask more than how many people received a service. It should ask whether transgender people helped shape that service, whether their knowledge influenced decisions, whether resources followed identified needs and whether institutions can be held accountable for results.
Healthier lives require inclusive services. Inclusive services, in turn, require inclusive governance.
