By Shobha Shukla
As long-term HIV survivors face stigma, fragmented healthcare and financial insecurity, community leaders call for a legally binding UN treaty that guarantees dignity, gender equality and government accountability for all older persons
As people living with HIV grow older, stigma, multiple age-related health conditions, financial insecurity and fragmented care threaten their rights and dignity. A legally binding UN treaty on human rights of older persons must ensure that longevity is matched by enforceable rights, adequate resources and community-led accountability.
Living longer is a victory. Ageing with dignity is the next challenge.
The demographic pyramid of the HIV epidemic is changing because – thanks to science and community-led rollout of lifesaving antiretroviral treatments – people are staying healthy and normal lifespans. When the viral load is undetectable there is zero risk of HIV transmission, so undetectable equals untransmittable or simply called U equals U.
For millions of people living with HIV, growing older represents a remarkable triumph of science, activism, solidarity and community-led care. Yet this achievement has exposed a new and often overlooked challenge: the right to age with dignity, security and equal rights remains far from guaranteed.
“We are really addressing a very important moment in history, which is the time where people living with HIV have the opportunity to age,” says Nicoletta Policek, who has lived with HIV for 42 years now.
For Policek, who is the co-Founder and Director, PRISMA European Community Driven Observatory on Ageing and HIV, longevity is not merely a medical success story – it is the result of collective action, compassion and the determination of communities.
In 2025, an estimated 11.5 million people living with HIV worldwide were aged 50 and above (making up about 29% of all people living with HIV). This is projected to grow to 20.2 million (51%) by 2040.
However, let us not forget that people with HIV experience accelerated biological ageing and a 50 years-old person with HIV often experiences age-related health conditions, and physical challenges typically seen in someone without HIV of around 70 years age in the general population.
Living longer with HIV brings in additional problems. Older people living with HIV may encounter barriers to healthcare, social protection, long-term care and meaningful participation in decisions affecting their lives. Their experiences also challenge a persistent assumption in public health: that controlling the virus alone is sufficient to secure wellbeing.
As governments and international institutions consider a legally binding United Nations instrument on the human rights of older persons, the experiences of people ageing with HIV must help shape its provisions.
Nicoletta was speaking on SHE & Rights panel hosted by the Global Center for Health Diplomacy and Inclusion (CeHDI) and CNS with Global Alliance for the Rights of Older Persons (GAROP), Global Network of People living with HIV (GNP+), International Planned Parenthood Federation (IPPF), Asian-Pacific Resource and Research Centre for Women (ARROW) and APCAT Media.
A growing population, and an overlooked need
As people with HIV age, just like those without the virus, they too may require ongoing care for hypertension, diabetes, cardiovascular disease and/or other non-communicable conditions, alongside support for mental health, mobility and social connection.
Tariro Kutadza, Advocacy Lead, Zimbabwe National Network of People living with HIV (ZNNP+) and founder leader of TB People (Zimbabwe), speaking from her lived experience, describes the reality of managing multiple health conditions while confronting stigma, isolation and limited treatment options.
“Living longer is an achievement. Ageing well is the next goal,” she says.
That goal requires a shift from measuring success primarily through viral suppression to ensuring comprehensive, person-centred care throughout life.
Daxa Patel, co-founder and former President, National Coalition of People living with HIV in India (NCPI+) and leader of Gujarat State Network of People living with HIV (GSNP+), drawing from community experience in India, highlighted the additional burden of navigating a fragmented system. People living with HIV may need to negotiate different medical departments, documentation requirements and eligibility rules to access ‘old age persons’ benefits. She also points to the absence of dedicated health insurance and social protection arrangements specifically designed around their needs.
When essential services are difficult to access, the formal existence of a benefit does not necessarily translate into a meaningful right.
Gender, stigma and the politics of invisibility
Ageing with HIV is not a uniform experience. Gender, disability, poverty, social exclusion and sexual identity can determine who receives care, who controls financial resources and whose needs are recognised.
Older women who have spent their lives providing unpaid care may reach retirement without adequate savings or economic stability. Women living with HIV may also encounter stigma, economic dependence and limited influence over household or healthcare decisions. Transgender and gender-diverse older people can face additional discrimination in healthcare, housing and residential care settings. Low literacy, inaccessible information and complicated administrative processes compound these barriers.
Nicoletta Policek describes the personal cost of being rendered invisible by society.
“I do not want to be invisible in social care. I do not want to be invisible when it comes to advocating for my own rights,” said Nicoletta.
Her words capture a fundamental human rights issue: older people living with HIV must be recognised as rights-holders, not simply as patients, dependants or recipients of charity.
Age is political
“Age is political,” Policek argues. The distribution of resources, the design of public services and the power to define what dignified ageing means are all political choices.
A society that celebrates longer life while overlooking the needs of long-term HIV survivors’ risks turning a public health achievement into a new form of inequality.
Integration must put people, not budgets, at the centre
For Tariro Kutadza, the language of integration, sustainability and transition must be tested against the lived realities of older people.
With international aid budgets under pressure and domestic financing priorities evolving, there is a danger that the needs of long-term HIV survivors will receive less attention as programmes focus increasingly on younger populations and prevention. As the Union World Conference on Lung Health opens next month in Rio de Janeiro, Brazil, Tariro underpinned that older persons are at 2-3 times more risk of TB. This TB risk goes up manifold for those with HIV.
Daxa Patel similarly calls for stronger peer-support networks led by people living with HIV, alongside community-led monitoring that documents denial of healthcare, stigma and difficulties accessing government benefits. Peer networks can help people navigate referrals, follow treatment, manage isolation and challenge discrimination.
However, community participation cannot become an excuse for governments to withdraw from their responsibilities. As Policek warns, meaningful participation requires sustained funding, training, accessible processes, fair payment and protection of participants’ identities.
Governments cannot claim to empower communities while expecting underfunded organisations and unpaid volunteers to compensate for weaknesses in public services.
Currently the UN Human Rights Council’s process of developing a legally binding international instrument on the protection of the human rights of older persons is underway.
For people ageing with HIV, the treaty must move beyond general commitments to respect older persons. It should explicitly address the intersecting effects of ageism, HIV-related stigma, gender inequality and other forms of discrimination.
Ending ageism also means ending HIV stigma
It must guarantee that governments prohibit discrimination on the grounds of age and HIV status, including in healthcare, insurance, employment, housing, social protection and long-term care. Protection must extend to intersecting discrimination affecting older women, transgender people, people with disabilities and other marginalised groups.
Older people living with HIV should have access to affordable, quality HIV treatment and medicines, routine screening for other chronic conditions, mental healthcare, rehabilitation and palliative care when needed.
The treaty must safeguard privacy and confidentiality. Unauthorised disclosure of HIV status can expose older people to discrimination, abuse and exclusion.
Governments should ensure accessible pensions, income support, affordable housing and social protection for people with HIV. Administrative procedures must not create unreasonable barriers for people who lack documentation, literacy, digital access or the financial means to navigate multiple departments.
The treaty should require effective prevention and remedies for neglect, financial exploitation, coercion and gender-based violence. Older people living with HIV and their representative community-led networks must have a substantive role in designing policies, setting budgets, evaluating services, monitoring and implementation.
Nothing about us without us
The experiences of Policek, Kutadza and Patel converge on one principle: policies designed without the participation of older people living with HIV are unlikely to address the realities of their lives.
Community-led evidence can reveal what conventional health indicators miss: a person denied admission to a care facility, a woman unable to claim a pension, or a patient forced to repeat sensitive information across disconnected services.
Community-led evidence must also translate into public accountability. As Nicoletta Policek emphasises, the UN Universal Periodic Review (UPR) offers an important platform to scrutinise what governments are doing to protect older people living with HIV. Civil society organisations and community networks should bring documented experiences of discrimination, breaches of confidentiality, barriers to social protection and fragmented care into national consultations and relevant UPR submissions.
The right to grow older without losing rights and dignity
The HIV movement has demonstrated the power of collective advocacy, peer support and community leadership. Those lessons must now inform the next phase of the response: ensuring that people who have survived decades with HIV, can grow older without losing access to care, financial security, autonomy or a public voice.
Human rights do not expire with age, and they must not stop at the door of a clinic or nursing home.
A legally binding treaty offers an opportunity to turn these demands into international standards against which governments can be held accountable. Its success will depend on whether it recognises the lived realities of people ageing with HIV and establishes clear obligations to protect their rights.
(The author is a feminist, health and development justice advocate, and an award-winning founding Managing Editor and Executive Director of Citizen News Service)
