Modern Oncology: When Survival Is Not Enough

New therapies, “hidden” effects and the need to assess not only how long patients live, but how they live

Modern Oncology: When Survival Is Not Enough

New therapies, “hidden” effects and the need to assess not only how long patients live, but how they live

Modern oncology is changing at an unprecedented pace. Immunotherapies, antibody–drug conjugates (ADCs), bispecific antibodies and new targeted therapies are creating treatment opportunities that would have been unimaginable only a few years ago.

Cancer treatment is becoming increasingly personalised and tailored to the biological and molecular characteristics of each tumour, while overall survival is being extended for many people living with cancer.

Yet alongside this remarkable scientific progress, a critical question is emerging:

What does it really mean to live longer after — or with — cancer?

A recent Nature Medicine editorial, entitled “Oncology must confront hidden side effects”, highlights precisely this challenge. While cancer drug development is advancing at remarkable speed, the approaches used to record, assess and manage long-term treatment-related toxicities — and their impact on patients’ quality of life — have not evolved at the same pace.

When a “mild” side effect becomes a major burden

Therapeutic success can create a new reality: people are living longer, but some must also manage treatment-related adverse effects for months, years or even for the rest of their lives.

An adverse event classified clinically as low-grade is not necessarily insignificant to the person experiencing it.

A persistent rash, diarrhoea, stomatitis or other symptoms may substantially affect daily functioning, psychological wellbeing and social life when they continue over long periods.

Similarly, some immune-related adverse events associated with immune checkpoint inhibitors can become chronic, persist for years or even be irreversible.

This highlights an important limitation of the Common Terminology Criteria for Adverse Events (CTCAE), which are widely used to classify and grade treatment-related adverse events.

The duration of adverse events is not adequately reflected, while functional and psychological consequences may also remain outside traditional toxicity assessment.

As a result, what may be considered “manageable” according to conventional clinical criteria can feel very different to the patient living with it every day.

Quality of life cannot be an afterthought

A second important issue is the timing of quality-of-life evidence.

In some cases, quality-of-life findings are reported considerably later than the primary results of a clinical trial, and sometimes after a new drug has already been approved.

This means that patients making treatment decisions during the early years of a new therapy may not yet have a complete picture of how it could affect their daily functioning, emotional wellbeing and overall quality of life.

At the same time, the questionnaires and tools used to assess quality of life need to evolve continuously.

And this cannot happen without the direct involvement of patients themselves.

The experiences and priorities of people receiving treatment should form part of how treatment impact is assessed, rather than being treated as information that is added later.

The example of daraxonrasib

The Nature Medicine editorial highlights the pan-RAS inhibitor daraxonrasib as a telling example. The therapy has shown important survival benefits for patients with aggressive RAS-driven advanced pancreatic cancer, a setting in which treatment options have historically been limited.

At the same time, most patients experienced acneiform rash, with diarrhoea and stomatitis also reported as lower-grade treatment-related adverse events.

Full quality-of-life data — including information on daily functioning and emotional wellbeing — were not yet available because follow-up remained relatively short.

This example illustrates a much wider issue.

If we know that a therapy can significantly extend life, but we do not yet fully understand what that life will be like, an essential part of the information is missing from the conversation between patients and their healthcare teams.

This also has direct implications for informed consent.

Whenever evidence is available, patients need information not only about response rates and survival but also about the potential short- and long-term consequences of treatment for their everyday lives.

The same treatment is not experienced in the same way by everyone

The toxicity profile of a treatment is not identical for every patient.

It may vary according to the drug’s mechanism of action, a person’s physical condition, co-existing long-term conditions, genetic background and other individual characteristics.

Particular attention is needed for populations that have historically been excluded from, or underrepresented in, clinical trials, as their experiences of treatment-related toxicity may differ.

The editorial points, for example, to sex-related differences in adverse events associated with immunotherapy and racial disparities in adverse events observed with CAR-T cell therapy.

This makes real-world data particularly important.

Clinical trials remain fundamental to establishing the safety and efficacy of new treatments. However, broader use in everyday clinical practice may reveal treatment effects that were not fully captured in the populations included in initial studies.

One example is the bispecific antibody amivantamab in lung cancer, where the full extent and severity of some skin toxicities became clearer after a broader patient population was exposed to the treatment.

Moving beyond clinical silos

This changing landscape also demands a different approach to the organisation of cancer care.

The adverse effects of modern cancer therapies do not always fit within a single organ system or medical specialty.

Traditional clinical and disciplinary silos can limit the transfer of knowledge needed to identify, monitor and manage emerging toxicities effectively.

The response therefore needs to be interdisciplinary.

Collaborative networks, updated guidance, systematic reporting, dedicated registries and effective knowledge exchange are increasingly important so that new or rare adverse effects can be recognised early and managed appropriately.

Above all, the patient voice must be heard

Perhaps the most important change concerns how we define treatment success itself.

Survival remains a fundamental goal of oncology.

But it cannot be the only one.

We also need to understand whether people can work, move, sleep, eat, participate in family and social life, maintain as much independence as possible and manage the effects of treatment on their everyday lives.

In other words, we need to know not only how much time a treatment adds to life, but also what that time means to the person living it.

Patients should therefore not enter the process only at the end, as recipients of treatment.

Their perspectives need to be incorporated from the design of clinical trials and assessment tools through to post-approval monitoring and the real-world use of new cancer therapies.

From survival to living after — and with — cancer

Progress in oncology is undeniable, and it brings genuine hope.

The next challenge is to ensure that longer survival is accompanied by quality of life, functioning, meaningful information, participation and dignity.

Modern cancer care therefore needs to move beyond asking only:

“How much longer can this patient live?”

and give equal importance to another question:

“How will this person live during that additional time?”

For Kapa3, this discussion goes to the heart of truly person-centred cancer care: care that sees not only the disease and the treatment, but the person, their everyday life, their needs, their choices and the life that continues during and after cancer.

Source and references

Main source:
Nature Medicine. “Oncology must confront hidden side effects.” Volume 32, July 2026. Published online 8 July 2026. DOI: 10.1038/s41591-026-04554-9.

Barron CC et al. Journal for ImmunoTherapy of Cancer. 2023;11.
Gyawali B et al. Lancet Oncology. 2025;26–e89.
O’Reilly EM et al. New England Journal of Medicine. 2026. DOI: 10.1056/NEJMoa2605555.
Unger JM et al. Journal of Clinical Oncology. 2022;40:1474–1486.
Rayapureddy AK et al. Journal of Clinical Oncology. 2026;44.
Hines MR et al. Transplantation and Cellular Therapy. 2023;29:438.e1–438.e16.

find more s41591-026-04554-9

Κapa3 at IEEE CBMS 2026 | AI for Equitable Oncology Information

Kapa3 at IEEE CBMS 2026: Artificial Intelligence in Support of Equitable Patient Information in Oncology Care

New scientific publication in the Proceedings of the 39th IEEE International Symposium on Computer-Based Medical Systems

The voice and lived experience of patients must remain at the centre of the emerging era of Artificial Intelligence in healthcare.

Kapa3 – Cancer Guidance Centre contributes to a new scientific publication presented in the Proceedings of the 2026 IEEE 39th International Symposium on Computer-Based Medical Systems (CBMS), focusing on how Artificial Intelligence and Retrieval-Augmented Generation can support more equitable, reliable and patient-centred access to information in oncology.

The paper, entitled:

“Informed, Empowered, and Heard: AI and Retrieval-Augmented Generation as Tools for Equitable Patient Information in Oncology”

is authored by Lars Münter, Evangeli Bista, Maria Lavdaniti and Christos Frantzidis, with Evangeli Bista representing Kapa3 as Co-founder.

From access to information to meaningful patient empowerment

A cancer diagnosis creates an immediate need for information that is reliable, understandable and relevant to the individual patient.

At the same time, patients and their families are often expected to understand complex medical terminology, treatment options, prognosis discussions and administrative procedures at a moment of intense psychological and emotional pressure.

The paper highlights that acute stress associated with a serious diagnosis can affect working memory, attention and the ability to process new information. This means that patient information cannot be designed for an ideal, fully attentive reader; it must respond to the real cognitive and emotional conditions experienced by people facing cancer.

The key question is therefore not simply:

“How much information do we provide?”

but rather:

“Are we providing the right information, at the right time, in a form that people can understand and act upon?”

AI and Retrieval-Augmented Generation: towards trustworthy and evidence-grounded information

The publication places particular emphasis on Retrieval-Augmented Generation (RAG).

RAG architectures combine the generative capabilities of large language models with the retrieval of information from curated and verified knowledge sources. In a healthcare setting, this can include clinical guidelines, validated patient information resources, regulatory documents and peer-reviewed literature.

This approach offers an important advantage over purely generative AI systems: responses can be grounded in identifiable sources, supporting greater transparency and enabling patients and healthcare professionals to verify where information comes from.

In oncology, this is especially important.

A patient does not simply need a quick answer. They need information that is:

accurate, current, understandable, accessible and appropriate to their individual situation.

Artificial Intelligence as a tool for equity

One of the central themes of the paper is inequality in access to high-quality oncology information.

Geography, language, socioeconomic circumstances, health literacy, digital literacy and access to specialised healthcare services can significantly influence a person’s ability to understand their diagnosis, treatment options and rights.

The publication pays particular attention to the Greek context, where patients living in large urban centres may experience a very different information environment from those living in rural, remote or island communities.

When equity is treated as a core design principle, AI-RAG systems can potentially support:

multilingual access to health information,
different levels of language and information complexity,
voice-based interfaces,
shorter and more manageable units of information,
low-bandwidth or offline-capable solutions,
and opportunities for patients to return to information when they are ready to process it.

Technology alone, however, does not create equity.

The way technology is designed determines whether it reduces existing inequalities or reproduces them.

Designed with patients, for patient needs

The paper calls for an important shift in the way digital health systems are developed.

Many traditional health information systems are designed primarily around institutional or clinical workflows, with patient-facing communication added later.

For patient-centred AI, this logic must be reversed.

Systems should be designed with patients and around patient needs, with patients and informal carers actively involved in shaping the knowledge base, the questions the system is expected to answer and the ways information is presented.

This also means moving beyond systems that simply respond to individual questions.

A meaningful AI-supported information environment could help patients prepare for clinical consultations, organise their questions, understand the next steps in their care and become more aware of their rights.

The paper highlights applications such as consultation preparation guides, question prompts before appointments and post-consultation summaries as examples of how technology can support patients before, during and after important healthcare interactions.

AI should strengthen, not replace, human relationships

Perhaps the most important message of the publication is that the transformative potential of AI in oncology is not primarily technical. It is relational.

Artificial Intelligence should not create distance between patients and healthcare professionals.

It should help strengthen their communication.

A better-informed patient can arrive at a clinical consultation more prepared, identify questions and concerns more clearly, participate more actively in shared decision-making and communicate more effectively with the healthcare team.

The same applies to informal carers, who often carry a significant part of the informational and emotional burden of cancer care.

For this reason, the paper argues that AI-RAG systems should be designed to strengthen the relationship between patients, carers and healthcare professionals, rather than to replace any part of this human network of care.

For healthcare professionals, trustworthy information systems may also reduce the time required for basic information provision, allowing more of the clinical encounter to focus on nuanced discussions, decision-making and the human aspects of care that technology cannot replicate.

From information to trust

This scientific contribution adds to an increasingly important discussion about the future of healthcare:

How can Artificial Intelligence be developed and used in ways that genuinely respond to human needs?

The answer does not lie only in more powerful AI models or larger volumes of data.

It also lies in evidence, transparency, accessibility, co-design, equity and respect for patient rights.

As the paper concludes, people affected by cancer in Greece and across Europe deserve access to information that is accurate, personalised, accessible and respectful of their rights, regardless of where they live, the language they speak or the socioeconomic resources available to them.

For Kapa3, participating in this scientific discussion also reflects a broader commitment: ensuring that real patient needs, lived experience and equitable access are represented in the design and evaluation of the next generation of digital health and AI-supported tools.

Publication details

Title: Informed, Empowered, and Heard: AI and Retrieval-Augmented Generation as Tools for Equitable Patient Information in Oncology

Authors: Lars Münter, Evangeli Bista, Maria Lavdaniti, Christos Frantzidis

Published in: 2026 IEEE 39th International Symposium on Computer-Based Medical Systems (CBMS)

DOI: 10.1109/CBMS69103.2026.00302

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The Value of Pause: Why We Need to “Disconnect” Even During Treatment

Summer is often associated with the idea of holidays. Images of the sea, travel, and carefree moments fill our daily lives, creating the impression that rest requires a suitcase, a destination, and distance from obligations.

However, for cancer patients who are undergoing treatment, recovering from surgery, or waiting for test results, holidays are often not possible. Medical appointments, treatments, side effects, physical fatigue, and uncertainty about one’s health can make travelling difficult or even impossible.

And yet, the need for rest does not diminish. On the contrary, it often becomes even more important.

Perhaps, then, it is worth redefining what a “holiday” means. Not as travelling somewhere else, but as the ability to pause, even briefly, the relentless cycle of stress, worry, and constant vigilance that often accompanies serious illness. It can be a reminder that life is not only about the disease.

Rest is not a luxury — it is a need

Recent scientific literature shows that people need periods of recovery in order to maintain psychological and physical balance. Recovery is not simply “resting”; it is a process through which the body reduces the physiological and psychological burden caused by chronic stress.

In psychology, the term psychological detachment is used to describe the mental ability to step away from sources of pressure. This means allowing oneself, even for a short while, not to think constantly about what feels overwhelming.

Research by Sonnentag, Binnewies, and Mojza (2010) showed that psychological detachment is associated with lower emotional exhaustion, better mood, and greater resilience in everyday life. Similarly, Fritz and colleagues (2010) found that people who are able to mentally disengage from stress experience higher levels of well-being, energy, and functioning.

Although these studies were mainly conducted among workers, the underlying mechanism applies to every person: when the brain remains in a constant state of alert, it struggles to recover its strength.

In this sense, these small pauses matter not because they make us “forget” the illness, but because they give the brain an opportunity to step out, even temporarily, of a continuous state of alarm.

When illness takes over every thought

The experience of cancer is not limited to treatment days. It often affects everyday life as a whole. Thoughts about tests, medical decisions, bodily changes, work, family, and the future may accompany a person from morning to night.

This constant mental vigilance is exhausting in itself.

International guidelines from the National Comprehensive Cancer Network (NCCN) recognise that psychological distress is a common part of the cancer experience and recommend integrating psychosocial support into overall patient care. Likewise, guidelines from the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO) emphasise that mental health care and quality of life are essential parts of cancer management.

Holidays are not always about travelling

It is easy to believe that rest requires a trip. Yet scientific research suggests that the greatest benefit of holidays does not necessarily come from the destination itself, but from a change of pace and temporary distance from stressors.

Nawijn and colleagues (2010) found that people tend to feel greater well-being shortly before and during holidays, but that this feeling often fades relatively soon after they return.

This finding reminds us of something important: psychological renewal does not depend only on a few days of holiday each year, but also on the small moments of relief that we can create in everyday life.

For someone undergoing treatment, these moments may be even more valuable.

What does it mean to “pause” as a cancer patient?

To pause does not mean ignoring reality or neglecting one’s health. It means allowing oneself to remember, even for a little while, that life is not only about illness.

This may include:

a few quiet minutes on the balcony or in the garden,
a short walk in nature, when possible,
listening to favourite music,
reading a book,
engaging in a creative activity,
spending time with people who make us feel safe,
a few minutes of relaxation or mindful breathing, when appropriate for one’s health condition.

These moments do not change the diagnosis. But they can change the experience of the day.

The importance of quality of life

In modern oncology, quality of life is now considered a key therapeutic goal. Treating the disease is not enough; it is equally important for the person to maintain as much functionality, autonomy, emotional balance, and sense of meaning as possible.

This importance is also reflected in the value framework for cancer treatments developed by the American Society of Clinical Oncology (ASCO). According to this framework, the value of a treatment is not determined solely by its effectiveness, but also by its toxicity, its impact on quality of life, and the personal priorities and preferences of the patient.

This highlights the importance of personalised, patient-centred care, in which the person’s everyday experience is an essential part of the therapeutic process.

Within this perspective, small moments of pause, the continuation of pleasant activities, and connection with what brings joy are not secondary aspects of life. They are meaningful elements that contribute to preserving quality of life. They are not luxuries, signs of weakness, or attempts to avoid reality. They are forms of self-care.

The same applies to family caregivers, who often experience high levels of emotional and physical burden. Taking some time for their own rest is not selfishness; it is a necessary condition for continuing to support their loved one in a meaningful way.

The value of a small pause

The experience of cancer often extends beyond the limits of the disease itself, affecting a person’s self-image, social roles, and daily life. Intense psychological distress and uncertainty can gradually allow the illness to occupy more and more space in life.

In this context, psycho-oncological education appears particularly important. Its aim is to help patients and family caregivers understand the emotional reactions that naturally accompany diagnosis and treatment, develop more effective coping strategies, and actively participate in treatment decisions.

In this way, the sense of control and self-efficacy is strengthened, while also preserving the sense that a person remains something more than their illness.

When health does not allow for travel, it is easy to feel deprived of something important. Yet perhaps the essence of a holiday lies not in the distance we travel, but in the distance we allow ourselves to take from stress.

To “pause” does not mean to stop being a patient. It means allowing oneself, even for a little while, to be something more than the illness.

Perhaps, in the end, the most meaningful holidays are not those that take us far from home, but those that allow us to rest the body, calm the mind, and turn toward ourselves with greater care.

A peaceful sunlit balcony with a chair, a book, a cup, flowers, and an olive tree, illustrating the importance of small moments of rest and self-care during cancer treatment.

By Marilia Barka
Psychology Student
Kapa3 Volunteer

DISABILITY CARD OR TRANSPORTATION PASS FOR PEOPLE WITH DISABILITIES 2026. WHAT BENEFICIARIES NEED TO KNOW.

The new explanatory circular regarding transportation for people with disabilities (PWDs) for 2026 has raised several questions among beneficiaries and their families who are trying to understand what the current rules are. The most common question is: “I have the plastic Disability Card. Do I also need to get a PWD Transportation Pass?”

The answer is that the Disability Card has not completely replaced the Transportation Pass. Both of these documents remain valid simultaneously, and the need for one or the
other depends on the mode of transportation used by each eligible person. To make this clearer, here’s what applies in each case.

Athens and Thessaloniki: The Disability Card can be used for urban travel

For travel on OASA transit in Athens and OSETH transit in Thessaloniki, the plastic Disability Card can be used by eligible beneficiaries.

Cardholders can travel by validating their card at the designated machines, without needing to obtain a
separate Travel Pass specifically for these transit services.

The following are required:

the Disability Card must be valid,
must bear the designated disability level II or III designation,
or the beneficiary must receive disability financial assistance from OPEKA,
and income criteria must be met where required.

URBAN KTEL BUSES IN THE PROVINCE: THE TRAVEL PASS REMAINS NECESSARY

This is the point that has caused the most confusion. Possession of a Disability Card does not mean that
the Travel Pass is no longer required for all trips.

For urban KTEL buses operated by the Regional Units, as well as by the municipalities of Kos and
Rhodes, a Mobility Card for People with Disabilities is required, even if the beneficiary holds a Disability Card.

Therefore, those who use urban KTEL buses in their area should apply:
– at the Citizen Service Centers (KEP),
– or at the relevant offices of the Regional Unit.

FOR 2026, THE PROCESS BEGINS ON JULY 1, 2026, AND ENDS ON NOVEMBER 30, 2026.
Intercity Buses (KTEL): 50% Discount on Fares

For travel on intercity buses (KTEL)—that is, for trips from one city to another—a 50% discount is available.
The discount can be obtained with:
– A valid Disability Card,
– or a Transportation Pass for People with Disabilities.

Thus, for intercity routes, the beneficiary has more options.

Are there income criteria for free transportation?

One point that often causes confusion concerns income. There are no income criteria for issuing the Disability Card.

The income limits apply to eligibility for free transportation.

For 2026, the limits are as follows:
– individual taxable income up to 23,000 euros,
– declared family income up to 29,000 euros.

The family income limit increases by 5,600 euros for each additional person with a disability of 67% or higher who lives with and is financially dependent on the taxpayer.

It is important to note that: OPEKA disability benefits are not included in the above income limits. A relevant certificate from OPEKA may be required to exclude them.

Who is exempt from the income criteria?

People who are totally blind are exempt from the income criteria.

What applies to the companion?

In many cases, a companion is also entitled to travel.
If the Disability Card is marked with an “S” (Companion):

in Athens and Thessaloniki, the companion travels with the cardholder upon a single validation of the card. For KTEL buses, however, the prescribed procedure and the corresponding Companion Travel Pass are required where necessary.

So, what do beneficiaries need to keep?

The Disability Card is a significant benefit, but it does not mean that the Travel Pass is being
eliminated.
In simple terms:
Disability Card:
✔ Athens and Thessaloniki
✔ Intercity KTEL buses for a 50% discount
Travel Pass:
✔ Provincial KTEL buses
✔ Situations where a companion’s entitlement is required
✔ Those who do not have a Disability Card

At Kapa3, we believe that accurate information can save time, trips, and unnecessary hassle,
especially for people who already face increased challenges due to a disability or a serious illness.

View the circular here: TRANSPORTATION 2026
DISABILITY CIRCULAR

For more information, please don’t hesitate to contact the Kapa3 team:

📍Athens: 13 Kosti Palama, 3rd floor, (9:00 AM – 5:00 PM)
📍13 Kosti Palama, 11141 Athens
☎️210 5221424
📱6906265170
www.kapa3.gr, info@kapa3.gr

The Right to Be Forgotten: A New Era of Dignity for Cancer Survivors

Life after cancer should not be accompanied by lifelong financial exclusion

For many decades, completing cancer treatment did not always mean the end of obstacles for those who had been diagnosed with the disease. Years after their treatment, many survivors continued to face higher insurance premiums, denied insurance applications, and difficulties accessing financial services.A history of cancer could act as a permanent “stigma,” even many years after treatment had ended.

Thus, medical progress and a return to daily life were not always accompanied by corresponding social and economic rehabilitation.

With Law No. 5317/2026, published on July 10, 2026, Greece is moving forward with the legislative enshrinement of the so-called “Right to Be Forgotten” for cancer survivors, in the context of insurance contracts linked to consumer credit agreements. This specific provision is found in Article 16, paragraph 4, of the law.

What the new provision stipulates

The law prohibits the use of personal data related to a consumer’s cancer diagnosis when such data is to be used for an insurance contract linked to a credit agreement and five years have passed since the completion of treatment.

Simply put, once the five-year period has elapsed, a prior history of a cancer diagnosis cannot be used in this specific context as a factor in assessing the insurance contract accompanying the credit agreement. This represents a significant shift: individuals are no longer assessed indefinitely through the lens of a past
illness, but are given the opportunity to move forward with their lives without their previous diagnosis serving as a permanent obstacle.

The four key points of the new entitlement

The Right to be Forgotten does not mean that the diagnosis is deleted from the medical record. It means that, after the prescribed five-year period, data related to the cancer diagnosis may not be used for that specific insurance purpose.

Fourth, special oversight is provided for.

The Personal Data Protection Authority is responsible for enforcing paragraph 4 of Article 16 and possesses the supervisory and auditing powers provided for by the General Data Protection Regulation.

What the New Regulation Does Not Cover

Accurate information is particularly important so that citizens are aware of both their rights and the actual
limits of the protection provided.

The new legislative provision:

does not apply to all forms of private insurance,
does not automatically guarantee the approval of a loan or an insurance application,
does not cover credit agreements secured by a mortgage on real property,
does not cover credit intended for the purchase or retention of rights in real estate,

does not cover professional or business loans, as the law applies to consumers acting outside the
scope of their professional or business activities.

Furthermore, consumer credit agreements already in effect as of November 20, 2026, will, as a general rule, continue to be governed by the previous legal framework until their expiration.
Therefore, the new regulation represents a very important step, but it does not yet provide comprehensive coverage of all the financial and insurance needs of survivors.

From Voluntary Commitment to Legal Enshrinement

The Right to Be Forgotten did not first appear in Greece in 2026. As of March 26, 2024, the Code of Ethics of the Hellenic Association of Insurance Companies has been in effect, to which life insurance companies had adhered.

The Code applied to life insurance policies linked to mortgage, business, or consumer loans, with a maximum total insured amount of 300,000 euros. It provided for a ten-year period following the completion of treatment for those diagnosed as adults and a five-year period for those diagnosed before
turning 18.

The new legislation is particularly significant because protection is no longer based exclusively on the insurance industry’s voluntary commitment. For contracts falling within its scope, the failure to use the oncological diagnosis after the five-year period becomes a legal obligation.

At the same time, there is a need to clarify the relationship between the new law and the existing Code, particularly with regard to mortgage and business loans that are not subject to the new legislative provision.

Additional Safeguards for Consumers

Article 16 includes other important safeguards. When insurance is required for the granting of credit, the creditor must accept equivalent insurance coverage from an insurance company of the consumer’s choice. Choosing a different company must not result in less favorable credit terms.

At the same time, the consumer is given a period of at least three business days to compare insurance quotes, unless the consumer requests in writing that the contract be concluded earlier.

The European Dimension

The Greek regulation transposes Directive (EU) 2023/2225 on consumer credit agreements. The European
Directive requires Member States to establish a time limit beyond which data related to oncological
diagnoses may not be used for insurance policies linked to credit agreements. The European text stipulated that this period must not exceed fifteen years; Greece opted for the significantly shorter period of five years.

This choice has particular social significance. It recognizes that advances in oncology, increased survival rates, and people’s return to family, social, and professional life must be accompanied by corresponding
developments in the law.

When Does It Take Ef ect?

Although Law No. 5317/2026 has already been published, the provisions of Part A, which include the
Right to Be Forgotten, will take effect on November 20, 2026.
Until then, substantial preparation is required on the part of banks, insurance companies, and the relevant
authorities. Clear procedures, understandable information for citizens, appropriate staff training, and an
easily accessible mechanism for submitting reports or complaints are needed.

A Significant Achievement—Not the End of the Journey

The Right to Be Forgotten represents a significant institutional victory for dignity and equality. Cancer
should not be a lifelong social and economic stigma. A person’s medical history should not negate their
right to plan for the future, participate equally in society, and make a fresh start.
At the same time, the new regulation must be viewed as a starting point, not the culmination of our
efforts. The next step must be to extend meaningful protection to more insurance and financial products,
including housing needs, as well as to address the discrimination that continues to occur in the workplace
and other aspects of social life.
Scientific progress has transformed cancer from a terminal diagnosis into an experience of life and
survival for millions of people. Society and the law must follow suit.

Because the Right to Be Forgotten is not a privilege. It is every person’s right not to remain forever
trapped by a past diagnosis—and to move forward into the future without discrimination, without
stigma, and with dignity.

Find more : http://elib.aade.gr/elib/view?

The Active Role of Patient Organizations in Shaping Public Policy: How Our Health Advocacy Ef orts Are Put into Action

At the Cancer Patient Guidance Center, we believe that the voices of patients, their families, and the organizations that represent them must be heard loud and clear where decisions are made.

Improving the quality of life for cancer patients, ensuring access to new treatments, and meeting the needs of caregivers are not just requests but rights that are asserted through organized advocacy. To make this a reality, the right tools are needed.

The new “Guide to Mapping Public Consultation Tools”

As part of the “ENERGO – Toward an Open State” project, HIGGS has created a practical guide that maps the available mechanisms for participation at the local, national, and European levels.

This guide serves as a roadmap for Civil Society Organizations (CSOs), providing a detailed overview of:
• How institutional consultation tools function
• The opportunities for organizations to actively participate in policy-making
• The requirements for accessing these mechanisms
• The challenges and limitations, so that our interventions are well-informed and effective

Why might this be of interest to the beneficiaries of our Center?

Participation in shaping public policy is not an abstract concept. In cancer care, it translates into very specific changes:
1. Equal access to care: advocating for better infrastructure, shorter wait times, and free access to innovative medications.
2. Support for caregivers: establishing leave policies, benefits, and support systems for the people who stand by their side
3. Rights in the workplace: protecting cancer patients from discrimination in the workplace during and after treatment.

Summary & Structure of the Public Consultation Tools Guide

The “Public Consultation Tools Guide” was developed as part of the project “ENERGO – Toward an Open State” (implemented by HIGGS and co-funded by the European Union, the Bodossaki Foundation, and the NGO Support Centre). It is a practical reference tool designed to empower civil society organizations (CSOs) by strengthening their capacity for meaningful, evidence-based participation in public policy-making and strategic advocacy.

The guide is organized into the following sections:

1. Introduction & Institutional Landscape: This section presents the framework for the guide’s development, which was based on research and experiential tools involving dozens of civil society organizations. It analyzes the challenges of the institutional landscape, noting that the main obstacle for organizations is not the absence of tools, but rather the fragmentation, lack of visibility, and complexity of existing mechanisms,

2. National Tools for Public Consultation & Participation: maps and presents in detail the tools available in Greece, such as OpenGov, the KEDE & LocalWatch consultation platform, Vouliwatch, the YPEN Participation Platform, the National Register of Procedures (“Mitos”), Open Council & Crowd Participation, as well as Diafania & POTHEN.

3. European Public Consultation & Participation Tools: presents mechanisms for engagement at the European Union level, such as Have Your Say, the European Citizens’ Initiative (ECI), Consul Democracy, Loomio & Decidim, and others.

4. Tool Selection Guide & Conclusions: Provides consistent evaluation criteria (purpose, implementing body, prerequisites, limitations) so that each organization can select the most appropriate tool based on the objective of its engagement.

About the “ENERGO” Project & the PLATO Program

The “ENERGO: Toward an Open State – Participation, Advocacy, and Empowerment of Civil
Society Organizations” project is being implemented as part of the PLATO program, with HIGGS serving as the implementing partner. The PLATO program (“Protecting democracy, human rights, and the rule of law through an open civic space”) aims to strengthen the fundamental rights and values of the EU in both Greece and Cyprus. It is co-funded by the European Union through the Citizens, Equality, Rights and Values (CERV) program, the Bodossaki Foundation, and the NGO Support Center. The Bodossaki
Foundation serves as the coordinator in partnership with the NGO Support Center.

View and download the guiderZT9sW-Οδηγός Εργαλείων Δημόσιας Διαβούλευσης.

Memorandum of Understanding between the University of West Attica—specifically the Department of Occupational Therapy—and the NGO KAPA3.

On Tuesday, June 9, a meeting was held to sign a Memorandum of Understanding between the University of West Attica—specifically the Department of Occupational Therapy—and the NGO KAPA3.

The meeting was attended by the Rector of the University of West Attica, Panagiotis Kaldis Penelope Vlotinou, Assistant Professor in the Department of Occupational Therapy Evangelia Bista, co-founder of the organization, as well as representatives from both organizations, including the interdisciplinary team of KAPA3: Despoina Chrysostomou, Psychologist Katerina Georgiopoulou, Social Worker Yiannis Kontogiorgis, Psychologist, and Eleftheria-Irini Polyzoti, an intern from the Department of Social and Educational Policy, as well as students from the Occupational Therapy Department.

During the meeting, a constructive discussion took place regarding the prospects for cooperation between the two organizations, with the aim of developing joint actions and initiatives that will contribute to strengthening education, research, social contribution, and the connection between the academic community and society.

In this context, it was decided in April to jointly organize a major scientific conference, which will focus on an interdisciplinary and holistic approach to health, on combating social inequalities in healthcare, as well as on the management of chronic disease. The aim of this initiative is to raise community awareness, facilitate the exchange of expertise among professionals and scientific bodies, and disseminate scientific knowledge and information to the general public.

Special mention was made of the innovative work of KAPA3, the digital Health Navigator “Myrto,” a modern artificial intelligence tool currently under development and designed to support cancer patients, their families, and their caregivers. “Myrto” will function as a digital assistant (Chatbot) and Health and Rights Navigator, providing immediate, reliable, and personalized information on health, social welfare, rights, benefits, and available support services. The project aims to empower patients, improve their access to information, and reduce inequalities in health and social care through the use of digital technologies and artificial intelligence applications. The development of “Myrtos” represents a pioneering application of social artificial intelligence in the field of oncology care in Greece and is part of KAPA3’s strategy to promote innovation, accessibility, and the active participation of patients in managing their own health.

The meeting concluded in a particularly positive atmosphere of mutual appreciation and recognition. In this context, the Department of Occupational Therapy at the University of West Attica made a symbolic gesture toward the representative of KAPA3, Evangelia Bista, presenting her with a commemorative gift as a token of appreciation for her many years of valuable social contribution in the field of support for cancer patients. At the same time, as a gesture of hospitality and appreciation, the team was offered a specially produced wine, which is an original creation of the University of West Attica.

There is an urgent need for psychological support for cancer patients. The KAPA3 team explains and advocates for this

There is an urgent need for psychological support for cancer patients. The KAPA3 team explains and advocates for this

Every day, healthcare professionals are called upon to communicate with, assess, and, above all, support people who are going through cancer.

Does cancer affect only physical health, or does it also have a profound impact on a person’s psychological, social, and emotional life? The needs that arise during the course of the illness are many and are often accompanied by the question: “What does the disease really bring to a person’s life?” A cancer diagnosis brings about significant changes in daily life, relationships, social roles, and the way a person perceives themselves and their future.

A cancer diagnosis is an extremely stressful event, often accompanied by feelings of fear, uncertainty, anxiety, and grief. At the same time, patients are called upon to cope with the effects of treatments such as chemotherapy, radiation therapy, and surgery. Changes in physical appearance, fatigue, pain, and limitations in daily functioning can significantly affect their self-esteem and quality of life (Pitman et al., 2018).

Uncertainty regarding the course of the disease and the likelihood of relapse are significant sources of psychological distress. The extent of this phenomenon is reflected in the meta-analysis by Mitchell et al. (2011), which included 94 studies and more than 14,000 cancer patients. According to the results, 16.3% of patients met the diagnostic criteria for major depressive disorder, 10.3% for anxiety disorder, and 19.2% for adjustment disorder.

These data highlight that a significant proportion of cancer patients experience severe psychological distress, a fact that underscores the need for specialized psychological support.

Furthermore, cancer often affects an individual’s family and social relationships. The patient may be forced to limit or abandon professional and social roles, while the family is called upon to adapt to new demands and responsibilities, experiencing significant psychological strain of their own (Northouse et al., 2010).

Cancer patients have an increased need for psychological support, as the disease significantly affects their psychological, social, and emotional functioning. Fear of the disease’s progression, uncertainty about the future, the side effects of treatments, and the possibility of recurrence are major sources of psychological distress. At the same time, the experience of cancer is often accompanied by feelings of loss of control, fear, and emotional distress. The contemporary psycho-oncology literature recognizes that the early identification of psychosocial needs and the provision of appropriate interventions are an integral part of holistic oncology care (Caruso & Breitbart, 2020; Mehnert-Theuerkauf et al., 2023).

Within this context, psychological support is a key component of holistic care for cancer patients. Holistic care refers to a comprehensive approach that takes into account not only the patient’s physical needs but also the psychological, social, and spiritual dimensions of their health. Counseling, psychotherapy, and support groups provide a safe space for expressing emotions and building psychological resilience (National Comprehensive Cancer Network [NCCN], 2024).

At the same time, they help improve adherence to treatment, strengthen cooperation with healthcare professionals, and maintain quality of life. As Holland and Weiss (2008) argue, psychosocial care is an integral part of high-quality oncology care, from diagnosis through the survival phase.

In conclusion, the experience of cancer is a complex and multidimensional process that affects every aspect of a person’s life. Managing the disease is not limited solely to physical treatment but requires the recognition and addressing of the psychological and social needs that arise at every stage. Providing timely and systematic psychological support can empower the patient, improve their ability to adapt to the demands of treatment, and contribute significantly to maintaining their dignity, hope, and quality of life. Psychological care should be regarded as a fundamental right of every cancer patient and as an integral part of modern oncology practice.

Coordination of Psychological and Social Services within the Framework of Psychosocial Care

The care of cancer patients is not limited to treating the disease and its physical effects. The needs that arise during treatment are often multifaceted and concern both the individual’s psychological well-being and practical, social, or financial issues that affect their daily life.

For this reason, effective support requires close collaboration among different healthcare professionals within a shared framework of psychosocial care. Within this framework, the Social Services and Psychological Services operate in a complementary manner, with the shared goal of enhancing the individual’s quality of life and overall adjustment to the experience of illness.

A client’s contact with the service can begin either through the Social Services Department or the Psychological Services Department. During the initial contact, an assessment of the client’s needs is conducted, and information is provided about all available support services.

Regardless of the initial request, the beneficiary is informed about the option of receiving psychological support, as the experience of cancer is often accompanied by heightened psycho-emotional needs that are not always apparent from the first contact. With their consent, an internal referral can be made to the Psychological Services Department for further evaluation and support.

The Psychological Services Department is responsible for the initial assessment, obtaining informed consent, and creating an individual support file. A structured series of sessions is then provided, tailored to the beneficiary’s needs. During this process, issues may arise related to social benefits, employment challenges, financial burdens, disability certification procedures, or other practical needs that significantly impact the daily functioning of the individual and their family. In such cases, and always with the beneficiary’s consent, cooperation with Social Services is initiated, and Social Services assumes responsibility for managing the relevant social and administrative matters.

The collaboration between the two services enables the timely identification of new needs and ensures continuity of care. Social Services focuses on the practical, social, and administrative aspects of support, while Psychological Services focuses on psychological resilience, emotional processing of the experience of the disease, and adaptation to the changes it brings about. The collaboration between the two services allows for a more comprehensive response to the needs of the cancer patient. In this way, a unified framework of psychosocial care is established that provides substantial support to the patient and their support network at all stages of their journey with the disease.

At the same time, regular communication and coordination between the two services allow for the timely identification of new needs and ensure continuity of care. The Social Services Department focuses on the practical, social, and administrative aspects of support, while the Psychological Services Department focuses on psychological resilience, emotional processing of the experience of the disease, and adaptation to the changes it brings about. The collaboration between the two services enables a more comprehensive response to the needs of cancer patients. In this way, a unified framework of psychosocial care is established that provides substantial support to the patient and their support network at all stages of their journey with the disease.

Kapa3 – Cancer Patient Guidance Center

Together, with knowledge, care, and a human touch.

https://www.kapa3.gr/epikoinonia/ by typing “Psychological Support” in the Message box

OR CALL

2105221424 – info@kapa3.gr

Athens: 13 Kostis Palamas Street, 3rd floor, (9:00 AM – 5:00 PM) 6982003282

Kapa3 Cancer Patient Support Center and the USTEP Institute announce the launch of their strategic partnership

The Kapa3 Cancer Patient Support Center and the USTEP Institute announce the launch of their strategic partnership, aimed at providing meaningful support to cancer patients and promoting equal opportunities in scientific, social, and educational levels.

The partnership was formalized through the signing of a Memorandum of Understanding, which was signed in Athens on May 26, 2026, by Evangelia Bista, Co-founder and Head of Development and Operations at Kapa3, and Vasileios Stavrou, Co-founder and Scientific Director of the USTEP Institute.

As part of the collaboration, the two organizations will develop joint initiatives that include:

Organizing workshops and conferences focused on patient education, improving the quality of care, and strengthening the relationship of trust between patients and healthcare professionals.

The implementation of information and awareness campaigns on prevention, symptom management, and combating myths and social stigma surrounding cancer.

Collaboration on national and European programs aimed at developing innovative initiatives and actions with a social impact.

Conducting joint research and disseminating the results at the national and European levels.

This partnership reaffirms the two organizations’ commitment to actively contribute to the creation of a more supportive and inclusive environment for people living with cancer, by enhancing access to knowledge, information, and social empowerment.

The Memorandum of Cooperation is valid for one year, with the option to renew upon mutual written agreement by both parties.

June: Cancer Survivors Month

Survival is a victory — but care must continue

June is dedicated to people living with and beyond cancer. It is a month of recognition, hope and respect for every person who has faced a cancer diagnosis, completed treatment, continues treatment, or lives with cancer as a long-term condition.

Cancer survival is a major victory. However, for many people, it is not the end of the story. Life after cancer often brings a new reality: follow-up appointments, fear of recurrence, fatigue, emotional distress, changes in body image, work-related challenges, financial pressure, family adjustments and the need to rebuild everyday life with confidence and dignity.

Cancer Survivors Month reminds us that survivorship is not only about living longer. It is also about living better.

A cancer survivor is not only a person who has completed treatment and is disease-free. The term also includes people receiving maintenance treatment, people living with cancer as a chronic condition, and those who continue to experience the physical, emotional, social or economic consequences of the disease and its treatment.

In recent years, advances in early diagnosis, targeted therapies, immunotherapy, surgery, radiotherapy and supportive care have increased the number of people living many years after a cancer diagnosis. This is a major achievement for medicine, research and public health. At the same time, it creates a new responsibility: to ensure that survivorship care is organised, person-centred and accessible to all.

For many survivors, the end of active treatment is a moment of relief and gratitude. Yet it may also bring uncertainty. Some people feel that everyone around them expects them to “go back to normal”, while they are still trying to understand what has changed in their body, their emotions, their relationships and their daily life.

The fear of recurrence, anxiety before follow-up tests, persistent fatigue, pain, cognitive difficulties, changes in sexuality, emotional vulnerability and social isolation are real experiences for many people after cancer. These needs should not be underestimated. Survivors need space to speak, reliable information, access to professional support when needed, and connection with communities and organisations that understand their journey.

Long-term follow-up is also essential. Survivorship care should not focus only on recurrence. It should also include prevention, early recognition of late effects, management of treatment-related complications, support for mental health, healthy lifestyle guidance and personalised monitoring according to each person’s cancer type, treatment history, age and individual risk factors.

The message is not fear. The message is awareness, prevention and continuity of care.

Life after cancer is also about rights. It is about returning to work, accessing social benefits, understanding available services, managing financial toxicity, supporting caregivers, protecting dignity and ensuring equal access to care. Survivorship must be seen as a social, psychological and practical issue — not only a medical one.

At Kapa3, we see every day that cancer does not always end with the last treatment. It continues in the questions people ask about their rights, their next steps, their follow-up, their access to benefits, psychological support, work, family life and social reintegration.

This is why people living with and beyond cancer need holistic support. They need information, guidance, psychosocial care, access to rights and services, empowerment and continuity of care. No one should feel alone after treatment. No one should be left to navigate bureaucracy, uncertainty or lack of information without support.

Cancer Survivors Month invites us to change the way we talk about survival. We should not ask only: “Did the person survive cancer?” We should also ask:

Are they living with quality of life?
Do they have access to the care they need?
Do they know their rights?
Do they receive psychological and social support?
Can they return to work and daily life with dignity?
Is there a follow-up plan?
Is there someone to guide them when they do not know where to turn?

Cancer survival is a victory. But the real challenge is to turn this victory into a life with quality, safety, rights, support and hope.

At Kapa3, we continue to stand beside every person living with and beyond cancer. Through information, guidance, empowerment and human-centred support, we believe that care does not stop at treatment.

It continues in life.