Beyond Survival: Why Childhood Cancer Survivorship Must Include the Right to a Full Life

When a child has cancer, everything narrows to one urgent goal: survival.

Families go through scans, procedures, hospital stays, toxic treatments, and the uncertainty that becomes part of everyday life. All energy, all hope, and all decision-making revolve around one question: Will my child live?

As the mother of a childhood cancer survivor, I know that feeling well. I know what it is like to live with fear, make impossible decisions, and hold on to hope. I also know the gratitude that comes when your child survives.

But I have also learned something important: Cancer doesn’t end when treatment ends.

For many children, teens, and families, survivorship brings new challenges. These may be less visible, but are deeply life-shaping. These challenges may include:

• Discrimination
• Mental health burdens
• Educational disruption
• Social isolation
• Chronic health problems
• Trouble getting insurance or other financial services
• The ability to have children later in life

That is why I believe we need to think about more than survival.

Survivorship and the right to a future

It is not enough to save lives. We must also work to ensure the best possible quality of life after cancer.

For me, this is personal.

In Chile, I helped support the “Right to Be Forgotten” movement for cancer survivors. 

This law was passed in 2024. It helps protect cancer survivors from unfair treatment in financial and legal settings after a certain period without their cancer coming back. 

Before this law, many survivors faced barriers when trying to get:

• Health insurance
• Financial products
• Other basic opportunities linked to adulthood and independence

The law recognized something simple but powerful: Cancer should not define a person’s future forever.

What moved me most was what this law represents. It shows that survivorship matters. That dignity matters. That a person who has already gone through so much should not have to keep paying for cancer for the rest of their life.

And yet, this is only part of the story.

Protecting future choices

Many cancer treatments can affect a person's ability to have children later in life.

Too often, this is not discussed early enough—or at all. During a cancer diagnosis, everyone is focused on saving the child's life. That is understandable.

But if we never talk about life after treatment, we risk taking away future choices before a child or teen is old enough to understand what was lost.

In Chile, I lead a working group that works to improve access to fertility care for cancer patients. Together, we support 3 goals: 

1. Every care team should talk with families about how treatment may affect future fertility before treatment begins.
2. Patients and families who want to learn more should be referred quickly to fertility experts.
3. Public financing should be made available so these options are not only for those who can afford them.

This is what survivorship advocacy should look like: concrete, humane, and forward-looking.

It asks not only, “How do we cure the disease?” but also, “What kind of future are we protecting?” 

We should ask:

• Will this child be able to return to school with support and dignity?
• Will this teen have access to mental health care?
• Will this survivor be able to build relationships, find work, plan a family, access financial services, and live without stigma?
• Will public systems recognize that survivorship has medical, emotional, social, and economic dimensions?

These questions matter because childhood cancer does not happen in a vacuum. It happens in the middle of a life, a family, a community, and a future.

And this is where public policy becomes essential.

Why public policy matters

Doctors, social workers, patient advocates, and nonprofit groups do important work. But they cannot do it alone.

If we are serious about survivorship, then it must be built into public policy. It must be reflected in:

• Laws
• Financing mechanisms
• Care models
• Emotional support services
• Survivorship care plans
• Fertility counseling
• School support
• Protections against unfair treatment

We need health systems to see survivorship as part of cancer care, not as an afterthought.

We need governments to understand that quality of life is not a luxury outcome. It is part of the outcome.

We need leaders to listen more carefully to survivors and families, because lived experience reveals what statistics alone cannot:

• It shows us where the hidden barriers are. 
• It tells us what happens after the applause of remission fades. 
• It reminds us that healing is not only biological.

From survival to a full life

As a mother and an advocate, I believe strongly that survivors deserve more than praise for making it through cancer.

They deserve protection. 

They deserve opportunity. 

They deserve policies that recognize their full humanity.

We should all be proud that childhood cancer survival has improved in many parts of the world. That progress matters. It reflects the dedication of: 

• Health care teams
• Researchers
• Institutions
• Civil society organizations
• Families who never give up

But progress also creates a new responsibility: When more children survive, more children need long-term support to live well.

So, the next chapter of the childhood cancer movement must be about more than survival. It must be about survivorship with:

• Dignity
• Rights
• Opportunities
• The best possible quality of life

My call to action is simple: 

• Let us work together for public policies that protect childhood cancer survivors long after treatment ends.
• Let us push for laws that prevent discrimination.
• Let us make fertility counseling and care available to families who need it.
• Let us invest in long-term psychosocial and medical follow-up.
• Let us build systems that do not just save children but help them thrive as they grow.

Because surviving childhood cancer should open the door to life—not close it.