In a disease where survival is measured in months, no one should gamble their time on a lottery. We are not asking anyone to reject science: we are asking to know, choose and demand ethical designs.
You do not need to read the whole page to sign. This is what you are signing — six lines. Everything below explains why, point by point.
I sign because in a disease where survival is measured in months, a person’s time cannot be gambled on a lottery.
I call on the AEMPS, the EMA and the health administrations to require, in glioblastoma clinical trials:
- No pure placebo arm in short-survival diseases: always compare against the best available treatment.
- Guaranteed crossover to the active drug on first documented progression.
- Transparency of results and post-trial access to the treatment that worked.
We are not asking anyone to reject science. We are asking that it be designed to save lives.
In glioblastoma, every week counts. That is why the first step is not to accept a single protocol: it is to demand a schedule — full molecular diagnosis, tumour board and referral to a reference centre — without delays.
A full tumour profile (NGS) with no waiting: it is what opens the door to targeted therapy.
Have your case reviewed by a molecular board that matches the profile with the best option or trial.
Being treated where the experience is changes the prognosis. It is a right: second opinion and referral.
This is not an opinion: international medical ethics already limits the use of placebo, and science already has designs that do not require giving up treatment.
Temozolomide (Temodal) became the standard in 2005 with the Stupp protocol. Since then, more than two decades of data confirm a median survival of roughly 15 months. That statistic is more than proven: it needs no further trials to validate it.
More than that: in patients with an unmethylated MGMT promoter — close to 60 % of cases — temozolomide is known to have minimal or no benefit. Assigning these patients to a control arm of temozolomide alone is not offering a treatment: it is assigning them something the evidence has already shown does not work for their molecular profile.
And yet, in 2026, many clinical trials still assign patients to a control arm of temozolomide alone — or worse, placebo — as if we did not know it is insufficient. That raises an uncomfortable question: is the patient being protected, or the study design?
For a person with glioblastoma, every treatment cycle is a window closing. Assigning them a drug whose limitations have been known for twenty years, instead of giving access to an investigational therapy, is not a neutral scientific control: it is a lost opportunity that the law itself seeks to prevent.
Our position is clear: trials must compare against the best that exists today, not against the only thing that existed twenty years ago. And when the control arm condemns the patient to a treatment we know is insufficient, the design stops being ethical and becomes a sentence in disguise.
Only 8 % to 11 % of patients with newly diagnosed glioblastoma take part in a clinical trial. The main reason is not lack of willingness: it is the eligibility criteria, often so restrictive that they exclude most real patients.
Why does this happen? Because the criteria are, in most cases, written by the pharmaceutical company sponsoring the trial. Its natural incentive is to select the healthiest patients with the best prognosis — what a Fred Hutch Cancer Center researcher called “cancer olympians” — because they produce better statistics. The drug then looks better to the regulator, even if it does not work as well in the real population.
In glioblastoma, this has devastating consequences:
The FDA, the EMA and ASCO itself have formally recognised that eligibility criteria must be broadened. The European clinical trials regulation (EU 536/2014) requires the study design to minimise suffering and maximise potential benefit for participants.
What we ask is simple: that a trial’s criteria be designed to save lives, not to protect a commercial result. That the priority be to include the people who need options, not to exclude them because they do not fit an ideal profile that maximises return on investment.
We promise no miracles and guarantee no lawsuits. We give you the levers the law does recognise — and the reason behind each one.
Randomisation ratio, what happens if the tumour progresses, whether there is crossover. You have the right to understand it before signing.
Spanish RD 1015/2009 allows access to investigational or off-label drugs when justified and no alternative exists. You can apply — and appeal if refused on cost grounds alone.
It is the key piece. If the public-system oncologist will not sign it, an external neuro-oncologist can act as an expert backing the request.
It gives a scientific basis for targeted therapy. Without the molecular map there is no argument; with it, there is.
The urgent judicial route. It exists, but it is hard and needs a health-law solicitor: we present it honestly, not as a safe shortcut.
Request your full medical record now. Watch the limitation period for a compensation claim: keep everything and log every date.
The more voices, the more weight the petition carries before the AEMPS, the EMA and the health administrations. Add yours.
Firm, but responsible. This page is advocacy and public information, not medical or legal advice. In glioblastoma, taking part in a serious trial is often a good option: our motto is get informed and demand, not refuse. Always consult your medical team and a solicitor specialising in health law.
Last reviewed: June 2026. We recommend a health-law specialist review this section before final publication.