Borderline cancer patients share their despair at not having access to approved therapies in the EU.
Lola (fictitious name to maintain her anonymity) is 48 years old, lives in Cádiz and suffers from metastatic breast cancer in the bones and liver. To date, she has undergone three treatments. None of them have worked. A week ago, she started a room, but she doesn’t hold out much hope. In parallel, she knows that there is a drug, called Enhertu, that is giving very good results in her type of cancer, HER2-low. The problem? The National Health System (SNS) does not have it included in its portfolio of services. At the end of last month, the European Medicines Agency (EMA) approved it for her pathology. And the question is: how long will it take for the SNS to incorporate it? The background is not very rosy. The same drug was approved by the EMA for another type of breast cancer, HER2-positive, at the end of January 2021, and it was not until almost two years later, at the end of October 2022, when the SNS incorporated it.
Lola’s life began to take a 180 degree turn at the beginning of 2020, when she was told that she was suffering from breast cancer and that she had to act. She undergoes chemo sessions, a mastectomy and radiation therapy. And she crosses her fingers. But her follow-up tests are not encouraging, and after repeating them, she receives another setback: the cancer has progressed to her bones. It was June 2021.
Since then, she has undergone three treatments (she is now on her fourth). The first one (chemo pills) worked for her for 14 months, until one fine day she began to suffer severe sciatica. Tests confirmed her worst omens: the bone metastasis was progressing. She had to try something else.
The second treatment (intramuscular injections) will take less time than the first. At three months, she begins to notice very sharp pains just below her chest, and another terrible diagnosis comes: the metastasis has reached her liver. You have to look for another formula and the third treatment arrives. On this occasion, they try 12 cycles of a very aggressive intravenous chemo. Unfortunately, it doesn’t work either. And not only that: it leaves very important consequences. He can barely walk – “I use a walker, he is very tough” because he has lost a lot of muscle mass in his legs. The treatment also affects the liver: “I have a very high level of toxicity.”
After those 12 cycles, her oncologist explains that there is a drug that is giving very good results in her pathology. But there is a problem: it is not available in the SNS service portfolio. It is about the Enhertu. In the absence of this option, they start a four treatment, but Lola does not have much faith in him. “I’m not stupid, I know it’s a plan b,” she says. “I need the Enhertu. We have a hope in our hand and we cannot access it. So, why so much research if the Administration doesn’t expedite the procedures later? ”, She asks herself. “You feel a great helplessness and a lot of anger. Every day you die a little more while you know that there is a medicine that would change your life, but you can’t have it. He has not dared to ask his oncologist how much time he has left. However, this week he has a visit with the notary to make his will.
Laura (44 years old) knows what Lola is talking about. A few months ago she was in the same situation as hers. In January 2021, they found a triple negative tumor in her breast that ended up generating, over time, metastases in her lungs. Her oncologist then told her that there was a drug, Trodelvy, that was working well in her cancer, but that it was not included in the SNS portfolio. Her family, who lives in Barcelona, saw no other option than to try to pay for the treatment themselves (Laura was given between 12 and 24 months to live). But the price was prohibitive: 15,000 euros per month. Still, they paid the first two. When they were about to start the third month, without knowing if they could afford it, they learned of the possibility of accessing the drug through its compassionate use. But CatSalut refused to pay for it. After going to the media and even knocking on the door of some politicians, Juanra, Laura’s husband, managed to get them to pay for it. His wife has been able to benefit from it until this past Christmas, when she stopped working for him. “It has been useful for eight months,” Juanra emphasizes. Thanks to this time gained, she has now been able to enter a clinical trial based on tumor-infiltrating lymphocytes carried out by the Hospital Clínic de Barcelona. Fingers crossed for her that it works for her. “Every day you die a little while you know that there is a medicine that would change your life.” Josep Fita (LV)