"It is not normal to reach our reproductive age without knowing anything about our fertility and its limits. This knowledge should be a fundamental right," declares Helena Fernández, president of the National Infertility Network.
We use the term “patient” to refer to the people who suffer from a specific condition. We have all been patients at one time or another in our lives. But there are people who are patients for a long period of time, usually because of a chronic condition that forces them to live with an unwanted disease, as may be the case with infertility.
Their wishes, needs and rights are as important as the cure for the disease. So today, on the European Day of Patients' Rights, we want to shed some light on this difficult journey, often full of hard decisions and unexpected situations. We are doing this in conjunction with the National Infertility Network, the Spanish association of infertility patients. In the following interview with the president of this Network, Helena Fernández, we will learn more about the project and ask her, among other things, how they defend their rights.
What is the essential role of an association for patients?
A patient association must look after the patients’ well-being. In our case, we accompany, listen to and support our associates in particular and the infertility and/or assisted reproduction patients in general. The idea is for them to feel that they are not alone and that we are by their side.
Infertility is an unknown disease. The society in general does not really understand it and does not have a clear idea of what it is really like. As patients, we endure our experiences in solitude. The negative test results, the miscarriages, the misdiagnoses... we cry in silence.
No one should have to experience this. Fortunately, patients are becoming more empowered and have the strength to step forward.
This is what our association does. We give these patients a voice. Infertility is a disease, and unfortunately, it has an extremely high occurrence in our society. 20% of our population has fertility problems. We can no longer allow this to be an unknown disease. The people who are affected by it cannot live in silence, without feeling the affection and warmth of the people who surround them.
But we must also struggle, protect, and defend. We do everything in our power so that the patient can deal with the disease and follow its course in the best way possible.
It is the European Patients' Rights Day...
What assurances and guarantees should a reproductive patient achieve in the coming years?
First of all, we should talk about education and previous assessments. We hope that in the near future, reproductive education will be studied and explored. It is not normal for a person to reach adulthood without having heard about the reproductive age of the human being, for example. That should be a fundamental right.
In addition, all women from the age of 18-20 should have ovarian reserve checks every 2 to 3 years. We find that there are young women under the age of 30 with a very, very low ovarian reserve who have never been told about this. Perhaps with a check-up in their twenties, they could have preserved eggs for the future. Likewise, there are patients in their forties who believe they are young, which, reproductively speaking, they are not. If health centers were to standardize these tests, then these women would be able to decide whether to preserve their eggs.
In addition, we are confident that in the future, patients will be treated differently. As soon as they enter a clinic or assisted reproduction unit, they will immediately undergo a complete diagnosis with all of the necessary tests instead of just the basic initial tests that are usually done now. We are talking about both men and women since their percentage of infertility is the same.
And of course, to provide a trustworthy environment. Having a child should be something intimate, between a couple (when dealing with a couple). Patients need to establish a secure, intimate, comfortable and respectful environment with their doctor and the rest of the medical team at all times.
Do you receive or channel grievances from patients? Which are the most common?
It is quite common to receive complaints from patients. These complaints may be because they have not felt well treated or because they have not been accompanied at all times. They may not feel supported by the team, they may not have been informed correctly or there may have been communication failures within the clinic. There are also complaints regarding poor care and a lack of information, this latter being especially prevalent in the Social Security system.
We also receive complaints related to the treatments themselves, dealing with embryo transfers or even complaints based on more complex issues such as medical malpractice that we submit to our lawyer, Eva María Muñoz Deiros.
You recently mentioned that you wished that more people with reproductive problems would acknowledge their patient status and join the association.
Do you think that there are more difficulties in the field of reproduction regarding this type of affiliation?
Infertility is a chronic disease, but it only affects you for a few years of your life. It lasts one, two, five, or seven years and then ends. It may be a happy ending or it may not be, but it ends all the same. This means that patients do not have the associative feeling towards their own disease.
This is totally understandable, but we must also understand that the more associates we have, the stronger we will become. As a social agent, we need this strength to bring about changes in both the scientific communities and in the government, two areas where our situation has not been taken into account yet.
We are neither doctors nor politicians, and we are aware of this. Both of these groups, however, work for us, and we understand that our opinions and needs should be taken into account. As a patients’ association, we are deserving of the position that, fortunately, has historically been given in Europe to similar groups.
In any case, it is a patient-related area that is always growing, since even prevention undergoes AR techniques. What do you predict for the future of patients?
It is a fact that the future of our society will involve assisted reproduction. Therefore, the system must be properly equipped and protected. The public health system must include 100% of existing assisted reproduction techniques and, if possible, the waiting lists should disappear. It is unacceptable to have to wait 2, 3 or even 4 years to start treatment.
I hope that the research on this subject will be provided with all of the necessary resources. Research is essential to progress and necessary to achieve the more specific and personalized treatments with higher success rates.
And of course, we hope that one day in the future, an infertility patient will be able to talk openly about their infertility without hearing the phrases such as "Well, you’ll be better off without children; they're too much trouble,” “You’re not getting any younger,” or much more painful phrases that should not be repeated. A future in which no one asks anyone if they are going to have children. A future where all patients can find support and understanding in their surroundings and, most importantly, feel embraced and understood.
At IVI Global Education we believe in the importance of each patient knowing their rights and what is more important, we believe in the importance of being able to access each one of them, unconditionally.