About me

I'm Alfonso Aguarón and I welcome you to my blog. Inspired by my own diagnosis of a Hodgkin's Lymphoma in 2008 I decided to get involved in patient advocacy.
A few years later, I keep commited to my desire of help and support patients. There's still a lot to do so, do we look for change in healthcare together? Let's go!

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Thursday, February 4, 2016

Cancer World Day: is this just about a date?

Since this morning I've seen a lot of activity out there (social channels, media, etc) and it seems today everybody is talking about cancer. In some kind of sense, these are good news, but at the same time I was wondering what is the sense of all these awareness campaigns.

I would like to say that it is great to have a date like this one to notice that we are progressively winning the battle against cancer. But, at the same time, articles like the one Andrew Schorr published at Patient Power Europe made myself to reflect. When we think about cancer, do we really need to wait until 4th of February to see those nice videos, awareness campaigns and press releases to say: "Hey there! Let's talk about cancer today!". To be honest, I don't really need to have this "one hit wonder" that 4th February seems to be to realize that cancer is there. On my daily basis I'm used to see people who is suffering this disease and I would be an hypocrite if I say that I like to see so many celebs, campaigns and ribbons which will be forgotten just a day after.

I will be fair. I know patient advocacy is making a great progress in many different fields, from support to research, but I don't really get the point of this day. As Andrew stated "if the World Cancer Day is a spark, that's great! But let's work for this year to be the one in which could say that we really made a step forward in our battle against cancer".

Let's keep on working hard to have great highlights in any other day than 4th February. This way we could be proud of all our work and not just say "cancer exists". After all, who is not concerned, in one way of the other, about this disease?
Monday, October 5, 2015

European Reference Networks: The second chance

I remember when I first heard about the Cross-Border Healthcare Directive. By that time I thought that it was such a great opportunity to knock down barriers to access to care and also a good example of the so-called European spirit. What a naive dreamer I was! Two years after the deadline for transposition and implementation of the Directive, has just shown the true face of Europe in these times: an old cranky lady, without political will to build a more social and united Europe and member states serving only to their own interests. In the view of the "Evaluative study on the crossborder healthcare Directive" published by the European Comision, it seems obvious that the lack of information and the bureaucratic burden has turned the text into a nice declaration of intentions with no real outcomes for crossborder patients.

In the midst of this almost hopeless situation, there is still a ray of hope shaping as a second chance: European Reference Networks (ERNs).

What are ERNs? It is an European intend so the best specialists from across Europe could join their efforts to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources.

So, what do ERNs bring to a patient in a practical way? Let us take an example. Let’s imagine that I’ve been diagnosed Castleman’s disease, a rare and poorly-understood inflammatory disorder that occurs in people of all ages, causes lymph node enlargement, and can result in multiple-organ dysfunction. This is an ultra-rare disease, with an incidence less than 1 in 100.000 people. It is likely that my doctor never treated a patient with the same condition or even my hospital lacks of the proper resources to treat me in a proper way. Thanks to ERNs my doctor could locate a reference center and a specialist who could either guide him to manage my disease or could recommend my transfer to that center in order to be treated adequately.

Which centers will be part of the ERNs? All those healthcare providers willing to be part of the network will be able to apply from January 2016 and they will have to meet the criteria established in the Commission Implementing Decision on setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks.

Will each disease has their own reference center? Let’s keep in mind that there are over 5.000 rare diseases, around 200 types of rare cancers as well as some other multifactorial complex diseases. The CID acknowledges that it might be difficult to reach the required minimum number of healthcare providers or Member States for some rare diseases or conditions due to a lack of expertise and it would therefore be a good idea to group healthcare providers that focus on related rare diseases or conditions in a thematic Network. Networks could also include providers of high technology services which usually require very high capital investment, such as laboratories, radiology services or nuclear medicine services.

Which criteria should a healthcare provider meet to be part of the ERNs? Admission criteria may vary based on several factors. Overall, they must meet the requirements established in the Commission Delegated Decision on setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil.

When will ERNs begin to work? ERNs will start working in early 2017, as long as the centers in the network are big enough to enable the sharing of expertise and to improve access to care for patients across the Union. Otherwise, the Commission should ask member states to encourage their healthcare providers to join the proposed network.

While it is true there are still certain relevant aspects to solve, like who and when will “pay the bill”, it seems that ERNs are a more realistic approach to achieve an optimum care, an European shared-knowledge network and a better access approach. This still requires the involvement of member states and the pressure from all the stakeholders. Europe cannot afford to miss this second chance.
Saturday, August 1, 2015

Patients and their role in patient organisations

Summer time has come and I thought that it was a great opportunity to resume the normal activity of the blog. A few days ago I read a post in Celia Marin’s blog talking about an interesting topic which can be summed up in the new challenges of the professionalisation of patient organisations and how this can distance them from real patients.

Let’s start by saying that patient organisations (associations, networks, foundations, etc.) are quite different one from each other depending on their objectives, scope and organizational structure. You can find, for instance, from small volunteer-based support groups to big professionalised organisations; from local associations providing patient support to supranational foundations lobbying for treatment access; from Boards constituted by patients to HCP drive entities. Also you might find a wide variety of profiles in their driving-forces: patients, relatives, physicians and professionals of all areas, who can develop their work in a volunteer, part-time or full time paid basis.

Keeping in mind all these peculiarities of the advocacy community, let’s focus on the key issue: should it be mandatory to have patients involved in the driving-force of a patient organization? Even this is a hard question to answer with a yes or no, from my humble opinion, I would say no. Let’s go deeper into details.

Before I get started, don’t get me wrong: I think that patients and their inner circle can play an important role in patient organisations, basically because they are the ones experiencing the disease in their own flesh and this will certainly lead them to take some action in order to improve their lives and try to meet their uncovered needs. However, it is common to listen “only a patient can understand what another patient is going through”. Of course, there are many common feelings from patients suffering the same disease, but every journey is unique and, even it can be quite supportive for certain individuals, it shouldn’t be taken as the Holy Grail or we will fail into the error of proselytizing the role of the patient in the advocacy community.

A part from that, regardless of our organisation focus, there is always something to measure the actions of our organisations: the outcomes for patients. No matter if we’re focusing on providing psychological support in a one-on-one basis, developing educational tools about self-care, lobbying for better treatment access, funding clinical research or advocate for policy changes. At the end of the day what really matters is that patients are doing better than yesterday until we reach the point in which we won’t be longer needed, staying away from anecdotal or non-relevant results.  And for that, being a patient is not a must. What it is a must is commitment, liability, seriousness and hard work of every single person with an active role in our organisation, no matter whether they are volunteers, paid staff or trustees, no matter whether they are patients or not.

I know this is a controversial topic which has been raised in some forums in recent times and here it is my point of view. I would like to know yours. What do you think about it? I’m looking forward for your comments!

Thursday, April 9, 2015

When it is not just invisibility

We talk about invisible illnesses to refer to those diseases in which symptoms might not be apparent to other people's eyes. These diseases are usually chronic and have a variable impact in the quality of life of patients. It is complicated to strictly categorise all of them, but they include diseases such as diabetes, arthritis or heart diseases, to name just a few. According to some studies[1], approximately 96% of people who live with a chronic illness may look perfectly healthy but might suffer from symptoms such as fatigue, pain, dizziness or cognitive impairment. Many patient organisations around the world work hard to raise awareness with the goal of throwing light on this reality.

Most of these diseases are well known by the scientific community and there are lots of experts and many ongoing clinical trials aiming to get either a cure, either a proper management of the symptoms. Even a society used to ask for healthy and productive individuals knows, to some extent, about them and is usually aware of the constraints that patients may experience. But, what happens when some of this diseases are not only invisible to the eyes of society but also to the vast majority of the healthcare professionals and the pharmaceutical industry even when scientific evidence has already proved their existence?

In this regard, on the one hand, we refer to rare diseases, which are those with a low incidence, affecting a small number of patients. According to the European Organisation for Rare Diseases (EURORDIS), there are more than 6.000 rare diseases which have been recognised by the scientific community. Almost 245.000 people in Europe has been diagnosed a rare disease, which represents around 1% of the population[2]80% of rare diseases have a genetic origin and they are often chronical or life-threatening conditions. Given its nature, research on this field is more limited compared to other diseases with a higher prevalence. Ongoing clinical trials are usually based on the hypothesis that an orphan drug[3] might proportion a therapeutic benefit for the patient. While recognising that the investment from pharmaceutical industry in this field could clearly be improved, ad hoc joint working groups have been settled with research centers and patient organisations such as NORD in the U.S. and EURORIS in Europe in order to achieve significant results in this area. This underlines the importance of strong and empowered patient networks to advocate and raise awareness about these diseases which affect a large number of people. However, there’s still a long way to go in order to get optimal results.

Affect 1 in 2.000 people
United States
Affect less than 200.000 people
Affect less than 50.000 people
Affect less than 1.000 people

But this problem doesn’t affect only rare diseases. I’d like to mention here the concept of “emerging diseases”, not in its classic sense but to refer to those diseases which have been recently discovered based on scientific evidence, but which are not generally well known and managed by most of the healthcare professionals, research centers and the pharmaceutical industry. Diseases such as porphyrias, chronic fatigue syndrome (also known as myalgic encephalomyelitis and systemic exertion intolerance disease), Lyme disease or post-traumatic stress disorder, to name a few of them. The research on these diseases is limited to a reduced number of specialized research centers, the investment in research is very low and infradiagnosis due to the lack of training and awareness of non-expert clinicians is too frequent. Symptomatology is usually attributed psychosomatic disorders, hypochondria, anxiety, depression or psychiatric conditions. At this point the disease goes beyond invisibility, causing late diagnosis which can extend for months an even years and tens of visits to the doctor and referrals resulting in a tremendous impact on the integrity of the patients and their environment, not only in the physical dimension but also in the emotional, social, work and economic sphere.

What is the solution? When almost EVERYTHING remains to be done, the main driver of change is the patient and their environment. It is an arduous task along with the limitations of the disease itself. In my particular opinion, research investment, political pressure and recognition of the disease should be led by patients. Partnerships with the main experts should be established in a horizontal and direct way, without restrictions, in order to discover treatments, provide a proper support to patients and, ultimately, make the disease history. The efforts made to change the life of a single patient living with a disease that goes beyond invisibility is always worth. Because every patient is a real person. And it is our responsibility as advocates to make visible the invisible.

[1] American With Disabilities: 2002, Household Economic Studies - Current Population Reports, Erika Steinmetz, U.S. Department of Commerce, Economics and Statistics. U.S. Census Bureau https://www.census.gov/prod/2006pubs/p70-107.pdf
[2] About Rare Diseases -  European Organisation for Rare Diseases (EURORDIS) http://www.eurordis.org/about-rare-diseases
[3] Drugs that are not developed by the pharmaceutical industry for economic reasons but which respond to public health need. – Definition from Orphanet
Monday, December 1, 2014

Patient advocates in. Not out - An interview with Jan Geißler

A new "I Advocate" interview is here! Today's guest is Jan Geissler, one of the strongest voices in the patient advocacy community. Involved in many organisation, projects and initiatives, he explains us about some national and European regulations that bans patients advocates, as well as other stakeholders such as nurses, non-clinical researchers and media, from satellite symposia and exhibition of medical conferences. He will talk us about what is the "Patients Advocates In - Not Out" Initiative.

The video will be subtitled in Spanish and English in the upcoming days. In the meantime, you can watch the full video here!

You can find more information about the initiative here:

Friday, October 24, 2014

Passion as the key to succeed

It's been a while since my last post. I've recently started working so 24 hours are not being enough for all the things I have in mind! However, I have endeavoured to write at least twice a month (I'll manage to find the time to do it).

A few weeks ago I was invited to participate in a workshop for patient advocates from all over the world of inmune and inflamatory diseases. I was asked to talk about ideas to propel an organization to excellence and best meet the needs of patients. Such a challenge, quite overwhelming. We had the chance to have a very interesting and enriching discussion. For this reason I've decided to share my humble opinion with you and to know what you think about it.

During all these 6 years involved in patient advocacy, I have had the immense luck of knowing patients and groups all over the world, operating locally, nationally and internationally. Something that really caught my attention is that some organisations seem to succeed reaching their goals and to engage with patients while others get stuck in the way, languishing or disappearing altogether. Since April I have had a lot of time to reflect on advocacy, and one of the main matters that has been back of my mind ever since is: what makes the difference between a succeeding organisation from a failing one?

A couple of months ago I found by chance a talk from Simon Senek titled "How great leaders inspire action?" (http://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action).

Simon talk about a concept that he called "The Golden Circle" (well, yes, he's a marketing guy... and you know they have to put a cool name to every single thing). This idea really summarized quite well my thought about succeeding patient groups.

The concept is very simple and it's about how the different organisations act. In the outermost circle we have the "What" question. Focusing on patient organisations, I assume the 100% of people leading these groups will answer basically the same if they are asked about "What they do": to develop projects, to offer services, to organise activities and/or to make lobby. So the difference between succeeding and failing is not in what we do by itself. 

If we go more into the inner circle we have the "How" question. "How a group does what it does" may vary a lot depending on many factors: volunteer-based vs professionalised organisations, funding, scope, disease awareness and I could go on. But my experience has taught me that this does not make the difference either. I know many small groups which seem to reach their goals and best meet the need of patients, while others with more resources and bigger projects simply don't. So then, what?

In my opinion, the key difference is in the "Why" question. Why do we do what we do? Why do we exist as patient groups? Why do we wake up every single day to give our best in a harshly world as is patient advocacy? I think the answer for succeeding can only be one: PASSION.

Passion has to be the engine and fuel of every single person involved in patient advocacy with a certain role of leadership in one way or another. That's the main key to make an organisation succeed without being affected by the daily issues.

Of course, it is not only about being passionate. I've mentioned the "How" before and this is related with TALENT. Our organisations need people with talent in different areas. And also talent has to be actively promoted. A good patient group leader does not need to be the best in every single field, but to make others better.

Lastly, the answer to the "What" question is WORK. Hard work indeed. There are a lot of challenges out there for a patient group and the difference between success and fail also lies in working hard to achieve them.

Passion, talent and work must be promoted and coordinated from a leadership position. There are three key concepts repeated ad nauseam in a whole variety of forums and meeting, but only those who really put them into practice are able to achieve success:

  • Capacity building. It connects the passion (WHY) with the talent (HOW). Delegating tasks and, in some occasions, responsibilities in talented people can really make the difference. As I mentioned before, a good leader goal should be to create a team of talented people and to manage to convey them the passion.
  • Networking. It connects the talent (HOW) with the work (WHAT). A mentor and good friend of mine told me once "Bring together goodwill talented people in the same place and you'll get results". That is networking. In this particular case, one plus one is more than two.
  • Excellence. It connects the passion (WHY) with the work (WHAT). You should be able to see, touch and perceive the results. And that takes a lot of work. Inspiring this work from the passion is crucial for succeeding. This way the people won't work in your organisation just because they don't have anything better to do (if they are volunteers) or for the paycheck (if they are employees), but because they really want to be part of the organisation. This way the results will be outstanding.

Lastly I'd like to add that I think our final goal as patient advocates is to no longer be necessary. That would mean that we'd have achieved all of our objectives. So it is crucial that we spare no effort in making this a success.

This post has been longer than usual, but I wanted to share with you all this concepts. I hope to have contributed with my humble point of view and I would be happy to know about yours, so don't hesitate to leave a comment!
Saturday, August 23, 2014

Our future doctors

First of all, I'd like to apologize I didn't write any entry for a long while. My mother has been sick and we have spent most of the time between the hospital and the doctor's practice. Fortunately, everything has come back to normality. In a sense, this post is inspired in everything that happened in the last few weeks. It's a topic I had in mind to talk about but, due to the circumstances, I'll do it before I thought.

I state my position clearly: I think there's a great gap that is not being covered in medical faculties that train our future doctors. Every single student will have to pass subjects such as anatomy, physiology, inmunology, pathology... Then everyone of them will have to choose their specialty so they will develope a in-depth knowledge on the heart, the endocrine system or the blood and the circulatory system. When they become interins in a hospital, they'll learn how to perform a precise diagnosis, how to handle symptoms and how to prescribe medications to cure the disease. Maybe, when they're ready to start working in a hospital, that young man who decided to become a doctor by vocation, may forget that a human being is in front of him while he's so busy dealing with a disease instead of a person. Is it his fault? Well, social and interpersonal skills are not required to go to University. But, what I'm almost 100% sure, is that nobody tought him how to comunicate with a patient, how to comunicate bad news or just how to stare at the eyes of a patient when he goes into the practice, leave the computer apart for a while and ask him: "How do you do?".

Last year, I had the inmense forturne to facilitate a seminar on paliative care in oncology on the occasion of the 8th Spanish Congress for Cancer Patients. Dr. Álvaro Gándara, president of SECPAL (Spanish Society of Paliative Care) was very clear: "Medical faculties are training healers, not carers". All the speakers, who were members of the Paliative Care Unit of the Fundación Instituto San José de Madrid, agreed that even the long-term outcome of the disease may be death, the doctor will consider this as a failure, because the treatment did not cure the patient. Alfredo Dominguez, nurse, summed it up well: "When a doctor says there's nothing left to do for a patient, everything still remains to be done". Also Maribel Carreras, psychologist, and María del Puerto Gómez, social worker, laid down the keys to make the change happen when treating a patient. They reinforced for me all the ideas that I had, not only as advocate, but as a patient and caregiver of a patient with a serious disease.

I've remembered a conversation that has taught me much as patient advocate. During lunch time, I was talking with my great friend and professional Fátima Castaño, psycho-oncologist, whom I was lucky to work side by side during 2 wonderful years. I was kidding about a movie in which a recent graduate psychologist extended her hand over the patient's arm to comfort him (in a very clumsy way, I have to say). I asked her: "Why psychologists use that compulsive habit of touching patients and relatives?". She explained me that in some cases this gesture can comfort the person and convey trust and complicity. So then the patient feels relaxed and shows his fears and concerns and doesn't keep them for himself. I have to say that I've remember this conversation every single day during the last weeks while I was accompanying my mother to the doctor, taking care of her at home, watching how she was nervous during various diagnosis tests and when I was waiting in the hall while she was in the operating room. And I have to say I was lucky to have that compassionate hand next to me. Sadly it never was a doctor's hand. Not because doctors were more or less sympathetic. Maybe, it was only because nobody taught them.

However, to be fair, I've the feeling that things are going to change. I am lucky to know medicine students who are members of the CEEM (Spanish Council of Medicine Students) and some others who organises the COE (Oncology Congress for Medicine Students). They are our future doctors. And they worry about patients. They want us to talk to them, to explain them our experience and concerns. When we talk to them, they express a critical point of view. This shows to me that they are treating us like equals and that they really want to confront the patients' speech with the healthcare professionals. On this relationship will depend that their training will change to be really focused on the patient and not only on the disease. There's still a long way to walk, but the seeds of change are already planted. Now it's time to watering them.