Interview of HCFA’s President Anna Spinou on Opinion Health

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Interview of HCFA’s President Anna Spinou on Opinion Health HCFA TEAM April 28, 2023

Interview of HCFA’s President Anna Spinou on Opinion Health

The President of the Hellenic Cystic Fibrosis Association, Anna Spinou, spoke to Opinion Health about the launch of free newborn screening for Cystic Fibrosis in Greece, the importance of prenatal screening, and all the latest developments in the disease.

We would like to thank the journalist Ms. Nikoleta Dambou!

Watch the interview at

Below you can watch the video with the full interview.

The following is the full interview with Ms Spinou:

Mrs Spinou, in general there is a lot of good news and developments for patients with cystic fibrosis, both for adults and newborns. The most recent development is that free neonatal screening for cystic fibrosis is starting, but not only for cystic fibrosis, and for 29 other diseases. And so for the general public to understand a little bit, this comes after the joint ministerial decision on March 31 that the Ministry of Health signed with the Ministry of Finance to develop a pilot application to allow free newborn screening for some diseases, in a nutshell, for newborns. Mrs Spinou, this is a very important development and, as far as I know, it has been a request from all patients for many years.

Tell us about yourself, both as President of the Hellenic Cystic Fibrosis Association and as a patient, how important is this development?

Yes, you’re right. This development is very, very important for cystic fibrosis patients. Really nowadays. today with the new innovative treatments our disease is changing face, that is, it is gradually turning from a fatal disease at a young age, it is turning into a chronically manageable disease, and in fact, based on research in young children today who are born with cystic fibrosis and start treatments on time, are expected in the next few years to have a normal life expectancy. So with this new hopeful face, you can see how important it is to focus on early diagnosis of our patients, that is, so that these patients can receive the treatment that will help them from the first days of their lives.

Indeed, it has been a long-standing request of our Association and our doctors for neonatal screening. Abroad this has been done for many, many years, newborn screening, as we call it. So we are very pleased, that it will be implemented in our country. With the signing of the new decision, the pilot program really begins and these screenings will be carried out on all babies, on all newborns in Greece in public and private hospital centers. This screening will be carried out free of charge and it is actually estimated that with these cystic fibrosis screening tests about 20 babies, 20 newborns will be identified each year as having this disease. And so we’ll be able to get these babies started on treatments in time, they’ll be able to get the specialist medical care that they need, so that they can have the best possible outcome and a good quality of life. And here I want to touch a little bit on the issue of prevention of the disease. As an Association we encourage and certify couples who want to have a child to have the molecular prenatal screening in time, that is, to see if they are carriers of the disease. In our country there are more than half a million carriers, who of course do not get sick, but when 2 parents are carriers, there is a 25% chance in each pregnancy to give birth to a child with cystic fibrosis. This molecular testing is not covered free of charge in any country abroad.

In Greece we have managed with many actions and it is covered completely free of charge for 90% of the mutations of our disease at the People’s Hospital. Of course, if someone wants a higher percentage of mutation testing, they can go to the laboratory of the Children’s Hospital Aghia Sophia in Choremio, which does not cover the whole percentage there, I mean the cost of the test. But what we are informing and urging the public is to do the prenatal screening on time, in the knowledge and awareness.

Is this screening only for couples who have cystic fibrosis or can it also be done for people who do not have a disease?

Yes, molecular prenatal testing is for the general public, it’s for people who don’t have the disease, who are just carriers of the disease. So any of us.

It’s aimed at the general population, all 10 million Greeks. Any one of the 10 million Greeks who has no health problems whatsoever, who has not developed cystic fibrosis, can be a carrier. Any one of us can be a carrier, so it is good to do this screening to know whether there is a chance of bringing a child into the world with cystic fibrosis.

Prevention is important, we keep saying that, Mrs Spinou, prevention first and then everything else. Mrs Spinou, let us explain a little bit for the general public what cystic fibrosis is, since you are a person who lives with cystic fibrosis, but will you tell us a little bit more, we will tell us a little bit more about your experience, tell us a little bit more about your experience, tell us what is cystic fibrosis?

Yes, cystic fibrosis is the most common inherited disease in the white race. Based on the National Cystic Fibrosis Registry we have about 850 patients in the country. It is a multisystemic disease, meaning it affects many organs of the human body, but mainly the lungs and pancreas. And from the first days of diagnosis, a very difficult continuous struggle for survival begins for the patient, a difficult daily routine for both the patient and his family. They need a lot of treatments, respiratory physiotherapy every day. We have constant infections, respiratory, the cough. We need to take a lot of medications, we have a lot of pancreatic complications. We cause diabetes, liver complications, bone complications, frequent hospitalizations we do for IVs and unfortunately in the 80s when I was born and I was born we had few adult patients. Life expectancy was very low. They didn’t make it to adulthood for most patients. But now with new innovative treatments, the life expectancy is increasing. Science is advancing and the disease is starting to change its face.

Plus you said before Mrs. Spinou, if I heard it right, that cystic fibrosis has gone from a fatal disease to a chronic one?

That’s right, thanks to these innovative, these new treatments that are very revolutionary now in the future we will be talking about a year of a manageable disease and not a fatal one.

That’s very gratifying, it’s very gratifying ! You will tell us in more detail a little later about the treatments, but I would like to stay a little bit with the patient. To the person who lives and lives all his years, because that is how he was born with cystic fibrosis, and you are an example of this, Mrs Spinou. I would like you to tell us about your experience, that is, tell us a little bit about your childhood, how you felt?

Yes, today I am 41 years old. I have exceeded life expectancy and statistics. I was diagnosed in infancy. 6 months old. I was born at a time when things were very difficult. We had no cures, not many patients made it to adulthood. So imagine my parents were told by the doctors that I wouldn’t live long, I wouldn’t have time to finish school. Nevertheless my parents helped me very much, they were very, very optimistic always, very strong people. Since I remember myself as a little child they had explained to me that I had a disease which in order to be well I would have to do my physiotherapy, take my medicine, not get too tired. And I think I started to realize a little bit in elementary school when I started going to school, that I was a little bit different from other kids, because in my bag I always had a little box of medicine that I had to take at recess. Otherwise as a child I was relatively carefree I had accepted who I was because that’s how I was born. I didn’t know what it was like not to take medication, not to do physiotherapy, so I took it very normal and very much for granted. Then adolescence was quite difficult.

But what about school? How did the kids treat you because it’s tough on kids in school and at those ages.

Exactly, the outward symptom of the disease then,when I was 5,was coughing. I used to tell them I had a cold because I couldn’t explain to them why I was coughing all the time in winter summer. Otherwise I was functional as a child, I could play with the other kids, I just felt a little lonely being different from the others. But okay I accepted it along the way because I got used to living with it.

So let’s get to today. In your adult life after you went to college, how was the journey from then to now when you entered adulthood? How did you come to terms with your disease?

Look, with cystic fibrosis there’s a progressive worsening as you get older, so in my adult life things were more difficult for sure. I faced difficulties. When you have trouble breathing, you get tired very easily at the slightest thing. I faced a lot of difficulties both at university to manage to finish my studies and at work later on. I was working for 15 years at Attiko University General Hospital, whenever I had to be away from work very often, to do my intravenous hospitalizations at Sismanoglio. And unfortunately 5 years ago at about 35 years old I started and entered a very difficult stage, which was end-stage respiratory failure. There really things were very, very difficult. I was on round-the-clock support with an oxygen machine I could not support myself. Imagine to take a bath or to put on clothes in my pajamas was a very difficult process. My husband had to help me, my parents had to help me. So I was a candidate for a lung transplant and really from 2020 onwards when we did a huge fight with the Association, with the National Cystic Fibrosis Association and brought this new treatment that really freezes the disease, my life changed. I was reborn all over again and now I can claim to live all the things I dream of.

So you can do all the activities that you need to do. Is there any difference from a person who doesn’t have cystic fibrosis? What activities you probably can’t do, you find difficult to do?

Yes, before the treatment, I really couldn’t do any activities at all. I was confined to bed and really everything was difficult. Even talking on the phone with a friend, a girlfriend. So we focus on what we can do. Now I can go out for a walk, do my day to day operations, without having the oxygen machine, I can be functional, go on trips, do what really fills my life and dream now to live all the things that I didn’t get to live in the previous years.

So Mrs Spinou, would you say that this is a new era, a new part of your life? The period after the therapy that we will talk about later?

Exactly it’s a new era that really not just for me, it’s for all patients. Because 75-80% of patients receive these treatments and it really has changed our lives. We’ve gained back our lost life, we’ve gained back our breath and it’s something that really since the day we were born this is what we’ve been dreaming about. To have this therapy come along that will help us to be functional, that will help us to be able to dream that we have a future. We will be able to live like, have a normal life expectancy, like our fellow human beings, our fellow citizens.

Does motherhood, Mrs. Spinou, have a place in your life?

Yes, look, cystic fibrosis unfortunately affects as a multisystemic disease, it affects the reproductive system of patients. The vast majority of men have azoospermia, so it’s difficult for them to conceive to have children in a normal way. Women again patients have difficulties in conceiving, we have more difficulties in pregnancy because they have too much lung burden. In previous years we had very few patients who actually managed to bring children into the world. Now with the innovative therapies this is changing as well. It is very promising because we see women around us who are starting and entering the conception process, the pregnancy process and that is very, very promising. It’s very revolutionary really and we’re looking forward to a few years. Now it’s become a baby boom, as we say in America, with women with cystic fibrosis. So if I can improve my respiratory function even more, why not? It’s something I’d love to do as well.

And the treatment that you’re referring to, Mrs. Spinou, let’s say that it’s one of the victories of the National Cystic Fibrosis Association, and I should mention that this year you’re also celebrating your 40th anniversary, having been founded in 1983, informatively for the public. And through all the actions both from treatment and other actions that we will talk about below and developments you have really managed to improve the quality of life of patients. Let’s go back and see, this treatment, which changed your life is now reimbursed by the NHS. Tell us a few words about it so that other patients who may not be aware of it can be informed.

Yes, indeed, as you said, we have made a huge struggle and with the Association to bring this treatment to our country with early access. We worked very much with the state, with the Ministry of Health, with the Ministry of Health, with the EOF, with the EFET, with the EOPYY, with our doctors, and we really managed to bring this treatment that saved the lives of our patients. In 2020 and after we brought it, all patients started gradually to join the treatment. In January we had the happy event of signing the agreement on reimbursement of innovative therapies, that is, the negotiation of the negotiating committee was completed, and we thank very much everyone who contributed today to get here. So you understand how important the role of a patients’ association is in all of this. It’s important that patients should be involved in these state processes because we really do bring the real data from the impact of treatments so that we can facilitate the work of our state and our committees. Thanks to these drugs, our lives have changed. We can breathe better. Complications of the disease are reduced, our hospitalizations are reduced. We have fewer infections in our respiratory system, fewer flare-ups in the disease and most importantly our risk of lung transplant and risk of death is reduced. So we can now live a more productive life this way. We can study, we can work and, as we said before, why not have a family. So cystic fibrosis is changing face. We gain what we miss most, unlimited breath.

And here it is worth noting because it is good that every time there is a development in a treatment that really saves patients’ lives, I want to underline how important innovation is, Mrs Spinou. Because without innovation we would no longer be able to talk about the development of many diseases such as cystic fibrosis, such as HIV, which has become a chronic disease, and patients would die very early. So let’s emphasize a little bit the value of innovation and make sure that the states have the money and include as many as they can. Ms. Spinou, there are some cystic fibrosis centers to manage the disease. Can you tell us a little bit about those, that is, where are these centres, where can a patient go and what do they offer?

Yes, it has been a constant request of our Association since the beginning of our foundation to have specialised centres. Centres because our disease is very specialised, we need doctors specialised in the disease, with experience who know how to deal with the complications of the disease. In Greece we have 2 adult units. The first one is in Athens which is a bigger unit in Sismanoglio and the second unit is in Papanikolaou in Thessaloniki. There are also 2 paediatric centres, the first one is at the Aghia Sophia Children’s Hospital in Athens and the second one is at the Hippokratio Hospital in Thessaloniki. At the same time in some hospitals in our country we have so small clinics that attend a very small number of our patients locally that are in cooperation of course these clinics with our large centres. There are clinics in Papageorgiou in Thessaloniki, in Heraklion in Crete, in Larissa, in Patras and it is really a very important part of this, to have specialised medical care and monitoring.

How many cystic fibrosis patients are there in Greece?

Based on the National Cystic Fibrosis Registry, we have about 850 patients registered.

So I guess the Cystic Fibrosis Centres, the specialised centres are enough?

We could have more, the truth is.

Are patients being served?

Our goal is to develop regionally, i.e. apart from the 2 big ones Athens, Thessaloniki in each region we want to develop in the other regions as well, so that our patients are not forced to be transported to such long distances. Our centres have always been understaffed both in terms of infrastructure and medical staff. We have made great efforts to develop our centres in cooperation of course with our doctors. Imagine that based on international hospital standards, just one full time specialist doctor is needed for only 50 patients. So you can understand the Sismanoglio which is the largest majority of adult patients, we have 300 patients and we have only one doctor. Imagine how difficult our follow-up is and how much of a problem there. Because even with innovative treatments it doesn’t mean the disease is over. We need the continuous monitoring every three months. Regular monitoring and we are happy that the Ministry of Health met our requests, they put out a notice for staffing our centers in Thessaloniki which were also understaffed, in the Hippokratio of Thessaloniki which is for children and in Papanikolaou which is for adults so that a second specialized doctor could come and be able to meet the needs of the patients. Also in Sismanoglio which is our largest unit for adults the call for a second permanent pulmonologist was completed a few months ago. So we have asked the administration to integrate and place the new pulmonologist as soon as possible in our unit so that she can start training. Because it takes time to train her so that she can meet all these complex needs of our patients. And of course it’s very important as far as our centers are concerned, because our disease is multisystemic, so we need a multidisciplinary team and we need our treating physicians to work with physicians of other specialties. So it is important to develop our centres in this area as well, but also, of course, on the issue of infrastructure.

Well, yes, all this is important and the developments again in that it has been strengthened, will probably be strengthened with qualified medical staff. Mrs Spinou, the Hellenic Cystic Fibrosis Association is continuing your efforts to raise public awareness of organ donation and lung transplants. Tell us a little bit about this part. What is happening?

Yes, look. The innovative therapies unfortunately there are about 25 to 100 percent of patients in Greece that because they have rare mutations, these patients cannot receive these therapies. So these treatments have no effect on them. So these patients, when they reach end-stage respiratory failure, really the only life-saving solution is lung transplantation. So until 2014 there was no stable long-term lung transplant programme in Greece. So we made a lot of moves as an association and we managed to sign the transnational transplantation agreement with Vienna at that time, where in Vienna, well, about 30 patients were transplanted within five years and their lives were really saved. In 2020, the National Transplant Programme was launched at the Onassis Heart Surgery Centre, with the support of the Onassis Foundation and the support of the National Transplantation Organisation. And we really support this program a lot. Unfortunately, of course, in Greece we still have a low number of organ donors. So we have really started as an Association since 2020 when the program started here to support all this effort that our state is making, the effort that the National Transplantation Organization, the Ministry of Health is making, in order to increase the number of organ donors. We’ve launched our campaign that we call Unlimited Breath Be a Life Donor, to raise awareness, to raise awareness of organ donation. That is, we are motivating people to register as organ donors to give life to their fellow human beings. We had built, we had started with our mural at the Nice hospital and we are organizing online awareness campaigns and it is very touching because the state is really standing by us. The President of the Republic is an official supporter of our campaign and it is important because we finally see that all this is having an impact. While our campaign was running we had managed to increase the number of organ donor registrations and it is important because we managed and a few months ago the first lung transplants to our patients with cystic fibrosis in Greece started. It is something promising and we expect that in the next few years we will be able to transplant all our patients in need.

Very good news, Mrs Spinou, very good news we are hearing and it is good news because in our interview we are telling a lot of good news and it makes us all happy. We have another one to say, the creation of the register of patients with cystic fibrosis, Mrs Spinou, where the Hellenic Cystic Fibrosis Association was actually the first to create the register. Tell us about that.

Yes, Mrs Dabu, that was a very important step as well. When early access to this drug started and with all these innovative therapies that we had, the need to really create a national registry of Cystic Fibrosis in Greece was created. We were the first patient registry that was created in Greece during the Covid period. It really is a very useful tool in the hands of our doctors, the registry, because it allows them to make the best decisions for the treatment of our patients. It is a very useful tool in the hands of the state to organise the benefits for patients. It is also a great achievement that we have managed to link this register with the European Cystic Fibrosis Registry, so that there is an exchange of knowledge from abroad. And really here to say a huge thank you to our doctors, to all our doctors, because they really put in so much time to get this whole effort completed. We thank the Ministry of Health, the registries and treatment protocols department for their efforts, and I really hope that the rest of the measure moves forward quickly. Now there is the rare disease registry that is underway and really moving forward with all of the registries so that we all have this positive tool in our hands.

Yes, it’s a very important tool, because the data is always useful for patients and in so many ways. You in your association, Mrs Spinou in the Ηellenic Cystic Fibrosis Association, you support patients very much, you are always close to them and in the part of psychological support through a programme that you have both for adult patients and for parents of children who suffer. Tell us a little bit about this programme and how can one join?

Yes, look as I told you before that the treatments in cystic fibrosis are time consuming. Often unfortunately there is poor patient compliance. Many patients neglect, do not do their treatments and many times unfortunately do not accept the disease itself. Also, the low life expectancy creates fear, creates a lot of anxiety and in the now with the new treatments that have come along and really change our lives, we are reborn all over again, we are now being asked to organise our lives all over again. So at the same time as the carers, who are feeling enormous stress and pressure and worry about their children. So we understood these needs very quickly in the Association and we understood that we have to empower, support the patients, empower the caregivers. So last year, for the first time, we piloted a programme of psychological support groups for patients and carers. This programme is run with the voluntary contribution of our psychologist, Ms Stavroula Rakitzi, who I would really like to say a huge thank you for all the effort she has put in and her support. The results of the pilot project last year were very encouraging, very, very positive. We’ve had a big impact on improving the mental health of our patients, so we’re continuing the programme this year, it’s been running since the beginning of April. We are continuing this year with more groups. Our patients embraced it this year and the caregivers very enthusiastically embraced it and our community embraced it,. We have more participation and anyone who is interested can contact our Association to join the program and be able to receive that mental health support, psychological support.

Now what is the life expectancy of a patient? Do you have any data? I mean, after the latest developments of the innovative new treatment. Do you have any data?

There’s no recorded data yet that we can statistically come up with a life expectancy. Other features I will tell you that there are studies that say that it is predicted, estimated that children who start the treatments now will have a normal survival expectancy in a few years. Also in America there is a patient who is, let us say, 60, 70 years old. This is very advanced for us, so we expect, we expect the life expectancy to increase enormously and reach normal.

Very nice. In the Association, what actions are you going to do, say, by the end of 2023? What will be your actions?

Yes, we are very focused on empowering our community. We will continue our groups of psychological support to patients and caregivers. At the same time we are empowering our patients through online coffee breaks that we do. We call them coffee breaks, meaning they are online meetings where we have the opportunity to exchange views with each other. Patients and parents come in from the other side of Greece from Rhodes, from Crete, from islands where people are really isolated there. So we exchange information, we exchange experiences, we support each other with our experience that we each have in the disease. Of course we will continue to do our actions to claim the rights of our patients. Very importantly we will continue to strengthen and empower our centers, our specialized centers as much as possible, so that they are equipped, have the doctors we need and the necessary infrastructure. Access to medicines and that very important part. We are anxiously awaiting the next drugs that the newer ones will come in and for patients who are not getting the new treatments,. So we are here to ensure that our patients have timely access, to get them in as quickly as possible. Transplants also, very important part. We support the National Transplant Program. We continue our Be a Life Donor certification campaign to invite people to sign up as organ donors and of course our actions on the value of disease prevention. We’re educating new couples, couples who want to have a child about the importance of getting tested early.

And in conclusion, Mrs. Spinou, tell us what are your main problems, demands that I can say to both the Ministry of Health and the EOPYY, if there are any at the moment? In other words, what would you say to the Minister and the Administrator, the Minister of Health and the Administrator of EOPYY, if you had them here now?

Yes, strengthening cystic fibrosis centres is the alpha and omega. Without doctors, no matter how many drugs we have, we cannot proceed without specialist follow-up.

So strengthening the cystic fibrosis centres is the first pillar, the first important pillar.
Second, strengthening transplants. There are a lot of efforts being made by the state really and we thank them for strengthening organ donation. So we expect in a short time to have very good results.
Then facilitating our patients in various benefits in the nutritional allowance that we are claiming so that they can get it because we need special diet because of our disease and they need, there are more expenses in all of this. We continue for a better tomorrow.
We continue our struggle in cooperation with everybody, with the state, with our doctors.

Do cystic fibrosis patients get a pension?

Our patients have succeeded, the state has granted our request and we can take full retirement after 15 years. Apart from the disability pension, of course, which every patient can get out very early, we also have the possibility, we are in the special diseases that with 15 years of work, either in the public or private sector, we get a full pension as if we had worked, that is 35, 40 years.

When can a patient with cystic fibrosis get a disability pension?

It’s very few years, it’s around 3-5 years, depending on the fund where each patient is, but that’s a low amount that the patient will not be able to live so easily, let’s say, with so little money. Otherwise for patients who can’t work at all it’s the disability benefit that all disabled people get, that monthly benefit.

Very well, Mrs Spinou, thank you very much. I was really, really pleased to have you with us and to be able to hear all this good news and to hear about the developments on cystic fibrosis, which affects babies and adults. Thank you.

And I thank you for giving me the opportunity to speak today and I want to say that our Association’s Team is continuing the actions. We will continue our fight until we can make sure that all patients have unlimited breath and until we achieve what we have dreamed of since the day we were born, that day will come when science will discover this cure, truly that will eliminate the disease for good.

And we wish it and we are always with you and by your side for whatever help we can offer from our position.

Thank you very much.

Be well, thank you very much.