I'm Aware That I'm Rare: Gerry Fischer
At the age of 3, Gerry Fischer’s daughter Maleen was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, the doctors sent her home. Her life expectancy was only a few years. In the twenty plus years since her diagnosis, Gerry went on to help raise over ten million dollars in research funds during his tenure as the head of the European Pulmonary Hypertension Association. Maleen, now 21, wrote a book about her PH journey with the inspirational message: “Every person’s life and fate has positive aspects. You only have to search for them.”
I’m Gerry Fischer. My connection to PH is that I’m a father of a wonderful daughter, Maleen, who, by the way, wrote a book that is called “Hope Springs Eternal.” She was diagnosed when she was three so that’s basically what everybody has, the same problem running around for three years and 3-4 doctors to get her diagnosed. Moms always know when something is wrong but nobody believed her so they called her hysterical and then they were treating my daughter for asthma and many other things. When she was 3 we got a diagnosis of PH, at that time was PPH, Primary Pulmonary Hypertension. This was in 1998 and there was no treatment in Europe for children with PH at that time.
I’m a travel agent and I had as clients a lot of pharmaceutical industry partners and they sent me to Robyn Barst, to New York. Robyn Barst put her on IV treatment and that was 1999. Since then … In Austria they told me that my daughter cannot reach the age of 10 and two weeks ago she turned 21. First of all, my wife is 24/7 with my daughter and it’s quite difficult for her to let go now because at 21 it’s time, so she moved out and it was a big thing for my wife. In that time, Robyn Barst told me, “Give me 10 million dollars and I’ll find you a cure.” So, I wrote to Bill Gates, he never wrote back unfortunately but we started to do charity research.
In Austria, we have only eight million people living there but we managed to get over 10 million in research money so we have a research center in Austria. Then, the guy who ran the PH Association, unfortunately he passed away a week before he turned 30 years old and his dad asked me to continue it. That was the point where I took over the PH Association. Then in Europe, especially with the former eastern countries, even though they are in a European community, we face a big problem of access to treatment. Only two hours drive from Vienna, Budapest, Hungary, a friend from my daughter in Prague which is just a little further, they couldn’t get the treatment just because they didn’t have the money to pay for it, and this is really not okay.
You know that there’s treatment out there but you have no access, that’s really devastating. We started the patient association in Hungary, Czech, and so it started to move on and now it’s 39, up through Israel and Turkey, and all the Union of course. We are really a super group so the umbrella association PHA Europe is just a very small group of staff with five people not working full time. We try to empower the patient associations that are members in the different countries because we have to deal with 33 different legislations, different Parliaments, and we have to deal with 27 languages. My problem is I cannot communicate with the Romanians and the Bulgarians because I don’t speak their language. Most of the time they don’t speak English so it’s really tough. We overcame this problem, with have fellows. We take mostly medical students that are willing to translate and this got us quite far and we are very happy. We look very much forward to the future extremely when you hear what’s going on here, what’s going on in research.
We have two messages. The first message is access to treatment and the next one is finding a cure. Of course, we are looking for quality of life and early diagnosis. First of all, you have to make the patient aware that it could be something severe when you’re out of breath. In my case, if I go up the stairs and I’m out of breath I know I’m overweight. The next one knows he smokes too much. The one says, “Oh, I should go to the gym,” but they don’t go to the doctor. If they see that something is wrong they go to the GP and the GP has never heard of, so that’s where we have to attack. First of all, awareness public, to say, “Hey, if you have to stop on the first floor, please, it could be something severe. Go to the doctor.”
Then if you go to the GP, the GP, he has to be annoyed by us saying, “Hey, this is rare and you’re doing like it’s a common disease.” That’s the goal we have, so that the GP knows where to look on the website and see where the centers are, where are the specialists, and as quick as possible get the patient to the specialist. That’s the goal to shorten the long waiting time and the running around not knowing what’s going on, especially the isolation that you face. You can see the children, they cannot keep up with others, they cannot go run a bicycle and cannot go swimming with the others, run around, play on the playground because their lungs says no, and then they get out.
Also adults, they cannot go mountain biking and dance in a disco because they sit in a corner and they don’t know why. Mostly, they are mistaken by being lazy, by don’t want to do it, and you don’t see that they are ill. They don’t lose their hair and they are not cowering in pain in a corner, they look quite healthy if they don’t move. This is a big awareness to say, “Hey, be aware when you have to stop on the first floor because you’re out of breath. Think about PH.”
The proudest thing is that we have seen that we now in Europe have no more white spots, what we call it. That means no more countries with no patient association, that we fight for patient rights. That’s a really big accomplishment, that we have a research center even in a small country like Austria. That we went from no treatment to research center to experts. To see that we come from a deadly disease to a chronic disease. The big thing is fund raising which is a problem for many fund raisers out there. You cannot ask everybody to help you but you have to try. Mostly, you get the best fund raising out of if somebody sees a child. They don’t care about if I’m ill but if a child is ill it’s a bit different. We concentrate on the isolation of the child, we call them O2 kids. Then we say, “My friend says I’m come to get on a bicycle, my lungs says no.”
Then we went further. We said, “Okay, what is isolation? How can I show isolation out in space?” We called them the space kids, the O2 space kids, and we created O2dyssey. That’s the Odyssey in space and you are my savior and you can bring the kids out of space back to their families, back to earth. That’s how we work on maybe having a cool video game that will be called O2dyssey. I just want to have a wish to the universe which is a cure.
The biggest threat of this therapy is the therapy itself. I think it’s more dangerous than the disease even. You run into a line infection, the line infection can cause, for example, a problem with the appendix if you still have it, so she had an appendix problem and they overlooked it. The appendix were bursting … I don’t know in English… but then she had sepsis and a multi-organ failure and she was in ICU, she was more dead than alive.
That made her think about … First of all, I’d hold her hand because she is really blessed. I always tell her, “Listen, you’re invited to the by Karl Lagerfeld to the Chanel Show. You’ll sit in the first row next to Jessica Alba. Justin Timberlake comes to you and even Marilyn Manson so you always having something good. It’s not only darkness, I’m ill and so on. There’s things other kids there, they will not get like you can. Then, so she’s a fashionista as you say, so I held her hand. She was in coma and I said, “You’ll get that Chanel bag if you really fight for it.”
When she woke up she says, “I want to write a book.” Then she saw me in the back and says, “I heard you with the Chanel bag,” so she got it and she wrote the book. It’s about her journey, it’s very positive. I think it’s very nice for others to see how you cope with your journey and what the thoughts are. It’s especially nice for carers, because the carers get more into what does the person having this disease think about their life. She turned out to be very positive and very cool. I learn everyday from her.
I’m Gerry Fischer and I’m aware that we are rare.