The Middle East CF association (MECFA) is working to make lives better for people cystic fibrosis. Christine Noke is the co-founder and CEO of MECFA. The stories you will hear in this podcast are sometimes gut wrenching and unimaginable. It will also inspire you to help raise awareness about CF everywhere, and make sure that someday everyone has a level playing field in healthcare.
Noke says their goals are simple - to improve:
Let's help spread the word.
For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
Find the Middle East Cystic Fibrosis Association here: https://www.mecfa.org/
Vertex Pharma - the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/
Middle East CF Association with Christine Noke and Laura Bonnell
Laura: Christine. Why don't you tell me why and how you organized the middle Eastern CF association.
Christine: Okay. I'm the former director for CF worldwide, and I retired from CFW in 2012. My intention at that time was to step back from working in the CF community. I've been working in developing worlds with the CF worldwide for 14 years.
And it became really mentally and physically exhausting. So I decided I would step back while I was managing CF worldwide. I was positioned in Turkey to make it easier for me to reach countries we were working with at the time. And there was a lot of focus on India, Turkey and the bulk. And so it made it really easy to be positioned here.
I eventually applied for my residency here in Turkey. I loved it and I knew I wanted to stay. I was lucky and married a lovely Turkish man and made Ismea my permanent home working here. I connected with the CF community in this region. And it was really those connections who inspired me to set up a regional CF organization, despite stepping down from working in the CF community, clinicians, families, and especially the patients.
Continued to contact me through social media, uh, sending me emails and, uh, really it was Facebook. They seem to be able to find me very easily and it was really hard to sit on 14 years, I've experienced and do nothing. When I knew that the patients were suffering and that there was a lot I could probably do to help.
So I would say it grew organically out of need, and we're still growing, changing and adapting through our pilot programs. We focus in three key areas of activity, getting diagnostics to the hospitals in the region, feigning CFNS teams and supporting CF centers and advocating on behalf of patients for access to essential therapies.
Laura: Was it overwhelming to start this, to help a community with cystic fibrosis that had nothing.
Christine: Well, I mean, I came into it with 14 year’s experience working with developing countries. So I'd really seen it all from India to us. We were just one around Thailand. I just knew how bad things really were. So yeah, it's very overwhelming.
And it's still overwhelming most days, especially on the days when I'm in direct contact with families or patients who are in dire situations. Through social media, our website, emails, families reach out to us. They send us videos, pictures, and they share their stories. It's incredibly difficult to come that close to a family with patients who are near the end of life are suffering inhumanely because there are no drugs or clinicians to help them manage the disease in their country.
We know we cannot help individual patients directly the cost to fund medication or bring patients to other countries. Where there is adequate care is enormous. The cost of one patient's care would be more than training a CF team and a local hospital or St. Lobbying health ministries to provide access to essential drugs.
Every day, we have to make tough decisions, sometimes turning a family away, even though we know the patient is suffering and that there could be help if they could get care. But if we are going to change the lives of patients, long-terms in this region. We must get to the root of the problem. And that lies in educating clinicians, providing diagnostics and opening access to essential therapies.
In some countries, we refer to those as the low hanging fruit like Turkey programs can rapidly improve the lives of patients, but in others where there is not one CF specialty drug or one clinician who takes an interest in CF zero support from the government, these countries will be much slower progressing.
We feel a constant sense of urgency to reach the patients who are most vulnerable, but so much of our progress depends on the country. We're in the clinicians, the health officials and patients themselves. This is overwhelming. But when we come to the starting point, we ask where, how what's the first step.
We have a template of what we know may work, but each country is different, and the solutions must adapt to those differences to be successful.
Laura: How many people, when you started, this were diagnosed in Turkey and kind of how far you have come since starting MECFA, which is middle East CF association.
Christine: My work in Turkey was actually with CF worldwide, so my previous position MECFA has worked here in Turkey with Professor Nasr, which I'll tell you a little bit more about in this talk, but. So when I first came here, let's see, 15 years ago in Turkey, they probably had a thousand patients, a thousand, maybe 1500 patients diagnosed, and the care was starting to develop, but they still were lacking many of the necessary drugs.
There were only a handful of clinicians, but work here was already underway, but it was being done by clinicians and a patient organization called Kifder (Kifder's mission is to work hard to increase the life expectancy and quality of individuals with cystic fibrosis. To provide the necessary information, support and solidarity opportunities for patients and their relatives in the journey of learning to live with cystic fibrosis). So I wasn't really deeply involved with the development of CF in Turkey, but by the time I was creating MECFA….I was in collaboration with Dr.Bulent Karadag (Director of the Pediatric Pulmonology Department and CF Center at Marmara University Hospital) who you will hear a lot about through my talk because he's my partner in crime with , he's really, my strongest doctor in the region. And he's the vice president also of MECFA. He had done a lot of work put down a lot of, you know, pavement to the road to care for these patients. So when we stepped in, we were just fine tuning already a system that was there.
And I remember one of the things professor Nasr said, she had gone to the Marmara University and met with the administration of the hospital to say, you know, you need to increase the number of rooms and there needs to be separation and segregation and all this.
Laura: Let me just interject right here. So Dr. Samya Nasr who you're talking about is Egyptian, native to Egypt, and she is here at the university of Michigan hospital as the Clinic director for the pediatric pulmonology clinic.
Christine: Sorry. I always think everybody knows them because they're so everywhere.
The doctors, you know, MECFA is working in three areas. We know, I know from my time before in CF worldwide, what do you need in the developing world? You know, what's happening? You said how overwhelming was it? Well, I had seen some really bad things. I'd held little children who were so blue. They looked like the avatar babies in the movie.
I mean, they were that blue, the mothers were tying them to the bed because when they moved, they cough, and they were so ignorant to the fact that coughing was good and they just assumed the best thing to do would be to keep the child. Unmoving so that it didn't cough. I'd seen children who were 12 and 13 years old who looked like a five-year-old with completely bloated bellies, bring arms from malnutrition. And they were the children who were getting enzymes, but the mothers were not educated enough to know that the enzyme comes with the meal, not an hour before the meal. So there'll all of these things that I'd already seen, that they are over there because it's like you have the answer in your hand and you just didn't tell her how to you know, give them medication, right? And so the child is literally dying of starvation. So, you know, I, I was ready for that and I knew that what do you have to do? You have to figure out what's the most important things and the things that you can actually change, because there's a lot of stuff you will never change in many of the countries, you can't change the political situation.
You can't change, whether it's a social healthcare system or an insurance healthcare system, or there's always barriers that you never get over. But I knew that it's down to educating clinicians so that they know how to treat and care for the patients and to create CF teams. The allied health professionals are very important.
You have to diagnose patients and you need a diagnostic system. That's affordable. I don't want to name names in this because we work with all industry, you know, but some of the equipment that in the middle East is very, very expensive. It can cost up to $200 a test. This is impossible in a developing country that has, you know, sometimes maybe a $30 million budget for their healthcare, for the entire nation of, you know, maybe a million or a million and a half people.
So you have to find solutions for diagnostics. And we did, we worked with a company here in Turkey. They produced a machine. That's a copycat from the leading diagnostic systems. And it's less than a quarter of the cost. So the test dropped down to $17,
Laura: Sweat test to diagnose CF. Yes.
Christine:
So we went from the expensive equipment to this alternative equipment, which we are now working really hard to put these in all the hospitals and. Not meaning to, but moving out the other more expensive equipment, because it's not sustainable, it sits on a shelf. It collects that's because the hospital administration doesn't have enough money to buy the baskets and it's not covered by the government.
So it becomes obsolete even though it's the best machine you can possibly have. So this was another area we knew we had to address because we knew there was lots of. Machines that were on calibrated, no new kits. So they were wasted. So we targeted diagnostics and we found that through it's that we found a comparative machine that's very, very affordable for our countries and it was also local.
So that meant you had technical training available. That was local. And it was the same culture and same thinking, same food, same. There's a lot of reasons why it worked out better to work in, in the region for our equipment. And then the final thing is advocating. There's no advocacy over here. People don't know what CF is.
Doctors don't know what CF is. One of the big problems of not getting diagnosis is because they're not clinically seeing signs that we should send them to a sweat test it, treating malnutrition. They're treating lung function, but they're treating it as an individual case as it comes to the hospital.
Patients literally walk around with their patient files under their arm. And they go to the government hospital and they give it to the pulmonologist, and he looks through it to see there's no CF team, there's no nurse, there's no routine. There's no physiotherapists that he works with. So, I mean, when you have this problem, you have to say, okay, what's the basics of educating the clinicians.
It's getting diagnostics. Cause we have to diagnose them. And that way we know what the numbers and we can. Advocate the government please cover the cost of essential trucks. And we created a, what we call it. Two kit lists at MECFA, it's just Dornase, vitamins, inhaled, tobramycin, saline, hypertonic saline, specific CF nebulizer, like a Pari boy or a good solid CF nebulizer that will last several years on nutritional supplements.
So we created this list and we lobby the governments. We go in and we say, okay, here's some diagnostic machines that's going to go into all your hospitals and we'll run an education program that educate your clinicians. And in return you have to supply these drugs. And what we also do for the countries is we've resource, generic brands, wherever we can.
And it just so happens that this region, you have a lot of access because they're created in India, they're made in Russia. You have a lot of drugs being made in Argentina and they're being sold over here. So it's easy access for us to be able to go for the generics. And it really greatly reduces the cost of care sometimes down to 25% less than what you're paying, let's say in America, even like let's compare Turkey.
Pulmozyme in Turkey is like $360 a month. It's $3,800 in America. And so that American price is completely off the it's never going to happen in developing world. Well, that's where our focus is. And Dr. Nasr came in because she took a whole of the big question of how do we implement education? What do we do?
And her goal was quality improvement, and this is something the CF foundation is also involved with. They're doing some international work. Now they're trying to support the developing world. And in that they're granting organizations like MECFA and clinicians, like Samiya funds to run quality improvement projects, which are put in place to increase BMI lung function and following the, um, hygiene rules in the CF center, because this is not followed. There's no such thing as segregation patients come together and wait outside in the waiting room, sharing bags of chips and the toilet.
Laura: And so for anyone that doesn't know, I don't know if this is 30 years ago, but it was, it's been a while in the United States, you wouldn't be in the same room.
You won't even share the same waiting room. You sit in a hallway because of the cross contamination possibility, uh, between lung bacteria and the coughing.
Christine: Well youknow, one of the things that happens is our doctors. When we have our conferences, they. They show slides of their patients and they're always grouped together, and they know that there are Western doctors in the room.
So they say it makes comments like, well, I'm really sorry. I know that this is a picture that doesn't show us following segregation by all of our patients are hospitalized in one room. Wow. Sometimes sharing a bed. So we won't bother with trying to. Show pictures of them segregated. I mean, these are the things that we go in and we try to, you know, work out and a lot of it's education, you know, Samya.had such great results with the mom.
Are you different? We started a program there. It was our pilot and feasibility project and we called it the mommy project. So mama university in Michigan university, mommy, wonderful quality improvement education program being run by Dr. Nasr. And there was so many immediate changes. I mean, now when you go to the mom or a center, just outside the, uh, clinic in clinic, But you see by a table and it's got gloves and you know, the plastic cover and a mask and everything.
So people in a trash can so that you can clean yourself before going in and out. They were not following these simple things, even though all those supplies were in the hospital. And Marmara actually is one of the better CF centers in the region. So that quick, you know, go get a table, put some stuff here, she just walking up and down the halls and saying, you know, don't do this and you need another room and you really have to, that was just the beginning and then came the education, which is, and that's the research where they're using, you know, patient research on what they're learning and their implementation to see the changes and we're studying how that works.
And yeah. When I really started to say, okay, I know that now it was so worth the mommy project and putting it together and all the, you know, overwhelming pressure, we had to come up with some idea of how we could begin. And the Marmara university puts all of their patients in the European database. And this year when Yasmin the doctor who enters the data into the European database, entered the data, the tech on the other ends got back to her and said, there's a lot of mistakes here.
The data's skewed. Why is the BMI up so high? And why is the lung function so improved? Something is wrong. And we were discussing in our last meeting and I thought, that's it. That's what drives us. You know, there, look at that. It's so much of a change. They think we're lying.
Laura: Because everything worked, they learned and put it in place.
Christine: And then it just went beyond that. I mean, they're still, they're working now with Azerbaijan Demam or universities working with Azerbaijan CF center to implement the qui program. They're also working with other hospitals in Istanbul and around Turkey. So it's like this thing that just keeps mushrooming, you know, organically spreading and growing.
And it's a template from MECFA. We're going to copy this program and other countries we're already planning for 20, 21, the pandemic, you know, it's this stopped everything. Yeah, book a flight. We can't make any real plans, but our hope is in 2021, is that Dr. Uhler from the Boston CF center will be starting the similar project to the mommy project with the Kyrie task baby hospital in Palestine.
So it will be a copycat. And then when Palestine has done training, we're going to ask the Cory task hospital to train in Ethiopia. The goal for us really is to use the American, you know, edgy, you know, the doctors and their know-how. We create a few training centers in the region, and then we can use those training centers to blossom out and training other hospitals in our region, but we can keep the resources local because it's costly to bring the American teams over,
Laura: you know, before we started talking, I was going to ask you, do you.
Feel frustrated because the U.S. or, um, England has so much medication and is so fluent with all that is related to CF, but. You've already answered my question because what you're doing is changing lives, but I do want to hear how it makes you feel, knowing what you know, back here in the States and dealing with.
Really you’re starting from the beginning. Absolutely. Starting from the beginning there.
Christine: Yeah. You're saying ground zero. Yeah, the ground, I call it ground zero. When I walk in and there's zero. I, you know, I have my, I have levels. If I see enzymes, I'm happy, I think, Oh, okay. I've got to start, you know, so we can, or we can build on that, you know, but we have countries where it's just nothing, you know, but.
I got done. And I left the CF community after 14 years from frustration and heartbreak because of that, because I would go to conferences and there was one thing that used to really irritate me and I'm over it now because I see so much success now that I feel out of that. Place where it hurts to look at it, you know, but they show this child from the 1950s is one of the first diagnosed with pancreatic cystic and where they really knew what CF was.
And it's a little boy and he's, he looks, you know, malnourished and bloated and all the back. And they were saying, this is what our patients used to look like and look at them now. And I'd be like, my patients still look like that. As a matter of fact, that guy looks really healthy. And there was a gap for a long time.
There was a big gap between Western, you know, and understanding, or even bothering to look because you know what, the biggest problem that was is the Caucasian disease theory. When CF was first on the radar of clinicians and stuff, it was called a Caucasian disease. It belongs in the white world of the white wealthy world, but that was because they didn't suffer from malnutrition and they didn't suffer from signs at that, you know, clinical signs of CF other than by having CF, whereas in the developing world. You still were suffering from respiratory disorder, from pollution and malnutrition. So it was hard to say, see the disease the same way.
So, because for so long over here, Africa, uh, blacks, and then the Brown and Arab people, they were told you don't have CF. So doctors still believe that here, which is incredible, but it's not true in Turkey. Turkey is Caucasian. So we're on par with Europe on what are our ratio is. They have something like 3,500 patients way, but in the middle East, there's still a lot of first cousin marriages.
It's cultural. Okay. They marry within their tribes, which means there's related. So I had a family in Palestine that had seven children born and die with CF. Can you imagine? No, I can't. And they were first cousins and their parents were first cousins and there was like a long line of first intermarriage, you know?
So. Yeah. I mean the middle East, I think the biggest challenge for us is, like I said, diagnostics to prove that we have CF and it's probably in some countries more prevalent than it is in Europe because of the inter family marriages. So we have to wait and see how that, what those figures look like years down the road, when we have proper diagnostics in place.
Laura: Hpw many have you diagnosed in Turkey now? And how many do you anticipate. Diagnosing with CF.
Christine: Okay, well, we're not doing drugs in Turkey because Turkey already has their own diagnostics and they actually have genotyping and everything. Turkey's quite advanced CF care. You know, anything they don't have is modulator drugs and they are lobbying for it.
So it won't be long and we're equal to New Zealand. And even, I think Canada doesn't happen yet. I'm not sure if they do now. Yeah. A lot of Western countries that are still negotiating. So. But Turkey has everything that you would find, and you could come here and bring your daughters and you'd be fine.
You'd be comfortable with them here.
Laura: So you're talking more about Egypt and
Christine: Ethiopia, Sudan and Yemen. I mean, w we try, we can't even think about Iraq, Syria, Yemen. I mean, these countries are completely out of our grasp until the political situation. A big problem we have actually is around when you have sanctions on Iran, the healthcare systems are affected and CF patients done now not able to book their German, made nebulizers in their American made medicine because they is a lot to sell to them.
And that why I don't get into the politics of it, but I certainly do deal with how it affects the families. And I will never understand the rationale of it. How CF families are, you know, somehow involved and why it's affecting them. But yeah, so I find that overwhelming and I do find it depressing sometimes, but at the same time, it's so helpful.
I mean, I just went to the in 2019 before the pandemic slammed us all at home. I went to the Nashville, North American CF conference, and it's so electric, you can feel the. You, you just feel like you're on the precipice of the cure. You just know it's out there. And there's a lot of money going towards it.
And a lot of amazing researchers putting their time and effort in it. And the CF foundation really made it, their goal. They're going to get, they're going to find the cure and I know that they will. And now with the modulator drugs, it's so hopeful. If we can get modulator drugs over here, it just changes everything because the cost of care goes down.
So. So much and also the need and the, the, the burden on the hospitals and the clinicians and the allied health is decreased. So it's not so many hospital stays. And the patients are able to join their communities and contribute. So it no longer just a burden on their society and their family.
Laura: we didn’t meet at the NAC FC, but I was there also.
And I mean, there's a lot of people there. So Dr. Francis Collins, the director of the national Institute of health was there and he did his singing and uplifted everyone. And he. The true pioneer, uh, for CF and one of our, all of our biggest heroes. What did you take away from him? What are your hopes with the future of leaders like Dr.
Francis Collins and people like Dr. Nassar and all the doctors that are working toward making the future better for people with CF in the countries that you're working. With, uh, or even hoping to work in
Christine: what is MECFA it's a medical association it's made up of clinicians from the region. And so Dr.
NasR, these clinicians, the pioneers, they're the reason why we do what we do because they're behind us and they're showing us walking with us and sometimes we're carrying them and sometimes they're carrying us, but they all have the same passion. And that passion makes me believe as the same thing I felt when I, I told you it's euphoric almost, you know, when you work so long in CF and you feel that magic in the air when, when the doctor is singing to you about all of the trials and tribulations and, and where we are.
And for me, especially thinking of the developing world, I see that. And I think, yeah, yeah, we're going to get there. Yeah, we will. And, and I just, the cure. Because I would love my job to end tomorrow. It really would. I would love a pill to come and a baby gets diagnosed and he takes a pill or an injection.
And that would be wonderful. And then I don't need to go to work anymore. So. That's what Dr. Nasr, my hope with Dr. Nasr, she takes away my job,
Laura: but it is so hopeful, if, if you're born today in the United States with CF or, you know, in some other countries that have all these modulators that are available and covered by insurance, I mean, what a time to be born if you're going to be born with CF is now because those drugs change the underlying condition of CF, which is fabulous. But we were talking about before we started this podcast, the difference between. What we know in the United States and the reality of other countries that don't have the luxuries of the medications that there are in the United States. How do you feel about that? And maybe if you were talking to someone with CF in the United States, I mean, you're not trying to make them feel bad, but it's night and day between CF care.
Christine: Yeah. You know, I have to, I have to catch myself all the time when I'm with CF patients, because patients sometimes feel sorry for themselves. That's part of having a disease. I have a chronic disease, and I know, I feel very sorry for myself when it's active. So it's really hard. I have to catch myself because of course I want to say.
If you only know you wouldn't even be alive right now, if you were living in a country that I work in, many of them, you would never have made it past the age of 12 because that's the life expectancy there is. Imagine your day without your enzymes. I imagine without a nebulizer, imagine your day with no medication to clear your lungs.
How many days will it take before you can't take a breath without struggling? How many days off your meds will it take? Every time you have a medicine. Every time you have an inhalation treatment, be thankful, be thankful you have it because life without it is something you, if you haven't seen it, you haven't walked into a room and witnessed it.
You still will never believe it. No matter what I say or how I explain it because it's grounding in your own sputum and suffering from not being able to digest food. So severe pain. So that their day-to-day life. There's no relief. There's no day when I wake up and I feel better. You know, I have to set a bite my tongue and say, be thankful, walk a day and over here and see how you feel.
Laura: That's one of the beauties of doing this. I've learned so much. I think that most of the CF community. In other countries have no idea that in other countries they can't get the meds they need, because I have known that Dr. Nassar has been traveling to Egypt. I've known that for years, but until recently we've only been able to just start talking about the huge difference that I didn't even realize everything that she has done and is doing to change everything for others.
So. Extremely eye opening and so much to learn.
Christine: She's about to embark on a QI program. That'll take four years. She's, we've put four diagnostic machines in four hospitals there. So she's going to work in those hospitals now to implement quality improvement. Egypt is there's no government support for medication one.
They do have, I think, access to enzymes, but they're buying them and they're costly. I think doctors are fundraising to buy meds. And most of the hospitals, they didn't have diagnostics even. So the government covers care as a, as the, you know, regular pediatric care coverage in a socialist system. But the training and things mainly has come from Dr. Nasr going over and training the doctors and we're raising money to bring them back and forth and do things, but it's been years and there's still very little progress made. So we hope that she can go in and run the education program and with our, you know, work behind with advocating and, um, continuing to push for education, she'll have better success.
So. But Egypt is really difficult. It's a ground zero.
Laura: What is MECFA doing in the future.. is part of it continuing to raise awareness, but where are you going moving forward?
Christine: Well, I said in the beginning, you know, and I keep repeating, this is like our elevator talk diagnostics education CF center team and centered development.
And advocating. And we recently just formed our, we, again, we were a year off on this program because the pandemic, and then we just, it fits anymore to put it in place during the pandemic. Okay. There was other things that social media was thinking and people were thinking and doctors were thinking of. So we put it off for a year, but we've formed a committee.
And one of the persons on that committee is Dr. Preston Campbell the former CEO of, and we're going to use, and he said, how can you know, I'm retired. So put me to use, and I said, I know how I'm going to use you. I'm going to send you to all the ministers of health in the countries that we're trying to work, because he has a presence, you know, Preston, and he's very clever and he very passionate.
And he's walked the road of the improvements and the steps that have gone on in America to get where you are. So he's, you know, perfect person for the position. And we're going to send him off to talk to these ministers of house and openly face-to-face advocate on behalf of patients for that shortlist of drugs we talked about, and, you know, we are going to develop a social media campaign, bringing a consultant into work with us.
And that social media campaign will tell a lot of patient stories. We want to awaken the understanding of CF and the region, not just among the clinicians, which is very important, but in the general population, we want CF to be as well known in the middle East as it is in America. Because even before I was in CF, if somebody would have asked me what cystic fibrosis, I would have said, isn't that a lung disease?
I would have known that because it was just so much information out there in America. So we know what the disease is. We want something like that here. So teachers understand when they have a CF patient and what that means, and people can go for a job interview, even though they have CF and it's accepted in the society.
And the things that Americans take for granted are so far off here, you know, So we will implement the social campaign. And part of that will be a letter that we submit to the minister of health and we collect public signatures on that letter. And we're all hoping that a combination of this and also providing, you know, access to the generic brands that we'll be able to get some access more available over here..
Laura: over here. And I have to tell you, I don't know if you know, Anais Mansour he's a dad, his twin boys, Omar, and mine have cystic fibrosis. Doctor Fouda is his doctor. And I did a podcast with him as well. He talks about Makeba and traveling to the conference. It is the highlight of his life.
He was so glad to get information. He just couldn't believe all this information and all these doctors and his story. Uh, just one of many, a young professional parent, trying to make sure his kids. Don't die from CF by age 12, as you know, is the statistic there. He wants to immigrate; he would like to come to the United States or get to the UK.
He's so desperate. And you must experience so many of those kinds of stories, but you're definitely the light for a lot of people. As I heard from Anais Mansour.
Christine: I know on us actually very well, and he's a lovely person and he's afraid. And the overwhelming thing, you know, when you asked that question before, and I read that question.
When I was preparing, I was looking at it's all overwhelming on every phone call. I dread sometimes, you know, opening up my IgE because I know that there's a message in there that I don't want to read. He sent me videos and things and I could, so it's very hard and stay positive. Keep focused. Don't let your heart rule your mind.
That's very hard. I've been told by so many. You're so emotional. You know, you allow it, but if you don't have that empathy, if you don't have that connection, if you don't feel that passion for Anas, or if you don't go away with a tear in your eye, then you're probably not going to be effective at this job either because you gotta have something that keeps driving you against the wall until you break it.
And that wall, it breaks people. It breaks doctors, it breaks families. So I guess you, you know, you have to Anna's cases, people with those stories, they break my heart, but they also keep me motivated and I hope we are light for them. If I have. Some change. If I can create a better life for even a handful of patients, I'll feel like it's all been worthwhile
Laura: And tell me about those conferences. It's a once yearly, when we're not in a pandemic,
Christine: it was one of our first projects. And the reason why we went with the conference was because we were trying to build a network of doctors in the region. We have over 250 now. So. That's really good for the region. And we comfortable with that, you know, but we, we held the conference without really knowing it was going to be annual or what was going to happen really just to get people together and introduce mech fund sort of launched the organization.
And we brought people from the U S foundation and we brought European CF society, people and CF Europe. And it was really fantastic. We had over 300 and I think 30 delegates, which again, It's a rare disease in the middle East, and there are no organizations dealing with it. There are no really nonprofits over here.
They just don't operate the same way over here. All the care is covered by the government. So you don't need a lot of charities working to, you know, improve care. So it was really wonderful to see so many people and there were families also gain, you know, and the doctors, clinicians from all over the region.
And so we decided, okay, let's have an annual conference. And so the next one we held in Izmir, Turkey, my city, and then the one after the, that was in Istanbul, and our topics, you know, our basic, because our clinicians are not as advanced as clinicians. It certainly doesn't look like the agenda you see at the North American or the European conference.
But we find that what is really valuable in the conference is the networking opportunity. And for someone like Anas to come and say, Oh, look, there's doctors that care about CF in the middle East. I didn't know that, but it's also an opportunity for clinicians to meet up and share and talk. We always make sure there's plenty of time for every country to have a clinician to deliver a 15 or 20 minute talk about CF in their country.
So it's a really, it's an awakening in a, and I really am always surprised by the Western doctors who have come, who are just like, Whoa, I didn't realize it was. Quite that bad or quite that good or so I learned a lot. So I think the conferences are important though, for our region and also for the international CF clinicians to laern.
Laura: And what have you found that maybe is something that you need to grow or work on to move forward to kind of expand what you're doing?
Christine: it's always funding. Funding is such a problem for organizations because education programs, cost money and even discounted diagnostic equipment costs, money. Uh, running an advocacy campaign costs money.
And so funding is a barrier always. And we're very fortunate that the CF foundation has been so very generous and every project that we've put across their table they've agreed to support. So that's been wonderful. We do get a pharmaceutical support, but we're very careful even with pharmaceutical support because we in this region, there's still a lot of, uh, loose laws around.
Pharma, and how they work with clinicians. And a lot of Pharma, not the ones that we work with in CF, but they will give holidays for prescribing drugs. And there's a lot of, you know, not so good situations, let's say, so our doctors become. They don't want to deal with the pharmaceutical company. They don't want to take money from them because they don't want to have any, you know, that have the pharmaceutical companies have any say over what the programs are.
So it's funding. And then the other barrier is continuing to connect with the right clinicians. Because you can go into a country and you can send me, I'll give you diagnostic equipment and I'm going to come and visit you with the American people. And they're like, Oh, I'm so excited. Yes, yes. I want everything, but they don't actually do anything.
They're very busy. It's just, they're really not the right contact. They don't know what to do because you have to be kind of a special. Clinician, you know, you have to have contact with the ministry of health and you have to be really dedicated and focused on CF. And that can be hard to find. I think those are the two biggest barriers that we have for future.
And where are we going? You had asked me, where are we going in the future? We're going to continue to run the quality improvement. Repeat the quality improvement projects. Until we have training centers across the region, we're going to continue to donate diagnostics and continuing running advocacy in the area, in the region and building awareness.
So that's really our main focus.
Laura: because of everything you're doing. I wonder at what point life expectancy will change. Would you imagine at what point is it years away or when will it go from 12 to hopefully into adulthood. Are you able to even guess at this point, ?
Christine: I think a doctor would, and I, and I can, and I will, but I'm not a clinician.
So I want to, you know, don't, I think it would be better answered by a clinician, but what do I see with the Marmara project? I told you, you know, we had the BMI increased so dramatically that the calling back saying you, you made a mistake entering your data. So, if that is what the results are going to be, then I see adulthood very quickly coming.
Okay. I think, I feel like we will raise that age very quickly because look how fast things moved in Marmara the program was only underway a year and they had that kind of change. So if you can implement that program in another center and you have that same results, you can see that very rapidly. You're going to be looking at adulthood.
We are also including, you know, the transition that's where Dr. Ahmed Uler he's coming and he's going to be very helpful. It will help us to have an adult CF qui program and help with the transition from pediatric to adult care. And we haven't had to think about that before, because it was just always so far back, you know, we thought, Oh, well, limits and worry about that for another, maybe 10 years.
But now we say, look, we met with, we better add that because it's coming. So I'm very hopeful and positive about that.
Laura: That is so exciting. I remember adults here saying that they were, so excited because they believed that they were going to live into adulthood when that was happening in the United States.
Christine: Yeah. And now they're going to live to be old people. I, you know, the former president of CF worldwide, he's in his sixties. Mitch Messer is lovely. He's still going strong and I'm so happy for him, but his brother died at six in his teens. I want to say 16. It might not be exact on that. But, and the reason was is he just wouldn't adhere to his treatment the same way.
That's what Mitch felt. It was. He didn't do his physio. He didn't take his vitamins and do the things he was supposed to do. So.
Laura: So as we wrap up this podcast, is there any message that you want to get out to everyone as far as where you're going or what your hopes are, but I think everything you're doing is so exciting and I'm so glad that you educated us as far as what the needs are and where you're going.
Christine: Well, I guess I, if I, if I'm speaking directly to an American CF audience, I would just say, you know, if you have time or you can volunteer. Or you can donate a small amount to a program internationally, not just MECFA. Okay. This is the middle East, but there are programs going on in Latin America. There are programs going on in Africa, maybe what your heart is, or you feel a connection to look at how you can support those programs to continue and to you know, to remember and to know how it is in the developing world and where we, where CF patients are, and don't forget them. And as you celebrate all of the great advances and your access to all the wonderful care and the new modulators and this Salem place, somewhere in, in your heart and mind for those patients who are still many, many, many years behind and, uh, volunteer, donate, give time, give resources, add your skills, join a board.
Do what you can to help
Laura: Christine Noke, Middle East CF association. Thank you so much for talking to us on this podcast. Would it be helpful to say how the mindset of any parents has changed since you've implemented in areas and given them more hope? Is there any point mentioning that?
Christine: Well, I will tell you a little story and you can pin it to tag us in if you want. The Mamrara project. Okay. What they had the hygiene education that they were teaching in the sentence Dr. Massa was teaching. And so the Montessori team immediately connected with Kifter (Family association in Turkey), which is the CF association. Uh, the family association here in Turkey. It's very strong. We'll get the station and it's headed up by a mother of CF course. Well, those are always the warriors and dads too. So they teamed up from this program and they created a manual for patients to follow hygiene rules. When visiting the clinic, meaning put a mask on before you go, don't sit together with patients, schedule your appointments so that the clinician knows when you're coming, because in socialist healthcare, people just go to the hospital when they want there's no appointment, just show up and go to the department you want and you get seen.
Sometimes you wait, sometimes you don't interesting. Yeah. So the, the families got together and made this manual. And so the doctors told me it was funny. Yes. Now the families, the parents understand the CF standards of hygiene in the center and the CF center. So when they see something wrong, they reprimand the doctors.
Laura: Beautiful.
Christine: You didn't change your gloves, you didn't change your mask. You shouldn't be in here without your new mask on. So they're doing those kinds of things. So Bravo parents want to do better. They want to know, and they want to see how they can, what can they do to make, you know, not every parent of course you have different scenarios, but for the most part, so anytime you can offer parents anything like Anna's from Egypt or anywhere, they feel so thankful and grateful, and they are the first to speak out and say, thank you. thank you for focusing and for pulling the clinicians together and for bringing change to the region.
And it gives them hope.
Laura: And that's wonderful that they're kind of cross-checking each other on the precautions. And that is a wonderful. Again, Christine, Noke founder, CEO, president extraordinary woman working on Mac font and changing the world. Thank you for joining us.
Christine: Thank you so much. It's just such an honor to be here with you, Laura and good luck with your daughters and take care and stay safe.
Laura: Thank you.