Healthcare Elsewhere: What You Can Learn From These 21 People Who Got Their Medical Care Abroad

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Chapter 1

Holly Huber

Stem Cell Therapy to Treat Multiple Sclerosis

John Cote: Today we are very fortunate on our premier episode to have the wonderful, talented, and awesome survivor Ms. Holly Huber so let me tell you a little bit about her. She has an unbelievable and fantastic story of medical tourism and just surviving and thriving in life.

Holly was actually diagnosed with multiple sclerosis during the week of Thanksgiving in 2004, about 10 years ago. The story is really incredible and so she’s going to share that journey with us, but she had a quote on her blog that I really loved and I will go ahead and quote this right off the bat.

I ventured beyond US borders and had a treatment that is not yet approved here. My MS progression just doesn’t follow the FDA schedule – I just absolutely love that attitude. So Holly, thank you very much for coming on the show today.

Holly Huber: Thank you for having me. I’m excited to talk about my story now because five years ago I was looking at a future where I wasn’t even going to be able to share to talk. My cognitive function had gone by the wayside and I couldn’t hold an intelligent conversation anymore, let alone leave my house, drive my car, do anything independently. So I thank you for even considering having me on your show.

John: Oh, we appreciate it. You’re just really the perfect person to launch this podcast. Honestly, I was reading through your blog and looking through some of your story – the places you’ve been and the things you’ve done.

One of the things that’s on your home page at ILOVEMYNEWSTEMCELLS. com, you just said right off the bat when you were diagnosed, the doctor said, Well, probably you’re going to be in a wheelchair in four years, and yet here you are 10 years later and that’s not at all the case.

Holly: No, and that’s what we’re looking at. I went through the very traditional path here in the United States. I took all the medications that were available at the time of my diagnosis for multiple sclerosis. I was doing injections daily, sometimes twice a day for a while and then I went to a once a month infusion of a black box label drug that was very high risk to take, but I would have done anything to keep walking and one month led to one year, led to four years of us trying everything, and it just wasn’t working.

My last medication I was on, we knew by keeping our communication open with our neurologist here in San Diego, where I live, that the drugs weren’t going to work and that he had nothing left for me. So we started looking at alternatives outside the United States. I live in a very progressive, medical community. So we started questioning – Well, if you’re doing the research of stem cells, where else can we go?

That led us to really understanding what stem cells were, where they were located in the world and what it could do for people. We had talked to different countries, like China, Israel and Mexico, and found a publicly-traded development company, here in San Diego. The CEO ended up calling me and talking to me. That kind of started the, Wow! There is something else out there. Let’s do this. So that kind of took me on the beginning of my path to say let’s do something to not end up permanently disabled in a wheelchair for the rest of my life.

John: Sure, absolutely. So: you don’t accept the terminal diagnosis. You’re going to get a second opinion. Nobody else in the US seems to be able to help you. So why don’t you tell us where did you end up going, and what was the initial concept of what you were trying to accomplish. What were the doctors trying to do for you?

Holly: Basically, they’re using autologous, my own stem cells, as well as an adult stem cell from an umbilical cord. The idea, done in a rat model, has worked to remyelinate or basically repair the damage in multiple sclerosis. Patients have scars all over their brain and spine and so the idea was to stop with the progression of the autoimmune disease. That’s what multiple sclerosis is and then to also remyelinate or to repair that damage and we knew it worked in a rat model.

We looked at the published papers and said, OK, this is actual science that’s working. They still need to do it on people and when you can’t walk, you’re like OK, well, if it’s safe. I mean safety was a big issue. I’m lucky enough to have people around me that understood science. So we have the right people to tell us the questions to ask and like I said, we found the company here in San Diego and started asking the questions. Well, what are you really doing? They were kind enough and transparent enough to open their facility to us and say, Hey, why don’t you come and look at our actual rats? and talked to the people that we collaborate with. That was kind of the beginning.

With that, we didn’t stop the process of just going to where I went. We started talking to other places worldwide doing research, and most of the good guys out there are very transparent and they will share what they’re doing when you ask.

I went to Costa Rica. In 2008, for my very first stem cell treatment. It was over a month period of time in San Jose, Costa Rica, and it was nothing that I expected. People had told me you’re going to a third world country, which it’s not.

John: No, not at all.

Holly: Not at all.

John: I’ve been there many times, yeah.

Holly: It’s a beautiful country, and the medical care was at a level that I never expected. It’s a US hospital or a US funded hospital in San Jose, Costa Rica. From the moment that I walked into the hospital, and met the doctors who did the liposuction to extract my own stem cells, and later had spinal injections, I was watching their staff clean the floors and scrub and stuff that you don’t see even in the United States.

So all of a sudden, I was like I’m in a different country and they’re approaching medicine in a direction that I never expected. I was there for four weeks. I had eight spinal injections and IVs of my own stem cells and it was the best experience. Within three months, I could walk again. I could drive my car which I hadn’t driven in two years. I could walk upstairs in my home.

John: That is amazing! Talk about a life-changing and altering experience. I mean, we will get into the costs and stuff later, but you can’t put a price on that kind of ability and freedom in your life. That’s unbelievable.

Holly: No, and during my treatment, people asked me about it – they want instantaneous results and that’s expected. We’re living a desperate life. I was in a very dark place before. Not desperate but still dark. That’s the best way to put it, where it was just a struggle waking up every morning. How was I going to get through a day? How was I going to get dressed on my own? How was I going to fix breakfast? I mean just stuff like that.

John: The things that we all take for granted on a day-to-day basis.

Holly: Yeah, and I’m not in the mindset to give up, but I’ve come in contact with many people. Just this weekend, a woman called me and said, Holly, I can’t live another day. I’ve been there unfortunately. It’s the worst place to be, but during this process, I went for a month. I left the country. I was there. I started to blog just because I was very young as compared to the standard patient that was doing it. I was in a different country, there for an entire month, and I couldn’t walk. I couldn’t go sightsee. It wasn’t like this is a fun trip.

John: Sure. How old were you at the time Holly?

Holly: Thirty-two.

John: Thirty-two, OK.

Holly: I couldn’t go sightsee around Costa Rica, a beautiful country. But my daily routine was go to the hospital, have an injection, go home, lay down, fix dinner, eat, and start over the next day. We had major physical therapy. I had started sharing on this blog MSWorld.org where I had first asked the question, What do people with multiple sclerosis think about alternatives? I was told, Don’t do it. That’s what people were telling me. Don’t consider it. It’s not safe. Wait for the FDA. I just went back and I said, I will share good and bad. So if I made this decision and I did this, I don’t want somebody else to make a bad decision if that was wrong. After my posts of, This is what’s going on. This is my daily routine, 3000 people had contacted me, all the people that had told me not to do it.

John: Wow!

Holly: Yeah, so that was in the beginning.

John: A lot of times what you find when someone says You can’t do that, what they really mean is that they can’t do that. They don’t have the proper mindset for whatever reason. I’m not trying to disparage anyone but in their head, they believe that only Western medicine, or only in America, or only in England, or whatever country they live in. The thought process of going to a foreign country and getting a passport – many of them never traveled before. That’s the whole point of our show here is to try and educate people and shine light onto the fact that there’s all kinds of opportunities for all kinds of different things that you need to get done, that are available. Things that probably wouldn’t be possible due to monetary concerns, or because it’s a procedure that’s unavailable in your country.

I just love the fact that you just did not take that as an answer and said, No, I’m going to go ahead and change this because I believe that it’s going to be a life-altering thing, and clearly it has been.

Holly: It has. We were fortunate enough that we had the background. We had research knowledge and so that helped us skip over the fear from, like you said, leaving the country, getting a passport and doing that kind of stuff.

We were fortunate that we had traveled extensively and we knew the questions to ask, and so now five years later, this is what I do. I talk to people about my experience and say, Hey, look, if you have the desire to go look for something different, that’s what’s going to change the world. It really is, and when I’m talking to people that are venturing to every country possible, and saying, Look, is this safe Holly? What do you think? I can give them a little bit of background and say, Hey, go ask these questions, and then they’re confident in their decisions. That’s what we’re seeing happening in the world. It’s a game changer like you had said. It’s changing our environment, what we’re going to do, and how we’re helping people on a worldwide basis. We’re not talking locally at this point now. We’re talking worldwide. So it’s exciting.

John: Sure, absolutely. So since you mentioned kind of the safety aspect of it, that’s one of the questions we always like to ask and you kind of covered this a little bit already, that you had done some research and talked to some local Americans. Some of the people that were based in the US that were helping you get down to Costa Rica. What were some of the other information that helped you decide that this journey and this procedure were going to be safe and successful and the right decision for you?

Holly: I had done research and I had actually applied for a stem cell trial here in the United States at Northwestern University. I was not a candidate just because I was too far progressed at the time, but understanding what stem cells do, and regenerative medicine, and how it was already being used made a lot of sense.

So, when I was talking to these people, these individuals, these doctors, I would ask a question. Well, how does the mechanism of a stem cell work for a disease? They would come back and they would explain it.

A lot of times, more advanced than what I knew but then I would go back and ask another question, and they would go back and they would explain it again and again. This wasn’t a one-time conversation. This was over two and three months at a time. I guess transparency really did it for us. When they would say, Well here’s our lab. Here are our published papers. This is our data. We’ve now looked out in the world. This is what we’re learning. Yes, we do need to try it on a human being. We have the safety. We can show efficacy to some point. That’s what led us to say, Hey, let’s go ahead and do this.

Like I said, I had talked to a lot of different countries and honestly, China was some place I was really looking at, but I was in so much pain. A trip to China for six weeks at the time is what they had told me. Six weeks was unbearable. I couldn’t have made the trip to China for six weeks and stayed there in a hospital. So we had found the US company that this clinic was tied to, and that was pretty much our thought process of why we were going to pick this clinic and a lot easier trip too. But you think about that as a patient – what was I going to survive for six weeks?

John: Yeah, and that’s another thing that leads me right into the next question now, with regard to aftercare. That’s a really important part of it, but before I get there, just for a second, you were talking about how you realized, look, I can’t legitimately make this trip all the way to China. It’s a long flight and this and that. I mean it just wasn’t going to work for you. So you made the decision to stay locally and that was a great decision for you and what you needed to do personally.

When you look at the aftercare aspect of it, can you talk a little bit about what was set up for you? What were your expectations? Did they meet your expectations with regard to aftercare? Because that’s an important part of the whole procedure.

Holly: Yeah, they did. They set up a system where they keep in contact with you. Again, transparency was a big thing for me. The doctors, the founder, the medical staff were very open. We’re talking about international now. So you could call. I had one of the lead doctors. He would call me knowing that I was comparing clinics and comparing treatments. He would call me from his journey from going from the laboratory, getting the stem cells and going to treat a patient.

He would call me. He was like, Holly, can I call you back in 25 minutes because I’m just getting to the lab right now? I mean when does that happen, right?

John: Yeah. I mean the director of the organization. That’s awesome. I mean let’s face it. We’re in the internet world here in 2014. Skype, I mean we interview people all over the world all the time. We’re talking on the phone all day long. There’s no cost involved. So, you know, why not?

Holly: Exactly. It was wonderful. So the aftercare, they were really good. They have a system set up so every 3, 6, 12 months they’re asking you how are you doing. What are the symptoms? Where are you at? I was one of the first at the clinic that I went to. In the world, I’m one of the first patients that have had autologous – meaning my own stem cells, derived from my fat. I didn’t know that until afterwards.

But these clinics, research has to be done somehow and the people like us that choose to go offshore or to other places, that just goes back to research and showing hey look, we’ve had 200 patients with success and I was one of those people. So they keep in contact with me. They have grown. They’ve changed. I’ve been through the process with the clinic that I went to. I’ve been through the good and the bad. They keep in very close contact with me, tell me to write them and to call them anytime when I have a problem and I did. I had my first treatment in 2008 then I did so well. I could stand up and walk again that Thanksgiving which is a couple of weeks after my first treatment.

My dad was just beside himself, and so he in his limited education says to me, Holly, what do they treat again? We went over the clinic that I chose, what they were treating with stem cells. He has type two diabetes and so he said, Well darn it, I want to make sure I keep walking. He was close to starting insulin.

John: Excellent. OK. Great.

Holly: So that next year, we go back to the clinic so that he can get treatment for his type two diabetes. It was exciting just because he goes, Wow, I’ve seen it firsthand. My daughter can walk again and has a life again. Let me try this. It kept him off the insulin.

John: So he had a good result and and outcome then?

Holly: He did. He didn’t have to go on insulin. It kept him as healthy as he could be with lifestyle because that’s what type two diabetes is. He was nervous like everybody else and so I was invited to go back with him, a great experience.

So that was in March, I think, of 2009. He had his treatment, exciting, and then the clinic that I had gone to that he was having treatment at, they were growing. They knew that they needed to build a better lab, a bigger lab; but again transparency, they showed me all of that and they kept in contact with me. They were building their big lab in Panama, not too far from Costa Rica and so, they had invited me as a guest because I was there with my dad to come see the groundbreaking of their lab in Panama. So I got to go as a tourist.

John: That’s awesome, very open and transparent. Love to hear that and I will tell you what, we will talk about Panama here in just a second and just for those of you who don’t know, I actually had stem cells implanted, not autologous.

They were actually donor stem cells as part of a therapy to repair damaged knee cartilage that I had. So it wasn’t as serious obviously or life-threatening as what you had. But I’m also a recipient of stem cells and it has made a big difference in my life as far as my ability to move without pain and things like that.

So yeah, I love where they’re going with the research and the technology and everything else with stem cells. We really appreciate you sharing all this.

OK. So you started going down to Panama afterwards.

Holly: Yeah. So they moved. They picked up their whole business. They took my cells they had saved because I was one of the first and then they started saving cells and they took everything to Panama. So when I went back, and realistically just because patients ask, Is it a one-shot deal? In my case, no.

My MS is extremely aggressive and it’s not a cure. It is a true treatment and I’m hoping that someday we can see it as a treatment that we can get our local hospital here in the United States. But for now, I realistically need treatment probably every 18 months to keep me at a place where I’m not worrying about not feeling my hands or my feet, and walking. I haven’t gone back on any medications in five years.

So do I pay attention to that? Yes, I do, and I’m like every other patient in the world. I don’t want to ever be back in that dark place I was at. So I would need to go back for treatment. It wasn’t a one-shot deal. I don’t think that the clinic even knew that at the time. They didn’t. I mean there had to be that trial and error and I’m one of those people.

So does it make sense for me? Extremely. It does because I was paying a lot of money for my drug therapies. I’m not on drug therapies anymore. So now that money just transfers to – I plan a trip every year and a half to Central America and it’s great. Like I said now in Panama, part of the hospital that they do, part of their treatment at is at Johns Hopkins Hospital. It’s called Punta Pacifica.

So it’s extremely reputable. The lab that they built down there that I’ve gotten to take a tour and they invite patients all the time when you go to have your treatment. That’s a four million plus dollar lab. It rivals any US lab I’ve ever been in. So it’s exciting.

John: Well, that’s fantastic. I’m glad that they’re sharing all that with you. For those who are in the medical tourism industry, whether you be a facilitator, or a facility itself, or the director of an organization, you can learn a lot from just the openness that Holly is talking about. I think that’s what patients are really looking for, since it’s so new. I mean I think last statistic I saw, less than half of the people in North America had ever even heard of the term medical tourism. They’re not even aware that it exists and what’s available to them.

So being open and honest and giving tours or having videos, that show what they’re doing benefits everyone. Keeping it all just open and transparent is the way it should be, and that’s great. Thanks again for sharing that.

So if you wouldn’t mind getting into this, you mentioned you had good and bad. What were some of the things that didn’t go as well as you hoped for?

Holly: The first thing was in my second treatment, when I kept in close contact with the clinic and said, Well, what happens if I have a flare-up? In multiple sclerosis, your immune system starts to attack again and I was always worried about that. So they said, Come back, and we didn’t have the cryogen tanks to do what we needed to do. We didn’t save our first patient’s stem cells, and so they invited me back and they saved my stem cells.

Well, in that process, they had to take my stem cells again. That’s the second medical procedure, liposuction. So I had to go under general anesthesia, the whole surgery in a major hospital. That made my immune system say, Hey, wait, wait, wait. Too much stuff going on in your body. We don’t like it.

So it caused some of my symptoms to come back but again, they kept in close contact with me and said, Holly, we want to go ahead and give you the entire treatment all over again. I wasn’t happy with that because I had to stay in another country for longer than I even planned.

I had planned on a 12-day trip that ended up being an entire month. Was that a negative? It felt like it a little bit just because I wasn’t prepared I guess. But then in the long run of looking at everything, how great it is, that the company says, Look, we didn’t do it right the first time. Let’s do this.

Then because that happened five and four years ago, now they’ve changed the entire protocol. The theory was, maybe your own stem cells weren’t the best cells to use. The donor cells are extremely potent and they work really well. They’re viable and we’re going to go back to just using umbilical cord cells and I’ve had extreme benefit with that as well. So I’ve been one of their human lab rats really, but it has been great.

John: But willing. That’s great and obviously clearly you’re getting a great benefit out of it.

Holly: Yeah.

John: Do you feel that there’s any danger associated with that as far as being part of the testing program?

Holly: No. Not really.