Interview with Maggi Ann Grace, Author of State of the Heart

This is a transcript of my podcast interview with Maggi Ann Grace, author of State of the Heart, A Medical Tourist's True Story of Lifesaving Surgery in India.

David Williams: This is David Williams, CEO of MedTripInfo.com. In 2004, Howard Staab found out he would need surgery for a failing heart valve. Unfortunately for Howard, he was uninsured. Unable to afford the $200,000 cost of surgery in North Carolina but too well off for Medicaid, Howard didn't know what to do. His partner, Maggi Ann Grace tried negotiating with Durham Regional Hospital.She offered to pay the hospital the discounted rate the insurance company would pay. No dice, said the hospital CFO. Maggi's son had spent a summer in India after his first year of medical school, and he suggested the radical idea of having the surgery done in India. So eventually Maggi and Howard went to the Escorts Heart Institute in New Delhi where Howard underwent successful surgery for under $10,000.Maggi's new book about that experience is called State of the Heart: A Medical Tourist's True Story of Lifesaving Surgery in India. I spoke with Maggi about it this afternoon.

Maggi thanks for joining me today.

Maggi Ann Grace: Thank you, David.

David: Maggi, you accompanied Howard to India for his heart surgery three years ago this month. Can you tell me how it was that you ended up in that situation?

Maggi: Yes, it started with Howard's sudden diagnosis with mitral valve prolapse and regurgitation. We went to the doctor and they were alarmed that he didn't have health insurance. And so then I went to the hospital to try to talk to them about setting up a payment plan, and what it would cost, just so we could be prepared. And they were not prepared to talk with us about a reasonable price -- What an insurance company would pay for one of their clients. So we found out very quickly that the price would be inflated for Howard because he was a self-pay patient. And the amount was staggering, so we started researching alternatives. Everything from raising the funds, to having a party to raise the funds, then we got suggestions from everyone about where to go.And it was my son who said, well have you considered India? And that just opened this whole new world that we then followed and I researched very carefully, I thought, and that began feeling like the right choice.

David: I know that you're not the only one who's been in the situation of finding the need for yourself or a loved one that's going to have a very high financial cost and not having health insurance and perhaps going and speaking with the hospital administrators about it before hand. But most people don't end up going over to India. Do you have an impression of what happens to other people who are in a similar position and don't end up going to India?

Maggi: I do. I not only have an impression, but I was told by the CFO of the hospital that we went to here in North Carolina, I said to them certainly we can't be the first self- pay patients who are faced with this kind of life-threatening condition that requires surgery at such an astronomical price and don't have an extra $200,000 in their pocket. And he, the CFO said to me no, you're not the first people to be self-pay. You're the first people to come to talk about it ahead of time. And I said, well what do other people do? And they said they wait until they're in heart failure or their condition worsens to the degree that they'll come in an ambulance and then we must treat them in the emergency room. But the people who have some money, but not $200,000, the people like Howard who might not qualify for Medicaid, I imagine they end up in bankruptcy court.

David: You said that you had researched pretty carefully the India option before you went, and then you said you thought you'd done that. What did you learn when you got there that you should have researched or that came out differently than you expected before you went?

Maggi: Well, in the first chapter of my book I explain that when we were actually greeted at the airport to be escorted to the Escorts Hospital is when we found out we were the first Americans. And I don't know if that means the first Americans to go to Escorts Hospital, I'm not sure. And because of all the press that resulted from our visit and the attention from CNN and all the media over there I was sure we were the first Americans to do something --either come for heart surgery or come at all electively. I know there are other people who've had medical procedures done in India. That was the most startling thing to me, that we were the first Americans and I kept saying to myself, I should have found out in my research. But when I looked at the website and looked at the patient testimonials in the short time we had before we left for India I never looked at exactly where these people were from.That there were no Americans didn't come to the surface for me.

David: I'm often struck at how few --despite all the discussion about medical tourism-- how few people that are in your situation have actually made the trip to Asia to have treatment. Maybe they're around and I just haven't seen them, but I know that when I was in Singapore for example it's hard to find an American patient. Most are from Indonesia or Malaysia or places close by. Now knowing all that you know now having gone over to India, experienced the care there and had the follow up and wrote the book, what would you have done differently? And what are you advising people to do who come to you in situations similar to Howard's?

Maggi: Well, now there are lots of companies. Many of the founders have asked about our situation and what we've learned over there. The companies are set up to help people streamline the process that I went through, you know, email by email to try to connect and try to make that happen.What would I do differently if the companies weren't in place to be the liaison? If I had to do it over I would pick up the phone and call India instead of relying on email. I would just call; I could've probably done all the research I did in one day. And make the connection with Dr. Trehan in India if I had picked up the phone. But I had this impression, I think many people do, you look online, there's a website that says ask your cardiologist a question, here's Dr. Trehan's email. So you email and you email and you think you're going to get a response because we expect that in the US. We expect email to be the quickest form of communication. It's just not in India.

David: Now are there other countries that you've considered? It sounds like you heard of India from your son who had some personal experience there. But are there other countries that you would perhaps consider now that you've learned more about it and people have approached you?

Maggi: At the time we were considering Argentina because we had some friends who were trying hook us up with a surgeon there. And we certainly hear of people going to Mexico but that wasn't very attractive at the time for whatever reasons. Now I have heard great things said about Thailand, Singapore, places like that, Costa Rica for certain things. But because India just has captured my heart in so many ways and because I am familiar with the care there --not saying that it is better than in Bangkok by any means but that I am familiar with it-- that is where I would go, and I plan to go, even though I have health insurance. I plan to go if I have to have an elective procedure that can wait. I plan to go there because of the care and because of the cost, but not primarily the cost, which is where everybody starts.

David: You went back to India last year but not as a medical tourist. What was it like being there without having to have surgery or bringing somebody along for surgery?

Maggi: Yes, I did go as a tourist and it was my delight and my intention to go there without any medical problems in my baggage, so I went to southern India instead of New Delhi and found it to be as different as northern California is from Southern California. It was just a miraculous trip in such different ways from our trip to Delhi, and now I have the opportunity to go back again in October so I'm just going to get the longest-standing visa I can so that anytime I can get to India I'm going to go.

David: In the book you're quite positive on the care that Howard received and it sounds like looking back on it you think about India in a very positive way. In the book itself, there was some conflict and miscommunication with the staff that sounded actually somewhat similar to what you'd encounter in the U.S. Then in particular after Howard was discharged it didn't seem like the anti-coagulation therapy that he was on was being monitored properly or maybe at all. Can you just describe a little bit what happened there and any lessons learned?

Maggi: Yes, I think communication is the key as always. We can trace lots of conflict and problems to communication I think. It's difficult for me to tell at this point what I should take on as my fault, if there's fault to be had here, and what just wasn't being communicated. There is a language barrier with the sisters, the nursing staff, not so much with the doctors, but when you're counting on in this moment understanding something, you ask whoever's in front of you, and I was asking nurses. I was asking them to explain, when they did find out that Howard's PT rate was so not the right numbers.They said they were going to keep him for two extra days, we just got the impression that it was because it was a Sunday, or something. You know, we just misunderstood what the reason was, and part of that is they didn't tell us, part of that is I didn't hear it, or part of that is I didn't ask the right questions, and they just thought we would comply and stay, and Howard was extremely put off by our plans to leave and then being told we had to stay, but we just didn't understand that he had had this mini-stroke. So that was one problem and, again, it started with the same communication problem. If we had communicated quickly the way we expect to communicate here, we wouldn't have even taken as long as we did to get to India. So communication began as an issue, it was a continued issue when we were trying to be discharged from the hospital and being told we couldn't leave, and then part of that whole blood thinner issue was the cardiologist said, Dr. Kasliwal said, that we needed to change...I remember him telling his staff that were surrounding Howard, getting ready to be discharged, that we needed to change the Warf, which is what they called Warfarin, to Coumadin because it would be more available in the U.S.So I think we had the right prescriptions written, we got what they had over there, and he was being monitored over the course of that week that we were in the hotel, maybe modified, I'm not sure what was being changed over there, but I'll tell you the biggest drop in communication, and I will take responsibility for this, is that we were told to contact Howard's cardiologist when we returned to the States. His cardiologist told us to be in touch as soon as we got back, and what got misinterpreted or lost on me and certainly on Howard, was "as soon as" or immediately...

David: OK.

Maggi: I didn't get the urgency. And so we were in town, just trying to re-acclimate to being here, and with all that's required of seeing people and seeing our families again, and I just didn't tap into the urgency of getting him to see the cardiologist. So you take the last day in Delhi, the plane ride over, and the blood thinner, the PT time can be altered by everything you eat, not to mention everything else in your life, so who knows, when the diet changed and all that, I mean, Howard was in trouble when we went to see the cardiologist finally...

David: Right.

Maggi: And I had just called to make an appointment. So should I have called her from Delhi and made an appointment, you know, right after we got off the airplane -- maybe that's what I should have done. They didn't tell me to do that or I didn't hear that urgency and I didn't take it on because I didn't understand it. So that was a huge problem, and, as you know, Howard ended up in the hospital here for two days for more Heparin...

David: Yeah.

Maggi: And then he got stabilized, so it was taken care of, but it could have been drastic, it could have been terrible. He could have had another stroke here without his blood thin enough, and, you know, that would have been just disastrous, after all that we'd been through, after all he'd been through.

David: Now you mention in the book that you think that people were going to be asking you about how much the two days with the Heparin in the U.S. was compared to the whole trip to India. So I have to ask, what was the comparison of the U.S. cost versus the whole surgery and trip to India?

Maggi: Well, I wish I knew the answer because the last time we addressed this issue, Durham Regional was negotiating this price, and what happened coming back was when we got into the hospital was, Dr. Henke who is Dr. Engel in the book tried very hard when she put Howard, -- she knew how devastating it was for him to get put in the hospital when she saw him again after the return from India, and she said I'm going to do everything in my power to make this just a Heparin drip stay and not a procedure, not anything that's going to cost like what a surgery would cost, and I think she coded him in as a special research patient, or I don't know what she did, but she kept the cost down that way, and then I think because of all the publicity the hospital bent over backwards to keep the cost down. So if I can put this in some relation to something else, a friend told us right when we got back from India that he had been put in the same hospital in Durham overnight for a drip of antibiotics because he had an abscessed tooth. So he was in overnight because the only way to get the antibiotics working fast enough was through the I.V. He got out the next morning and his bill was $7500, which was more than our entire three-week stay...

David: Right.

Maggi: And two surgeries in India. Howard's bill for the Heparin drip two-day stay when we got back was nothing like that. As I recall it was in the couple thousand range. But that's because everyone was bending over backwards. I know that. And they were bending over backwards in India as well...

David: Yeah.

Maggi: I'm not begrudging that, but they were bending over backwards to keep the cost down because we were in the limelight in terms of the media.

David: When Howard was in India he was operated on by Dr. Naresh Trehan as you've been mentioning, and he's somebody that may not be known in the U.S., but in India he's pretty famous, and I understand that the hospital, Escorts Heart Institute, where you were has been sold, I think, since you were there, to Fortis Health Care, and there's some conflict that's been going on between Fortis and Dr. Trehan, and I think even the former Prime Minister of India may have gotten involved. Can you tell me a little bit about that?

Maggi: Well, I wish I knew a lot more about that. I have been in touch with some of the reporters from India who became our friends there and heard a few months ago that there was some conflict and he was actually escorted out of Escorts Hospital...

David: Yeah.

Maggi: This was kind of interesting, so I did some research online and tried to read the articles about that. My best guess is that it came down to money. Dr. Trehan is one of the most generous people I know. His bottom line cannot be money or he would have not left twenty-two years at Columbia making a six or seven digit salary to go back to India to help his people. I am sure, I mean I've actually been insured by Fortis before, I'm sure that money enters into this equation. Dr. Trehan wanted to take care, from what I've read, of the patients that were in there and Fortis didn't want him to, so they wanted him out of there, and I've seen this happen in corporate America so many times, that once they decide you're out, you're out. I mean you get escorted out to the parking lot that day, and that's just not patient care focused at all.

David: How's Howard doing these days?

Maggi: Howard is in exceptional health and fortunately the mechanical problem in his heart was fixed successfully and now he has no heart damage at all so he doesn't have any activities compromised. He's building houses full time, my son is working for him full time, and he wrote to me when I was in D.C. a couple of weeks ago and said he had ridden his bike forty miles that day...

David: Wow.

Maggi: And it just about killed him, and I reminded him that we're trying to avoid things that almost kill him. But he is riding his bike and he's swimming and he's just doing everything that he did before his heart surgery, and he doesn't even have to be on medication. So as far as I can tell his life is back to normal.

David: And what's the most gratifying thing that's come out as a result of your websites and writing the book?

Maggi: I think the most gratifying thing is that I have hope that we're going to change something in my lifetime. There are so many things that we have issues with that we think, well, that's not going to happen in my lifetime, but hopefully we can leave a legacy that our children can change this or whatever, but in this case I think the awareness level is so heightened, and from the readings and talks that I've given, the audience seems really keen on doing something about this soon, and it's affecting so many people, and because it's not just affecting individuals who are self-employed, but it's also affecting employers who have to have insurance for their employees, that we're coming at this issue of health care for Americans from so many angles that I believe our candidates in the next election will have this top on their list.

David: You had a childhood friend that had the same kind of diagnosis as Howard and didn't end up going to India. What happened to that person?

Maggi: This was a friend who I went to school with and who was in my church back in Ohio who came to us during, -- he happened to move to North Carolina, so he came to us during Howard's diagnosis before India, while we were trying to decide, and then came to our thank-you party when we returned. And he told me that he had mitral valve disease, Howard's diagnosis, he just was told that it wasn't so severe. And I said, Don, if you ever want to go to India, I will go with you, and we'll get you the care that you need. And he said, Well, I don't think it's so bad. And what I heard just last year, last fall, was that he was being seen by a cardiologist here in town and that he couldn't afford to have all the tests. Like I said, the echo itself was two thousand or something like that, and my friend had just gotten a job and couldn't afford these tests, and the doctor, the cardiologist that he was seeing, said, Well, looks good, you're good to go, and let him go without having the tests, and two weeks later he just dropped over dead. If you're in heart failure you get treated, but he was walking around, he was getting his job, and he was fatigued and had some issues that were keeping him from getting a job, which was keeping him from having health insurance, which was preventing him from being able to pay for this. It's the whole circle. But he walked out of a hospital two weeks before he died, and the cardiologist said, you're good to go. And he wasn't good to go. He needed surgery, and he needed the test to prove that he needed the surgery, and he just is one of those people who fell through the cracks.

David: Maggi, as you've written the book and gained some fame and had your websites up, are there any big surprises or other sorts of interesting things that have happened as a result?

Maggi: One thing is about the audience and the people who are interested in this topic. I've been amazed at the number of seniors. Often they're relying on pensions, they are having increased medical needs, but that population is not who I thought was going to be so interested in this topic.The other thing that really in a sort of bittersweet way has surprised me is the number of people who are jumping on this bandwagon to create companies to meet all the needs, which again is a good thing. If we're going to go travel to Bangkok or to New Delhi, we need to have things in place that are going to take care of all the needs that we'd have if we stayed home.But I'm just surprised, you know, one of the former patients that I helped get to India started his own company, and companies are springing up all over. Then I just got an email last week from someone telling me, just informing me, that they had started a malpractice insurance company for people, for medical tourists.

And I just am amazed at the kind of niche marketing that's going on.

David: I've been speaking today with Maggi Ann Grace, author of State Of the Heart, A Medical Tourist's True Story of Lifesaving Surgery in India. Maggi, thanks for your time today.

Maggi: Thank you, David.