An interview with Maggi Ann Grace, author of State of the Heart

New Harbinger Publications: How soon after you began seeing Howard was his heart condition diagnosed?
Maggi Ann Grace: I met Howard in September 2003.  Howard’s heart condition was diagnosed in July of 2004, about ten months later. We flew to India in September, one year after we met.

NHP: What exactly was his condition? What was his prognosis?
MAG: “A flailing mitral valve with prolapse and severe mitral regurgitation.”   
His new cardiologist described the heart valves as two halves of a parachute that must fill, then collapse, and then fill again, held taught by strings. And Howard’s “anchor strings” had snapped…suddenly, and no one knew why. Often people with mitral valve prolapse (bulging) or stenosis (blockage) can take medication and be watched by their cardiologist for many years. But Howard’s case was so severe, that he would require surgery as soon as possible, to either repair or replace the mitral valve. His cardiologist told us: “Howard cannot wait a year for his surgery.” We read in the medical notes we hand carried to India: “We are amazed that this patient is not already in heart failure.”

NHP: What efforts did you take to get Howard the surgery he needed here in the States?
MAG: I made an appointment with the CFO of Durham Regional Hospital asking for an estimate of all costs, and to set up a payment plan. I asked them to please accept the full amount that any insurance company would pay for this surgery.  The CFO said, “We have no way to do that.”

 “$100,000 for hospital alone five to seven days If there are no complications. Half up front, the rest on a payment plan. And the surgeon, cardiologist, anesthesiologist, radiologist, pathologist, the valve itself, and any medications prescribed will all be billed separately… you should probably double that.”

I applied for insurance for Howard, and got an exorbitant quote from BCBS, and the promise to disallow any claims pertaining to his heart for a year. His cardiologist said his heart would not last a year.

We heard of a doctor in Texas who’d trained at both the Cleveland Clinic and the Mayo Clinic, and has one of the lowest mortality rates in Texas. He had worked out some straight-cash deals with a heart hospital in Texas to attract wealthy patients from Mexico and South America away from Houston. I contacted him and learned it was now $40,000.

Howard heard that a robot had been invented to do mitral valve surgery, and the only doctor using it was at East Carolina University in North Carolina, only a two-hour car ride from home. $70,000 was the cost.  We had friends urging us to go to Argentina, Mexico, south Chicago…follow up care seemed a big question.

Urged by doctor friends to “negotiate” with hospitals, we contacted other nearby hospitals. Again, they wanted to see his tax returns, financial statements, pay stubs; to head down the path of Howard qualifying for Medicaid. He would not qualify for assistance, but $200,000 was still a staggering estimate. I think it would be for many middle class Americans.

NHP: What roadblocks did you encounter?
MAG: Roadblocks to getting the surgery? Timely communication was the main delay in our choosing where to get Howard’s heart surgery (we are so accustomed to immediate responses to emails, it was frustrating to have to wait for information from the Indian hospitals); and, initially, the support of our friends and family (many thought we should go anywhere but India).

NHP: How did the idea of medical tourism first come about?
MAG: My older son, Bryan, sent an e-mail one afternoon suggesting we could consider having it done in India. He had traveled to India the summer after his first year of medical school at Stanford. His anatomy professor, Dr. Srivastava, had set him up with a three-week rotation at one of the public hospitals in New Delhi. Bryan had just returned to California the week we got the “staggering figure” from the Durham hospital.

NHP: Where did you turn for information on getting Howard’s surgery done overseas?
MAG: I went straight to the Internet. I read about people from England and other countries who had traveled to New Delhi to have the surgery they would have waited years to have at home. It didn’t take much time to figure out that the surgery Howard needed could be done at a fraction of the cost of the same operation performed in the States. I read patients’ testimonials about how the hospital had treated them like guests and had taken care of everything from travel to recovery after surgery. I sent an e-mail asking for more information.

All of our information had come through web sites before I called a colleague from a biotech company where I used to work. She is Indian, but I didn’t know where in India she was from. She mentioned an article she’d read recently in the Times of India about patients coming from all over the world to hospitals in India.

My son Bryan’s roommate at Stanford was from Hyderabad in southern India, and he was incredibly helpful. His family in India wrote to offer their home to us if we came to their city for the surgery.

Bryan sent an e-mail to Dr. Srivastava, his professor, who divided his time between Stanford and India and who had firsthand knowledge of health care in both places. He introduced us, described Howard’s predicament, and asked for Dr. Srivastava’s advice. “What would you decide if it were your own family?” Bryan asked him. Dr. Srivastava wrote to Bryan from India, “If I had a family member in the US who was in a similar position, I would not hesitate to recommend them to come to India for treatment. Indeed, my family and I have a fair share of our health care and treatment here in India. Dr. Naresh Trehan, the founder of Escorts, is of the highest caliber, trained in New York City.”

It felt right. It felt like one of those irrational, unexplainable nods of agreement I sometimes feel in my gut. Still, I Googled every way I could think of to investigate Escorts and Dr. Naresh Trehan while we waited for a response from him. I emailed Dr. Trehan myself, but still we heard nothing. Then, one night, Dr. Trehan called. He assured me that his assistant would meet us at the airport, and that they would do all the tests themselves. The rest is the book.

NHP: Why India?
MAG: We were intrigued with the idea, although we knew very little about India aside from the stereotypes: poverty, cobras, the land of explorers who’d traveled there for spices and silk.
We were both drawn to the option of flying to India, but waited until we had some personal confirmation from Howard’s cardiologist and some personal communication with Dr. Trehan.

NHP: What was the total cost for Howard’s surgery at the hospital in New Dehli?
MAG: Escorts’ bill was $6,700. With our hotel for a week after discharge, including plane tickets, we were just at about $10,000. Dr. Trehan had suggested I plan on the hospital bill (which would include all medical charges related to Howard’s surgery) to be under $10,000 “just to be safe.”

NHP: How long did the process of getting the surgery take from the time you selected the hospital?
MAG: About three to four weeks. It took that long first due to slow communication with Dr. Trehan himself, then Howard’s procrastinating, my getting inoculations, and having to get visas.

NHP: How would describe the standard of care in the hospital in New Dehli? How did it compare to hospitals in the U.S.?
MAG: The care was superior, the facilities pristine and spacious. But we were in a private hospital, not a public hospital—there's a big difference in India. Howard was “on the schedule” for all the pre-surgical tests here in the US for weeks after we flew to India. He had all of those tests done the afternoon after we landed in Delhi. We never waited for any care, test, or treatment. Never once did a sister (nurse) appear to be overworked, irritated, unwilling or unable to care for Howard, and usually sisters came in pairs. I believe we have exceptional caregivers here in the US But they are working in an overloaded, congested system dictated by insurance companies and threats of malpractice lawsuits, so that their performance is often compromised.

NHP: In June of 2006 you and Howard traveled to Washington, DC, to testify before the US senate subcommittee on aging about their experience in India and the state of healthcare in the US —what was the message that you wanted to give the senators and to the American public?
MAG: The question the Senate Subcommittee posed to me was: Do I think globalization of healthcare is the answer to our healthcare crisis? My message, if not loud, was hopefully clear. No. I am grateful to have the option of receiving medical care outside the United States. I plan to consider that option for myself, even though I have expensive health insurance of my own.  But going overseas, away from our primary care physicians, away from our homes and families and friends is not the answer for more Americans than it possibly could be the answer for. My eighty-something year old parents, people with acute injuries, patients whose medical health will deteriorate over a long international flight, people in a lot of pain, those who are highly susceptible to communicable diseases—these people need to have health care available close to home, immediately, and affordably. The trade off of the lower cost of medical care is that you are half a globe away from any support system, for both the patient and the caretaker/companion. Any time you imagine this as not so big a deal, count the number of phone calls you made the last time a relative or friend was hospitalized. Now subtract all of them, and imagine yourself with the stress of someone you love in surgery without the luxury of someone taking a turn, or sitting with you in the waiting room, or later, of getting in your car to go home to feed the dog or see your children, let alone sleep in your own bed—and then tell me it is not a big deal.

NHP: The subject of healthcare in the US has been much talked about lately. With the presidential election coming up in 2008, what would you like to propose to the candidates about improving US healthcare?
MAG: I would like to see a complete shaking of our system, a “cleaning house” and starting over. I would suggest our candidates start by asking what a healthy nation who took care of their people would look like.

We offer other services because we, as a nation, have determined that we value them for all Americans: services like education, fire and police protection, free meals, library books. Offering a basic standard of health care, beginning with preventative care, does not mean that individuals could not have additional insurance or pay for additional choices, much in the same way you can get a free meal if you need it, or you can pay for an extravagant, elaborate meal in a fancy restaurant if you have the means and desire to do so.

I would suggest destroying the link between health care and employment. Take back the medical decision-making from insurance companies and return it to medical professionals. Examine the pharmaceutical, insurance, and for-profit hospital industries and refocus. I would suggest they ask the question, what mark-up, what margin of profit, is reasonable for medical devices, etc. What are reasonable fees for medical procedures, reasonable salaries for medical professionals?

Our candidates are better equipped to suggest changes than I am, but I would suggest that, instead of “outsourcing” our medical care, we look at those countries who are beginning to attract patients as models of care. Let’s look at the top systems with regard to infection and mortality rates, and lowest cost, and find out how they do it. The US is not number one. We have a lot to learn, and that process needs to begin with our candidates who can create a system of better care for all Americans.

NHP: How is Howard’s health now? 
MAG: Howard is seemingly in perfect health. He works full time building homes and leads a full life.

NHP: State of the Heartis also a tale of your finding love in the second half of your life — what affect did this experience have on your relationship with Howard?
MAG: This unexpected experience fast-forwarded the process of falling in love with a premature intimacy you would never expect after one year of dating. Howard and I found ourselves engaged in a magnitude of intimacy that I only expected in the later years of my life, after being together for many, many years.  Howard’s diagnosis, our journey to India, and Howard’s surgery and recovery came only one year after we met. It did not make me love him more but instead, added a depth to my commitment to and love for him—not because of the difficulties and extraordinary circumstances, but in spite of them. I learned I could love him even when it was ugly—when Howard’s body was not functioning properly, when he was bruised and justifiably depressed, when sputum and fatigue dominated our lives—I could still love him. I wasn’t repulsed or overwhelmed. I did not shy away, nor did my love for him diminish when he didn’t appreciate me. I learned how to look deeper. It has shown me the way we must love ourselves: forgiving our bad choices and misbehavior, recognizing our shortcomings are part of who we are. The experience of caring for Howard taught me a lot about my endurance level, about the love I am capable of, even when it is not reciprocated in tangible or obvious ways. It demonstrated how elastic love can be. Often we experience this with our children, loving them unconditionally no matter what they do. But it has been more a part of my reality that adult lovers leave troubled relationships when things get tough, that we all reach our limit of just what we can put up with. Perhaps Howard and I skipped some stages of knowing/learning each other. But I have seen and am trying to pay attention to the evidence that it is possible to love beyond those limits, to love more deeply.