At the same time that Gibbon was attempting to operate on human beings while using his heart-lung machine, other surgeons, intrigued by studies of hibernating animals reported on by a Canadian surgeon named Wilfred Bigelow, were experimenting with a different method of making heart surgery possible: cooling the heart to reduce the body’s need for oxygen, thereby allowing surgeons more time for their work.
Within a decade of Gibbon’s failures, improvements in Gibbon’s machine brought about, for example, by the invention of plastic and the substitution of plastic tubing for glass tubing, combined with techniques for cooling the body, for chemical cardiac arrest, and for ventilating the lungs, made Gibbon’s dream of doing the work of the heart and lungs outside the body—and what we know as modern cardiac surgery—a reality.
16
The Prepared Heart
LATE IN THE AFTERNOON of December 26, 2001, my son Eli and I meet at Grand Central Station and take a train north to New Haven in order to spend an evening with Jerry and his family. Jerry, who has just returned from a four-month stay in South Africa, picks us up at the New Haven station.
My journal entry the next morning begins:
December 27, 2001
wonderful reunion with Jerry Friedland! He looks marvelous, loves to hug—what an earth mother of a guy! sweeping wavy silver hair, beard, gorgeous smile—so happy to see me and Eli, and talks almost non-stop re his time in South Africa. Home for 10 days, and figures he has, still, 20% retention of the experience, hard to return, esp to the stuff at Yale—hates the administrative stuff, and (he sez) is not good at it. but the South Africa experience: transformative. (Phil to me, earlier in day: this is what he will do for the last third of his life.)
In the car, Jerry talks about how sophisticated and “Western” much of South Africa is, and he reminds us that the first heart transplant was performed there by Christiaan Barnard (who was Dr. Lillehai’s surgical assistant at the University of Minneapolis Medical School in the late 1950s). Still, most blacks are poor, most whites are rich, and South Africa also has the greatest gaps he has ever seen between haves and have-nots. “If you could make New York City ninety percent Harlem, and ten percent Upper East Side,” he says, “you would have the picture.”
Violence in South Africa is rampant; a recent incarnation involves the widespread raping of young girls, often nine and ten years old, largely a result, Jerry explains, of the myth that having sexual relations with a virgin will lend one immunity from AIDS. Most white people have taken to hiring their own private security forces, so that even the police force in Durban, where Jerry and Gail were living (Gail stayed for two of the four months), employed a security firm to protect them.
Jerry’s daughters, Elisabeth (recently engaged to be married) and Sarah (on semester break from a study-abroad program in Cuba), are at home, and in addition to me and Eli, there are five other guests—Brigette and her four children, ages three to ten. Brigette, Jerry and Gail’s babysitter when they lived in Boston, now lives with her husband and children in Brooklyn, a few blocks from Erasmus. “Does the world go round?” Jerry asks.
Dinner is festive—lots of good food, good wine, good talk, and laughter—and during dinner Jerry is gently ebullient and glowingly optimistic—happier and more energized than he has been in years. He talks with enthusiasm about the projects he has begun in South Africa (“I am a guest there,” he says, “and I want to lend my expertise. It is their country, their AIDS problem, and my hope is to be a catalyst—to be able to help them help themselves”), and says he continues to be guided by the saying he took to heart during his previous visit—that the best time to plant a tree is twenty years ago, but that the second best time to plant a tree is now.
The rates of infection are staggering, he tells us, but what he also became aware of soon after his arrival was that a very high percentage of the nursing and hospital staffs are themselves infected, and so he has been working to develop a program in which the first people to be treated when antiretrovirals become available will be hospital staff members. Because the government refuses to acknowledge HIV as the cause of AIDS, and will not pay for antiretrovirals, the program will have to be administered through the private sector, but Jerry has already convinced one hospital to start such a program. He is confident it will do well—“the antiretrovirals work!” he exclaims—and his hope is that success in this hospital will encourage others to initiate similar programs.
“It’s estimated that 25% of nursing students and 10–15% of medical students are HIV infected. Can you imagine?” he had written me in early October. “But no encouragement for testing and no antiretrovirals.”
In that same letter he wrote about another project he hoped to initiate: integrating HIV and TB prevention and treatment. “The HIV infection rate is 50% among hospital admissions,” he wrote.
There’s a 25% in-hospital mortality rate and TB is the most common admitting diagnosis and cause of death among those with HIV. There’s minimal connection between the TB programs and the rest of health care and the need to integrate HIV and TB treatment and prevention is so clear, but not done. My TB project to attempt to do this is gathering momentum and hopefully will get off the ground before I leave. I have some colleagues interested in working with me on it and there is enthusiasm for the project but the wheels grind slowly.
I ask about the HIV/TB project and he says that it too is off the ground, and going well. In addition, believing that the primary cause of HIV infection is unsafe sex (a subject not talked about openly), and that the cause of unsafe sex is usually alcohol or drugs (as happens everywhere else, people get high and don’t take precautions), he has initiated several programs in education and prevention. He has been flying to various parts of the KwaZuluNatal province with the Red Cross and other doctors to get these programs started and, also a first for the province, to give seminars on HIV to local health professionals.
“I talk about the prevention and management of opportunistic infections, the construction of multidisciplinary comprehensive programs, and antiretrovirals,” he explained in another letter, “with the hope and expectation that at some time in the not too distant future, they will have them available.”
The overall situation, however, remains grim.
“It’s 7 AM, and Gail and I are home this morning of Yom Kippur,” he wrote two weeks after his arrival. “My work is going too slowly and I am becoming impatient—but will stay focused and do the best I can. I think things are now getting on track. New figures here estimate that over 4.7 million South Africans are now infected (total population 43 million)—the equivalent of at least 40 million Americans infected in the USA. Most will die.”
Nevertheless, he talks enthusiastically about the possibility of progress in the new South Africa, and uses the same words now that he used when writing to me. “There is,” he says, “both sadness and amazing hopefulness here.”
“The thrill of defeating apartheid has passed and the huge and mundane and seemingly intractable problems left in its wake now must be dealt with—” he wrote on Yom Kippur—
residual economic inequalities that make the US look like a socialist utopia, racial and religious divides, the boundaries of which are sometimes crystal clear and sometimes so subtle that we need to have them pointed out and translated to us, a fearful sense of danger—violent crime against property and person so that much of life goes on beneath walls and behind fences (how can there be safety with such inequalities?). And now—AIDS. Yet, there is a determination as well to try to make this very diverse and disparate country whole.
Given the scale of the problems, he says, one cannot think globally. For his part, he hopes to return to South Africa soon (in early January, he will fly there for a week), and he plans to spend at least three months of every year there. “It’s really simple, Neugie,” he says quietly. “I could not just watch. I had to go there. I had to do something—to contribute.”
After dinner, and after we have cleaned up the dining roo
m and kitchen, Jerry and I sit in the living room, just the two of us, and Jerry says that if he remembers correctly, this is the first time Eli has stayed over since I was operated on three years ago.
I say that Eli mentioned the same thing during our train ride. We talk about Eli and Sarah, who are good friends, and who, from the time they were young children, clearly adored each other, and we joke, as we have before, about how, were we living in a shtetl in the Old Country, we would already have had them promised to each other. We talk about Jerry’s sister Rita, afflicted with Alzheimer’s disease, who continues to deteriorate, and about my brother Robert, who continues to make gains.
Robert has now been out of the state mental hospital for nearly two and a half years—the longest stretch since his first hospitalization forty years ago. He has a life, I say, and he is not locked up: he gets around the city on his own, he goes out of town on excursions, he attends classes (horticulture, photography, poetry), he works part-time, he has friends, and we see each other regularly.
Jerry asks how the book is coming along, and I say that it appears to be in its final descent, and that what I’ve been learning these past several years about my friends, and about medicine, has been both inspiring and sobering.
Learning more about Jerry’s work in Boston, the Bronx, New Haven, and now in South Africa, for example, has brought home something we knew before, but with more urgency—that the great problem in health care, as he contends, is access to health care, and that the first priority is finding ways to make access available to all. The gap in access to basic and competent care between the haves and have-nots remains shamefully wide, even in our own nation, while in the world beyond the United States, the availability and accessibility of even minimally competent medical care are often absent.
Jerry says he does not want to diminish the horror of what happened on 9/11 (in the weeks following the World Trade Center tragedy he wrote me that he and Gail almost returned, their grief and concern were so great)—still, given his work, it is hard not to contrast the response to the deaths of some three thousand people in New York with the response to the millions infected and dying from AIDS around the world. We know that in South Africa alone, five to seven million people will die within the next decade—and that an estimated twenty-five million people in sub-Saharan Africa are infected with HIV, about three million of whom will die annually. We have the means to treat and save most of these people, yet the will to do so is frail and lacking in the extreme. (“I’ve been musing about how we have such difficulty responding to slow crises,” Jerry wrote two weeks after 9/11, “and so little to sudden catastrophes. Do you think it’s in our genes?”)
We know how to cure a case of TB for fifteen dollars, yet we also know that many poor countries cannot afford even that amount for people with TB.* We know how to administer childhood vaccines, a blessedly inexpensive measure (twenty-six cents for a vaccination against measles) that would save three million lives a year, yet in many poor nations vaccine coverage is rapidly falling. In the world’s sixty poorest nations, the annual average health spending per year is thirteen dollars. In the United States the figure is $4,500.
Nearly eleven million children, according to the United Nations and the World Health Organization, die each year of preventable diseases, eight million of them babies, half of whom die in the first month of life. The causes of death are mainly diarrhea, malaria, measles, pneumonia, HIV/AIDS, and malnutrition, and the major cause of these diseases is poverty—lack of access to proper food, water, and sanitation.
The response of our own nation to the worldwide situation, we agree, has been disgraceful.* Of the twenty top industrialized nations, the United States devotes the smallest percentage of its gross national product toward efforts to control international epidemics. When the United Nations launched the Global Fund for AIDS, Tuberculosis, and Malaria, for example, and the secretary general proposed that between seven and ten billion dollars per year would be needed, our government promised only five hundred million dollars, this sum to be spread over three years, and, more niggardly still, to be taken largely from funds already designated for existing international health programs, including those for maternal and child health in developing countries.*
In addition, because most pharmaceutical research is done by drug companies, and because they have little incentive to produce medicines for people who cannot pay for them, the illnesses that constitute 90 percent of the burden of global disease get only 10 percent of research money.* Moreover, only a small percentage of pharmaceutical research money is spent on new medications for already existing, newly emerging, or reemerging diseases. The rarer a particular disease, that is, or the poorer the group that has it, the less chance—tough luck, right?—a drug company will develop medications to ameliorate its effects.
Mostly, I say, I’ve stopped arguing with people about the necessity and responsibility to do what we can, at home and abroad, for those without adequate medical care. One either believes one is, in this, one’s brother’s keeper—that we are obligated to see that as many people as possible receive at least minimally adequate health care—or one does not. How persuade another of this view if that person believes it is his or her inalienable right to be a free agent acting in a free market where whoever has enough money gets the best possible care, and the hell with everyone else?
As George J. Annas, chairman of the Health Law Department at the Boston University School of Public Health, has observed, because Americans place a high value on liberty and autonomy, especially as these inform market values, they feel they always have a choice, and “choice rhetoric has assumed such prominence in public discourse that merely labeling something as a ‘choice’ has a tendency to arrest conversation and prevent more than superficial analysis of the nature of the choice in question.”*
If you “couple the power of choice with the language of rights,” Annas adds, “the combined force is all but irresistible.” But “market language,” he continues, “with its emphasis on choice, tends to marginalize the sick and treat the practice of medicine as just another occupation, and medical care itself as just another commodity, like breakfast cereal.”
The notion that choice is always good and government interference with individual choice always bad is, Annas explains, “socially destructive and leads to a law of the jungle with those in power feeding off those for whom choice is always an illusion.”
Whatever our beliefs about “market values,” or about which system or systems of health care would be most humane and effective, what seems clear, as Annas states, is that “the use of choice as an incantation prevents us from looking more deeply into the causes of real problems, and therefore from trying to solve them.”
In his book Some Choice, he elaborates on this view of “choice” with reference to a wide range of medical, legal, and ethical issues, and, as with the common instance of teenage sex and pregnancy, he makes the obvious and salient point: “Choice and coercion language simply serves to stop discussion of the much deeper problem of teenage pregnancy and sex, instead of providing an opportunity for deeper reflection and social commitment to try to solve it.”*
But being generous toward others—or, at the least, when considering one’s own health needs, taking into account the basic needs of people and communities beyond our individual selves, families, and nation—while seeming a good thing in itself, would, with respect to health care—like honesty?—also seem to be the best policy. As the AIDS epidemic has shown, all of us are in danger if, in the global village we now inhabit, we deny the ways in which what happens to a human being in Durban—and to a microbe that infects someone there—has an effect on a human beings in New York or Northampton, Tokyo or Guilford.
The success of bypass surgery, for example—of all surgery—is dependent upon our ability to prevent infection. But what happens when antibiotics are so abused and overused that they bring into being a host of pathogens that prove antibiotic-resistant and make us more vulnerable to
infection? What happens when medical teams have the knowledge and technology to transplant kidneys, eyes, hands, livers, and hearts, but are prevented from doing so because the risks of lethal infection have once again, as in the nineteenth century (when surgeons did not wash their hands), become overwhelming?
Like my friends, I am prepared to put forth specific policy suggestions with respect to a wide range of issues and problems—cholesterol and PSA screening, international vaccination programs, AIDS education programs, the education of medical students, the integration in medical training of public health with clinical care, the regulation of antibiotic use, the financing of care for people with chronic, disabling illnesses, et cetera.
Still, I say to Jerry, our conversations and my researches persuade me that what is more important than new policies—though these are always welcome, and let’s not hesitate to advocate for programs we believe will make real and meaningful differences—are the attitudes and assumptions that underlie and drive policy, and that therefore determine how resources are allocated.
When it comes to attitudes and assumptions, however, much of what I’ve been learning hardly seems new, or news. What, through the years, Jerry and I have believed would be helpful and necessary with respect to the prevention, diagnosis, and treatment of people with AIDS and with mental illness would also seem to apply to most diseases, and to most matters medical.
Open Heart Page 33
