Open Heart (44 page)

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.

It would be helpful and good, for example, to think—and to act—more in terms of care than of cure, and to think long-range rather than short-term; to think more in terms of early intervention and prevention—of encouraging and expanding public health measures, and investing in basic research—than in terms of end-of-life patch-up technologies; to think in terms of implementing policies that encourage continuity of care, and doctor-patient relationships that are ongoing, so that we thereby encourage the trust essential to so much of good medical care; to think of balancing the often excess amount of screenings and testings (much of it inspired by the fear of malpractice suits) with the need to give doctors and patients more time with each other.

And, for starters, Jerry and I agree, it would be helpful and good—essential—to enact some form of universal health care, because it is in
all
our interests that health care, like the services we receive from police departments and fire departments, be available to everyone and be distributed equitably.

But to do such things, of course, we need to have a coherent approach to health care, and to be able to set viable priorities—to have what, virtually alone among industrialized nations, we do not have: a national health-care policy. How impose regulations, or even sensible guidelines, on a system that is strictly voluntary? How, for example, plan in any practical, long-range way for the enormous and ever-increasing numbers of people who, suffering from chronic conditions, will need the kind of care that is already in unacceptably short supply?

“The demand for autonomy and choice, as well as for high-quality care,” Daniel Callahan explains, “represents values that can be scaled back considerably without loss in actual health.”
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It is important, therefore, he submits, “to decide what we are after most: better health, greater choice, or some wonderful combination of both.”

Callahan notes the obvious—that “we probably cannot have
both in equal degrees,” without, in the name of the public good, being willing “to exempt some health care policies and decisions from the market ideology.” Because “whether we like modifying our basic values or not, it seems impossible to achieve equity and efficiency without doing so.”

“The demand for priorities,” he points out, “arises when we try to live with both decent minimal care and limits to care. At that point we must decide what it is about health care that advances us most as a society and as individuals. We have bet that we could have it all. That bet is not paying off. There remains no reason, however, that we cannot have a great deal.”

Valuing freedom of choice over constraints, and individual freedom over government regulation in the specific ways Americans do, we seem a long way from knowing how and when, if ever, we will be able, if in inevitably imperfect ways, to set reasonable and effective national health-care policies.

The reasons are many and complex, the questions numerous, the answers various and debatable: Who will be empowered to deal with the difficult decisions that setting national health guidelines will entail? And who will empower, and watch over, those empowered? Who should get (enormously expensive) organ transplants or implanted defibrillators, for example, and who should pay for them, and how, and should there be age criteria, and how rigid or flexible should such policies be, and who will enact, monitor, and regulate them? Should we, as a nation, continue to invest heavily in so-called lifestyle technologies and in end-of-life technologies, or find ways, consistent with free enterprise (no small task) to redirect resources toward child and infant care, for example, or toward providing higher salaries and better training for health-care workers who tend to people with chronic diseases? Should we allow drug companies to advertise prescription drugs directly to consumers—and what about conflicts-of-interest between drug companies and doctors, insurance companies and hospitals? And just how, in the face of economic restraints, do we balance the claims of better health (for all? for some?) against the claims of individual choice, and are there practicable ways of arriving at good if imperfect combinations of
the two? (If your own child, spouse, or parent is seriously ill, don't
you
want to be able to obtain the very best care possible, and the costs—and fairness and equity for others in similar situations—be damned?) Do we have any obligation to curb the aggressive marketing practices of American tobacco companies abroad (for example, having pretty young women give out free cigarette samples) in a world where, according to the Centers for Disease Control and Prevention, tobacco will, within the next twenty years, cause more deaths in developing nations than AIDS, malaria, TB, automobile crashes, homicides, and suicides combined?
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And how provide and pay for antiretrovirals for all those infected with HIV, here or elsewhere, in a world where greed is often rampant and poverty itself, as Jerry insists, is a disease?