That experience with Teddy made it clear to me, as never before, that health care must be affordable and available for every mother or father who hears a sick child cry in the night and worries about the deductibles and copays if they go to the doctor. But that was just one medical crisis. My family, like every other, has faced many—at every stage of life. I think of my parents and the medical care they needed after their strokes. I think of my son Patrick, who suffered serious asthma as a child and sometimes had to be rushed to the hospital for treatment. (For this reason, we had no dogs in the house when Patrick was young.) I think of my daughter, Kara, diagnosed with lung cancer in 2002. Few doctors were willing to try an operation. One did—and after that surgery and arduous rounds of chemotherapy and radiation, she's alive and healthy today. My family has had the care it needed. Other families have not, simply because they could not afford it.

In 1964, I was flying with several companions to the Massachusetts Democratic Convention when our small plane crashed and burned short of the runway. My friend and colleague in the Senate, Birch Bayh, risked his life to pull me from the wreckage. Our pilot, Edwin Zimny, and my administrative assistant, Ed Moss, didn't survive. With crushed vertebrae, broken ribs, and a collapsed lung, I spent months in New England Baptist Hospital in Boston. To prevent paralysis, I was strapped into a special bed that immobilizes a patient between two canvas slings. Nurses would regularly turn me over so my lungs didn't fill with fluid. I knew the care was expensive, but I didn't have to worry about that. I needed the care and I got it. Now I face another medical challenge. Last year, I was diagnosed with a malignant brain tumor. Surgeons at Duke University Medical Center removed part of the tumor, and I had proton-beam radiation at Massachusetts General Hospital. I've undergone many rounds of chemotherapy and continue to receive treatment. Again, I have enjoyed the best medical care money (and a good insurance policy) can buy.

I was exposed to the most extraordinary groups of doctors and nurses at the Lahey Clinic. Dr. [Herbert] Adams, who was the head doctor up there—there may have been a day when he didn’t come in and see me, but I don’t remember it. This included Christmas Day, New Year’s Day, the whole time I was up there. The commitment and the dedication of the doctors and the nurses, and the support systems and the professionals, was just breathtaking. I think it probably led me to the very strong commitment that I’ve always had, politically, to strong support for nurses, for support personnel, because I always recognized their indispensable role. The doctors, yes, but the support personnel for their patience and their time. During the period when Teddy—Now we’re probably into ’74, so we’ll have to come back to how this intersected with the policy judgments and decisions. It was all within a few years of each other—the dramatic time that I had in the Dana-Farber Institute in Boston with my son Teddy. He had a treatment and we found out that he had this leg cancer that required the loss of his leg, and that’s a special circumstance that we can get into.

It might not sound like it, but the theme of this chapter is optimism. We are amid a modern health crisis. The good news is that our system can be fixed, and the crisis can end. Just 120 years ago, starvation, malnutrition, and early death were the norm. Tuberculosis and pneumonia were leading causes of death. Life expectancy in the United States was around age forty-seven. Back then, 30 percent of all U.S. deaths occurred in children under five years of age, compared to just 1.4 percent in 1999. If you transported someone living in those times to the present day, they’d be in utter shock as they tried to process society’s advancements. There is no

Nothing I'm enduring now can compare to hearing that my children were seriously ill. In 1973, when I was first fighting in the Senate for universal coverage, we learned that my 12-year-old son Teddy had bone cancer. He had to have his right leg amputated above the knee. Even then, the pathology report showed that some of the cancer cells were very aggressive. There were only a few long-shot options to stop it from spreading further. I decided his best chance for survival was a clinical trial involving massive doses of chemotherapy. Every three weeks, at Children's Hospital Boston, he had to lie still for six hours while the fluid dripped into his arm. I remember watching and praying for him, all the while knowing how sick he would be for days afterward. During those many hours at the hospital, I came to know other parents whose children had been stricken with the same deadly disease. We all hoped that our child's life would be saved by this experimental treatment. Because we were part of a clinical trial, none of us paid for it. Then the trial was declared a success and terminated before some patients had completed their treatments. That meant families had to have insurance to cover the rest or pay for them out of pocket. Our family had the necessary resources as well as excellent insurance coverage. But other heartbroken parents pleaded with the doctors: What chance does my child have if I can only afford half of the prescribed treatments? Or two thirds? I've sold everything. I've mortgaged as much as possible. No parent should suffer that torment. Not in this country. Not in the richest country in the world.

IN THE PAST, when dying was typically a more precipitous process, we did not have to think about a question like this. Though some diseases and conditions had a drawn-out natural history — tuberculosis is the classic example — without the intervention of modern medicine, with its scans to diagnose problems early and its treatments to extend life, the interval between recognizing that you had a life-threatening ailment and dying was commonly a matter of days or weeks. Consider how our presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes and died within two days. Rutherford Hayes had a heart attack and died three days later. Others did have a longer course: James Monroe and Andrew Jackson died from progressive and far longer-lasting (and highly dreaded) tubercular consumption. Ulysses Grant’s oral cancer took a year to kill him. But, as end-of-life researcher Joanne Lynn has observed, people generally experienced life-threatening illness the way they experienced bad weather — as something that struck with little warning. And you either got through it or you didn’t.

This was a very powerful presentation, in terms of starkness, about health and health insurance and coverage, and basically the moral issue presented here. We were all in the same circumstance. This is a very rare disease that could have happened to anybody. It happened to a United States Senator; it happened to children of working families. There was nothing that they could do about it, and they were being put through this kind of system. This is about as stark as you can get, in terms of the compelling aspects of this issue. A secondary issue that came up that’s related to the public policy is family and medical leave. I’d have to leave the Senate on Friday, and I could go and tell Mike Mansfield that I wasn’t going to be there. Just in terms of the votes, I wasn’t going to be there. It wasn’t a question about me not—I should be with my son and I was going to be with him, but I wasn’t going to lose my job because I was leaving, and I was getting paid for it while I was gone. I was getting paid leave on this.

Part of the challenge we have is that part of that is actually government property, which was for ensuring that there are health facilities nearby for the president to be able to be looked after

There are more people now, more children, going without health care ... A medical team surveying twenty-five hundred poor children in the District found that eight out of ten had untreated medical or dental problems. The infant mortality rate in the District, already the highest in the nation and higher than that of many Third World nations, actually rose ... and prenatal care was considered an important causative factor. ~Lenore Horowitz, quoted by Jimmy Carter

My childhood experience and the time I spent in hospitals as a kid has helped me not only understand a lot of the roadblocks in life, but overcome come them.

I think it's very significant to point out that several Presidents and several different Congresses, that many private contributors have been involved in the evolution of this tremendous new health care center. I'm proud of it. It has been a subject of some criticism because of its cost. But I think we have to remember that this is the center of our government, and that what does occur here in 1977 and in the year 2000 can very well set a standard of care and love for children that will permeate the consciousness of doctors and nurses and parents, teachers and social workers throughout our country and, perhaps, even throughout the world. I grew up in a home in a rural area of Georgia, but my mother was a registered nurse. And I and the other children in that country community had good health care, not just from her but because there was a heavy emphasis on the prevention of disease, on inoculations, and on a constant relationship with a large number of medical doctors who lived there then.

For the next generation, no one ventured to tread where T.R. and Truman fell short. But in the early 1960s, a new young president was determined to take a first step—to free the elderly from the threat of medical poverty. John Kennedy called Medicare "one of the most important measures I have advocated." He understood the pain of injury and illness: as a senator, he had almost died after surgery to repair a back injury sustained during World War II, an injury that would plague him all of his life. I was in college as he recuperated and learned to walk without crutches at my parents' winter home in Florida. I visited often, and we spent afternoons painting landscapes and seascapes. (It was a competition: at dinner after we finished, we would ask family members to decide whose painting was better.) I saw how the pain would periodically hit him as we were painting; he'd have to put down his brush for a while. And I saw, too, how hard he fought as president to pass Medicare. It was a battle he didn't have the opportunity to finish. But I was in the Senate to vote for the Medicare bill before Lyndon Johnson signed it into law—with Harry Truman at his side. In the Senate, I viewed Medicare as a great achievement, but only a beginning. In 1966, I visited the Columbia Point Neighborhood Health Center in Boston; it was a pilot project providing health services to low-income families in the two-floor office of an apartment building. I saw mothers in rocking chairs, tending their children in a warm and welcoming setting. They told me this was the first time they could get basic care without spending hours on public transportation and in hospital waiting rooms. I authored legislation, which passed a few months later, establishing the network of community health centers that are all around America today.

I spent six months in the hospital and five months in a Stryker frame—six months in all—when my back was broken, and I saw the dedication of the people. I knew it was costing a chunk of change for the insurance companies to cover my health insurance on it, but it didn’t present itself—the starkness, the compelling aspects—about the pocketbook. And that has never left me. That aspect of it I’ve been constantly exposed to in the time that I’ve been in the United States Senate, and I go back to it on many different occasions, on the different hearings or things that follow this. One very important set of hearings that I had in the Senate were the hearings in the—We’re getting ahead a little bit but it’s probably worthwhile pointing out because it’s close to this subject matter. In ’78, when we took the committee across the country, we tried to match up, in the hearing, the panel that we’d have. We’d have one panel and we’d have probably ten witnesses, but we’d group them so that there were five subject matters. We would have the way that the United States covered the particular illness, and the way the Canadians covered it, just to present to the American people the difference, you know, how the systems were in terms of real life circumstances. We’d have what were common experiences in the particular areas that families would be affected.

Life expectancy has increased primarily because of sanitation practices and infectious disease mitigation measures; because of emergency surgery techniques for acute and life-threatening conditions, like an inflamed appendix or trauma; and because of antibiotics to reverse life-threatening infections. In short, almost every “health miracle” we can point to is a cure for an acute issue (i.e., a problem that would kill you imminently if left unresolved). Economically, acute conditions aren’t great in our modern system, because the patient is quickly cured and no longer a customer. Starting in the 1960s, the medical system has taken the trust engendered by these acute innovations and used it to ask patients not to question its authority on chronic diseases (which can last a lifetime and thus are more profitable).