From Foresight, Vol. 6, No. 4
published 1999
Editor's Note: Congresswoman Louise Slaughter (New York), a noted national expert on health care issues and a native of Harlan, Kentucky, was originally slated to be the keynote speaker for the Kentucky Long-Term Policy Research Center’s November 18, 1999, conference, Unraveling the Health Care Dilemma. Final congressional negotiations on the budget prevented Congresswoman Slaughter from attending the conference. What follows is the text of the speech she planned to deliver.
Today's conference, “Unraveling the Health Care Dilemma,” is examining some of the most critical issues in our health care system today. Who are the uninsured? How should we expand access to care? What are the implications of an aging population? These are questions that not only Kentucky, but our entire nation, must come to grips with.
I am, of course, a federal legislator, and so I tend to look at these matters from a national perspective. At the same time, I have the privilege of representing Rochester, New York, in Congress—a community with a long tradition of innovation and cooperation in health care. Unfortunately, the past several years have witnessed a gradual breakdown in Rochester’s historic cooperation. It has been a painful experience for me to see... a little like watching a car accident happen in slow motion. At the same time, it has given me some valuable insights into what makes a health care system work, and what contributes to its problems.
In general, the past century has seen a parade of enormous public health success in our nation. Improvements in sanitation, the discovery of antibiotics, and the development of effective vaccines have transformed the health care landscape. My generation remembers all too clearly the scourge of infectious diseases. When we were children, surviving to adolescence could be a major challenge. Children ran a gauntlet of potentially fatal diseases against which doctors had few, if any, effective weapons—influenza, pneumonia, measles, and tuberculosis, to name just a few. For some of us, we relived those fears again with our children. I know that with my three daughters, I breathed a sigh of relief when each summer ended and they had again escaped contracting polio.
Antibiotics and vaccines helped to banish these terrifying diseases from our and our children’s lives, allowing the nation to become dramatically healthier in the space of scarcely a decade. Modern medicine had triumphed over disease, relegating these terrors to the medical history books.
Today, however, we may very well be victims of our own success. While child and maternal death rates have plummeted, we are left with a considerable burden of disease among our elderly population. Disorders like Alzheimer’s disease and Parkinson's disease, which were practically unknown when the average life span was only perhaps 50 years old, are now all too common and consume a considerable proportion of our health care dollars.
Among people under 65, our health care focus is rapidly shifting from treatment to prevention. Here, again, we face a number of challenges. Research is giving us new information about risk factors all the time, but is that information getting out to the public? If so, are people altering their lifestyles to reduce their risk? If not, why not? And will insurers balk at paying for the largely invisible successes of preventive health measures?
In addition to the growing burden of disease among the elderly and the issue of prevention in younger people, we must fight against complacency in the public health arena. Too many people think that we are “home free” and can now ignore the everyday public health issues like hand washing. Nothing could be further from the truth. Complacency has major public health consequences, as we see today in the rise of antimicrobial resistance, uneven vaccination rates, and the need to make serious investments in the public health infrastructure for reporting, testing, and dissemination of information.
And so we find ourselves today facing a very different set of challenges than those posed to our parents or grandparents’ generation. I would like to take this opportunity to sketch out what are, in my view, three critical challenges today.
In 1994, President and Mrs. Clinton embarked upon on an ambitious attempt to transform our health care system. It was, perhaps, too ambitious an effort. Instead of setting up pilot projects with different compositions throughout the nation, the Clintons insisted on a plan that would bring the entire nation into a largely untested system all at once. They failed. Humanity’s natural fear of the unknown combined with special interest spending power to doom the Clinton plan.
In my view, however, the most damaging part of the Clinton plan was not any provision they proposed, but the pall it has cast over any Congressional attempt to reform health care. Since 1994, Congress has managed to pass little more than nominal health legislation—laws banning discrimination based on pre-existing conditions, "drive through" deliveries, “drive though” mastectomies, and so on. Even the managed care reform bill passed recently by the House and Senate is modest at best—and hardly an attempt to address the fundamental problems in our health care system today.
In fact, some Members of Congress are not sure the government has any role in health care at all. There have been attempts to abolish the federal Department of Health and Human Services. We are constantly block granting programs and “devolving” programs to the states, along with any notion of accountability for the federal dollars that fund them.
One of the most interesting developments has been a new debate over whether employers have any role in providing health insurance. Some Members of Congress would like to remove employers from the equation altogether and compel families to purchase coverage directly from insurance companies—essentially pushing everyone into the individual market. Under their plan, the federal government would offer tax credits toward the purchase of health coverage. Other legislators would maintain the current insurance arrangement with employers but require the government to educate individuals more about insurance—especially the need for long-term care coverage. At the opposite end of the spectrum, we have the single-payer advocates, who favor a national health care system.
In the end, what we have experienced is an incremental approach to health care. Congress has legislated by body part and population group, covering procedures like mastectomies and groups like children. This approach has pleased almost no one and benefited only a select few. And we have still left the fundamental questions unanswered: What is the appropriate role of the government in our health care system? What is the most effective way for the government to carry out that role?
In Congress, there is nothing that even approaches a consensus. Until a serious, national dialogue on this issue resumes, we cannot expect to see any more than incremental legislation.
A second major challenge facing us in the next millennium will be dealing with the issues raised by genetics. Research on human genetics is racing along at breakneck speed; scientists will have a “rough draft” of the entire human genome by early next year, and expect to have a final draft by 2002. These advances have staggering implications.
With regard to medicine, genetics will transform the delivery of health care. It is a given that we will see major advances in detecting, diagnosing, treating and perhaps even curing genetic disorders. The ability to detect a disease gene may enable an individual to take steps to prevent the disorder from ever developing. Further, pharmaco-genomics will one day allow doctors to determine from your genetic makeup whether a particular medication will help you, harm you, or have no effect. We are indeed on the brink of a new era in medicine.
With regard to insurance, however, the prospects are not so bright. Insurers could easily use genetic profiling to screen out individuals who seem more likely to develop serious illnesses. Indeed, many Americans are not taking advantage of the genetic tests available today because of the fear of losing their health insurance. I have spoken to many men and women who want very badly to take a genetic test for breast cancer, or Parkinson’s disease, or colorectal cancer, but will not do so because they are afraid the results will get back to their insurers. The fear of genetic discrimination is forcing them to deny themselves valuable health information. Further, with our understanding of medical genetics in its infancy, genetic discrimination is the most rank form of discrimination because simply carrying a gene does not necessarily mean one will ever develop the associated disorder.
I find it unconscionable that Congress is allowing this situation to persist. In 1995, I introduced my first bill to ban genetic discrimination in health insurance. Today, HR 306, the Genetic Information Nondiscrimination in Health Insurance Act, has the support of 212 bipartisan cosponsors in the House of Representatives and dozens of health-related organizations. And yet, I cannot even persuade the House majority leadership to hold a hearing on this subject. The Congressional leadership is turning a blind eye, perhaps hoping that the matter will go away if they ignore it for long enough. Genetics will not go away, however. The issues are only going to become more complex and more widespread. It is imperative that we act before genetic discrimination becomes a common tool in the insurance industry.
For those of you who are interested, the Kentucky delegation has not supported my legislation. Not one of your six Representatives is currently a cosponsor of HR 306—something that makes me very sad indeed, as a daughter of Harlan County.
Genetics is going to pose a range of other ethical and governmental dilemmas as well. Should individuals with a disease gene be obliged to inform their blood relatives? Should their relatives have the option of refusing that information? Should private sector companies or individuals be able to patent genes? Should government or private health insurance companies pay for genetic counseling? What is the best way to use genetic information to improve public health? How can we best protect the privacy of these data?
These are all enormous questions that we will struggle to address in the coming decades. I can testify from personal experience that this will be an uphill battle.
Finally, one of the greatest challenges facing us lies in ensuring that our health care system gives all Americans quality care. The inequities faced by low-income and minority families are simply unacceptable in a nation that proudly declares, “all men are created equal.”
The statistics on minority health in this nation are appalling. The Centers for Disease Control and Prevention reports that, from 1980 to 1994, the number of diabetes cases rose 33 percent among blacks, three times the increase among whites. The gap in cases of infectious diseases rose at the same rate. In a range of diseases, especially cancer, minorities are more likely than whites to die of their disease, largely because it was detected too late, treatment was not aggressive enough, or the lack of insurance forced the individual to postpone care until it was too late.
Overall, low-income individuals and minorities tend to receive less, and worse, health care than whites. As a result, they are sicker and their life expectancy is six to seven years less than whites.
Medicaid provides a basic safety net for low-income individuals and families if they can navigate the maze of paperwork and bureaucracy associated with applying. The new state child health programs will help some children, but the evidence to date shows that tens of thousands of eligible children are not being enrolled. Even the explosive growth of managed care has had little impact on minority health.
Like any major health issue, there is no single, easy answer. Improving minority health will require concerted efforts from every level of government, the medical establishment, researchers, communities and even schools. The government must determine which programs work and commit to funding them. I am pleased that the Administration has dedicated substantial resources to this goal. At the end of October, the Agency for Health Care Policy and Research (AHCPR) announced that it plans to establish four “centers of excellence” over the next five years to identify tools and strategies to eliminate ethnic and racial disparities in the health care system. The research will focus on infant mortality, cancer screening and management, cardiovascular disease, diabetes mellitus, HIV and immunizations for children and adults, and also will focus on children and elderly who are chronically ill. The effort is part of the HHS Initiative on Eliminating Racial and Ethnic Disparities, a $400 million federal effort launched in February 1998.
The other players must step up to the plate as well—especially the states, through their Medicaid programs. We know what many of the factors are that keep low-income and minority Americans from receiving quality care: lack of access to care, a paucity of doctors in some neighborhoods, language barriers, no insurance coverage. These are all areas where we can and must make changes without delay.
There are other factors that will require more work. Racism. Mistrust of government and the medical establishment. Superstition and ineffective folk remedies. In these cases, we must reach out in a spirit of respect, compassion and cooperation to work through differences and enable all Americans to take advantage of world class health care. We cannot allow any of our brothers or sisters to be left behind.
As all of you know, there are major, long-term health care challenges facing our nation. It is my firm belief, however, that none of these obstacles is insurmountable. In 1950, 33,300 children were afflicted by polio; in 1997, 3 cases of polio were reported in the United States. In the 1960s, only 4 percent of children diagnosed with leukemia survived. Today, that number is over 80 percent.
Clearly, if we can defeat scourges like these, we can surmount the new challenges we face. This is not to say that the road will be easy. Issues like the government’s role in health care, genetics, and inequities in minority and low-income families’ health are complex, nuanced issues. But I have faith in American ingenuity, persistence, and compassion—we shall indeed overcome.