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- Douglas P Zipes, MD, FACC*
- ↵*Reprint requests and correspondence:
Douglas P. Zipes, MD, FACC, Indiana University School of Medicine, Krannert Institute of Cardiology, 1111 W. 10th Street, Indianopolis, Indiana 46202
Depending on how you look at it, seven years is either a long time or a mere blip on the cosmic clock. In the universe of politics and government agencies and special interest groups, it’s definitely more akin to the latter. And so it is now that, after seven years, the American College of Cardiology (ACC) and health care providers across the country are on the verge of an important victory: the enactment of a meaningful “patients’ bill of rights.”
While nothing in Washington is ever guaranteed, there seems to be a nearly unstoppable swell of support for this legislation. Indeed, President Bush not only chose to speak in March at this year’s ACC Annual Scientific Session (ACC 2001) in Orlando, Florida, but he also chose to make the patients’ bill of rights the focus of his speech. As I said at the time, I believe that the president’s decision to speak at ACC 2001 is not only a testimony to the quality of the meeting, but also to the important and expanding role the ACC now plays in the health policy arena.
This belief was reinforced less than a month later, when I was invited to appear before the House Ways and Means Subcommittee on Health to testify on patients’ rights legislation. Sitting alongside leaders of organizations and corporations that both support and oppose a patients’ bill of rights, I told the committee how important this legislation is to patients and physicians, why it’s needed, and why—after seven years of debate—it’s needed now.
It may be surprising to hear that, if history is any indication, enactment of this legislation is right on schedule. Even wildly popular legislation must grind its way through the congressional gears, starting and stopping like an oil-starved car engine. The Brady Bill, for example, which had the endorsement of former Presidents Nixon, Ford, Carter, and Reagan, and overwhelmingly broad public support, took approximately seven years—from 1987 to 1994—to become law.
Patients’ rights legislation has also had wide public and congressional support. In the fight for enactment—which the College∗has been engaged in from the beginning—however, the devil has definitely been in the details. As such, the College’s role in this battle serves as a good example of the kind of persistence required to successfully influence the development and passage of broad-scope legislation. It’s an example that we should all keep in mind as we continue our advocacy efforts on issues like the uninsured, Medicare reform, physician reimbursement, and regulatory relief. More likely than not, achieving change in these areas will take time. And more often than not, it will take far longer than we think it should.
The ACC and the patients’ bill of rights
The move to enact patients’ rights legislation began quietly, a year or so after President Clinton took office, following the quick and disastrous demise of his push for a universal health care system.
During debate over health system reform in the early 1990s, the colossal strength of managed care materialized. As it became clear just howmighty the managed care industry would become, the ACC and several other specialty societies recognized something important: doctors’ ability to offer their patients the best care possible—including access to specialty care—was being threatened.
As a result, the ACC joined ranks with other specialty societies—including those that represent urologists, orthopedic surgeons, neurosurgeons, and gastroenterologists—to form the Patient Access to Specialty Care Coalition. The coalition then enlisted the support and participation of patient groups, who put a human face on the stories of denied coverage of care critical to their health or of being prevented from seeing specialists in a timely manner.
As the coalition continued to recruit members, it also took another very important step: the development of core principles that would define the movement. These principles included guaranteed access to specialty care, a point-of-service option, and the right to timely appeals of coverage decisions.
The coalition’s genesis coincided with a major ACC patients’ rights initiative, dubbed “The Right Doctor at the Right Time.” This campaign, along with those of other specialty groups, played into a growing interest in managed care issues by both the media and members of Congress. From these early efforts sprang the introduction in Congress of the first patients’ rights legislation, 1994’s Patient Protection Act.
In 1996, the coalition led a successful effort to obtain patient protections for Medicare and Medicaid beneficiaries enrolled in managed care plans included in the Balanced Budget Act of 1997—the only set of federal patient protections ever to be signed into law.
The success of these initiatives and the continued success of the coalition—the name of which has been simplified to the Patient Access Coalition and which is now co-chaired by the ACC—have been due in large part to our adherence to the principles we established at our inception. (There have, of course, been several logical additions to these principles over the years, including access to approved clinical trials and emergency room services.) The unwavering dedication to these principles as our guide has delivered us to where we are: testifying in front of Congress, regularly interacting with the key decision makers in the House and the Senate, and having the President of the United States speak at our annual meeting.
Such an unremitting approach is especially important when attempting to fashion changes, such as those contained in the patients’ bill of rights, that face intense resistance. Many opposition groups have budgets large enough to operate long and sustained television and print advertising campaigns, and to employ hosts of lobbyists to work behind the scenes on Capitol Hill. The now infamous “Harry and Louise” television ads funded by the health insurance industry, for example, played a central role in derailing the Clinton universal coverage health plan. Tobacco companies have also successfully derailed anti-tobacco legislation through hefty lobbying and advertising campaigns. And over the years, both the Health Benefits Coalition, a group of large employers and insurers, and the American Association of Health Plans ran multi-million dollar print and television advertising campaigns opposing patients’ rights legislation.
Whether patients should be allowed to sue their health plans in court has been the primary point of contention in this debate and has prevented consensus on a bill to date. Liability is the last spoke in a very large wheel, and it’s a perfect example of the kind of thing that delays popular legislation and prolongs what could perhaps be a one- or two-year legislative cycle into one that lasts four, five, or seven years.
The ACC and the coalition have not taken a position on the liability issue. Assuming a position on such a controversial and divisive issue would mean straying from our principles—potentially diluting our efforts and diminishing everything that we have achieved. Instead, we have chosen to reiterate our core principles at every opportunity and to help facilitate a national dialogue on this issue. In this way, we have nearly achieved our goal and played the role as a strong advocate for physicians and the patients we treat.
While it has taken seven years to get to the brink of enacting a federal patients’ bill of rights, nearly every state has enacted some form of patients’ rights legislation. And while there is a great deal of variance in the level of protection these laws provide, they are still evidence of the power physicians and physician organizations can have if we are persistent and committed to achieving our desired end on behalf of our patients.
There is no doubt that getting this one piece of legislation to the precipice of enactment has been an extremely difficult task. There is more important legislation and more federal regulations on the immediate horizon, however, that must be addressed.
That being said, I know that the demands on physicians’ time increase every day. Patient care has become more about pouring through paperwork and ripping through red tape than talking with patients, assessing symptoms, and prescribing ideal care. That’s exactly why the College’s advocacy efforts on legislation like the patients’ bill of rights are so vital. They ensure that we have a voice in how we treat patients and how we practice medicine. And in the modern era, that is often going to mean seven years of work and the vigilance and dedication to remain on the course that we have selected.
- American College of Cardiology