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- Arthur Garson Jr., MD, MPH, FACC*
- ↵*Reprint requests and correspondence: Dr. Arthur Garson, Jr., Baylor College of Medicine, MC-14460, 6621 Fannin Street, Houston, Texas 77030
Did you know that between the ages of 19 and 64, Americans have absolutely no safety net for health care coverage unless they are completely disabled? It’s true. Although this unfortunate situation applies to a large number of individuals with current or preventable cardiovascular disease, one ever-growing group of patients deserves immediate attention: adults with congenital heart disease (CHD). Imagine a 25-year-old with a pacemaker and no health insurance—further explanation is not required.
The American College of Cardiology (ACC) has made a strong statement supporting access to cardiovascular care, regardless of a patient’s ability to pay (1). In short, the ACC supports universal coverage. There are a number of ways to achieve universal coverage, some of which have become debating points for our current national political candidates. For many of us, substantive health care reform is a dream (and will be the topic of my last President’s Page in March). In the meantime, however, we have today’s reality: we must take incremental steps to provide coverage for certain segments of the population, such as adults with CHD. This need is urgent because there are at least a half million adults with CHD in the U.S. and this number is growing at a rate of more than 20,000 per year (2,3).
Most of these patients are not severely disabled and are capable of working and contributing to society (4,5). Yet, insurance coverage is denied, limited, or set with unacceptably high premiums. For example, through state high-risk pools, premiums for these individuals may exceed standard premiums by as much as 50%, making this form of insurance inaccessible for many of the people who need it most. Indeed, even those who have insurance face other issues, such as underinsurance, disapproval by managed care companies of specific medical services, and lifetime caps on coverage.
This broad population of individuals is particularly vulnerable because, generally, they suffer from conditions they have lived with all or most of their lives. They have received coverage and treatment as children, only to have it taken away at a time in their lives when they are expected to become self-sufficient. To complicate matters, these patients, who are generally capable of working, often have difficulty finding employment because of their health history. Employers are reluctant to hire them for fear of the higher health insurance costs that could accompany them.
The ACC’s legislative approach
We have met with the White House, members of Congress, and numerous other specialty and patient organizations to discuss possible mechanisms for providing health insurance and job training to children with childhood disease, including CHD. The ACC presented a resolution to the American Medical Association (AMA) House of Delegates; the AMA issued a report in December 1999, encouraging the government to identify these individuals and their barriers to care.
The College worked on a popular proposal introduced by Senators Edward M. Kennedy, D-Mass., James Jeffords, R-Vt., and Rep. Rick Lazio, R-N.Y. Endorsed by the Administration, the legislation, titled the Work Incentives Improvement Act, provides an incremental approach to addressing the insurance needs of the less severely disabled. The overriding intent of the legislation is to enable disabled individuals to return to work, but it also contains a provision that allows state demonstration projects for people who are less severely disabled and who, in the absence of needed health care services, would reasonably be expected to become disabled. The demonstrations specifically permit states to offer these individuals a Medicaid buy-in option. The College convinced legislators to add to the House Commerce Committee report accompanying the bill language that clarifies the congressional intent of the proposal. The report’s new language says that states could include in the definition of “potentially severe disability” individuals with congenital birth defects or other diseases developed in childhood. The ACC key contacts were alerted, providing important support; the bill was signed into law in November 1999. This is an important first step.
The ACC’s research efforts
The College, in concert with the Cystic Fibrosis Foundation and with the support of numerous other physician and patient groups, is also in the process of launching a study to better define the population of uninsured adults with childhood disease, their health care costs, and the potential costs of providing them with health insurance coverage. The results of this study will enable the College to work more effectively with Congress, state legislatures, ACC chapters, and other organizations to craft feasible legislative solutions that would cover all of these individuals.
The role of ACC chapters
Individual ACC chapters are encouraged to take up this issue on behalf of cardiac patients. Already, states such as Iowa and Vermont are drafting proposals to fulfill the impending mandates of the Work Incentives Improvement Act. The College has materials ready to assist chapters in assessing the scope of the problem in individual states and determining strategies for communicating with state officials. Please contact the ACC Advocacy Division at 800-435-9203 or e-mail firstname.lastname@example.org more information about this issue.
The role of individual physicians
Our patients need us to advise them about what to expect in the “real world.” We should tell our patients as they enter adulthood that their insurance coverage requires their attention and should be of concern; they should be advised to seek jobs with large employers and the state or federal government. Our patients should understand that, under law, their health status is to have no bearing on employment and, therefore, employers are not permitted to inquire about their condition. This advice can help the patients we know, but we must also endeavor to help those we do not know by working with our legislators to extend coverage to as many people as possible. Our “strong, steady steps” will eventually lead us to better lives for our patients.
I welcome your ideas about this important issue. Please feel free to write to me at Heart House, 9111 Old Georgetown Road, Bethesda, MD 20814-1699; fax me at 301-897-9745; or e-mail me at email@example.com.
- American College of Cardiology
- ↵Ad Hoc Task Force on Access to Cardiovascular Care (Hutter AM, Jr., chair): American College of Cardiology Policy Statement: Access to Cardiovascular Care and Related Issues. J Am Coll Cardiol 1998;31:485–6.
- ↵Perloff JK. Medical center experiences: Great Britain, Canada, and United States. In: Perloff J, editor. Bethesda conference 22: Congenital heart disease after childhood: an expanding patient population. J Am Coll Cardiol 1991;18:311–42.
- Garson A.
- Truesdell S.C.,
- Clark E.B.