07/25/2009 05:12 am ET | Updated Nov 17, 2011

Re-forming Health Care: It's About Health, Not Just Insurance

With health care reform fixated on financing, costs, and coverage, there has been too little discussion of people and what reform might actually do for their health. President Obama says he doesn't want the new system simply to deliver more of the same; he wants better care and better outcomes. To that end, it's critical to refocus the conversation on proven, cost-effective ways to improve people's health, particularly for one crucially important -- and costly -- group: the chronically ill.

America spends $2 trillion annually on health care, and today 75 percent of that money goes to chronic disease. There are 133 million Americans with one or more chronic illnesses, such as heart disease, arthritis, hypertension and diabetes. They are often vulnerable, and they consume the most health care. Yet a recent survey by the National Council on Aging, Re-Forming Health Care: Americans Speak Out bout Chronic Conditions and the Pursuit of Healthier Lives, underscores that, despite massive spending, our health care system is not meeting their needs.

Conducted by Lake Research Partners, this study of 1,000 Americans age 44 and older with one or more chronic conditions, found that many of the problems associated with chronic diseases are not getting addressed. Too many -- 71 percent -- report living with pain, 65 percent are stressed, and 50 percent are depressed. We must do better by these people and the answer is not just about access to medical care or even how medical care is delivered.

Experts note that 99% of chronic care is self-care. People, even those with multiple conditions, are in the clinician's office just a few minutes a month. All the other hours and days, they and their families are doing self-care. Coping successfully with chronic disease requires a high degree of self-management, of the person, by the person, for symptom control, staying on a medical regimen, and following a healthy lifestyle. This in turn requires that people to be well informed, confident, and well supported in developing self-management skills that fit their own lives.

This is particularly hard for people to do on their own: it requires help. Yet 45 percent of people with chronic illness in our study say they have rarely or never been referred to a resource like a group class, health educator or counselor, or dietician.

It will come as no surprise that cost also stands in people's way, with 38 percent of respondents saying they can't afford to do things that will improve their health. These numbers rise alarmingly among Latinos (63 percent), African Americans (58 percent), people with incomes below $20,000 (65 percent), and people with four or more chronic conditions (59 percent).

That's why we believe national health reform must include support for self-care for the chronically ill. There are several evidence-based programs with a proven national record of improving people's health, function and communication with physicians, while reducing distress and lowering use of the hospital and/or emergency room. These initiatives -- such as Stanford University's Chronic Disease Self-Management Program designed by Dr. Kate Lorig, RN, DrPh -- operate in community settings and are led by highly trained peer leaders, many of whom are also living with chronic disease. Importantly, these programs include group and peer support that helps people pursue the health and lifestyle goals most important to them.

Along with improvements in primary care, we must make a national investment in the Stanford Chronic Disease Self-Management Program and other evidence-based models. If we reshape how we address the health problems of millions of people with chronic conditions and expand self-care, we could save money, empower patients, and enrich lives. Now that would be real health care re-form.

More information about the self-care study and chronic disease self-management programs can be found on the National Council on Aging website.