What Does Health Care Reform Mean for People Who Live With Parkinson’s?

Careful observers of the Great American Debate About Health Care Reform — now taking place over proposed legislation H.R. 3200, or America’s Affordable Health Choices Act of 2009 — will have noticed an interesting change over the past week or so in the way the Obama Administration has chosen to frame the problem.

I first noticed it during a network newscast two weeks ago featuring David Axelrod, the President’s Senior Advisor. Mr. Axelrod had dropped the phrase “health care reform,” and replaced it with “health insurance reform.”

Why is this change in phrasing so significant? It is because the new phrase is an accurate description of what is actually being fought over in the debate, and the earlier one wasn’t.

Health care, by any reasonable definition of the phrase, refers not only to the way we pay for health care but the ways in which we organize it, deliver it and use it to encourage certain behaviors (especially those of a preventive nature) and avoid others. It is the Grand, Global Vision.

Health insurance, on the other hand, is just that: finding ways to pay for the care we need when we need it, so we all get covered and do not go broke using it. And for people who have lived for years with a chronic disease like Parkinson’s, the financial issues — crucial as they are — are not the only challenges they face. It is the Narrow, Necessary Vision.

Make no mistake, reforming health insurance is crucially important, both for the nearly 46 million Americans who have no health insurance of their own and for the economy as a whole that is groaning under the strain of a mega-industry that absorbs around 16 percent of our entire gross national product. But by itself, better health insurance is going to do little or nothing directly to improve the care that is received by the person with, say, Parkinson’s disease, who is enrolled in Medicare, Medicaid or a private insurance program … and whose care is often woefully deficient.

What are some of these deficiencies?

• For starters, a person with Parkinson’s on Medicare visits the PD doctor about three times a year and spends perhaps 15 minutes with the doctor (the amount that is typically paid for by Medicare). Yet that person — along with his/her caregiver — typically needs time for the myriad of questions that come with a complex, lifelong condition like Parkinson’s. Many of these questions could probably be answered by a nurse practitioner or allied health professional, if one were available as part of a multi-disciplinary team, which — in the typical Medicare-funded ambulatory setting — is very rarely the case.
  
  
• Then there’s the matter of home health care. Currently, Medicare pays only for such care that is required for only short stints of time during an “episode of care” – usually illness, injury and/or rehabilitation. The benefit is only temporary and available for those cases where further improvement is expected. Even though this kind of care is needed on a regular basis by many of those who live with advanced Parkinson’s — and costs a lot less than a hospital stay, which people with PD rarely need — it is simply not available to most people unless they are in a position to pay the very substantial costs out of their own pocket, which few can.
  
  
• What about exercise programs, or physical and occupational therapy, or other support services that research shows can significantly enhance the quality of life for people with Parkinson’s? Like home health care, these programs are covered for only limited periods of time. These are hard to find now, and are not likely to be easier to access under any of the versions of health insurance reform that are currently being discussed.

Conclusions

The fact is that the current reimbursement models for health care are poor at using non-doctor personnel for jobs they are perfectly capable to handle; poor at supporting home-based care, even when it is demonstrably better for the patient and more economical for the system; and poor at addressing long-term quality of life support that is so much more important for people with long-term conditions like PD than it is for short-term conditions — even very serious ones. The current system is simply miserable at addressing the “chronic care needs" of Parkinson’s and other neurodegenerative diseases … and health insurance reform is unlikely to make this better any time soon.

So Mr. Axelrod is correct when he redefines the Obama goal from “care” to “insurance.” But it is too bad that he has to. Let’s hope that with successful health insurance reform, and a quickly recovered economy, we can soon turn our attention to a more fundamental and exciting challenge: getting better-designed health care to the people who need it.