Friday, August 7, 2009

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.


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.


alwayslearning said...

I don't know what he's talking about. How, exactly, does this complex plan benefit Parkinson's patients --- and how does it affect everyone else? I am on Medicare, I pay for Medigap - I have never paid for a visit to a Parkinson's doctor. And I have a wonderful doctor who spends lots of time with me. I have that Medicare prescription drug plan which pays for many of my costly drugs - and I am grateful. Are we talking about Parkinson's patients who are in poverty? I for one am thrilled with the coverage I have and would not want to see it changed in the slighest.

karen said...

I really appreciate this clearly written article. I hadn't noticed the switch (Health Insurance not Health Care), but of course, the administration is backing off and it is too bad.

One point I would add, in addition to the deficiencies you bring out, I think the way doctors are paid (mostly for tests & procedures ) makes it difficult and unlikely they will spend time listening and considering the patient's need for exercise programs, etc.

Thank you for this timely article!

Judy Carney said...

great point and thanks for pointing the difference out. I suspect you are correct. As an Occupational Therapist the only way I can see someone seems to be post-fall or post-UTI or some other physical ailment not for the needs of PD. I have had a lot of experience at this point in time and think I can offer valuable ideas that I've acquired. I've been waiting to see if it could be in the equation but seems like not yet.

Anonymous said...

I have several important questions dealing with both Health Care Reform and Health Care Insurance. To limit my comments to Health Care Insurance:
2. Will it be open to illegal aliens who are covered presently by trips to the E.R.?
3. Will any Federal Funds be directed to Planned Parenthood?
4. I live in MA where the State insists upon health coverage - with the UNHAPPY RESULT that the State is almost broke. Has this type of situation been even examined by those in Washington?
5. Has every Representative and Senator yet read the bill on which they are going to vote?
6. President Obama has stated that I'd be able to keep my PRESENT INSURANCE. Has anyone in D.C. considered what will happen to the millions of people whose employers/former employers been supplying such insurance when it looks like FREE EXIT for them to drop it?

Anonymous said...

We with parkinsons get little help now,,when health care is rationed we will be put aside and get none,,,,,

Bette said...

I am a speech language pathologist, specializing in neurological communication disorders. I am certified in Lee Silverman Voice Therapy (to address speech/voice deficits in PD) and in various new and traditional therapies that address swallowing problems. It sickens me that Medicare and many insurance companies will not cover many necessary services (or, if they do, they put a brief time limit on those services) citing that PD is a "progressive, chronic and debilitating disease". Yes, it is all of the above but it is not a death sentence and in the long term, many people will communicate with much more effectiveness with family and friends and be able to use swallowing strategies to enjoy eating and drinking for far longer than they would if they have no help. We desperately need reform--and we have to let health care administrators and insurance companies know that there are effective treatments that will at least maintain, if not improve communication/swallowing disorders. If you can help someone enjoy his/her life for as long as you possibly can, how can you, in good conscience, DENY someone these vital functions?
Bette Siler, M.S, CCC-SLP

Winemaker said...

So actually what is your opinion of the health bill as it is written now?

I understand it as being structured to disallow care to those with PD or those otherwise considered uncurable. The costs of the bill can only be handled if the number of those allowed care is decreased and the level of care is decreased. I do not need help with 'end of life management'; that is my decision.

Kenneth Wayne said...

I have trouble following your "solutions" to more comprehensive health care for those with Parkinson's. Yes, change is needed in various aspects of health care. We used to call it continuous improvement, but "reform"? As for Obama and Pelosi and both sides of the aisle, it's all smoke and mirrors to mask nationalization and big government; a lesson well learned from Clinton. Believe me folks, when you vest decisions to a select few, you are getting very close to totalitarianism. Our system isn't perfect, but with the proper incentives our marketplace is still the best way in all of world history to achieve efficient and fair change.

Laura said...

I am a care partner to my brother diagnosed at 36, unable to continue self employment at 40, and at 44 living in poverty on SSI. We are still fighting for his SSDI benefits, the rules preclude access despite years of paying into the system. SSI recipients under 62 receive MediCal in CA. Recipients enroll in a HMO plan, we chose Kaiser because of PD specialist within the network. The plan carves outs some services such as psychiatry. Thus he not under treatment for depression and other non motor problems which often affect his quality of life more profoundly than the physical difficulties. He sees his neurologist twice a year for medications management purposes. The lack of integrated care is a serious concern to me, especially as he declines. I am also very concerned that without Medicare benefits at the point where he needs skilled nursing care our choices will be horrible. I recognize that the combination of unfortunate circumstances place him outside of the social services safety net, and I realize he is not alone, more young onset folks find their lives upended, and with few options. I would like to see medical care with better coordinated with social services for those suffering with neuordegenerative disorders. There are programs which assist those disabled by AIDS, mental illness and drug addiction.
I would like to see a shift to a case management approach including better data collection methods to determine unmet needs assessment.

My family health care costs are $800 a month, our Kaiser copay is high enough to discourage us using our insurance for anything but the most problematic, such as broken bones. I would like a public option which is affordable.


Anonymous said...

My father is in the end stages of Parkinson's and was only able to get covered services for a short period of time after an incident that landed him in the hospital. He was in a rehab facility for six weeks and was doing very well until the services stopped after he got home. Now he is in a wheelchair basically unable to walk.

Both him and my mother have already made provisions for the end of their lives (late 80's) that they decided on years ago. No one is going to tell me that because of their age or condition, that they can't have services. I don't believe that anyone is going to intentionally pull the plug on grandma, but when you dump 47 million more people into a system that is already strained, someone is not going to get the care that they need.

Robin Elliott said...

Dear Friends,

Thank you for all of your comments and thoughts about this complicated issue.

Based on the many inquiries we have received from you and PDF’s other constituents about the meaning of various legislative proposals for health care reform, and their implications for the interests of the Parkinson’s community, PDF has drafted a set of Principles for Health Care Reform.

These principles are available on PDF’s website here: - and are also referred to in my latest blog post.

As a non-partisan organization, we believe that these principles should be included in a health care reform plan, in whatever form it takes, if it is to meet the needs of people living with Parkinson's.

We hope these answer some of your questions and look forward to hearing your continued feedback on this issue.

Robin Elliott