The Recent Court Decision Halting Federal Funding for Research Involving Human Embryonic Stem Cells

You will all have read about last Monday’s surprise decision by a federal judge to halt federal funding for human embryonic stem cell (hESC) research. The ruling, which was in response to a lawsuit by scientists who were engaged in non-hESC research, was based upon the judge’s interpretation of a Congressional ban on using federal funds for the destruction of embryos that is sharply at odds with more than a decade of legal interpretations under three administrations, Republican as well as Democratic.

Although the decision on hESC research does not extend to other kinds of stem cell research – including the new and powerful technique known as “induced pluripotent stem cells (IPS)” – it does represent a sharp and unexpected setback just a year and a half after President Obama signed an executive order releasing funds for hESC research.

The judge’s action won’t block the road to a cure for Parkinson’s and other diseases, but it closes – at least temporarily – one of the gates to that road. And scientists tell us they need all of those gates open, not just some, if they are to do their life-saving work most effectively.

With PDF's support, the Parkinson's Action Network (PAN) is working on this issue. According to PAN's CEO, Amy Comstock Rick, there is some good news.

First, the Obama Administration has moved with alacrity to challenge the judge’s ruling, which is known as a “temporary injunction.”

Second, stem cell research advocates, led by the Coalition for the Advancement of Stem Cell Research (CAMR), is working with members of Congress to craft a legislative “fix” so that the next judge doesn’t have the same hook on which to hang his anti-hESC research hat that this one did.

And third, we have an advocacy coalition – including you and other people with Parkinson’s and their families – that is stronger than it has ever been and has proved its effectiveness politically on this grassroots issue. As Amy says in a statement she issued to the PD community on Wednesday, “we need each and every one of you to be a part of it!”

Certainly there’s no denying that the court decision is a bad break for the Parkinson’s community. If it is allowed to stand, it will throw a wrench into science, and other wrench into the hopes and prayers of people with Parkinson’s and their families who have a right to be sure that scientists have access to every opportunity to chase the cure to their disease. Be assured that PDF will be doing everything it can, along with our friends at PAN and the other Parkinson’s organizations, to make certain that it does not stand.

We will keep you apprised as events unfold. In the meantime, you may want to visit the PAN website for further information on how you can become involved in advocacy efforts around this issue.

What Do You Think?

So what are your thoughts on this recent court decision halting federal funding for embryonic stem cell research?

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.