July 24th, 2010 at 2:11 am
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New Plan to Diagnose Alzheimer’s Before Symptoms Apparent Not Without Drawbacks

by Carol Bursack

New diagnostic guidelines were discussed at an international Alzheimer’s meeting in Hawaii recently. These guidelines have much to offer, but also leave us much to consider when it comes to unintended consequences–the problems that come along with so many basically good strides in health care, legislation, and research.

I think of the The Health Insurance Portability and Accountability Act of 1996 (HIPAA) as an example. For the most part, HIPAA is good. Most of us have signed papers, generally good for a year, to let someone in our family have access to our health information. The idea is to protect our privacy but to let someone we trust help us with our health care.

However, when HIPAA first went into effect, I had trouble getting an appointment made for my then teenaged son so he could have the health care he needed. As the rules became more clear, clinics and hospitals figured out what was required of them, but it took time to shake out the kinks.

Looking Closely at Unintended Consequences

Many of us have had problems, if our elders haven’t given us a Power Of Attorney for Health Care, when we tried to get in to see our loved one’s doctor about changes in our elders’ condition. If our elder has dementia, things can get really sticky. Our loved one needs help, but the clinic can’t tell us what is going on, nor can they release information without our loved one’s consent. Thus the unintended consequence of our being able to help a parent who may not have thought ahead about the need to add our name to the consent form.

These new diagnostic practices, outlined well in the New York Times online article, “Rules Seek to Expand Diagnosis of Alzheimer’s,” are for the most part good. By expanding the scope of diagnosing Alzheimer’s, doctors can start treating patients earlier, and perhaps put off severe memory loss and behavior changes before the patient and the family even notice problems.

Also, drug companies may have extra incentive to research medications that can stop the disease at even earlier stages. The pluses are exciting.

The negatives? What about employment opportunities, health insurance (until 2014 when people can’t be denied health insurance because of pre-existing conditions), and even just the stigma attached to diseases such as Alzheimer’s? I also see depression as an issue. Until we have medications where we can actually help people who are labeled as beginning the Alzheimer’s journey but have no symptoms, are we really doing them a good turn?

There has been discussion about if it’s good or not to know if a person carries the genes for Hodgkin’s disease and other illnesses. The ethical questions here are similar to finding out if we have Alzheimer’s. While there are drugs to help slow decline when people are diagnosed early enough with Alzheimer’s to treat them, these drugs offer no cure, nor do they work for everyone. They also have side effects.

Do we opt to treat someone who shows no symptoms at all with a drug that could potentially do them harm? For the most part, early diagnosis for Alzheimer’s, as we’ve known “early diagnosis” up until now, has been a good thing. However, these extraordinary steps to diagnose Alzheimer’s long before there are any symptoms are sure to bring questions from ethicists and others. This will be an interesting process to follow. As with many medical issues, there is bound to be a mixed bag of results–good and not so good.

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