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An aboriginal girl dies of leukemia: Parental “rights” versus the right of a child to medical care

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One topic that keeps recurring and obligating me to write about it consists of critically analyzing stories of children with cancer whose parents, either on their own or at the behest of their child, stop or refuse chemotherapy or other treatment. It is, sadly, a topic that I’ve been discussing for nearly a decade now, starting first on my not-so-super-secret other blog and continuing both there and here. Indeed, the first post I wrote about this problem was in November 2005, a fact that depressed me when I went back through the archives to find it because so little has changed since that time.

I was painfully reminded of this last week when stories started circulating in the media about the death of Makayla Sault, an Ojibwe girl and member of the New Credit First Nation in Ontario:

The entire community of New Credit is in mourning today, following the news of the passing of 11 year old Makayla Sault.

The child suffered a stroke on Sunday morning and was unable to recover. Friends and family from across the province travelled to New Credit First Nation today to offer condolences, share tears and pay their respects.

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Posted in: Cancer, Public Health, Religion, Science and the Media

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Supplement Regulation: Be Careful What You Wish For

A recurring theme at SBM is the regulation of supplements, and the impact and consequences of the Dietary Supplement Health and Education Act of 1994 (DSHEA). As one of SBM’s international contributors, I thought it might be helpful to look at how the DSHEA stacks up against the equivalent regulations of its neighbor to the north, Canada. Given the multiple calls for overhauls and changes to DSHEA, an international comparison may help focus the discussion around what a more science-based framework could look like.

Briefly, the DSHEA is an amendment to the U.S. Federal Food, Drug and Cosmetic Act that establishes a regulatory framework for dietary supplements. It effectively excludes manufacturers of these products from virtually all regulations that are in place for prescription and over-the-counter drugs. The FDA notes:

Generally, manufacturers do not need to register their products with FDA nor get FDA approval before producing or selling dietary supplements. Manufacturers must make sure that product label information is truthful and not misleading. FDA’s post-marketing responsibilities include monitoring safety, e.g. voluntary dietary supplement adverse event reporting, and product information, such as labeling, claims, package inserts, and accompanying literature. The Federal Trade Commission regulates dietary supplement advertising.

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Posted in: Herbs & Supplements, Politics and Regulation, Science and Medicine

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Evidence-Based Legislation? Lessons From Abroad

President Obama appears to be refreshingly pro-science in his outlook, publicly lauding objectivity and careful analysis. He has even been credited with saying that “we need evidence-based legislation” in regards to public policy. The New York Times reports:

Agencies will be expected to pick science advisers based on expertise, not political ideology, the memorandum said, and will offer whistle-blower protections to employees who expose the misuse or suppression of scientific information.

The idea, the president said in remarks before an audience of lawmakers, scientists, patients advocates and patients in the East Room, is to ensure that “we make scientific decisions based on facts, not ideology”: a line that drew more applause than any other.

But when it comes to healthcare reform, many policy decisions put us in uncharted territory, with intelligent arguments on both sides of many legislative options and no American historical frame of reference to help us determine the best course of action. In times like these, perhaps the best we can do (to promote “evidence-based legislation”) is to study similar policy decisions made by our Canadian and European counterparts.

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Posted in: Politics and Regulation

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