Don’t Tell, Don’t Ask
By
A few weeks ago I wrote a post about the unbelievable cost associated with Alzheimer’s disease and how large a population it is likely to affect. According to an op-ed piece written by Sandra Day O’Connor, among others, it is estimated that by 2050 approximately 13.5 million Americans will be stricken with Alzheimer’s, up from five million today, and that the cumulative price tag for treating Alzheimer’s, in current dollars, will be $20 trillion. In contrast, remember that the cost of our ENTIRE healthcare system today is around $2.4 trillion.
This week there was a follow-up piece in the NY Times entitled, “Tests Detect Alzheimer’s Risks, but Should Patients Be Told?” The article described how new diagnostic tests have become available that make it possible to detect early Alzheimer’s and, more interestingly, to predict more accurately one’s likelihood of getting Alzheimer’s in the future. The focus of the article was the moral and ethical dilemma presented by the availability of this knowledge.
Since there is no known treatment for Alzheimer’s and none on the short term horizon, physicians with knowledge of a patient’s Alzheimer’s risk are put in an interesting spot. If they tell their patients the bad news, it may have a profound negative effect on their psyche and lead to debilitating depression; if they don’t tell, they are withholding information that might enable a person to prepare their life more effectively to deal with the oncoming challenges. As the article so well articulates:
“Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms. At the same time, many of those diseases have no effective treatments. Does it help to know you are likely to get a disease if there is nothing you can do? “
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Human Farming & the Limits of Medical Research
By FRANK PASQUALE, JD
A Museum of Modern Art exhibit by Michael Burton once proposed that human beings themselves would be the soil for a “future farm:”
Future Farm predicts that the emerging pharmaceutical research in harvesting adult stem cells from fat tissues and its convergence with future nanotechnologies, will bring with it scenarios that reconsider the body as income. We live in a world where industries exist to offer financial rewards for those willing to sell a kidney or produce hair to beautify others. Industries have grown to facilitate transplant tourism as a result of the success of contemporary surgery. And scientific and technological advances continue to bring new possibilities for the practice of farming the body.
This may seem like an overly dramatic or even science-fictionalized description of desperation due to poverty and larger economic trends. But the global economic race to the bottom has now so influenced medical research that Burton’s dark vision is coming closer to realization.
A recent article by Bartlett & Steele and a book by Carl Elliott describe the rise of “contract research organizations” that organize the initial phases of drug trials. Bartlett and Steele choose a provocative metaphor to describe the trend:
To have an effective regulatory system you need a clear chain of command—you need to know who is responsible to whom, all the way up and down the line. There is no effective chain of command in modern American drug testing. Around the time that drugmakers began shifting clinical trials abroad, in the 1990s, they also began to contract out all phases of development and testing, putting them in the hands of for-profit companies.
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Job Post: Home and Community Based Services (HCBS) Policy Director
Organization: The Service Employees International Union (SEIU)
Location: Washington, D.C.
The Service Employees International Union (SEIU) is seeking a talented and forward-thinking individual for the position of HCBS Policy Manager. This is a senior-level position within SEIU Healthcare, one of the union’s three operating divisions, and will report to the Home Care Director. The HCBS Policy Manager will have lead-level responsibility for the following:
Job Post: Health Policy Coordinator
Organization: The Service Employees International Union (SEIU)
Location: Los Angeles, CA
SEIU is seeking to hire an expert in health care administration and financing to help analyze, develop, and implement policy recommendations that support the members of Local 721 and the communities served by the safety net system, focusing on Los Angeles County.
