I loved The Immortal Life of Henrietta Lacksby Rebecca Skloot. It concerns culture cells that have been of critical importance to research around the world.
Most cells are very difficult to maintain alive in petri dishes for the purpose of performing research. Researchers were spending most of their time maintaining the cultures instead of doing research. A particular line of cells labeled HeLa (years ago the first initials of the donor’s first and last names were applied to the sample) thrive in the lab and grow on and on. Even though they are from a cancer specimen, they have been used to develop a multitude of treatments and procedures and to add a wealth of information to our understanding of biology. For just under $500 you can order a frozen sample of the HeLa cells for research.
Compelling Human Story
Even more interesting is the human interest story where we learn about Henrietta’s family, who did not know of her contribution to the progress of science until 20 years into the existence of a thriving market, trading her cells around the word. Henrietta’s children were young when she fell ill and they had a hard time when a cruel relative stepped in to help raise them (more like abuse them). Another relative (I had to return the book to the library so I cannot recall all the details) kindly stepped in to rescue them, but still it was difficult growing up poor and poorly educated in Maryland. They had a hard life , challenged with health issues possibly due to the families’ practice of intermarrying with close relatives.
Whose tissues are they anyway?
There is also extensive discussion of the controversies surrounding the ownership and patenting of tissues and cells, and the tests and treatments derived from them. The courts have gone back and forth about the issue, but the current law has your tissues being out of your control when they have been left behind in the doctor’s office or the hospital. The doctor should inform you if he has a financial interest with regards to your tissues.
I enjoyed learning about the biology of cell cultures and why Henrietta’s cell continued to live while other cells die after about 50 divisions.
I strongly recommend this book for the knowledge and understanding it imparts.
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I might be exaggerating in my title here, but this is very good news for everyone*.
As quoted from USA Today “For the first time since the 1970s, the Center for Medicare Services has released Medicare reimbursement information by doctor and procedure, creating a portrait of the average Medicare payment per doctor and how much of the charge was reimbursed in 2012.”
I have talked about medical transparency (see here) and this will be great for researchers. I just listened to this being discussed on NPR and I still need to look things over.
*Of course there is always two sides of the story and there are those that favor continuation of the status quo. I heard that the American Medical Association opposed this because of possibility for misinterpretation. That is true, but I think that my opinion of the AMA was probably not very high, and this news will not cause any movement in the upward direction. (I just noticed that with access to the data I need to agree to an AMA license with regard to the Current Procedure Terminology (CPT) used within the data set.
I am just downloading the provider data for doctors with last name starting with O,P and Q. It looks like a 115MB excel file. This is so interesting I am tempted to have a web site and blog just around this data release. I think that some people will be kept busy sleuthing through all this data available here.
I read a book by Thomas Friedman about America. That Used to Be Us: How America Fell Behind in the World It Invented and How We Can Come BackI recall that some of it had to do with solving the healthcare crisis. He made the case, I believe for medical transparency. I believe that this would be an important step toward taming the steeply increasing cost of healthcare. I think that there are a number of ways that this could be helpful.
First, it could highlight fraud and waste. I read recently about how the hospitals in a given health network were diagnosing a epidemic of Kwashiorkor, a malnutrition condition normally associated with famine in developing countries. Some newspaper, I think, reported on the practice and then just as suddenly the diagnoses stopped. Under medicare, the inclusion of the Kwashiorkor diagnosis doubled (or so) the reimbursement that the hospital was entitled to.
About a year ago, Yahoo had a video of an otherwise spry 70 or 80-year old woman who was having a doctor visit. She passed with flying colors, but the clinic submitted her medical bills, with several ailments that she did not suffer from, like diabetes and high blood pressure. The doctor squirmed when confronted with the hidden video and medical submission paperwork.
Another benefit would be to highlight those individuals that are not being properly served by the healthcare system. Atul Gawande had a column where he talks about a finding where 1 percent of the patients in Camden NJ account for 30% of the cities medical costs. This was not a case of fraud (mostly) but was simply where individuals were inefficiently being served by the system. It might be someone that cannot afford their meds, so they stop taking them, and then have multiple emergency room visits to stabilize their health. Or the specific treatment is not right for their condition. Intervention by social workers led to reduced cost in the long run, even though some medical professionals fought against the efforts.
Their are some very high obstacles to medical transparency, first of which is medical privacy. People are of course very concerned about how their data will be used. Also, there is push back from those who are on the receiving end of medical payments. I looked at bills in congress that address transparency, and saw that most if not all never made it out of committee. I am sure that there will be the same posturing about medical transparency as there will be about other laws that affect someone’s bottom line. What do you think?