Synchronicity, Anaphylaxis, CarboTax, and Chemo Thursday : This Is In My RSS Feed

I was feeling comfortable after my Monday meeting with Ms. Clarity and The Chemo Nurses. I got my calendar, and Tuesday got my go ahead to move forward. The port worked well – and they used a numbing agent so I didn’t feel it when she put the needle in to take the blood for my CBC, CA-125, BRCA 1/2, and HNPCC (Lynch Syndrome) tests.

While I was there, Ms. Clarity spoke with my allergist who advised the addition of an H1 blocker as well as an H2 blocker and steroids to my overall protocol. This is a double whammy against histamine production – to way oversimplify things. I haven’t found a good explanation online from a trusted source. Anyway, histamine is what causes allergic symptoms to occur. By blocking those from occurring, the hope is that no reaction will occur – or, if a reaction does occur it will be quickly counteracted.

At this point, I’m feeling a little nervous due to my reading up on carbotax and my own medical history. I have been living a bit too much of the outlier life for my comfort when it comes to medicine. So, just as I am about to embark on the chemotherapy protocol with minimal worry, what comes across my allergy medical news feed, not once, but twice:

Fatal Allergic Reactions Triggered By Common Chemotherapy Drug

A new study from the Research on Adverse Drug Events and Reports (RADAR) pharmacovigilance program at Northwestern University Feinberg School of Medicine identified 287 unique cases of hypersensitivity reactions submitted to the FDA’s Adverse Event Report System between 1997 and 2007 with 109 (38 percent) deaths in patients who received Cremophor-based paclitaxel, a solvent-administered taxane chemotherapy. — Medical News Today

The article went on to state that certain of these reactions happened despite pre-medication. If you are atopic enough, it doesn’t really matter, and I know this. Doing a quickie search with the terms “anaphylaxis taxol” search at PubMed (the Internet face of the older face of Medline), you get 41 hits with the oldest from 1993. Some of them are more encouraging than others, but the overall outlook is less than bright.

Even the rapid desensitization information I came across advised one-on-one nursing care with a resuscitation team on site. Desensitization doesn’t normally include one-on-one nursing. Of course, rapid desensitization is more dangerous.

Now, I dislike it when synchronicity is being too active. That just makes me nervous. I don’t trust synchronicity. Like any irrational human being – and all of us are irrational to some degree, no matter our education or claims otherwise – I find this a little bit unnerving. The information wasn’t particularly new, but the timing couldn’t have been weirder.

Do I believe this is a sign from the universe? Not really. But, it does make one ponder why this was in my allergy feed at just this moment in time. That is just weird.

Why Does Patient Literature Suck?

No, seriously. Most patient literature does not take advantage of what we know about how people process information. It is text dense and uses a minimum of pictures, bullet points, and lists. It is hard for the average person to read. (Ok, DH and I aren’t average as we head over to Medline and try to get the actual journal articles, but we are weird outliers.)

I was a technical writer in a previous incarnation. I was also a librarian with a special concentration in information science. That means I have studied how people seek, retrieve, and process information. Most people want simple and direct information with relevant details being easily accessible. How do you do that? Well, the military learned that comic books were highly effective.

Yes, I said comic books. Scott McCloud is a guy worth reading in regards to the use of visuals in communications. He has done an in-depth study of how visuals communicate information. I would like to see the medical communications groups implement his methods in patient communications. Of course, this may be a pipe dream.

Wouldn’t all of the various medical procedures and such be easier to understand with appropriate pictures?

The Clone Age: Adventures in the New World of Reproductive Technology

I wanted to like The Clone Age: Adventures in the New World of Reproductive Technology by Lori B. Andrews, I really did. Some of what Lori Andrews says is intelligent, but she allows her misunderstanding of basic science to get in the way. Of course, the majority of attorneys have no scientific training, so this does not surprise me. I was just disappointed.

Ms. Andrews started her career in US reproductive medical law with supporting surrogacy. She found herself representing a variety of men and women trying to have children. Surrogates – except for some high-profile media cases – were very likely to be doing this for altruistic reasons. Seeking no more than compensation for their actual medical expenses, these women see themselves as helping those who want to have what these women so love having – a family. Despite some feminists trying to argue that these women were exploited, there were no signs of this with reputable surrogacy agencies.


The Clone Age

This was not the beginning of 3rd party reproduction. Donor sperm has been around for around 100 years and there are a myriad of historical perspectives on the legal issues that ensued. In some places using it was equivalent to adultery – in most jurisdictions the marital bond provided legal parentage no matter the actual biological parentage. These laws could not easily be translated to relate to surrogacy and a patchwork of laws now hold sway in the USA.

My own state of Michigan was – and is – one of the most backwards. (I, personally, blame the undue influence of the Catholic Church and Dutch Reformed Church in the state’s legislative body.) Things have been improving, but not by much. Michigan, unfortunately, was the scene of one of the more egregious surrogacy fiascos resulting in a woman who was not psychologically equipped to deal with being a traditional surrogate being a surrogate. Of course, most of the law surrounds traditional surrogacy with no acknowledgement that carrying a child does not automatically mean that you have provided the primary genetic material (an oocyte) to create the child. Gestational surrogates opened up a whole new kettle of fish.

Ms. Andrews was comfortable with traditional surrogacy, but not comfortable with egg donation or gestational surrogacy in the same way. She shows an underlying hostility towards others using egg donation due to her perception of extreme danger for the donor. (Pregnancy is still more dangerous than controlled ovarian stimulation, statistically speaking.) Of course, math illiteracy is endemic to attorneys and politicians – not to mention the entire general population, educated or not. She outright fears any kind of cloning.

This is where she completely loses me. I do not fear reproductive cloning. And so many people feel they must cut off cloning at that point no matter what.

Of course, Ms. Andrews argues that the problem is with the idea of cloning in total. I have to wonder what happened to her that she fears cloning since experiment after experiment has shown clones are not exact replicas of their genetic parent. Of course, I am used to hanging out with clones knowing too many identical twins who are nothing alike. (They actually run in my family.) It is hard to fear something you have been living with without incident.

Now, if she is talking about due diligence in research, that is something separate. I am all for proper scientific rigor being used to ensure the safety and efficacy of any new procedure. She, however, has decided there can be no benefit of this.

One of the things that bothers me most about the book is the lack of empathy she shows. She kind of admits this when she mentions that she had expected to have trouble having her child since she had been immersed in reproductive medicine for quite awhile. Surgeons, being surgeons – even when they are OB/Gyns – gave her a hard time during her pregnancy which probably alienated her further from them. (Every profession has a weak point they are known for, surgeons have egos that are dwarfed only by the emerging emergency medicine subspecialty. OB/Gyns just happen to be the “nice” surgeons.)

Interestingly, she predicted with great foreboding the development of pleuripotent stem cells from non-embryonic tissue. She actually seems to tend towards considering a blastocyst a person. This is patently absurd to anyone with even a rudimentary understanding of biology.

Now, she does make some good points. One of which is the privatization of the genome. She mistakenly states that the US has never limited patent applications. This is simply not true.

The U.S. Patent Office used to actually forbid the patenting of animals and humans – until Ronald Reagan. Ronald Reagan was the devil himself, as far as I’m concerned. He is the father of the destruction of the Republic. I didn’t like him when he was elected and he did everything I thought he would do. GWB is the natural extension of his policies. Under Reagan, suddenly, previously unpatentable farm patents were being granted. Now, granted, plant patents have always been granted.

If you ever get the chance you should go to your local patent center and take a look at some of the older plant patents. They are gorgeous.

Now, here is the thing, discoveries of facts are not supposed to be patentable. So patenting the genome should be challenged. Unfortunately, the attorneys and magistrates involved are not educated enough to deal with the nuances of science. Those making the decisions are normally people who went out of their way to avoid taking math or science classes!

On page 213 is where she lost me totally:

But we do not usually look to ten-year-old children for assessment of the morality of an issue. . . the fact that many adults still feel the “yuck factor” when thinking about the issue of fetal ovarian transplantation indicates that the concept is not a comfortable one.

I would argue that a 10 year old child would have a stronger grasp of the science than the average Congress Critter or attorney. And, since I would think the maturity of a 10 year old beats the maturity of many politicians I have dealt with (think 2 to 3 year-old “me-me-me-me” mentality), I can’t give credence to the idea that this is some sort of standard. Think about it. Even grown men get squeamish when dealing with women’s cycles. Should they be making any laws dictating what is done to a woman in regards to that cycle?

Another part that made me want to shake the woman silly was her diatribe about how it was all about cloning men. Um… She was in Dubai! Arabic culture is very misogynistic. The truth in the West is that despite most of the physicians in the research being men (not all) the majority of the research monies have been private endowments by women for women suffering from various forms of infertility.

Think about that: Women are the primary financial supporters of infertility treatment.

It bothers me that this woman has such a strong influence on the legal landscape worldwide. She portrays herself as the go-to gal for a variety of governments. I have no reason to disbelieve this. I don’t think those without science education or knowledge should be allowed to dictate the debate.

Most people refuse to educate themselves about something if they find it “icky,” and I think this woman finds cloning icky. It isn’t. There are very real problems in the current cloning technology that we do not yet know how to fix – especially those involving cell aging and death. But, at the same time cloning research is finding those issues, aging research is working on stopping cell aging. Does she even mention this? Nope.

I was very disappointed that a seeming friend to the infertility community is really a frenemy. One who poses as a friend only to sabotage hope and future advancement. This woman would stop many of the people I know from being parents due to her undue concentration on statistical aberrations such as a case where an IVF child died at the hands of his father.

Study after study has shown that children who are born to parents who had to go to the lengths of IVF (and one day I will blog just how involved that is), are perceived as more cared for even by the child. The rate of abuse in the general population makes even the most horrendous cases of abuse in IVF to shame. I know, I worked in that part of law enforcement and know people who are still involved. It really does argue for a license to be a parent.

It is telling that one Texas Reproductive Endocrinologist informed Ms. Andrews that she would never pass his clinic’s psychological evaluation to become a patient.

One last entertaining item that shows how little this woman understands of human nature is when speaking of an 18 to 21 year old man whose parents wanted to preserve his seed and create a grandchild, actually says “But is it really feasible that their son would have wanted to spread his seed across Wisconsin?” (p 232). The male of most mammalian species is quite promiscuous. Humans are not an exception. Now, yes, there is a “squee” factor to posthumous conception, but, if it is right for some couple to preserver their line, it isn’t going to stop just because some lawyer says so.

If you want to know your frenemy, read the The Clone Age: Adventures in the New World of Reproductive Technology. Otherwise, consider it just more anti-reproductive technology tripe and anti-cloning nonsense.

Stem Cell Now

Stem Cell Now: From the Experiment That Shook the World to the New Politics of Life by Christopher Thomas Scott is a layman’s take on the science of stem cells. The book is, overall, a good overview of stem cell research and where it is taking us, but there are some flaws that could have been avoided with greater fact-checking.

One thing that Mr. Scott does extremely well is avoid writing in a sensationalistic manner about what is a true hot button issue of our time. For some reason, ignorant people are allowed to comment on something that is far beyond their understanding. In reading even this rudimentary book, it becomes clear that if you do not understand basic cellular biology – what some people did have in high school – you cannot in any way comprehend stem cells. (In my opinion, if this is the case, you should NOT have a seat at the discussions surrounding this. Of course, this would exclude most scientists, let alone politicians and laypeople.)

Stem Cell Now: From the Experiment That Shook the World to the New Politics of Life lays out the advances in both embryonic and adult stem cell research. It includes discussions of the various types of stem cells found in both the embryo and the adult lines. There are major differences between the types of stem cells, and there are many false starts in this area of research for both main types of stem cells.

Worrisome bits of Stem Cell Now: From the Experiment That Shook the World to the New Politics of Life include generalizations surrounding the IVF procedure wherein he actually claims there are always embryos left over in any IVF stimulation cycle – this is just not true. A significant number of couples never even get to transfer due to such things as no eggs being stimulated, no eggs being retrieved, fertilization failing, etc. We hear more about the extra blastocysts due to the media focusing on the 20% of successful cycles vs. the 80% of unsuccessful cycles.

Despite the inaccuracies – including those due to the publication date being 2006 in this very fast moving field – this book gets a recommendation from me due to the accessible way in which it discusses both the science and the political / ethical arguments surrounding stem cell research.

The author is very careful to avoid taking sides in discussing the political and ethical arguments. He presents each side without sensationalism. He even points out that the politicians (not scientists) decided that reproductive cloning is just wrong. (Personally, I do not agree with this assessment. With proper protections, cloning is just fine since metagenetics and other environmental factors would differentiate the clone from the parent. And, no, cloning a whole human for parts would never be acceptable.)

In reading Stem Cell Now: From the Experiment That Shook the World to the New Politics of Life, it becomes very clear that the USA is fast becoming – if not already – a third world nation in regards to biological scientific endeavor. Due to the undue influence of a handful of radical religious rubes, there are people who actually believe that an unfertilized egg is a human being! The utter lack of education behind such a statement boggles the mind.

Stem Cell Now : From the Experiment That Shook the World to the New Politics of LifeAlso, what is blatantly obvious is that countries, such as South Korea, will be the Meccas of post-modern medicine because of their bleeding edge research. Despite some major scandals, they are still plugging away on creating actual cures for diseases that have none currently. In Spain, they are already trialing stem cell therapies for spinal cord injury.

Note: Personally, I find any argument against stem cell research specious unless you are speaking of crossing the species barrier. My only concern with that is that proper work be done to prevent development of new zoonotic diseases. Or, even, the sudden mutation of a non-zoonotic disease to a zoonotic disease.

If you want to know more about stem cell research and need a good starting point – with the assumption that you actually have some idea what DNA, RNA, etc. are (A PBS Nature viewing education would be adequate), Stem Cell Now: From the Experiment That Shook the World to the New Politics of Life is a good starting point.

Rethinking Thin : The New Science of Weight Loss – and the Myths and Realities of Dieting

Rethinking Thin

Rethinking Thin: The New Science of Weight Loss–and the Myths and Realities of Dieting by Gina Kolata presents a clear-headed analysis of the research in the field of obesity and weight loss instead of the common beliefs.

They are far from the same.

Through a thorough analysis and painstaking interviews Ms. Kolata shows how diets do not work and that every person has a different set point for their weight. And most of us are not going to meet the Hollywood ideal.

She follows a group of volunteers who sign up for a University of Pennsylvania study of a restricted calorie diet vs. the Atkin’s diet. Each diet is then paired with a variant of behavior modification therapy. This study lasted two years and followed people through weight loss, weight loss plateaus, and the almost inevitable weight gain once the diet was over. The findings of the very rigorous study – and several others – blew all of the “common sense” ideas surrounding weight loss out of the water.

People are not fat because they eat too much and exercise too little. Those who are predisposed to be skinny have bodies that work to become skinny, and those who are prone to be heavy, will have bodies that work to be heavy. As a matter of fact, hunger, that most basic of drives, works very differently among those who are obese and those who are not.

In the obese, it seems that restricting diet makes that person obsess on food due to the reaction of the endocrine system. There are a number of chemicals that govern hunger and if the triggers or receptors are not working just right, that person will eat more – or less – than their body actually needs. They will physically suffer if they do not eat. (Yes, some suffer if they do eat as well.) In the most severe cases, leptin can be given to those who do not make enough of it. However, there is a subset of patients who can receive all the leptin in the world and they will never know they are satiated because their brain does not receive that signal.

It seems that the endocrine system is intricately linked into the way in which we process food as fuel. Those who tend to be skinny will turn more into muscle, and those with a tendency to be fat, turn food into fat. It doesn’t seem to matter much (One weakness of the book is that Ms. Kolata does not go into the increasing use of endocrine disrupting substances in our environment which may contribute to the problem.)

Now, some say we are fatter than we have ever been. I – and Ms. Kolata – beg to differ. Look at the paintings of the great masters. Those men and women would be considered obese under current standards. As a matter of fact, prior to the turn of the 20th century, women were not considered beautiful if they did not have something spilling out of their corsets! What happened? Today we have Photoshopped models representing an impossible ideal of thinness and beauty instead of real people.

Now, wouldn’t you think that the research that could point to the real reasons people fail to keep weight off would be welcomed by the scientific community? Nope. The scientific community, as usual, went back to the days of Copernicus and Galileo with aspersions as to the veracity and methodology of the studies showing that weight had other causes – or that it was not, in isolation, a factor in younger time of death.

“If you are on he political right, obesity is indicative of moral failure,” he says, “If you are on the left, it means rampaging global capitalism. – - Eric Oliver, a political scientist at the University of Chicago, an obesity researcher, p. 195

This sums up the problem with obesity research nicely. It has been politicized. Completely and thoroughly politicized. Nobody wants to hear the simple truth that weight – like height – is a matter of genetics, not environment, or will power.

This book also goes into the discrimination against those who are overweight. People are turned down for jobs, unable to build families, and even denied necessary medical treatment because of their weight. Several stories are of men and, especially, women, who when trying to find treatment for disease were turned away because they were heavy. There are several known diseases in women especially (PCOS, anyone?) that can contribute to obesity.

This book needs to be read by health care practitioners, patients, and society as a whole so that the myth that will power can bring about weight loss can be crushed. There is so much talk about the “ownership society” in insurance and health care that it concerns me that this myth pervades so much of the literature.

If someone is overweight or obese, should they have to pay a premium for health insurance in the same way many push that smokers should? If the conclusions of this book – and the majority of scientific research – are followed, no, they should not. It is no more within the person’s control than any other genetic feature.

Where does this book fall down? It does not give mention to co-morbidities that can exist in the overweight and obese that may actually be contributing to weight problems. One of the favorites these days is the risk of asthma with obesity. Is that an accurate portrayal? Isn’t it more likely that due to asthma someone becomes less active and then gains weight? Correlation is not causation and there is a dangerous tendency to make causation out of correlations in the field of obesity research. Of course, there are drugs that can cause obesity as well. Some of them have a greater benefit than the treatment of obesity does for a certain population of patients. That is something only an individual and their doctor can decide.

So, please, the next time you feel like telling that “fatty” that they should close their mouth, think about the fact that weight is in your genes, not your mind.

Pandora’s Baby

Pandora’s Baby

Robin Marantz Henig tells the story of the race to create the first IVF baby in the USA – and the how and why the scientists were stopped. This is one of the more clear-headed telling’s of those days immediately after Roe v. Wade, and the aftermath of Watergate. Ethics was on the mind of the entire country. People were still reeling from the revelations of the Tuskegee Experiment, MK-Ultra, and their like. Nazi atrocities were still too fresh in the minds of many. Scientific knowledge – especially in the newer fields of biology and chemistry – was moving faster than the average person could keep up with. Even those traditional friends of progress were hard pressed to keep up with all of the changes.

A cast of characters that could only exist in reality surrounded the events of September 12, 1973 at New York’s Presbyterian Hospital. Landrum Shettles was a renowned embryologist who had started a very promising career to turn into a rather odd and reclusive character haunting the halls of the hospital. Raymond Vande Wiele was the gynecologist to royalty and the famous while serving as the head of the department. Doris and John Del-Zio, a couple trying to have a child together despite her damaged fallopian tubes. And, a cast of hundreds.

Henig tries to put the events into the context of the early 70s by tracing the roots of the technology and science necessary to create IVF. She moves from the 19th century to the 1978 events surrounding Lesley Brown’s birth in a patchwork manner that is accessible despite itself. She is sympathetic to all the players – even those who do not deserve it. And both proponents and opponents acted in manners which were lacking.

For some reason Ms. Henig diverts attention into the world of DNA splicing and the self-imposed moratorium scientists put upon themselves surrounding such endeavors – until the profit margin was seen clearly by certain corporate sponsors. The main reason seems to be segueing into the current controversies surrounding cloning.

Ms. Henig’s book is excellent until she starts reading too much into much refuted scientific studies telling of birth defects in babies born via IVF. In long range retrospective studies done in Europe and Canada, there is no higher incidence of birth defects than from similar populations not employing IVF. The studies done in the USA showing increased birth defects tend to be sponsored by monies from opponents of IVF. (Too few people look into who is sponsoring the study.) If that chapter were to be removed or modified I would say this is the perfect book to familiarize oneself with the history and controversy surrounding IVF. It is still a very, very good history book.

The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception

The Baby Business

Debora L. Spar’s The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception is a clear-eyed analysis of the market targeted at the infertile. Unlike most books on the subject of ART and IVF, she does not fall quickly into the trap of the sensationalism so prominent in many other books that attempt to investigate the topic. Not many people have put forward the reality that no matter how much one would want to regulate the market around reproduction, someone will find a way around that regulation.

Ms. Spar deftly incorporates market analysis into her discussion of the markets surrounding infertility. Her book shows how markets grow around free market medical procedures. Most books concentrate on the headline getting parts of ART – High Order Multiples (HOM’s), gay and lesbian pregnancy, and selective reduction. The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception concentrates on the money – something that brings the reality of this business closer to something the ordinary person can understand.

Make no mistake, Ms. Spar does not reduce the emotional toll or charge of the businesses surrounding family creation. The Baby Business is one of only a few books that actually takes the historical context of how and why this market has developed – including some of the non-traditional family creation techniques that have been used historically. Many people do not understand that the technology has only changed a portion of this. Intra-family adoption has been widely practiced throughout history. Adoption was an accepted practice in many societies. Families with too many children would often offer their “excess” children to the childless in their community. This made sense in rural communities that relied on many hands to work – but often could not support too many children in a single household. As time went on, two things happened – blood ties became enshrined in cultures with primogeniture inheritance laws and adoption was either suspended or formalized. (Confucian society never suspended the concept of adoption.)

The dichotomy of the desire to have children with the vagaries of a market driven by both medical ethics and patient passion has created a very complex (mostly) self-regulating market within the USA. It has also created highly regulated systems in Great Britain and Denmark – with a middling system in Australia. This has created an international market where it is normal for certain wealthier patients to travel to find clinics willing (and allowed) to treat them with bleeding edge technologies. Unfortunately, due to the confluence of politics and money, some countries have outlawed or limited the use of the most promising therapies.

The medical market has included donor sperm for over 100 years, 30 years of IVF, and 20 years or so of donor egg and embryo. This market has highly variable pricing – and vastly different regulations throughout the world. Each country’s market offers different advantages and disadvantages to the person seeking to create a child. Thankfully, she saves the sensational for her last chapter – where she talks about possible futures.

Ms. Spar does go into the fact that, like most customer service markets, patients rarely switch clinics. This is true in many service industries – proximity often trumps quality or price. This is just as true for a family doctor, dentist, or even a person’s hairdresser.

Ms. Spar does not spare adoption from analysis as a market, and rightly so. There are transactions that do occur – from the completely state run to the black market – when adopting a child. Sometimes no money seems to change hands, as in the US Foster Care System. Of course, the social workers, administrative system, and court costs are paid for through the tax system. The market has simply been transitioned to the public sector. The most “desirable” children are handled through high-cost private attorneys and agencies. An international market has grown up around boundary crossing adoptions which, despite the Hague Convention is ripe with vagaries that would-be parents are still willing to maneuver.

Ms. Spar does not make actual judgments, rather, she points out that no matter what judgment is made, the market will still exist. Outlawing, or over-regulation will simply drive the market underground. She compares it to the 1920s evolution of birth control – a market where the wealthy had access and the poor did not. The wealthy tend to be able to afford to cross state and international boundaries to pursue treatments not available to the public at large.

Mentioned, but not explored in depth, were the vast numbers of infertile couples in the USA who are in the lower socioeconomic sphere that have thus far, been untapped by the infertility market. Instead, she focuses on the ART market as a luxury market in the USA – akin to yachts and high-end automobiles. And, truthfully, that is who the US market has targeted due to the (unmentioned) religious nuts who have been in charge of our political sphere and the dumbing down of America. (Yes, I have an extremely poor opinion of those who don’t think for themselves, or allow religious leaders to think for them, but I digress.)

This book is well worth reading because it is actually interesting without being a headline ripping bastion of fear-mongering. A discussion about markets in relation to IVF and adoption actually challenges the reader to think of exactly what capitalism and laissez-faire really means.

The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception saves the controversy for the final chapters – well, except for some passing mentions of controversial markets and technologies. Ms. Spar asks if we, as a society, want to treat ART and adoption in the same way we treat the drug market – from illegal to OTC – or leave it as it seems to be shaping out – a market where the wealthy can pursue any dream and the poor or middle class are left with very limited choices.

Ms. Spar does not claim to have the answer, but she does provide more fulfilling food for thought than any book I have encountered dealing with this topic.

Everything Conceivable: How Assisted Reproduction Is Changing Men, Women and the World


Everthing Conceivable

Originally, I was going to wait until I finished reading The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception by Debora L. Spar before reviewing this book. But to do justice to that book, which, thus far is much, much better, I am separating out my review of Everything Conceivable.

IVF is controversial with certain elements of our society. I know people who have used various Advanced Reproductive Techniques (ART) to have children – including IVF and donor technology. I also know many people who have adopted or are adoptees. Unfortunately, this book sensationalizes something that really isn’t all that sensational.

Ms. Mundy choses to concentrate on the sensational higher order multiples, gay men using surrogate plus donor egg technology, and the trauma of selective reduction. She also left fact-checking behind. Her statistics can easily be dismissed by anyone able to use Google. Only in passing does she discuss the far more down-to-earth issues of insurance, lack of research funding, and the toll this treatment takes on the patients.

In passing Ms. Mundy speaks of the pain and isolation that many infertile couples feel as they tackle what she rightly calls the disease of infertility. She barely speaks to the disruption any type of ART cycle causes in a couple’s lives. And if they are using donor egg, their donor’s life. Instead of speaking to the financial and emotional toll for the average patient, she goes straight to the fear factor. An entire chapter is devoted to the idea that treating male and female infertility will cause the human race to become infertile. Though I am cautious about most science, I doubt that is true since quite a bit of infertility (not all) occurs because of the consequences of other diseases – cancer, STD’s, endometriosis, PID, tuberculosis, pneumonia, mumps, etc., in both men and women. Not all of these have a genetic component. Fear-mongering is not reporting.

Ms. Mundy turns to lesbians and gays in their pursuit of parenthood before segueing into single women desiring motherhood. Here she discusses surrogacy using a story of a mother on the East Coast who decides to carry twins for a gay couple on the West Coast. She ends up having a hysterectomy due to complications. This is not the majority of infertility patients – or surrogates – but it does sell books. Unfortunately, it also misrepresents the plight of millions of couples struggling to have a child.

Ms. Mundy over sensationalizes donor technologies. Sperm donation has been around since the 19th century. Though, the way it was introduces was quite unethical – the doctor didn’t tell the patients’ involved – it is no longer quite as controversial as it once was. Egg donation is very new, introduced in the 1980s, it has allowed women born without ovaries or in their mid-40s to have children. The latest statistics have reported that no woman over 45 has been successful in using her own eggs in IVF. So, if a celebrity in her mid-40s is having children, there is a 99.999% chance that the children are from donor eggs. This fact is largely unknown by the public at large – much to the detriment of the education of young men and women planning out their lives.

The discussion of donor technology brought her to a discussion of the rights of children to know or not know whether they are from donor technology. And a discussion of whether the identity of the donor be available to the child – different, compelling cases, can be made for both sides. This is a discussion worth having, but, unfortunately, by the time she gets to this point she has chosen to focus on the more controversial uses of ART and IVF.

From the donor technology chapter Ms. Mundy goes right back to high profile controversies with high order multiples (HOM’s). Her focus on HOM’s does not recognize the complexity that leads to this outcome. She does not even mention that in states with mandated insurance coverage for IVF there are significantly fewer twins or HOM’s. Many people believe ART = IVF. ART includes the use of a variety of techniques – including medicated IUI’s and injectable medications. Unfortunately, people start believing ART is IVF. When IVF results in HOM’s it is often after the couple has failed numerous times with IVF cycle after IVF cycle. There are no reputable clinics that transfer more than 2 blastocysts in a first IVF unless the blastocysts are very, very poor quality.

Of course, Ms. Mundy, instead of concentrating on why HOM’s come into being moves right into selective reduction. This procedure is never gone into lightly. Her insistence that the majority of patients are IVF patients is simply not borne out by doing simple searches in the literature. (I cannot speak to reducing twin pregnancies.) IUI’s are the most common cause of HOM’s. Medicated IUI’s which have been canceled due to super-ovulation do not preclude a couple desperate to have children from having sex. And, that is where a good portion of these cases come from.

The final chapters are on ethics and embryo freezing. First, let me clarify my own belief that embryos are not human beings, rather they are potential human lives. From a reproductive science point of view, the majority of embryos ever fertilized are rejected by the mother’s body for a multiplicity of unknown reasons. In my mind, it is foolish to consider a grouping of cells with no discernible consciousness as “alive”. With that said, Ms. Mundy goes into the glut of frozen embryos that are currently being stored with no known future. Some very few couples allow those embryos to be adopted by other couples. Most unfortunately, this industry is controlled by a far right Christian group currently that insists on some very dangerous medical practices. Practices which contribute to HOM’s rather than decreasing risk. And, due to the ban on federal funding, even those couples willing to allow their possibly not viable embryos to be used in research, cannot.

A case in point is cytoplasmic transfer which was outlawed in the USA due to Congress’s inability to understand even basic science. In cytoplasmic transfer, the cytoplasm from a healthy donor egg is extracted and injected into another woman’s older egg to help sustain it. It does introduce the other woman’s mitochondrial DNA. This made some very uneducated people believe that doctors were cloning. When a friend told me she would have to travel to Lebanon (pre-Iraq) to have the procedure done I was appalled at the lack of scientific oversight. Cloning is the replication of a living creature. This is not cloning. Rather, it is on the same level as giving a transplant of any sort and should not be outlawed by laws governing cloning! All mitochondrial DNA can be traced back to the same mother in Africa millions of years ago. Everybody pretty much shares a finite number of mitochondrial DNA groups that could be matched between donor and recipient alleviating fears of mixing mitochondria. Instead of level headed scientific oversight, we get knee jerk reactions. (This was not discussed in her book.)

I was greatly disappointed in this book – as I expected after hearing an interview with this woman on the Diane Rehm show. In that show, she was allowed to propagate false information that I was able to sit at my computer and find the statistics refuting her. Yes, I know statistics lie, but she did not deal with any of the very real issues that the average infertility patients deal with.

I cannot recommend this book. It is poorly researched, adds fuel to fires that do not need more fuel, and does not even touch on the very real issues facing the majority of infertile couples dealing with this issue. Truthfully, the biggest issue is that we have allowed a small, radical, religious segment of our society control of what should be being controlled by scientific rigor.

Another area that is given some passing acknowledgment – but not fully developed – is the complicity of both the Women’s Movement and men in the growing numbers of women in their mid- to late 30s or 40s finding out they cannot have their own biological child because no one cared to inform them that there was a definite reproductive window. As a matter of fact, the major feminist groups attacked Reproductive Endocrinologists who did try to start an awareness campaign for women about their fertility. Why aren’t we educating young men and women about their reproductive lives? Again, a rabid section of the Religious Right and a conspiracy of Feminist Fervor has been allowed to overrule science based education. Every young man and woman should have a thorough understanding of how their and their potential partner’s reproductive tract works. Teach it as clinically as possible, with scientific names and out in the sunshine and the titillation will be absent. Trust me, if it is taught in the same way English grammar and Mathematics are, teenagers (too late) will not be running out and having sex.

The reality is this book falls short of its promise by focusing on the stories in the headlines rather than the real day-to-day stories of people in need of fertility clinics and their technology. The statistics she relied on can easily be dismissed by looking at the Society for Assisted Reproductive Technology (SART), American Society of Reproductive Medicine (ASRM) or Center for Disease Control (CDC) web sites. Unfortunately, today’s user of the CDC site must be wary of non-scientific religious ideology having replaced sound scientific evidence. Ideally, there would be a World Health Organization group assessing fertility clinics.

How Doctors Think (Audiobook)

How Doctors Think

Those who suffer from troublesome, hard-to-define or rare illness know much of what is in this book, but this book would be invaluable to someone newly navigating a diagnosis.

Groopman demystifies doctors – something long overdue. Guess what, they are just like us. Doctors have preconceived notions borne of their own education and experience that sometimes interfere with proper diagnosis. Hoofbeats don’t always mean horses, sometimes there really are zebras, as the saying goes. Too often doctors stop testing.

Groopman opens the book with a tale of a woman who many in the allergy community can identify. She had been diagnosed as having psychological problems (anorexia among them) and IBS. Well, she was celiac. It took 10 years to get this diagnosis from a new doctor – everyone else figured her to be properly diagnosed.

Everyone assumed that she was lying when she said she was eating and throwing up despite not wanting to. If you aren’t aware, a common effect of a food allergy is gastrointestinal distress. (That’s the nice way of saying it is coming from both ends. Think food poisoning except you are also having other histamine reactions – maybe hives, maybe swelling, maybe blood pressure drops.)

I felt for this woman. I recognized this woman. I admired this woman for continuing on when she knew that her doctors were wrong.

Now, here is the thing. This woman was educated. Probably upper middle class and had access to the proper education and materials to know what to ask at the doctor’s office to get him to probe a little further. Or, as in her case, to try yet another specialist. Some physicians call this diagnosis shopping, but I think that is rather wrongheaded.

Diagnosis shopping is the continued visiting of physician after physician in hopes of getting a certain diagnosis. I don’t know anyone without hypochondria that would do that. Here is the thing, if my doctor can’t help me and I know something is wrong, why wouldn’t I continue going to new people in search of answers? I would do that for gardening, cooking, books to read, etc. Why on earth should medicine be any different? Yes, doctors are the “experts” in medicine. But, in reality, they are really the monopoly holders on medical information. Their training is in interpreting symptoms for the purpose of diagnostics and treatment. If the treatment is not working, it is time to move on.

Since I live with a rare food allergy (corn) and difficult drug allergy (ingested alcohol), I’m used to having to deal with recalcitrant physicians who think they know better than I do. I can’t count the number of times I have had physicians tell me what happened to me was not possible – despite having a confirmed diagnosis from a well-respected allergist.

That is what makes Groopman’s book so refreshing. He doesn’t say to defer to the doctor. Rather, he says that you, as patient, are an equal partner in treatment and if a given doctor is not the right fit for you, move on. I know I have done this.

Of course, my criteria for different types of doctors are different. I usually spend an inordinate amount of time training a new primary care physician. Currently, I like my PCP, but I don’t think he fully understands the ramifications of the severity of my allergies – he was shocked that I take Claritin-D 24 hour every single day. And, ocassionally, I will take a Benadryl if things get really, really out of hand. (I always care an epi pen.) Of course, he is not an allergist, nor a radiologist (a.k.a. paranoid doctor), so I don’t expect him to have the heightened awareness.

Of course, I could have an unreasonable expectation because my previous PCP was very aware of the problems of allergy due to her son being highly allergic to the world. She often worked with the pharmacy to come up with the right drug. I would drive over an hour to see her. I was not a happy person when she retired.

So, though I know some physicians will take umbrage with what Groopman suggests in the role of patient as a partner in treatment – and even diagnostics – that is a correct statement in my mind.

The real problem with his hypothesis is that there is just too much information. No one person, not even a librarian, can keep up with all of the research in a single field.

Disclaimer: I am a trained librarian and I still find new studies on corn all the time. Some I should have seen years ago by their publication date. But there is just too much to keep up with.

I would recommend this book to all newly diagnosed patients – those of us entering the world of medical care recipients for whatever reason – and their families. Even for the seasoned and cynical veterans there are hidden gems, such as the doctor, himself, finding too many conflicting opinions. Or that the much vaunted academic expert is not as useful as the day-to-day practitioner.

If you can influence your library, make them add this to their collection. I believe it is that valuable.

The next book I’d like to see from this area of publishing?

How to find medical information and research and how to present to my doctor. Hrm… that might make a good post.