A recent paper in the Journal of Adolescent Medicine reveals what every gynecologist knows. Young teen girls generally regret early sexual activity. Over the years that I practiced gynecology, I met hundreds of women who wished they had waited to lose their virginity, and I never met a single girl or woman who said, “If I had it to do over again, I would have lost my virginity at a younger age.”

The paper is entitled Joining the Sex Club: Perceptions and Experiences of First Sexual Intercourse in Australian Adolescent Females, by Smith, Skinner et al. The authors interviewed 68 young women ages 14-19. They found:

Feelings of readiness were more prominent in teenagers who were older and had postponed intercourse until a context of ‘right time, right person’. Reflecting with disappointment and regret, others spoke of conforming to peer norms, coercion from sexual partners, and being intoxicated as the reason for their premature and sometimes unwanted first encounter.

Dr. Skinner explained the findings to the Australian newspaper, The Age:

…[S]ex-education classes tended to focus on how to prevent sexually transmitted infection and unwanted pregnancy.

Often neglected was the importance of teaching young women negotiation skills so that they could resist pressure from their peer group and partners…

The girls who were younger when they first had sex were more vulnerable to peer pressure and pressure from their partner …

Being drunk or tipsy at the time was also common…

The longer intercourse was postponed in a relationship, the more likely girls reported feeling ready.

Young women have always experienced pressure from young men to engage in sex. What’s changed in the last few decades is that the culture at large sends teen girls the message that early sexual activity is desirable. In contrast to previous generations of women who were counseled (and warned) how to avoid sexual pressure, contemporary sex education focuses only on the medical facts, not the psychological issues.

As a gynecologist, I’ve had unique opportunity to view the consequences of increasing sexual openness. It appears to be a bonanza for young men, generally at the expense of young women. Men get all the benefits; women carry all the risks. Regret is not the only problem. Men get laid, get action, get lucky and women get pregnant, get sexually transmitted diseases, get infertile, get cervical cancer.

Young women face significant and life threatening risks that young men simply do not face. Pregnancy may be an inconvenience and a financial drain for men, but it does not put their lives at risk. Abortion, while not as dangerous as pregnancy, still poses significant risks to health and life.

Sexually transmitted diseases (with the exception of HIV) rarely threatened the health or fertility of men, while they are responsible for significant illness and death among women. According to Sexual behavior: related adverse health burden in the US:

Overall, in the United States, in 1998, about 20 million adverse health events (7532 per 100,000 people) and 29 745 deaths (1.3% of US deaths) were attributed to sexual behaviour… If HIV related mortality were excluded, more than 80% of sexual behaviour related mortality would be those among women. Among females, more than half of the incident events were contributed by curable infections and their sequelae… Cervical cancer and HIV are the leading causes of [unsafe sex related] mortality among females …

Although young women may learn about protective measures in sex education classes, those who are pressured into early sexual activity often fail to use contraception and condoms because they were not planning to have intercourse in the first place. This is especially true of sexual activity that occurs when they are under the influence of alcohol or recreational drugs.

Teen virginity has become a highly underrated commodity in our culture. However, those who care about the health, both physical and psychological, of young women should be advising them to wait until the later teen years before embarking on sexual relationships. Many young women are hurt by giving in to pressure for early intercourse, but no one ever regretted waiting.

Addendum: I’ve noticed that this post is being discussed on several websites and some people suggest that it is sexist. That is absolutely not its intent, so I want to elaborate a bit more.

It is important to recognize that for almost all of recorded history, women’s sexuality has been controlled by men for their own purposes. Virginity, and chastity were valued by MEN much more than by women, because enforcing those values assured a man that the children of his partner were actually his children. It is men who decided to stone women for adultery, and men who made up the myriad rules that governed every sexual decision a woman might make. And of course when it came to social inferiors or victims of war, men felt free to rape women simply because they wanted to.

Now, in an age where birth control and paternity testing make it possible for a man to be sure which children are genetically his, it is not surprising that the strictures on women’s sexual decisions have been lifted. Female chastity is simply not as important to men as it used to be. Access to willing females is more important, and it is not surprising that the culture has changed to pressure women into believing that they should be sexually available, whether that is what they truly want or not.

The crumbling of any marriage is a tragedy, usually played out among a small circle of family and friends. The details, undeniably painful to the children, are not shared with the world at large. Unfortunately for the 8 children of Jon and Kate Gosselin, whose personal lives are routinely exposed for the world to see on the television show Jon and Kate Plus Eight, the dissolution of their parents’ marriage is also a public spectacle.

It didn’t have to be this way, but Kate felt compelled to grant an interview to People Magazine to publicly air “her side.” Rather than making her a sympathetic figure, it demonstrates an extraordinary lack of insight into her own behavior and motivations. By the end of the interview, the reader wonders not why Jon is straying from the marriage, but how he managed to stay with Kate until now.

Only a person with no insight into her own behavior and motivations would do the following:

1. Invite People Magazine to discuss the intimate details of her marriage and its breakdown. It is clear from the outset that Kate is trying to justify her own behavior and has no regard for saving the marriage.

2. Opt for the celebrity glamor look. Kate has undergone an extraordinary transformation in the years since the show started. She has literally become a “cover girl” complete with elaborate cut and colored hair artfully styled for the camera, provocative pose, and excessively airbrushed countenance. That’s fine for someone who aspires to be a celebrity, but hardly reassuring in a woman who claims that her primary interest is supporting her family.

3. Miss Mother’s Day with her children in order to come to New York City to give the celebrity interview.

4.Acknowledge that it is the glare of the public eye that has harmed her marriage and then declare that under no circumstances will she give up the public exposure, insisting:

“… My point is that I could care less if this all died tomorrow, for my sake. It’s for my kids. I feel if we put ourselves out there, it’s got to be worth it, for them.”

Perhaps that might justify the show itself, for which they receive from $25,000 to $50,000 per episode, in addition to the income from the DVDs and the free trips and products. With that level of income, it is difficult to justify the books, book tours and paid speaking engagements that involve Kate alone. As Kate says about Jon:

“He hates to speak, he doesn’t write, he doesn’t do public appearances — all those things I love. And now he’s resenting me for it.”

Yes, he resents you for spending so much time away from him and the children for projects that are all about you when you don’t need the money.

5. Whine about all you’ve done and complain that no one appreciates you.

Kate says she’d been doing her best to support her husband, as he grew disenchanted with their increasingly high-profile life. “I walked through this with him for six months… First he said he’s unhappy, he needs a career. ‘Great’ I said ‘Go get a part-time job… Never happened. So I said, ‘Go back to school! …’ that never happened. Originally, we’d speak together [on tour] on weekends. But then he was saying, ‘I don’t like to speak, you do most of the speaking anyway, so why don’t you just go.’ So I started carving him off engagements so he could stay home with the kids…”

In other words, Jon is floundering in his role as TV dad, without a real career, and doesn’t want to spend his weekends making more money instead of being together as a family.

6. Rule out the one option that might save your marriage and family life:

Of course the one option that hasn’t been tried is walking away from the show. “Everybody says, ‘Oh, quit and go away,'” Kate says. “But I’m hesitant to do that because I don’t think that’ll make Jon happy either. And therefore I step up for the needs of my kids. I have a huge weight on my shoulders. This needs to go on because I need to be able to provide for my kids.”

7. Criticize Jon as if he were a child, not another adult:

“Do I prefer that he was feeding them pizza instead of the organic meals I prepared in advance? No. Do I prefer that these people I do not know are at my house? No. It’s a huge disappointment to me. I’m really suffering…”

Well if you don’t like those things, perhaps you should be there to make sure that the children eat the organic meals that you prefer, and that Jon has the adult companionship that he clearly craves.

8. Be absurdly defensive:

But Kate noticeably bristles at any suggestion that her tightly wound temperament somehow drove Jon to act out. “Oh, it’s still my fault ..,” she says, rolling her eyes … I did not cause this. It’s ridiculous, really, it’s pathetic. Are you kidding me? I drove him to that?”

Jon is responsible for his own actions. No one drove him to make the irresponsible choices he made. However, that does not absolve Kate of blame. Her choices have led to his choices and she needs to own the decisions she has made and the consequences that have resulted.

Her husband has told her that he does not like the way that their family and personal lives have spun out of control. He does not enjoy being a public figure, and he resents giving an ever larger portion of their time to the pursuit of money and fame. And Kate has made it spectacularly and publicly clear that she is not willing to compromise, not even to save her marriage.

The People Magazine interview is a terrible public relations mistake for Kate Gosselin. She reveals herself to be obsessed with celebrity and money, and unwilling to examine her own role in the crumbling of her marriage. I have a suggestion for Kate:

The next time you want to justify your behavior as your marriage crumbles, make an appointment with a therapist, not People Magazine. Talk to someone who can help you understand your own behavior and take responsibility for your actions, not a magazine that will eagerly accept your offer to exploit your personal tragedy. You owe it to Jon, and most of all you owe to those eight children you brought into this world. They didn’t ask for and don’t need celebrity, even if you do; they need a father.

Parental medical neglect is in the news again. On Friday a Minnesota judge ruled that parents cannot refuse chemotherapy for a child because of religious or cultural beliefs. Daniel Hauser, 13, was diagnosed with Hodgkin’s lymphoma in January. Hodgkins is among the most treatable forms of cancer and indeed, Daniel’s tumor shrank after his first round of chemotherapy, but Daniel’s parents were so distressed by how sick the chemo made him, they refused further treatment. Daniel’s cancer has begun growing again.

According to MSNBC:

[His mother] has been treating his cancer with herbal supplements, vitamins, ionized water, and other natural alternatives she learned about on the Internet — despite testimony from five doctors who agreed Daniel needed chemotherapy. Daniel told the judge during closed testimony that he has also been eating “green food” such as broccoli and beans, as well as eggs and fruit.

Fortunately the Court has intervened in this case and Daniel will restart treatment soon, but other children have not been so lucky. Eliza Jane Scovill died in May 2005 because her mother prevented her from getting appropriate medical treatment.

Three year old Eliza died of AIDS related pneumonia. When Eliza became ill, her mother, Christina Maggiore, neglected to tell the doctors that both she and Eliza were HIV positive. It is not clear that Eliza could have been saved by the time she was brought to the hospital, but without an accurate medical history, doctors lost valuable time in determining the causative agent, and therefore, the appropriate treatment for Eliza’s pneumocystis carinii pneumonia. Pneumocystis is an otherwise harmless bacteria that causes pneumonia only in people who are severely compromised by AIDS or other immunologic failures.

Why did Christine Maggiore withhold this critical information? She did it because she was an activist who believes that HIV does not cause AIDS.

Maggiore had a homebirth with Eliza because no doctor would care for her unless she agreed to take medication to prevent the transmission of AIDS to her unborn child. She was counseled not to breastfeed Eliza, but she did so, and published pictures of herself breastfeeding Eliza to show her confidence in her belief that HIV does not cause AIDS. She never allowed Eliza to be tested for HIV, because she felt that there was “no need”.

After her daughter’s death, Maggiore gave interviews claiming that she did not mention her HIV status, and the fact that her daughter was almost certainly HIV positive, because she did not want the doctors to “discriminate” against her daughter. Although the autopsy report and the slides of the pathology examination have been released publicly, Maggiore insisted that Eliza died of an anaphylactic reaction to antibiotics, not of pneumocystis pneumonia.

According to the American Academy of Pediatrics position paper Recognizing and Responding to Medical Neglect:

Several factors are considered necessary for the diagnosis of medical neglect:

1. a child is harmed or is at risk of harm because of lack of health care;

2. the recommended health care offers significant net benefit to the child;

3. the anticipated benefit of the treatment is significantly greater than its morbidity, so that reasonable caregivers would choose treatment over nontreatment;

4. it can be demonstrated that access to health care is available and not used; and

5. the caregiver understands the medical advice given.

Reasons for medical neglect include: poverty, lack of access to care, family chaos, lack of awareness, lack of trust in health care professionals, and caregiver’s belief systems:

Some caregivers have belief systems that are inconsistent with Western medicine. A parent of a child who has a serious illness may decide to rely on untested remedies or alternative medicines. Some caregivers will seek healing through religion rather than medical care…

Just as there is no special status granted to religiously motivated medical neglect, there is no special status granted to medical neglect motivated by belief systems such as AIDS denialism or “alternative” health.

Eliza Scovill died because of the beliefs of her mother and Daniel Hauser is at risk of dying for the same reason. Because of the imminent risk of death, the Court has intervened in Daniel’s case, but many other children are victims of less dramatic forms of medical neglect but there is no one to protect them.

And what of Christine Maggiore who endured the death of her daughter. It did not change her AIDS denialism and the result was a forgone conclusion. On December 27, 2008, Christine Maggiore died of AIDS related pneumonia. To the very end she insisted that HIV does not cause AIDS and refused the medications that could have saved her life.

Oprah Winfrey’s decision to publicly support Jenny McCarthy is bewildering. Why would Oprah, who appears to care passionately about the health and well being of children, support quackery that can only result in the death and permanent injury of children?

Some have speculated that it is due the financial bonanza that McCarthy could represent. But Oprah does not need more money or more fame. I don’t doubt that Oprah’s support for McCarthy is real. Both women are bound together by a belief in magical thinking.

Magical thinking does not mean believing in magic. It means believing that thoughts and actions have the power to affect unconnected events. Magical thinking is at the heart of the success of books like The Secret, also an Oprah favorite. Once you believe that your thoughts can affect reality, it is but a small additional step to believing that you can construct your own reality.

Oprah dreamed of stardom unheard of for an African-American, a woman, a child of abject poverty, and single handedly turned her dreams into reality. That is the essence of her appeal to millions of women across the nation. She holds out the promise that their lives can be better than they are, and that they can make it happen.

Books like The Secret send a similar message. You can control your destiny by your thoughts and dreams. A relentlessly positive attitude has the power to create a relentless positive life. Yet somewhere along the way, Oprah has managed to elide a key difference between herself, and believers in The Secret. Oprah worked to bring about her new reality.

Oprah didn’t simply dream of being a superstar; she did the grunt work and paid her dues. Her dreams gave her the strength to do the work, but it is the work that made her a star. Oprah seems to have forgotten that key point.

Jenny McCarthy, like all purveyors of pseudoscience, believes in the power of magical thinking. Fundamentally, magical thinking in healthcare is a coping mechanism. Researcher Yannick St. James explains:

… [M]agical thinking … involves imparting moral meaning to a situation, reifying and externalizing one’s control over the situation, attempting to symbolically influence this powerful, mystical entity that is vested with control, and interpreting scientific symbols as objective signs from this entity…

…[W]hen faced with situations of uncertainty, loss, absence of control, or inability to attain a desired outcome … people often engage in magical thinking by creating and using meaning-based connections to understand and influence situation outcomes.

Autism is definitely a situation of uncertainty, potential loss, and absence of control. No one, not the parents nor the doctors, can control the process or even predict the outcome. The potential always exists for a devastating result: inability of the child to achieve, even in the most basic ways, the milestones of growth to successful adulthood.

In the face of this uncertainty, the most people have turned to science to understand autism. As St. James notes, integral to the practice of science is the impact of “chance, probability and randomness”. This is, in fact, what statistics tell us. Autism will affect some children; we can predict the probability of autism in a population, but its occurrence in an individual child is essentially random.

Vaccine rejectionism, in contrast, imparts a reason and moral meaning to autism. Children aren’t autistic because of random (probably genetic) accidents. The cause is vaccination, and the moral meaning is that evil vaccine manufacturers and doctors have conspired to withhold the connection between vaccination and autism from the general public.

Magical thinking holds out hope that may not exist in reality. As St. James comments:

Whereas scientific thinking seeks to empirically validate or invalidate possibilities to classify them as reality or fantasy, magical thinking creates and maintains ambiguity around what is possible in order to provide meaning and sustain hope in the context of stressful situations.

Hence, although it has been repeatedly demonstrated that vaccines do not cause autism, vaccine rejectionists persist in insisting that we “don’t know” what vaccination really does. Although it has been repeatedly demonstrated that autism cannot be cured, vaccine rejectionists persist in believing that they can rid their children of autism. The key point is that magical thinking within the context of vaccine rejectionism provides a way to manage the uncertainty and fear associated with autism.

Jenny McCarthy and the vaccine rejectionists use magical thinking because they believe it can change reality. Oprah Winfrey believes that thoughts can lead to a new reality. That is why Oprah is supporting Jenny McCarthy, even though, as Oprah must surely know, wishing does not make it so.

When I announced my fourth pregnancy to my boss, I was startled by her response.

“What’s the matter with you? You’re a gynecologist; if anyone should know about birth control, it’s you.”

“It wasn’t an accident,” I replied. “We want a fourth child.”

I have never forgotten her look of disbelief.

She was not the only one who was amazed. For every person who congratulated us on the news, there was another who offered “condolences.” For them, the decision to have another child was bewildering. Why would anyone make that kind of commitment?

It is this amazement that is at the heart of America’s current fascination with big families. TLC (The Learning Channel) has led the way in catering to that fascination. From Jon and Kate Plus Eight, to Table for 12, through The Duggars: Eighteen and Counting, we can’t seem to get enough.

Why are we fascinated? It’s not about the cute children, since the newer shows have teenagers and young adults, as well as a severely handicapped child. I suspect we are fascinated because we stand in awe of the commitment required to deliberately choose a large family: the commitment to parenting as a lifestyle choice and the commitment to marriage that lies at the core of the decision to have many, many children.

In contemporary America, such a commitment is not only unfashionable; it is unfathomable.

If contemporary America could be distilled to one imperative, it would be this: The highest calling is self-actualization. Or, more colloquially, “it’s all about me.” In other words, being happy (and being happy is considered the highest state of being) requires doing what you want, when you want to, unfettered by obligations and commitments. Children are an obligation, a temporary detour on the road to a life devoted to self.

The Pill has been cited as the central reason for the shrinking of American family size, and that’s true as far as it goes. The Pill has allowed American parents to choose the size of their families, instead of making do with unintended results of sexual activity. Yet the Pill is not responsible for the belief that a smaller family is better. That is a product of our philosophy.

When the highest calling is following every personal wish and whim, commitment to someone else can seem exotic indeed. Half of married couples can’t manage to maintain a commitment to the person they promised to love, honor and cherish forever. Last year almost 40% of women giving birth couldn’t manage to meet the most minimal commitment to their newborn, that of providing a father to support and nurture that child.

Even within a secure marriage, most couples cannot fathom willingly undertaking the sacrifices necessary to support and nurture more than two children. Children are important accessories to a “good life” but very few Americans seem to believe that children represent a “good life” in and of themselves. Having more than two children makes about as much sense to them as wearing more than two socks at a time. Why would anyone bother?

To watch the day to day life of parents who have committed to large families is like watching an exotic animal in its native habitat. Look, they put children’s needs ahead of their own, and they enjoy doing it. Wow, they’re not obsessed with following their own desires and whims. Amazing, the parents are not obsessed with having as much discretionary income as possible.

What feeds our obsession with super size families is not the logistics of caring for so many children. It is the commitment, to spouse, to children, to the family itself that undergirds the decision to have a large family. Octomom Nadya Suleman misunderstood that crucial point. She thought that by having a mega family she would be guaranteed a TV show and lots of merchandising opportunities. She didn’t understand that no one wants to watch a selfish, mentally disturbed woman who collects children as if they were trinkets. They want to see adults who value and live commitment to others.

That’s also why we’re obsessed with the state of Jon and Kate’s marriage. Husbands cheat on wives every day of the week, but this is a special case. We thought Jon and Kate were more committed to their family than to themselves as individuals. We’re disappointed in Jon because he turns out to be just like everyone else.

The current popularity of TV shows following large families is not about the children; it’s about the parents. In a world that values self actualization as the highest human aspiration, adults who put others before self, who believe that marriage is forever and children are not “accessories” to life but are life, inspire curiosity, admiration and fascination.

It’s been many years since the magazine Cosmo has spoken to me. Cosmopolitan Magazine, the ultimate achievement of editor and writer Helen Gurley Brown (Sex and the Single Girl) is aimed at women 18-30 and concentrates on the old fashioned pre-occupation of landing a man. Of course landing a man used to mean getting him to marry you; Brown’s great innovation was to insist that “landing” him simply meant getting him into bed. Setting the bar a lot lower made the chances of success a lot higher.

Fortunately, Gurley-Brown has not forgotten older women like me. Her books offer advice for how to keep a man, once you have landed him. The principle is the same; only the specific tactics need to be modified.

What is the principle? Simply put, sex is all about him. Women exist primarily for the sexual satisfaction of men. Not coincidentally, that is the central premise of pornography. As if the objectification of women in men’s magazines were not bad enough, women’s magazines like Cosmo emphasize the point: Your sexual needs and desires are irrelevant, ladies. What matters about your sexual needs is not their fulfillment, just the effect that your fulfillment has on men’s enjoyment.

Case in point, a typical Cosmo cover featured Total Body Sex, the Naked Quiz, The Trick that Attracts Hot Guys Like Crazy, and, my personal favorite, Your Orgasm Face; What He’s Thinking When He Sees It. Not only are women being judged for sexual attractiveness (evidently the only characteristic of concern), they are being judged on how they look during sex. You might be pretty, you might be thin, you might be well endowed, and that will convince him to take you to bed, but he’s still entitled to judge your performance during sex and finding you lacking. Because, repeat after me, ladies: Sex is all about him.

Gurley-Brown thinks it is important for “older” women to understand that while the principle is the same, the tactics must be modified. In the section Lovemaking for Grown-up Girls (from her book I’m Wild Again), she explains:

When a woman is, say, up to thirty, all she has to do is show up for the lovemaking, cooperate and be adored… When she is fifty, sixty, maybe only forty, the most successful lovemaking is her doing things to him…

At that advanced age, sex is all about his penis:

…the stroking, loving, sucking, handling and, most of all, the admiring thereof… [He might] prefer a younger, less puckered up body but hands belonging to that body wouldn’t do the things we can and will do so adroitly…

Thank goodness that women in an advanced state of decrepitude (over 40) have at least one advantage over the younger and less puckered.

Gurley-Brown claims to be a feminist, and perhaps when Sex and the Single Girl was written in 1962, sexual openness passed for feminism. However, it seems to me that Gurley-Brown has confused explicitness with empowerment. She may be willing to discuss sex openly and explicitly, but sex in her mind is still all about men and what she presumes to be their needs.

In the supposedly repressed 1940’s and 1950’s, sex was a wife’s “duty” to her husband in exchange for marriage and economic support. In the early 2000’s sex is still a woman’s duty, though it is no longer rewarded with marriage and economic security, merely the presence of a warm body in bed. That doesn’t sound like progress or feminism to me.

It’s not easy to gross out a gynecologist. The job involves constant exposure to bodily fluids of all types, especially blood. And delivering a baby is in a class by itself. Even a normal birth ends up looking like Texas chain saw massacre, plus excreta of various kinds.

So when my office assistant came to warn me that the next patient had a disgusting problem, I raised by eyebrows in surprise. What problem could be so bad that it would gross out a gynecologist?

The assistant didn’t know what the problem was, but it had required unusual measures. The odor emanating from the young woman was so offensive that she could not be allowed to sit in the waiting room. The assistant had escorted her to a private exam room the moment that she presented at the front desk.

My assistant was not exaggerating. When I opened the door to the exam room and stepped in to introduce myself, I was assailed by a truly repulsive odor. I struggled to maintain a welcoming look and avoid any sign of disgust. Patients may have birth defects or injuries that frighten others, but they should never feel that a doctor is shocked.

The patient was weeping.

“I don’t know what is wrong and I can’t get rid of this odor. It’s been getting worse for the last week and in the past few days I haven’t even been able to leave my house. Each day I have even more of this awful smelling vaginal discharge and no matter what how many times I wash I can’t make it go away.”

Typically I start by taking an extensive history, but I was not sure I could stay in the room for very long.

“Let’s start with the pelvic exam,” I suggested, “since the most important thing is to find out where the discharge is coming from.”

The patient positioned herself on the exam table, weeping quietly all the while. I prepared myself to find a decomposing tumor or a strange infection. I inserted the speculum and tried not to retch.

I saw it right away. It was an old tampon.

“When was your last period?” I managed to choke out.

“It ended about a week and a half ago. Why?” the patient replied.

“You forgot to take out your last tampon. It’s been in there for more than a week. That’s the source of the odor.”

The young woman was both relieved and embarrassed.

“You mean there’s nothing wrong with me? This will go away?”

“Absolutely!”

I carefully extracted the tampon and placed in a biohazard receptacle. I called for my assistant to remove the biohazard container and take it to waste disposal. Immediately the air in the room became easier to breathe. I cleaned out the vagina with water and was amazed to see that there had been no damage to the sensitive tissues in the surrounding area.

I waited while the patient got dressed behind a curtain. We discussed that it might take a day or more for the odor to dissipate entirely, but since there was no permanent damage, I was sure that it would be gone soon.

The patient embraced me.

“Thank you so much. I’m so relieved.”

I returned her embrace and led her to the door, carefully closing it behind her. Then I turned and vomited into the exam room sink.

My sister-in-law Sarah* passed away in February of last year after a brutal 6 year battle with ovarian cancer. She was only 49 years old and left a 9 year old daughter and husband. Her sojourn through the healthcare system illuminated both the incredible triumphs and the glaring defects in American medicine.

Ovarian cancer is a very bad disease. Because the ovaries are located deep within the body, ovarian cancer usually produces no symptoms until it has advanced to stage III of four possible stages. At that point, the 5 year survival rate has dropped dramatically, from 85-90% at stage I to 40% or less. Survival depends on aggressive treatment with surgery and chemotherapy.

The fact that Sarah survived for 6 years is a testament to the determination and ingenuity of her oncologist. Every time Sarah failed a regimen, and she failed many, the oncologist had a new regimen in reserve.

That treatment is physically grueling, but the encounters with the healthcare system that are necessary to access the treatment represent additional hurdles. Anyone who has read my previous posts knows that I am very cynical about the system, but I even I was repeatedly startled by the callousness and insensitivity of some of the incidents. I would not believe some of them had I not actually been there to witness them. One of those incidents was the meeting in which the doctor revealed to my sister-in-law that her disease had returned, was incurable and was facing certain death.

All along I was very involved in her care. I had arranged her original surgery and carefully followed her initial treatment with powerful chemotherapy. As a general matter, though, I did not accompany her to doctor’s appointments, preferring to clarify the few instances of concern by phone conversations. Approximately a year after the diagnosis, Sarah and her husband were scheduled to meet with her oncologist to discuss test results from new biopsies; she was afraid of bad news. I expected that she was going to get bad news because her new symptoms and her recent PET scan results were very ominous. I didn’t want to be there, and tried to beg off.

Sarah begged me to come. “I need you there because I don’’t understand the doctor.”

Sarah’s first language was not English, but her English was excellent and I was surprised that she thought she would have difficulty understanding.

She saw my confusion. “No, it’s not the language,” she said. “The doctor speaks too fast.”

I didn’t really understand the problem, but Sarah was so distraught, that I agreed to be there. I knew she was going to get bad news, so she deserved to have help handling it, if that is what she wanted.

Sarah was getting her care at one of the world’s greatest cancer centers. We met at the doctor’s office and waited more than an hour and a half before she appeared. The oncologist swept into the room, and with very little preamble began delivering the bad news at a rapid fire pace. I could see Sarah was confused.

“Wait a minute, wait a minute,” I said to the doctor. “I know what you are going to say, and I can’t understand you. Please slow down so Sarah can follow along.”

The doctor shot me a look of annoyance, but complied. She proceeded to tersely but slowly deliver the bad news. The biopsies showed that the ovarian cancer had returned less than 6 months after Sarah had finished rigorous chemotherapy. This was the worst possible sign. The fact that the cancer had returned so soon meant that she had failed the most aggressive chemotherapy in the arsenal. There was now no real chance to cure the disease; only a variety of treatments that might hold the cancer at bay for a few months or a few years.

The extent of the cancer’s return had not yet been established and that would help determine the amount of time she had left. An additional test was needed, and until those results were in, the doctor could not be more specific.

Sarah, already distraught, reported that she had been trying to get the doctor’s secretary to book to the test for weeks, and the secretary had not complied. Sarah did not know what to do next.

The doctor replied. “You’ve got to understand that we are very busy here. You’ll just have to wait until she gets around to it.”

“But I have cancer,” Sarah implored.

I would not have believed what happened next if I had not been there myself to witness it.

“Well, Sarah, everybody here has cancer, so you’ll just have to wait.”

Sarah burst into tears. The appointment was clearly over and the doctor moved to leave the room.

“I need to speak to you privately,” I called, as I got up to follow her out. I looked at Sarah. “With your permission, of course.” She nodded.

The doctor and I went out into the hall.

“Look,” I said, “I’m not going to ask you to cure Sarah. I know that’s impossible now.” I continued, “I don’t know how much time she has left, but for the remainder of that time could you please treat her with decency? She’s 44 years old, she has a 4 year old child, and she’s dying. Could you at least be nice?”

The doctor looked abashed. “Yes,” she said simply.

By and large, the doctor kept her word. We had a few minor incidents and only one major incident over the ensuing years. While the quality of the oncologist’s actions occasionally left much to be desired, the quality of her medical care was outstanding. She was clearly deeply invested in helping Sarah gain every additional day she could to raise her daughter. She never gave up, she never got discouraged, and she never ran out of treatment ideas, many of them cutting edge.

I have no doubt that she is a brilliant oncologist and her knowledge and commitment allowed Sarah to survive far longer than anyone’s most optimistic assessment. It’s difficult to reconcile that knowledge and commitment with the rudeness and disrespect of some of the encounters that happened along the way. In one way, though, it is not surprising. It is typical of the American healthcare system, combining brilliance, ingenuity and commitment with callousness and insensitivity.

* Not her real name

One of the most attractive aspects of vaccine rejectionism, indeed of all “alternative” health, is that no particular knowledge is necessary to declare yourself an expert. It doesn’t matter that you don’t have even the most basic knowledge of science and statistics. It doesn’t matter that you don’t have any understanding at all of the complex fields of immunology or virology. Your personal experience qualifies you as an expert. Hence Jenny McCarthy and Jim Carrey, two actors with no training of any kind in science, are touted by themselves and other as “experts” on vaccination.

As the paper The Persuasive Appeal of Alternative Medicine explains:

The person-centered experience is the ultimate verification and reigns supreme in alternative science… Alternative medicine makes no rigid separation between objective phenomena and subjective experience. Truth is experiential and is ultimately accessible to human perceptions… [O]bjective diagnostic or laboratory tests that discern what cannot be felt never replace human awareness… [A]lternative medicine, unlike the science component of biomedicine, does not marginalize or deny human experience; rather, it affirms patients’ real-life worlds. When illness (and, sometimes, biomedicine) threatens a patient’s capacity for self-knowledge and interpretation, alternative medicine reaffirms the reliability of his or her experience.

On its face, such an appeal seems ludicrous, but it provides powerful validation for people who are frightened and confused:

You don’t have to listen to experts; you are an expert.
It doesn’t matter what studies show about whether vaccines cause autism; it only matters that it seems to you that vaccines cause autism.
Your personal experience isn’t irrelevant to determining whether vaccines cause autism; it is the central, perhaps the only, thing you need to know to make a determination.

Vaccine rejectionism implicitly reflects the conviction that no particular knowledge is necessary. Both immunology and virology, the foundations of vaccine science, are extremely complex. They are not as arcane as, say, the Einstein’s Theory of Relativity, but they require years of study and a fund of specialized, technical knowledge.

Vaccine rejectionists simply ignore this point. It’s not that they claim to have any knowledge of immunology or virology. They simply behave as if such knowledge is unnecessary. Merely having a child who is autistic and has been vaccinated (against anything, at any time) automatically qualifies them to pontificate on the claim that vaccination “causes” autism. They believe that their “personal experience” of vaccination makes them as experts on vaccination, which is the equivalent of claiming that their “personal experience” of gravity qualifies them as experts on Einstein’s theory.

Vaccine rejectionists attempt to justify the lack of understanding of science and statistics, let alone immunology and virology, by making disparaging claims about the value of science itself . These are claims make by people who clearly feel threatened by knowledge. It is not coincidence that these claims have been invoked by flat-earth theorists, and creationists as well as by purveyors and supporters of vaccine rejectionism. Such claims include:

There are areas of knowledge that are not accessible to science.
Statistics cannot tell us everything about what happens.
Science tells us something different than experience tells us.
Science does not tell us the truth because it is manipulated by scientists for their own ends.
Science does not tell us the truth because it is manipulated by business people for their own ends.
There is no such thing as scientific truth.

These claims are not merely a justification of lack of knowledge; they are an affirmative celebration of ignorance. Vaccine rejectionism is not simply based on factual errors and a pervasive failure to understand basic science and statistics, as well as immunology and virology. It is also based on a denial of the need for specific knowledge and a disparagement of such knowledge. By elevating “personal experience” to the same or even higher level than actual knowledge of the relevant subject matter, vaccine rejectionism makes everyone an “expert.” Instead of imparting new knowledge, instead of protecting children, however, it merely flatters the ignorant.