In another arena of my ongoing effort to live consciously, I like to be informed about health, health care, and health care options, particularly when it comes to my children. Therefore, when I see a doctor, I ask for time.
I want time to talk about the whole situation, not just the current most pressing symptom. I want time to explain why I am asking to explore this or that possibility. I want suggestions about where to go to research issues and treatments.
Most of the time it is a struggle to do this, because I am tired, stressed, distracted, in a rush, etc. Nevertheless, I make myself stop, think, and engage.
I feel an even greater responsiblity for my children's health care than I do for my own. It's their body, but for now, I am their advocate.
I feel my responsibility keenly. I know I can't be perfect, but I want to know I tried my best.
I spend time researching and learning.
I don't think this is unusual. I don't think this is much different from what any mom does. I think, actually, it is very typical.
Like many moms, I don't simply choose any doctor. I like to get a series of names, and prefer to interview them beforehand to ensure a personality match. I need to be sure this is someone who will listen to me, and work with me.
We need to have a good match of ideas and working styles. I consider myself a partner with the doctor, rather than merely a chaffeur who drives the children or an accountant who pays the bills.
Unfortunately, this isn't a sure thing. I've made mistakes. Sometimes I've inherently trusted a recommendation without checking, or simply made the wrong decision after meeting the doctor.
Once you're in, it's like a committed relationship. It's not that easy to leave. I always want to try to work it out.
That's why I stayed with my first daughter's pediatrician for a year, even though I saw red flags going up by month three, and was full on unhappy by month six. But continuity of care is a key to successful health management. And my daughter struggled with health issues. We'd had a couple of hospitalizations, and I was wary.
One hospitalization was due to a massive reaction to one of those supercombo vaccines they give. I think I'll always wonder what possible long-term effect all of that will have.
After that experience, I decided we needed to go about this personal and public health protection plan a bit differently. I set about researching all the information. I contacted the CDC directly. Spoke with immunologists. Interviewed nurses. Read Web sites. Spoke to parent support groups. Checked in with my insurance company. And so forth. Ultimately, I came up with an individual vaccination plan and schedule.
Despite huge resistance from the pediatrician---who claimed the vaccination was still worth the risk (now a known risk, not a theoretical risk) to my daughter's life---we implemented my new schedule. For every roadblock she threw up (insurance won't pay, for example) I had a counter, "They will. I've checked. And I'm willing to pay any difference. You have a signed document to that effect."
She began fighting me on everything. Looking back, I see it was a power struggle. She was fighting to be In Charge, in Total Control. It was an insecurity on her part, her failure. She should have understood that a parent, a patient, is a partner in health care, not a passive rider, and can be a key component to successful healthcare.
But she didn't.
It shouldn't, then, have been a surprise, when we had the Great Varicella Vaccine War when Patience turned one. But it was. A shock, more like.
She was already furious that I had opted to delay the MMR until 18-24 months (depending upon my daughter's health at the time...I won't vaccinate a sick child...and I have good reasons for that). She'd argued furiously with me over it. I stood firm.
So when she came in with the varicella vaccine after I said I wanted to delay that until at least 2 as well, the Battle Royale commenced.
Back and forth we went. I had sheafs of documentation, studies, uncertainties. I said the vaccine was too new. Long-term efficacy was unknown. I felt partial immunity was a greater risk to my daughter, especially if she was at risk as an adult, or worse, a pregnant adult. I was not permanently opposed to the vaccine, but from what I had read, I was 100% sure I wanted a little more time for research.
She showed me photos of chicken-pox ridden children. She pointed out pain and high-fever. She told me risks of brain damage, and shingles. Pain, horror, pain, horror, pain, horror. She went on and on. She said this vaccine was 100% efficacious (it's not) and told me my concerns about a later need for a booster were ridiculous (it's not, within a year they were already calling for one, maybe two boosters).
I understand, I told her. I don't want this vaccine today, I said. I appreciate your concern, I concluded, but I have decided to wait and check further into this.
I thought I was being reasonable. I thought it was my choice. I thought it was my judgment. I thought the parent had the right to choose health care for her child. I thought I got to decide what the best health care was.
I thought wrong.
She called me neglectful. She said I was abusive. She said she was calling CPS to report me, and the state. She said she was going to get the right to treat my daughter how she wanted instead of going along with all my crap.
Her nurse picked up the phone.
"I will call," the doctor said, deadpan. "I'm not bluffing. I will call and they will take custody of your daughter, investigate you, and I get control of her health care."
I felt numb. Shock and fear---the possibility of losing control over my daughter's health care completely, and even worse, possibly losing my daughter---were hitting me like a freight train.
"You couldn't," I said, stunned, "They wouldn't even do this. It's not neglect. You just disagree with me!"
"I'm not kidding," she repeated, "It's SOP. I'll report you."
I sat silent. My mind whirled, my stomach hopped between my throat and my feet. My daughter struggled in my arms to get down, and I couldn't let myself set her down. I looked at my papers, considered all my positions. All the things I had prepared to say, all the polite refusals, all my convictions melted pitifully in the face of my fear.
I had not, could not have, anticipated this.
I really, truly had always believed that it was ultimately our choice. My body, my child, my choice.
No matter how erroneous it was, she was so determined to be In Control, she'd put a family through hell to prove herself Right.
I buckled, crumpled more like. I sobbed as they injected the vaccine into my daughter. I hated that doctor, but I hated myself more. I never saw her again. But I carried that anger, and guilt, for years.
So it is no surprise to me the fury I feel as the debate rages over Governor Rick Perry's executive order that all girls receive the HPV vaccine before sixth grade. Legislators and citizens alike decry his action, cite studies, research, and information, and he stands firm. He will not discuss, or rescind, his order.
This was playground conversation yesterday.
"What's the big deal?" one mom asked, "It's all for the good, and anyway, they have an objector form you can fill out."
Another mom and I looked at one another. I saw in her eyes that she, too, had been down this road.
"It's not that easy," I said, "They won't like it. They'll try to punish you, threaten, pressure, and that is IF, a big IF, you get permission to not get the vaccine."
She was skeptical. She still believed it was a choice.
I shared my Great Varicella Vaccine War story. I concluded with, "And she would have, she would have called CPS on us!"
The other mom chimed in, "Julie isn't kidding. My doctor's called CPS on me about our vaccination schedule three times. We've been investigated each time. They never find anything wrong of course, but we've got a record now."
Is this where we are now?
Does the state really have a greater right to our body than we ourselves do?
And if we opt---usually for good reason, with sound back-up---to a slight difference from the assembly-line medicine typically practiced, do we deserve the threats, pressures, and actions taken against us?
When I said, "The truth is, they can harass you with reports, and schools can refuse to admit your child."
People, more than one, yes, have replied, "Well, you choose to vaccinate differently, they have the right to deny your child."
What this attitude---knowingly or not---really means is: that's the CONSEQUENCE of your BAD DECISION.
Making a different health care decision isn't a bad decision that needs a logical or natural consequence.
I am conscientious about health care, and this means at times I object to a pat answer, especially when I suspect the motivation isn't in the best health interest of my children.
And that is exactly where I am about the HPV vaccine. After my last post about the HPV vaccine, an alert reader who also happens to be one of my authors and a good friend, sent me some more information about the vaccine via a link to an article.
It echoed a lot of information I'd already read, such as:
* there are hundreds of forms of HPV, and the majority of people (statistics say 80%) have come into contact with it, or come down with it, at one point or another.
* the HPV vaccine only covers two strains which are believed to cause about 70% of cervical cancers
* The US National Cancer Institute says that direct causation has not been proven (between HPV and cancer) (See research by Duesberg and Schwartz, review this article exploring cervical cancer and the HPV vaccine, read this op ed piece with links, quotes and information)
* Most experts believe that HPV is one factor in cervical cancer but is not the causation of it because all cases of HPV do not lead to cancer
* the risk of developing cervical cancer in the US is 0.75% and lifetime risk of dying from it is 0.25%
* The Alliance for Human Research Protection (AHRP) states the vaccine has not been proven safe and effective in clinical trials, and reveals that it uses 225 mcg of aluminum
I read the Phase II study of the efficacy of Gardasil. This is a good resource to read if you want.
This is the bottom line:
"Although the study was not originally designed or powered to assess vaccine efficacy on the disease endpoints separately, efficacy of the investigational vaccine against cervical pre-cancers caused by the HPV types 16 18, 6 and 11 was 100 percent."
"Adverse events related to the injection site were higher among those who received Gardasil compared with placebo recipients."
At the end of the day, I surmise that what this vaccine does is lower the risk of HPV viruses combining with other factors to potentially cause pre-cancer or genital warts.
That's good. I believe the researchers mean well with their studies and with this drug. I believe the intent is good, and the results might be good too. In the right case, for the right person, under the right conditions, with full knowledge of the potential limitations and risks of Gardasil.
However, I don't think that's what people know about this. I believe many people learn from TV and ads. They do, I'm afraid. Ads and quick news soundbites (made as sexy as possible to grab attention) trumpet this as a vaccine against cancer. Merck is awfully glad of this, but I'm not.
I think the news, ads, and misunderstanding have created misinformation that if you get HPV, you'll get cancer and die (unecessary level of fear) and TA-DA! this vaccine will completely prevent that from happening (irrational level of false confidence).
As Helen Lobato wrote:
So with cervical cancer causing about one percent of all cancer deaths in women and with the causation in doubt, not to mention the lack of safety displayed by the vaccine trials we need to ask why parents are being urged to get their young daughters vaccinated with Gardasil.
As much as I respect medical professionals, I believe we can't solely look to our doctor and blindly rely on his or her advice, not in this matter at least, but generally not in other matters, either.
Doctors are just as rushed as we are. They are professionals who do their best. But if you feel overwhelmed by constant streams of new and crucial information, consider doctors. Health news is ongoing and constant.
While this is great, it creates, in my opinion, a dilemma for doctors, who need to both (a) keep up with all of the information, disseminating what is relevant and important from what is not, and (b) spend adequate time working with and treating patients. How many hours in a day again?
This is where I come in. This is why my conscious health care approach is crucial to both me, my children, and my doctor. My doctor is a medical expert, very knowledgeable, capable and experienced. I trust her. I depend upon her medical expertise. And she depends upon me to be a helpful and informed care partner.
For example, one time, my doctor was unaware that in some cases a medication caused persistent constipation. As we tried every remedy under the sun to help my poor daughter who was in pain, I finally asked about the medicine she was on. "No, no side-effects like this...it must be some bowel obstruction or problem," the doctor insisted. Right before we put my daughter through complicated, costly and possibly painful tests, I called the drug manufacturer who confirmed that in pediatric patients, extreme and persistent constipation was a common side-effect. We took my daughter off of the medicine, and her problem cleared up. My doctor had only been educated about common side-effects for adults, despite the fact that she was a pediatrician. The drug company didn't publish widely the pediatric side-effects. They faxed the pediatric side-effects only after receiving a request. My doctor was stunned, and about as upset as I was.
The difference between me and my doctor was not about commitment to quality of care or level of concern. The difference was simply that I had *one* patient to worry about while she had hundreds.
I know my daughter, her body, and her life. As I do for myself. As personal experts on ourselves, and as the patients, we must partner with our health care providers for best possible care. At the end of the day, we must live with the results, and so ultimately, I believe we need to make the final decision.
That should be respected. That should be supported. It shouldn't bring threats, pressure or punishment. And that right shouldn't be circumvented by special interests that are also circumventing regular and available avenues of a democratic government.
copyright 2007 Julie Pippert
Tags: Texas Governor Rick Perry,Executive Order February 2, 2007,Merck Gardasil HPV vaccine, link between cancer and HPV, effectiveness of HPV-Vaccine/Gardasil, right to make health care choices,