Thursday, February 08, 2007

Think it's your body, your choice? Think again...

NOTE: For a quick rundown, list-style, of the basic facts of HPV, cervical cancer, and current HPV-vaccines on the market, please also read my post, Cure cancer with a single shot?!? 1 in 4 infected?!?

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 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

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Thailand Gal said...

Very good post... and good points! It's frightening to think that doctors or anyone else can use intimidation to get their way on any health issue. The threat to call CPS is completely unethical, bullying and is the kind of strong-arm tactic that should never be allowed.



ginabeaner said...

Thank you for listening. Thank you for sharing this with others in a much better way than I ever could. I am way to raw and too angry.

Those ads make me ill. Too many think it is a vaccine against cancer (it isn't) and who doesn't hate cancer?

jen said...

um, WOW. I would have reported HER. And stomped on her foot.

How dare she take that approach?

And what a good and thoughtful mom you are, Julie.

Christina said...

She wanted to report you for refusing a vaccine? Wow, that's crazy.

I know what you mean about sticking with a doctor even after you don't think he/she is the right one. When Cordy's first nurse practicioner left the practice, I accepted the new doctor they brought in.

But he had no sense being a pediatrician, because he had no bedside manner with her. He never gave her a chance to warm up to him, so every visit involved her screaming her head off, terrified of him.

He left the practice a year later, and the new doctor they brought in seems good so far. But she has a lot of ground to make-up with Cordy - who now is terrified of any doctor's office - and she tried hard at the last check-up to help Cordy feel comfortable. There was still crying, but it wasn't as bad. And she really sat and listened to me, which I appreciated.

You're right - we are the best advocates for our children's health, sometimes even better advocates than the professionals. And we should take it seriously and keep ourselves educated about issues that affect their health.

Mrs. Chicky said...

Wow! That's horrible that you had to go through that with your daughter's pediatrician.

I personally don't like the idea of a mandatory cervical cancer vaccine for nine year old girls. It just doesn't seem right to me.

Her Bad Mother said...

Wow. See, I knew very, very little of this. Those 'vaccine against cancer' ads are pretty slick, and pretty convincing.

Thank you for sharing what you know.

RachyBriggs said...

what a great post!

I had all sorts of problems with vaccines, my son was five weeks early as I had bad pre-eclampsia - he was only 4lbs 3oz when he was born! So when it came to his jabs, he was still tiny. I know it's a different system in the UK, but I had the same type of "bullying" from the healthcare nurse, it was awful. In the end, I paid around £400 privately to get my son vaccinated so he had M, M and R seaprately - I was told I was irresponsible etc etc. I delayed his meningitus jab for about two years too. No account was taken of how tiny he was, and yet they wanted him to have to same dose as a big normal sized baby. It is every mother's right to make an informed choice, and not be made to feel as if they're are doing something wrong. Surely the healthcare professional should work with parents to discuss options, whilst recognising they are intelligent enough to have reasearched the topic and made an informed view?? Makes my blood boil! Must have a chocolate biscuit and calm down!!

kim said...

The chicken pox shot was required by our state to attend school. My children are immune, but of course I can't actually prove that they are. It made me furious to be forced to let my children have a vaccine that they didn't need and is so ineffective as it is.

Once again I learned something new because of your blog. Thanks for the useful information about the HPV vaccine.

I think health care professionals are not used to having patients as informed as they are today. I now move on to the next doctor if my questions are resented or dismissed.

It's important to have people like you watching out for your family and then spreading the word for others.

luckyzmom said...

I applaud your well researched post.

My daughter is 35. She came down with the mumps the morning I went to the hospital to give birth to her brother.

We were Air Force and moved a lot. And everytime we registered her in a new school we had trouble with her not getting the mumps vaccine; even her senior year in high school.

"OK if you say so" has never been good enough for me and I am amazed at how many people do not investigate as you did. I investigate so much that I have had doctors ask me if I was a nurse!

We should somehow band together as bloggers.

mhatrw said...

In medical cost vs. benefit modeling (which strongly informs national medical public policy making and far too strongly informs the medical policies of HMOs), the most critical component is a value called "cost per life year gained."

If the cost per life year gained is under $50,000, that is generally considered a decent investment by US medical policy makers. If "cost per life year" gained is over $100,000, that is generally considered a wasteful medical policy because that money could surely be put to much better use elsewhere. Yes, this is cruel and heartless to some degree, but wide scale medical cost allocations do need to be made and, more relevantly, are continually made using these cost plus risk vs. benefit analyses. Think HMOs. Now consider why pap smears, blood tests and urine tests aren't recommended every month for everyone. Testing monthly could definitely save more than a few lives, and there is no measurable associated medical risk. But the cost would be astronomical versus the benefit over the entire US population when comparing these monthly tests to other therapies, procedures and medicines.

Now on to GARDASIL. By the time you pay doctors a small fee to inventory and deliver GARDASIL in three doses, you are talking about paying about $500 for this vaccine. And because even in the best case scenario GARDASIL can confer protection against only 70% of cervical cancer cases, GARDASIL cannot ever obsolete the HPV screening test that today is a major component of most US women's annually recommended pap smears. These tests screen for 36 nasty strains of HPV, while GARDASIL confers protection against just four strains of HPV.

Now let's consider GARDASIL's best case scenario at the moment -- about $500 per vaccine, 100% lifetime protection against all four HPV strains (we currently have no evidence for any protection over five years), and no risk of any medical complications for any subset of the population (Merck's GARADSIL studies were too small and short to make this determination for adults, these studies used potentially dangerous alum injections as their "placebo control" and GARDASIL was hardly even tested on little kids). Now, using these best case scenario assumptions for GARDASIL, let's compare the projected situation of a woman who gets a yearly HPV screening test starting at age 18 to a woman who gets a yearly HPV screening test starting at age 18 plus the three GARDASIL injections at age 11 to 12. Even if you include all of the potential medical cost savings from the projected reduction in genital wart and HPV dysplasia removal procedures and expensive cervical cancer procedures, medicines and therapies plus all of the indirect medical costs associated with all these ailments and net all of these savings against GARDASIL's costs, the best case numbers for these analyses come out to well over $200,000 per life year gained -- no matter how far the hopeful pro-GARDASIL assumptions that underpin these projections are tweaked in GARDASIL's favor.

Several studies have been done, and they have been published in several prestigious medical journals:

None of these studies even so much as consider a strategy of GARDASIL plus a regimen of annual HPV screenings starting at age 18 to be worth mentioning (except to note how ridiculously expensive this would be compared to other currently recommended life extending procedures, medicines and therapies) because the cost per life year gained is simply far too high. What these studies instead show is that a regimen of GARDASIL plus delayed (to age 22, 25 or 28) biennial or triennial HPV screening tests may -- depending on what hopeful assumptions about GARDASIL's long term efficacy and risks are used -- hopefully result in a modest cost per life year savings compared to annual HPV screening tests starting at age 18.

If you don't believe me about this, just ask any responsible OB-GYN or medical model expert. If anyone wants the references, I can provide them.

Now, why do I think all of this is problematic?

1) Nobody is coming clean (except to the small segment of the US population that understands medical modeling) that the push for widespread mandatory HPV vaccination is based on assuming that we can use the partial protection against cervical cancer that these vaccines hopefully confer for hopefully a long, long time period to back off from recommending annual HPV screening tests starting at age 18 -- in order to save money, not lives.

2) Even in the best case scenario, the net effect is to give billions in tax dollars to Merck so HMOs and PPOs can save billions on HPV screening tests in the future.

3) These studies don't consider any potential costs associated with any potential GARDASIL risks. Even the slightest direct or indirect medical costs associated with any potential GARDASIL risks increase the cost per life year gained TREMENDOUSLY and can even easily change the entire analysis to cost per life year lost. Remember that unlike most medicines and therapies, vaccines are administered to a huge number of otherwise healthy people -- and, at least in this case, 99.99% of whom would never contract cervical cancer even without its protection.

4) These studies don't take in account the fact that better and more regular HPV screening tests have reduced the US cervical cancer rate by about 25% a decade over the last three decades and that there is no reason to believe that this trend would not continue in the future, especially if we used a small portion of the money we are planning on spending on GARDASIL to promote free annual HPV screening tests for all low income uninsured US women.

5) The studies assume that any constant cervical cancer death rate (rather than the downward trending cervical cancer death rate we have today) that results in a reduced cost per life year gained equates to sound medical public policy.

As I said before, if any of you don't believe me about this, please simply ask your OB-GYN how the $500 cost of GARDASIL can be justified on a cost per life year gained basis if we don't delay the onset of HPV screening tests and back off from annual HPV screening tests to biennial or triennial HPV screening tests.

The recommendations are already in:

The USPSTF strongly recommends ... beginning screening within 3 years of onset of sexual activity or age 21 (whichever comes first) and screening at least every 3 years ...

Mary-LUE said...

A lot of this post resonates with me. I've been known to interview a doctor (three before I settled on an OB when I was pregnant with my daughter) and wanting to have a doctor who will l-i-s-t-e-n is essential.

My daughter had two febrile seizures in five months and so the doctor gave me a protocol (usage?) to follow any time she had a fever. I was to alternate Tylenol and ibuprofen and give her a pediatric suspension formula of Valium because it is an anti-convulsant. I was understandably concerned any time she developed anything that might require antibiotics and so she ended up going to the doctor's far more often than if she'd not had the seizures. Sometimes I ended up in the urgent care and the PA or doctor on duty would often contradict what my doctor had told me to do.

Now, I understand there are different ways to handle the situation I found myself in but I was upset that these medical personnel would contradict one of the doctors and spend time telling a mother who was already stressed out that what her doctor had told her wasn't necessary or to try this, that or the other instead.

I talked to my doctor about it and simply told him that I was concerned about my daughter's continuity of care. And he agreed with me. He told me that I was to make sure she saw him during the day even if his appts. were all booked. He told me to tell them at the urgent care that he was supposed to come and sure enough, he did that on a few occasions.

This is also the same doctor, who when I went to him with PMS issues, would have just given me a prescription for birth control pills or an anti-depressant, standard responses to PMS. I had researched taking progesterone cream though and said I would like to try that first. No problem. He gave me a prescription and directed me to a compound pharmacist.

Because he has taken time to listen to me and has worked with me as in the examples above, I am much more likely now to listen to him. When he wanted to do an MRI on my noggin because of a change in my migraines, I resisted but he expressed clearly why he thought it was necessary and so I did it. We've now been with this doctor for over six years.

Goodness, there I go again, blathering on and on and I haven't even touched on the whole vaccine issue. Thanks, though, for putting all that info. out there. It is good to know more of the facts and I think I would tend to agree with you on your point of view here.

Julie Pippert said...

Wow, you guys are AMAZING.

mhatrw, that is a staggering amount of really useful information. Thank you SO MUCH for the time you took to present that. I'm definitely interested in following your links and learning more.

Thank you to everyone for your thoughtful comments, excellent points, personal stories, additional information and comments.

Luckyzmom, you start it, I'll back you up. :)

Mayberry said...

What a horrifying story. You're obviously an amazing advocate for your kid and it's incredibly discouraging to hear that a doctor would respond in that way.

Thanks for visiting my blog -- I'll be back to see you again!

Julie Pippert said...

Mayberry, thanks for that! I do try to advocate for them.

NotSoSage said...

Julie. Excellent post. I could go on for days...but it's late, and I shared a bed with Mme L last night. For the last time. I have never been kicked so hard or so often in my life.

I can't believe that paed put you through that. I've heard horror stories like this before. Our doctor is amazingly understanding. One appt Joe went to without me and it happened to be another doctor, who started giving him sh*t and he didn't know what to do...I was so angry.

I have not shared my family's stories of trials and tribulations with health care professionals largely out of respect for people who wouldn't necessarily want this stuff posted online, but I'm so glad to read this post because it's an important thing for people to read. You should print it and send it to the College of Physicians and Surgeons. Seriously. When, for instance, will physicians realise that the people suffering the condition know more about it, in a lot of cases, then they do?

Mimi said...

Wow. Just came over from Mad Hatter's. I applaud the conscientiousness with which you guard your daughter's health, and navigate the health care system for her. I am horrifed about the CPS thing. Wow.

Kyla said...

I cannot believe the doctor did that to you! How completely childish. I've had an inept luckily I have an excellent one, we have excellent communication and I do trust her judgement, but I do my homework as well.

Great post. (PS: are you in TX?)

melissa said...

Thank you for the info!
I just recieved a call from my daughters Dr. that if I do not want the varicella vaccine for her(and she has to have it to attend public school here in NC)THEN I have to take it up with the STATE-not the school district, the STATE!
I am appalled and in a bit of a quandry
My husband was "let go" from a job because he could not produce proof of an immunization he HAD recieved and refused to get again(Rubella)This happened only last year also in NC
My Dr. is understanding, though and will wait for our decision with no threats!