state-mandated medications: a violation of parent's rights?

[Cessandra]

Ok, this isn’t about whether you have the right to refuse medical treatment when your child is seriously ill or dying. I personally think that anyone whose refusal of treatment (for any but strongly held religious beliefs) causes their child’s death or serious injury is sick. This also isn’t about whether vaccines are good or not.

The question is this. Several states mandate treatments for children such as vaccines, newborn eyedrops and Vitamin K shots, etc. Vaccines are required for entering school. Some states require that certain treatments are given to newborns before release from the hospital with or without the parents’ consent. I think that this is an accepted fact, but I could find and quote some state statutes if you like.

I find this to be abhorrent for a few basic reasons:

Not all parents are convinced of the necessity of all mandated vaccines/treatments.

I would like to use the Hepatitus B vaccine as an example. (The Hep B vaccine is required by 41 states.) According to this page:

Unlike other infectious diseases for which vaccines have been developed and mandated in the U.S., hepatitis B is not common in childhood and is not highly contagious. Hepatitis B is primarily an adult disease transmitted through infected body fluids, most frequently infected blood, and is prevalent in high risk populations such as needle using drug addicts; sexually promiscuous heterosexual and homosexual adults; residents and staff of custodial institutions such as prisons; health care workers exposed to blood; persons who require repeated blood transfusions and babies born to infected mothers…

Symptoms of hepatitis B disease include nausea, vomiting, fatigue, low grade fever, pain and swelling in joints, headache and cough that may occur one to two weeks before the onset of jaundice (yellowing of the skin) and enlargement and tenderness of the liver, which can last for three to four weeks. Fatigue can last up to a year. According to Harrison’s, in cases of acute hepatitis B “most patients do not require hospital care” and “95 percent of patients have a favorable course and recover completely” with the case-fatality ratio being “very low (approximately 0.1 percent).”…

The U.S. and western Europe have always had among the lowest rates of hepatitis B disease in the world (0.1% to 0.5% of the general population) compared to countries in the Far East and Africa, where the disease affects 5-20% or more of the population.

So, essentially, children are unlikely to contract Hep B, especially in the US. If my child somehow contracts it, your child is not likely to catch it from him. If your child does contract it, he is likely to recover. So why the mandated vaccine?

Another example would be the whooping cough vaccine. While whooping cough used to be a threat, and is still in underdeveloped countries, it is not so in modern countries today:

In 1934, more than 265,000 cases of pertussis were reported in the U.S. with nearly 8,000 deaths. Whooping cough in the underdeveloped Third World countries is still the killer it once was throughout the world in the early part of this century. However, in modern countries, such as Europe and the U.S., today whooping cough is a much more manageable disease that causes death or injury less frequently. This is due to improved sanitation, nutrition, and medical care; the use of antibiotics to control secondary infections; the employment of modern resuscitation methods to start a baby breathing again after choking; and rehydration techniques to counter the loss of body fluids from high fever, vomiting, or diarrhea.

In 1977, Britain had more than 99,000 pertussis cases reported with 23 deaths and no cases of encephalitis, which resulted in a case fatality ratio of approximately 1 in 4,300 cases. A 1985 British report placed the risk of death for infants under 1 year from pertussis at 1 in 69,000…

Today between 1,000 and 4,000 cases of whooping cough are reported to the Centers for Disease Control (CDC) annually…

The state of Washington reported 162 cases in ten months in 1984; there were no deaths, no cases of brain damage, and 49 percent of the cases aged 3 months to 6 years had been appropriately vaccinated for their age with DPT. In 1993, Cincinnati reported that 40% of children who caught pertussis were vaccinated appropriately for their age.

Correct me if I am wrong, but that says to me that kids just aren’t dying from whooping cough. Even if they do catch it.

There are other mandated treatments beyond vaccines. My son spent the first minutes of his life being given a blood test for PKU:

PKU, which stands for Phenylketonuria, is an inherited metabolic disease (also called an inborn error of metabolism) that leads to mental retardation and other developmental disabilities if untreated in infancy. With an inborn error of metabolism, the body is unable to produce proteins or enzymes needed to convert certain toxic chemicals into nontoxic products, or to transport substances from one place to another (Glanze, 1996).

According to the March of Dimes, “about one baby in 10,000 to 25,000 is born with PKU in the United States.”

Beyond my feeling that it is a bit cruel to submit an infant to a blood test for a disease that is not all that common, this test is not even reliable until the child is 24 hours old:

Experts recommend that testing for PKU should be done when the infant is at least twenty-four hours of age but less than seven days old. If an infant is tested too soon after birth, there is a chance that some cases of PKU will be missed as the phenylalanine level will not have risen yet.

I could also talk about the Vitamin K shot (I have seen no research that says that the deficiency in Vitamin K that all newborns have is even harmful or in need of correction) and eyedrops (I have a huge problem with doctors treating my child’s eyes for a disease he doesn’t even have!), but I think you get the point, and I’m sure you’ve heard all of this before.

Now I realize that sometimes, even when the probability is not extreme, it is still a good idea to protect your child from possible danger. However:

Not all parents are convinced of the safety of many mandated vaccines/treatments.

Going back to the Hep B vaccine:

Both the American Academy of Pediatrics and the federal Centers for Disease Control and Prevention recommend that all infants be injected with the first dose of HepB at birth before going home from the hospital. It is often the very first vaccination American newborns receive. They get two more shots, at an average $40 apiece, in their first year.

Critics claim this is too young, that the baby’s fragile immune system is still developing, is often harmed by the HepB shot – in very rare instances resulting in death.

Now, I did read the end of that last sentence, saying that deaths are very rare. But why would I expose my child to any danger at all if I feel that it is completely unnecessary? In other words, I do not feel that the good outweighs the potential harm.

You may also wish to read this story about a child who may have died from the Hep B vaccine.

As for whooping cough. The vaccination for whooping cough (plus diphtheria and tetanus) is DPT. From the aforementioned page on whooping cough:

The only large study ever conducted in the U.S. to determine DPT vaccine reaction rates found that 1 in 875 DPT shots is followed by a convulsion or shock/collapse episode. The rate of permanent damage or death following DPT reactions is a hotly debated subject. One study surveying 215,000 Swedish children whom had received DPT shots showed a rate of permanent brain damage or death in 1 in 17,000 children. Many vaccine authorities rely on the 1981 British study that reported that 1 in 110,000 DPT shots results in a serious neurological reaction and that permanent brain damage occurs in 1 in 310,000 shots. (These figures are often misquoted by U.S. physicians as 1 in 110,000 children. This is a significant error because a child may receive 3 to 5 doses of vaccine.)

It goes on to explain why the British study may be misleading when applied to the US (Britain may be using a less potent version of the vaccine, high risk children who are thought to be vaccinated in the US were excluded from the study…) What children are considered high risk? Well, for example, my children (who all have allergies to cow’s milk) are.

It seriously worries me that doctors may not be informing parents of the possibility that their children may be high risk, and that parents, understandably, may be assuming that any shot mandated by the state must be safe.

I understand that the PKU bloodtest probably won’t hurt my child, but it does involve a (IMHO) needless shot. And what about the unnecessary eyedrops? What unknown damage might they cause to my child’s eyes?

Politicians are not doctors. And these days it almost seems that doctors aren’t, either.

I can’t provide cites for this, so I am hoping that the Teeming Millions will either back me up or prove me wrong. But I have read in numerous places that a) it is the drug companies who push these laws through; and b) most of what doctors know about various drugs and vaccines, they learn from the drug companies. Doesn’t this sound a little fishy to you?

So, I know that I have been rather long-winded, and have mostly just railed on vaccines (and honestly, I do respect the choices of parents who have made educated decisions to vaccinate), but my point is this: When there is so much debate over whether vaccines and other preventative treatments (like the Vitamin K shot and the infant eyedrops) are necessary and/or safe, shouldn’t parents be allowed to research and decide these things on their own? It seems oppressive and perhaps even immoral of the state to force treatments that may not be necessary and may not be safe on parents who have decided against them.

Oh, one more thing. Someone mentioned to me that this is a matter of public safety, that if my kid isn’t vaccinated and he gets sick, he could spread it around. But if your kid is vaccinated, he has nothing to worry about. My choice is not endangering anyone else’s child, right?

[Guinastasia]

I would say that vaccinations are very important-I am VERY pro-vaccination.

If anything, I would think the benefits far out weigh the risks.

[grayhairedmomma]

But if your kid is vaccinated, he has nothing to worry about. My choice is not endangering anyone else’s child, right?

But what if you’re not the only one to make the choice not to vaccinate?

If your child is the 1 out of 100 to not be vacinated and subsequently becomes ill - then (assuming the vaccine is 100% effective) the other kids are fine. But what if your kid is 1/5 out of 100 to not be vaccinated and becomes ill - what would happen to the other 4 who weren’t vaccinated?

What if 100 out of 100 decided not to vaccinate and then a few kids got sick? Would we then be back up to the level of deaths/diseased persons prior to widespread use of the vaccine?

[DSeid]

I’ll weigh in as a pediatrician.

Before getting into the specifics, let’s establish some basic principles:

Under ideal circumstances two societal imperatives are in potential conflict. The first is that of individual freedom to make decisions that the majority may believe are stupid. The second is that society has an obligation to protect its members.

There is always a balance to be struck between these goals, and this balance is not always struck consistently. We mandate seatbelt use but many states do not mandate motorcycle helmets. And so on. Sometimes it is very debatable if a particular behavior should be a protected freedom or if the good of society as a whole is great enough to impose a choice upon all our members.

For most mandated vaccines the balance is clearly in the court of the benefit of imposed actions. This conclusion is inescapable because most vaccines do not provide perfect protection to an individual. Instead we rely on “herd immunity”.

if my kid isn’t vaccinated and he gets sick, he could spread it around. But if your kid is vaccinated, he has nothing to worry about. My choice is not endangering anyone else’s child, right?

Wrong. You could not immunize your kid, and likely get away with it if you were the only one not in compliance because everyone else around her was protected so there is little exposure. But conversely if enough others also didn’t immunize then even those immunized would be at risk. Despite the rantings of various immunization conspiricy theorists who constantly suggest that disease X or Y is caused by the vaccine on the grassy knoll, the safety profile of vaccines are pretty well understood; the benefits are substantial, the risks are real but small.

Pertussis (whooping cough) is a tremendous success story. Routine vaccination has made it virtually unknown now. Have you seen kids with pertussis? I have. Aint pretty. Never had one die but long ICU stay with fits of coughing leading to hypoxia aint fun. What do we know about the alleged association of pertussis vaccination and neurological problems. Well, we know that a certain number of kids develop neurological problems during the first year of life. We know that those problems would often manifest as a seizure during a high fever. We know that the old DTP commonly caused high fevers and that some kids with high fevers had seizures and that a small number of them had the onset of neurological problems follow in the next several months. Did the shot uncover the problem that was going to show up anyway or cause it? Well, we know that when hundreds of thousands of kids are given the shot with or without the pertussis component that those who got the P had more problems noted in the several days after the shot but no difference in numbers over a one month period following. Such a finding is consistent with a conclusion that the shot does not cause neurological problems but does not prove such a contention. Perhaps the reaction is so rare that a study that looks a few hundred thousand won’t show it. I can’t disprove that Santa Claus exists but current evidence leads me to doubt his existence. Officially, “pertussis encephalopathy” is a potential rare risk and even then the benefits outweigh the potential risks.

Hep B? Well, I am immunized for it and so are my kids, but I have never been convinced that the benefit meets the standard of being at a level sufficent to trump individual freedom to make stupid decisions. Herd immunity doesn’t play a role. A child isn’t likely at much risk from the disease in early childhood. The logic goes that immunizing kids when you can protects those who will be at greatest risk later on. But this is one that I feel that I should try to get parents to do, but not to mandate.

Newborn screening? Ideally used for screening for diseases which like PKU will otherwise only be diagnosed after irreversible damage has occurred, but if noted early damage can be avoided. A few drops of blood screens for multiple diseases … in some states greater than twenty. The downside is that screening for rare diseases will always reult in more false positives than true positives, causing some untoward anxiety. The upside I can tell you from my own career. It was in my residency that my state added screening for congenital adreanal hyperplasia to the panel. Intern year we’d see kids present dead. Third year they presented healthy with a positive screen, got on meds and were great.

Also from my own career is that Hemophilus influenza was a common cause of menigitis and other serious overwhelming infections. Now it is virtually unknown. I’m not that old; this happened fast.

The biggest problem is that vaccines suffer from their own success. You haven’t seen these diseases; you don’t appreciate the good that these immunizations are doing. OTOH when everybody is vaccinated some bad things, including death, will coincidently happen right after the shot. To that parent it appears as if the shot caused it.

And no, big Pharma doesn’t control the docs.

[DSeid]

For Additional Information:
U.S. Centers for Disease Control
National Immunization Program offers answers to common questions.
CDC Information Hotline: (800) 323-2522. (also cdc.gov)
The American Academy of Pediatrics answers common questions and provides its recommended childhood immunization schedule.
Health Canada: Laboratory Center for Disease Control
The Immunization Action Coalition, whose mission is to increase immunization rates, offers childhood and adult immunization information and answers questions by email.
The Immunization Gateway: Links to many other authoritative sites.
Immunization Newsbriefs: Online and e-mail newsletter from the National Network for Immunization Infoirmation
The Vaccine Page: Vaccine news and a database
Healthy People 2010: Surgeon General’s goals for immunization
Immunization: The Inconvenient Facts: A science-based response to Viera Scheibner.
National Institute of Allergy and Infectious Diseases: Jordan Report 2000: Accelerated Development of Vaccines
National Network for Immunization Information
Vaccine Education Center (Children’s Hospital of Philadelphia)

[DSeid]

A single excellent site is the AAP one, http://www.cispimmunize.org/resear/rsh_main.html
Lots else can be linked to through it.

[DSeid]

And the full address for the cdc resources is www.cdc.gov/nip

[MsRobyn]

In Texas, anyway (I can’t speak for any other state), parents do have the right to opt their children out of required vaccinations and testing. In fact, the hospital where I’m planning to deliver explained the process and told us how to get the paperwork, should we be so inclined. So, it’s really not a violation of anyone’s rights.

And, as DSeid said, newborns are treated and screened for so many diseases that any parent would have to be either a nurse or an MD to make a truly educated choice for their child. And how many people can say they can read a medical journal and really understand what they’re reading, assuming no or minimal medical education?

Finally, I’ve had the misfortune of burying a child who died of a disease that is now routinely screened for (Group B Strep infection, which is screened in the mother before labor). It may have been my “right” to refuse the screen, but to do so would be at either my expense or the expense of my baby. Given that a drop or two of blood and a small heel stick can screen for any number of diseases that are possibly fatal or that may cause damage to my baby, I’m going to do it.

The life of my child is NOT worth exercising any “rights” I may think I have.

Robin

[doreen]

Cessandra,
Just want to point out that most of the immunizations aren’t **absolutely ** mandatory. Most states will allow an exemption for medical or religious reasons , and since the only times my children’s records have been checked was when registering for school or camps (group settings), I suspect that if I had home- schooled immunizatons wouldn’t have been an issue.

[Qadgop_the_Mercotan]

DSeid, you rock! Thank you for your succinct and on-target comments!

I remember as a resident caring for a 7 month-old with pertussis. The parents had fallen behind on vaccinations because every time she had a runny nose or was irritable, they declined to get her shots, and her doc didn’t push. She spent 6 weeks in ICU with coughing jags and hypoxia. Day after day her mother hovered by her, and pushed the oxygen mask onto her face when she went into a coughing spasm. It was ugly. She lived, and hopefully has done fine (I don’t know if those hypoxic episodes killed any critical brain cells or not), but it was hell for her parents and everyone watching and helping.

[Guinastasia]

Plus, there are countries in the world that don’t have the vaccinations we do.

Polio in America is virtually unheard of. But at my college, we had an exchange student from Rwanda who walked with a pole because one of his legs had been crippled by polio as a child. Someone my age. That was somewhat sobering, at least to me.

[beagledave]

What about the varicella vaccine?

There was an interesting discussion about this over at Fathom a few months back. See here for a discussion about mandatory vaccines…

and here for a discussion of the chicken pox vaccines in particular.

The issue is a bit more complicated because of the unknown length of efficacy for the vaccine…some in the medical community worried about whether this vaccine would shift the disease to the young adult population (early 20s) .

FWIW, I fall on the pro varicella vaccine side…but am watching with interest how others react.

[dangermom]

Just to clear up one item about Hep B-- I had also read about the shot being given at birth, and it concerned me. I was willing to get the vaccine, but not right at birth. I discussed this with the pediatrician (before the birth), and it turned out that in California at least, the vaccine is no longer given at birth. She was happy that I had looked into it and asked about it, I was happy to know, and all was well.

As for screening for rare diseases, I think it’s a good thing that we can now catch some of these disorders before they cause real damage to the child. A woman I know lost her first daughter through something like that, and I’m glad others won’t have to.

I have to say that I am quite pro-vaccines, and concerned about the number of parents who decline to get them. Pertussis is becoming more common in my state, and many kids are suffering needlessly. We have acquaintances who didn’t have their children get all their shots, which is their choice–but I notice that they’re depending on everyone else to do it, so that their kids will never be exposed to the diseases. It strikes me as opting out of a kind of social contract–taking the benefit of a vaccinated population, while passing the risk involved on to others.

[WV_Woman]

Re: the PKU blood test.

They take a little tiny sticker thingy and poke the baby’s foot on the heel. BIG WOO!

It doesn’t hurt.

And you’re damn skippy that if your kid DOES have PKU, you would want to know FAST, so you don’t feed them the wrong things.

WV_Baby had the Varicella vaccine. I am not clear if it is supposed to keep kids from getting chicken pox altogether, or if it will just lessen the severity. Either way I was glad for her to have it. I was out of school 2 months when I had chicken pox and I’ve got scars all over my upper arms from it.

[DSeid]

Regarding the chicken pox vaccine …

I am on record having questioned the decision to go after childhood chickenpox from back when the recommendation first came out (see my letter in JAMA from 1998, http://jama.ama-assn.org/issues/v279n13/ffull/jlt0401-6.html … I think that my letter is the only published concern of “some in the medical community …”).

I would have preferred a strategy that went after those at highest risk only (such as teenagers, adults, and compromised children) and left low risk childhood chickenpox alone. Nevertheless, I currently support mandated chickenpox vaccines with no contradiction …

The reason is that most kids are now being vaccinated by choice and incomplete herd immunity is kicking in. Therefore a child who is not immunized is currently unlikely to catch childhood chickenpox (low risk for serious complications) and is at risk to reach adolescence and beyond totally unprotected and in a world where there is enough chickenpox left that they may very well still catch it sometime over their adult lifetime (high risk for serious complications). A small increase in adult disease is a significant increase in morbidity and mortality. So we need to go for broke and aim for near total compliance. Will the protection wear off in a world in which individuals’ immune responses are not boosted by re-exposure to natural disease (“the environmental booster effect”)? What will happen to the rate of adult shingles? Will adult varicella vaccination end up being advised? These are questions that will need to be answered with long term follow-up studies. Odds are that immunization will wane but that adult disease will be less severe than it currently is by virtue of some residual immunity and that adult vaccination will eventually be advised … but that is just my personal educated guess. I believed (and argued) that going after childhood chickenpox was not worth the risks of actually shifting the disease into adults when most of the benefit could be achieved without the risk and at a fraction of the cost … but it is too late now, so we have to do our best to make it work … which means getting close to 100% compliance.

Qadgop, thanks for the kind word. It is true that a smaller percent of kids with pertussis die in today’s world … intensive care practice has come a long way since the heyday of whooping cough. But as you well describe, the morbidity is horrific.

[Primaflora]

If you couldn’t opt out then I think it would be a violation of parents’s rights to make an informed choice but the mechanisms are there to choose not to vaccinate. I don’t agree with MsRobyn that you need to be a hcp to make an informed choice.

My kids are not vaccinated and until the murky waters around children with autism and vaccination are clearer then they won’t be. I’ve made an informed choice which has also included a lot of agonising over which is the risk I prefer to run for my kids. I’m well aware that I am relying on herd immunity. My kids have caught precisely no diseases which can be immunised against in their lives. That’s scaring me as well as so many of these conditions are much worse in adulthood.

[MsRobyn]

Primaflora, what I meant was that in the US, newborns are screened for so many diseases and vaccinated for so much that if the parent wishes to make a truly well-informed decision, one almost needs to be a hcp to be able to sort out all the information available to make the best choice.

I happen to live in a part of the country where herd immunity is not always reliable. It’s a fairly religious area where enough parents don’t have their kids immunized for religious or social reasons that transmission of childhood diseases is a real possibility. Since I can’t trust that Johnny and Susie are immunized, I have to make sure that Aaron is.

Robin

[DSeid]

Primaflora, I’d be more than happy to discuss the concerns that you may have about autism and the MMR. The short version is that the allegation has been throughly disproven and was a bunch of hoo-ha to start with. (More details than you’d ever want to hear available upon request) But I think the ethics of your tactic make for better GD fodder …

So you think that a particular action (the MMR) is beneficial as long as most do it (herd immunity) but has some possible “cost” involved (the unfounded allegation of increased risk for autism) and your solution is to let everyone else burden the potential “cost” and you will sit back and reap the benefit, knowing that by so doing you incrementally increase the risk of disease to others?

Such ethically bankrupt decision making makes a strong argument for mandated vaccines.

[IzzyR]

Along these same lines:

Doctor Says Woman Should Allow Medication for Her Son to Save His Sight, Files Complaint

FORT LAUDERDALE, Fla. (AP) - A doctor filed a medical neglect complaint with state child care workers, saying a woman won’t let her 11-year-old son take a medication that could save his eyesight.
Dr. Barry Waters said he and the boy’s eye specialists recommended the child take methotrexate for an arthritis-related eye disease.

But the boy’s mother, Margie Lacre, decided it posed too much of a risk of side effects, including lung and liver damage, said Waters, an arthritis specialist.

---

*Originally posted by WV_Woman *
Re: the PKU blood test.

They take a little tiny sticker thingy and poke the baby’s foot on the heel. BIG WOO!

It doesn’t hurt.

Based on personal experience I would dispute this. I had to participate in my son’s PKU test, and it is grisly. They poke the kid in the heel to draw blood, but have to draw a certain amount, so they squeeze and squeeze the blood out of the poor baby, who is howling bitterly.

(What was even more painful in my case was the fact that my son had to undergo two of these tests. Back when he was born, insurers were chucking kids out of the hospital after a one day stay, which resulted - in this instance - in the child checking out of the hospital after less than 24 hours. At which point a PKU test is not reliable. But state law (NJ) mandated tat the hospital administer this test to all newborns before releasing them, so he suffered through a completely useless test, and then had to go through it all over again at his pediatrician’s office.)

[Primaflora]

::sigh::

OK I’ll take my ethically bankrupt morals away and go in the garden and eat worms.

DSeid, I’m sure that we could get into a war of cites. The issue is that I look at that information and on a personal level and I am not convinced that the final answer is in on this issue. Ethically I don’t feel that I can decide on behalf of my kids to run a risk which I perceive to be there for them. I watched one kid go from absolutely NT to full on autism after he had salmonella. I’ve heard all the arguments from paeds that he was going to develop autism in any case and they may well be right. I don’t know. But the perceived link between gut damage and autism is there for me. I’ve watched him recover on a gluten free diet to the point that a developmental paed told me he believes the child will be fully recovered in the next couple of years. And, no the paed doesn’t believe that the salmonella or the gluten free diet has done anything but he can see the recovery. Autistic kids are not supposed to recover.

Tony Attwood (tonyattwood.com.au) is in the Brisbane paper this weekend saying he suspects a link between the MMR and autism.

It’s a deeply confusing time to be a parent of autistic kids and be making these decisions. I suspect it’s a hell of a lot easier to be sitting there as a paed.