Children’s Healthcare Is a Legal Duty, Inc.

Box 2604 · Sioux City, Iowa 51106 · Phone 712-948-3500 · FAX 712-948-3704

E-mail: childinc@netins.net · Web page: http://www.childrenshealthcare.org

 

 

April 11, 2003

 

Patricia Nault, M.P.A.

Health Program Manager

Alaska Turning Point Coordinator

Alaska Division of Public Health

P.O. Box 110618

Juneau, AK 99811-0618

 

Dear Ms. Nault:

 

CHILD, Inc. is a national non-profit membership organization, which advocates for better health care for children.  As such, CHILD’s goals coincide with those of the Turning Point Public Health Statute Modern­ization Collaborative.  We have concerns about the Model State Public Health Act and offer an argument for equal protection of children fol­lowed by discussion of how to achieve such protection with specific public health measures and a summary recapitulating our recommendations.

 

I.  Equal Protection for Children

 

CHILD is concerned that the draft Model Act allows religious and philo­sophical exemptions from health care of children.  The guiding principle at Article V Section 5-101[b](7) recommends a blanket exclusion from all testing, screening, treatment, and vaccination of children whose parents object to it on the basis of “sincere religious, moral, or philosophical beliefs.”  Article V Section 5-106[b](1) provides that no test, exam, or screening of children can be done without informed consent of parents.  Section 5-106( c) of the MSPHA provides that testing and examination may be compelled only when an individual poses a risk to others.  Article V Section 5-109[h] provides religious and philosophical exemptions from vaccinations for children.

 

Such provisions excluding some children from important health care guar­antees are morally and legally problematic.  In addition, they are inconsis­tent with the basic mission of the collaborative to promote health “to the greatest extent possible” and with the collaborative’s avowed commitment to a norm of nondiscrimination and to respect for “the dignity and worth of each individual.”

 

The draft Model Act’s general requirements recognize the importance of health screening and vaccination.  Early detection of metabolic disorders makes treatments possible that prevent mental retardation.  With early detection of hearing deficits, cochlear implants or other treatment measures can make it possible for the child to develop normal cognitive, language, and social skills.

 

Vaccinations are likewise vital to the basic welfare of every child.  While large-scale epidemics might be prevented even without a 100% vaccina­tion rate, public health officials are legally and morally obligated to act out of concern for the well being of every individual child, and the reality is that any unvaccinated child remains vulnerable to serious, even life-threatening, diseases.  As we discuss later, non-medical exemptions from immunizations also lower the level of protection in the general population.

 

Because health screening and vaccination are vital to the basic welfare of every child, we believe that the draft Model Act should not contain language empower­ing some parents to withhold these benefits from their children.  While exceptions for medical contraindications protect the health of children, religious exemptions clearly do not.

 

Religious and philosophical exemptions open a Pandora’s box in our diverse country.  Allowing them from children’s health laws encourages such exemptions from child safety laws.  Two states already have religious exemptions from a law requiring children to wear bicycle helmets.[1]  Some people object to seat belts on religious grounds and claim they should trust God exclusively for their safety.  The Amish drive their buggies on major highways yet object to having orange reflectorized warning signs on their buggies because their religion forbids bright colors.[2]  The Amish are also seeking a religious exemption from federal child labor laws.[3]

 

The exemptions in the draft MSPHA lead states down a path toward a legal quag­mire that distracts state health agencies from their work and in many other ways undermines the state’s health care aims.  Legislators must draw the limits of exemp­tions somewhere, necessarily leaving outside them some parents who want an exemption.  Some laws have required state health agencies to make constitution­ally-suspect inquiries about the sincerity of parents’ purported religious beliefs.  Many parents whose request for exemption was denied have sued the state charging a violation of the Equal Protection Clause and of the Establishment Clause.  They view their exclusion as unfair discrimination and as state endorsement of particular kinds of beliefs.  Sometimes courts uphold the exemptions and sometimes they do not, but in either case the exemptions generate ill will and great costs for the state.

 

More importantly from a child welfare perspective, religious exemptions violate the equal protection rights of the children whom they exclude from health care benefits.  As several experts in family and constitutional law have written, the Equal Protection Clause entitles children to share equally in important benefits bestowed by the states, such as education and health care, without regard to the interests and beliefs of parents or other adults.[4]  The Supreme Court has clearly established this rule in certain education contexts, and while young children are generally unable as a practical matter to assert their rights to preventive health care against the wishes of their parents, at least one lower court has nevertheless recognized that the rule of Brown v. Board of Education and like decisions applies equally to health care, and that religious exemptions to child vaccination laws violate the equal protection right of the children who are put at risk as a result.[5]

 

As the drafters of the Model Act acknowledge in their published work, states are not required to include religious and philosophical exemptions in any of their child welfare laws.  In a recent Kentucky Law Journal article, Professors James Hodge and Larry Gostin note with respect to immunization specifically, that “the state’s power to require children to be vaccinated as a condition of school entrance has been widely accepted and judicially sanctioned,” including by the U.S. Supreme Court, that “requesting a person to submit to vaccination against his religious beliefs is generally viewed as constitutional,” and that “states are not constitution­ally obliged to grant religious exemptions.”[6]  CHILD has consulted with other professors of law, experts in family law and constitutional law who have added their signatures to this letter, and they confirm that the clear constitutional rule is that parents have no right to a religious exemption from legal requirements for children’s health.

 

The United States Supreme Court itself has held specifically that states may re­quire vaccinations, of adults as well as of children, without making exceptions for people who object, for themselves or for their children, on religious or philosophi­cal grounds.[7]  Lower courts have consistently adhered to this holding in subse­quent cases challenging vaccination laws, reiterating in case after case that com­pul­so­ry vaccinations do not violate parents’ First Amendment rights, liberty or property interests, or privacy rights.[8]  And more generally, the Supreme Court has declared that parents’ religious beliefs do not entitle them to exemption from any child welfare laws that serve to advance the health or guard the safety of their children.  In Prince v. Massachusetts, the Court stated emphatically that parents’ “right to practice religion freely does not include the liberty to expose the commu­ni­ty or the child to communicable disease or the latter to ill health or death.”[9]

 

The only case in which the Supreme Court has held that any parents are entitled on the basis of religious belief to exemption from any generally applicable child-rearing mandates, Wisconsin v. Yoder, involved education rather than health care.  And in Yoder, the Court emphasized that its decision exempting the Amish from compulsory education after the eighth grade was strictly limited to the special circumstances of the Amish and that the state had not shown that the affected children would be in any way adversely affected by the exemption.  The Court in Yoder reaffirmed that the Constitution does not deny states the power to impose requirements for child rearing on parents without regard to their religious beliefs, stating:  “To be sure, the power of the parent, even when linked to a free exercise claim, may be subject to limitation under Prince if it appears that parental decisions will jeopardize the health or safety of the child.”[10]

 

In light of the unambiguous, clearly-established constitutional rule that religious exemptions from state child welfare laws are not required, for the drafters of the Act and the members of the collaborative to endorse religious exemptions to screening and vaccination requirements for children would be gratuitous.  Because the Constitution does not require state governments to provide such exemptions, for the Model Act to include them would amount to the members of the collabora­tive presuming to make a moral judgment that parents are entitled to greater power over their children’s lives than the law requires, and that some children are not deserving of the same health protection that other children receive. 

 

A moral judgment to prioritize the wishes of parents over the basic welfare of children would be deeply troubling.  It would be consistent with the ancient view of children as the property of their parents that once prevailed in the western world, but not with contemporary understanding.  The Supreme Court clearly recognized the distinct personhood and moral standing of children when it stated, in Prince v. Massachusetts: “Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.”

 

We urge the Turning Point Public Health Statute Modernization Collaborative not to include a policy that allows some children to be deprived of health care when there is no case law mandating such a policy.

 

We urge the collaborative to think deeply about what a model act should set forth as the ideal.  We would like for the Model State Public Health Act to set forth what honors the value of each and every child to society and to himself.  We would like it to strive to improve the health of all members of society, especially the most vulnerable, to the maximum extent possible.  If legislators are determined to deny health care benefits to some children, because of political pressure from certain religious groups, they will do so without any urging from the Turning Point collaborative.  But the Model Act should have what would be best for children, not what is politically expedient.

 

II.  Screening

 

Equity, privacy, and autonomy are often mentioned as fundamental ethical princi­ples for screening programs.  CHILD believes the principle of equity requires that all children be given equal protection against serious diseases.

 

In our view, families have important privacy rights with regard to how information gained from screening is used.  To our knowledge, however, there is no case law indicating that parents have a privacy right to refuse screenings for their children.

 

With regard to autonomy, we are aware that parents must usually give informed consent for any medical procedure performed upon children below the age of puberty.  We support giving parents information about such medical procedures and trying to enlist parents as informed partners in all health care given to children.  We also believe, however, that some screenings are so beneficial to children that the state should require them.  As stated by the Institute of Medicine Committee on Assessing Genetic Risks, “Even though respect for autonomy is centrally important in our society, it is not absolute.  It can be overridden in some circumstances, for example, to prevent serious harm to others, as in the case in mandatory newborn screening for phenylketonuria (PKU) and hypothyroidism.”[11]

 

Mental retardation robs a child of his or her autonomy.  The child’s loss of auto­nomy because of preventable retardation is infinitely more significant than the parent’s small loss of autonomy in compulsory metabolic screening.  Newborn screenings can obviate the need for much more extensive intrusion by the state when the child is older.

        

Of the three types of screening programs described by the MSPHA at Sec. 5-106(d), we believe metabolic screening and newborn hearing screening belong in the second model:  conditional screening that is “necessary to achieve an important public health objective.”

 

With that kind of program, the screening is a condition of participating in or receiving a service or privilege such as hospital or physician care or registration of birth.  If parents want to give birth in a hospital or want their child’s birth registered, they will have to give informed consent for the screenings.

 

Nebraska’s regulations on metabolic screening of newborns require the screening as a condition of registering the child’s birth.  We consider that the ideal method for protecting all babies from the severe, permanent damage of untreated metabolic disorders.  We would like for the MSPHA to recommend it.

 

The Joint Report of the Association of Public Health Laboratories and Council of Regional Genetic Networks sets forth several criteria for including a test in a new­born population screening including, for example, that the disease has signifi­cant mortality and morbidity when not diagnosed presymptomatically, the disease is not consistently identified clinically in the neonatal period, the prevalence of the disease in the population is significant, and, most importantly, that the baby can benefit from pre-symptomatic treatment.[12]  If the screenings meet their criteria, we feel that the state should try to obtain 100% compliance by conditioning a service or privilege on the screening.

 

We suggest Sec. 5-106 be expanded to say something like the following:  “No screening shall be done without the informed consent of the individual or his legal representative.  However, screenings of children that are necessary to detect serious, but treatable conditions significantly prevalent in their population shall be required as a condition of registering a birth or of school enrollment.”

 

Such language would, for example, allow the state to require blood lead-level screenings only in areas with higher likelihood of lead contamination and allow parents in rarely affected ethnic groups to refuse tests for sickle cell anemia or Tay-Sachs disease.

 

III.             Mandatory Testing and Examination

 

Section 5-106( c) of the MSPHA provides that “the state or local public health agency may require testing or medical examination of any individual  who has or may have been exposed to a contagious disease that poses a risk or danger to others or the public’s health.”

 

In addition, we would like to have children tested or examined by a physician when they may have been exposed to a contagious disease that poses a risk or danger to the children themselves.  If their parents refuse, the state or local public health agency should have authority to seek a court order for the test or medical examination.  While isolation of an infected individual may be adequate to protect the public’s health, an at-risk child deserves testing and examination so that he himself can be protected from disease.  

 

IV.              Compulsory Medical Treatment

 

Section 5-107 of the MSPHA is not clear to us.  It prohibits “forcible or involun­tary administration of medication to any individual,” but also allows involuntary medication—apparently of both children and adults—through court order.

 

Most states require parents to provide their children with necessary medical treatment in statutes outside of public health laws.  We therefore do not ask for change in Sec. 5-107.

  

V.  Vaccination

 

Sec. 5-109(h) of the MSPHA provides religious and philosophical exemptions from vaccination.  CHILD opposes such exemptions for children.  As discussed above, these exemptions are not mandated by the Constitution, and some courts have ruled certain exemption laws a violation of the First Amendment Establishment Clause.

 

Most importantly, the Mississippi Supreme Court has ruled a religious exemption from immunizations unconstitutional as a violation of the Fourteenth Amendment Equal Protection Clause.  The Court held that it violates the rights of the exempted children as well as the rights of the children around them.  Of the exempted children, the Court ruled:

 

The relationship of parent and child is one in which the law concerns itself more with parental duties than with parental rights.  The relationship carries with it a duty resting upon the parent to provide the child with food, clothing, and shelter and to protect the child from preventable exposure to danger, disease and immorality.  It must not be forgotten that a child is indeed himself an individual, although under certain disabilities until majority, with rights in his own person which must be respected and may be enforced.  Where its safety, morals and health are involved, it becomes a legitimate concern of the state.[13]

 

Immunizations are the most cost-effective measure in all of medical science.  They have eliminated ancient scourges that used to kill thousands of children.  All children deserve the benefits of immunizations (unless medically contraindicated).

 

Vaccine opponents are making a nationally organized effort to get philosophical or conscientious exemptions from immuniza­tions into state codes.  Their efforts are usually strenuously opposed by state medical associations and chapters of the American Academy of Pediatrics.  Having philo­sophi­cal exemptions stand in a national model public health law would be a major triumph for vaccine opponents.

 

Strangely, the MSPHA drafters Larry Gostin and James Hodge not only acknow­ledge in their Kentucky Law Journal article that non-medical exemptions from immunizations are not required by the First Amendment, but also that such exemp­tions endanger both unvaccinated and vaccinated children.  When even the MSPHA drafters acknowledge the dangers of these exemptions, they should not be put in the Model Act. 

 

A recent article in the Journal of the American Medical Association (JAMA) indicates that children claiming a religious or philosophical exemption from immuniza­tions are 35 times more likely to contract measles than a vaccinated child.[14]  Measles is not a trivial illness.  Thousands of children used to die every year from measles; many others were disabled by encephalitis, blindness, and other serious complications from the disease.  We think it is unethical for the state to allow some children to have a 3500% higher risk of contracting measles than others.

 

Another recent JAMA article indicates that at least 11% of the vaccinated children in Colorado who contracted measles acquired it from a child with a religious or philosophi­cal exemption.[15] 

 

Children with religious or philosophical exemptions from immunizations also pose a grave risk to immunocompromised children.  Each year 12,400 U.S. children are diag­nosed with cancer, and many of them remain in school during treatment.  Children with cancer, AIDS, and other diseases may have medical exemptions from immuniza­tions.  It is not fair to them to have children around them who are unimmunized because of their parents’ beliefs.  As one mother of a cancer patient said, “I don’t think my son should have to go to school with a mask over his face.”

 

Young children in daycare are two to three times more likely to contract illness than children who remain at home.  Unvaccinated carriers among them increase the risk of illness.   

 

The financial cost of not immunizing children can be very high.  The medical bills to save the life of one Amish child who contracted tetanus in 1997 were $600,000.  The Amish community refused to apply for government assis­tance and was able to pay only 10% of the bill.[16]

 

Another cost to all of us is that treating infectious diseases requires anti­biotics and the more antibiotics are used, the more some bacteria develop resis­tance to them.  Our entire society benefits when infectious diseases are prevented by immunization rather than treated after they occur.

 

We also wish to point out that “herd immunity” is not the only purpose of vaccination programs.  Tetanus is not a contagious disease, yet we require children to be immunized against tetanus.  Rubella is a mild disease, but we require children to be immunized against rubella in order to prevent severe damage to a fetus who may be conceived decades later.  The hepatitis B vaccine prevents liver cancer.  It is the only vaccine we have that does prevent cancer.

 

The suggestion that state health officials should be content to aim for “herd immu­ni­ty” is therefore morally untenable.  The hallmark of education policy today is that no child should be left behind, no child should be denied the benefit of state laws and state services relating to this basic aspect of their development.  This principle applies equally to children’s health, and the nation’s leading health experts should be advocating forcefully for application of that principle to health care.

 

Fear and misunderstanding of immunizations do seem more prominent today, but we do not believe religious or philosophical exemptions to immunizations are the solution.  In fact, such exemptions often increase resentment that some groups are exempted and others not.

 

Instead, we should do more to educate the public about the purpose and benefits of immunizations.  Which vaccines are mandated should be determined by a public hearing process so that the public has the opportunity to discuss the merits of mandating them.  Pediatrics professor Kathryn Edwards recommends that legisla­tures mandate only vaccines that “protect against highly contagious diseases that cause significant morbidity and mortality and can be prevented.”[17]  In addition to such vaccines, we would add tetanus.  It is not a contagious disease, but tetanus bacteria are ubiquitous in the natural environment.

 

CHILD recommends that Sec. 5-109(h) allowing religious and philosophical exemptions from childhood immunizations be deleted from the MSPHA.  A partial list of outbreaks of vaccine-preventable diseases among children with religious and philosophical exemptions and the American Medical Association’s position these exemptions are included as enclosures with this letter.

 

VI.                 Recommendations

 

Recapitulating, we have four recommendations for improvements to the MSPHA.

 

1.  We recommend that the guiding principle at Article V Section 5-101[b](7) of exemption from all testing, screening, treatment, and vaccination on the basis of “sincere religious, moral, or philosophical beliefs” be limited to competent adults and adults who have given advance directives about the health care they want.

 

2.  We recommend Sec. 5-106 be expanded to say something like the following:  “No screening shall be done without the informed consent of the individual or his legal representative.  However, screenings of children that are necessary to detect serious, but treatable conditions significantly prevalent in their population shall be required as a condition of registering a birth or of school enrollment.”

 

3.  We recommend that Section 5-106( c) provide that “the state or local public health agency may require testing or medical examination of any individual who has or may have been exposed to a contagious disease that poses a risk or danger to others or the public’s health and of any child who has or may have been exposed to a contagious diseases that poses a risk or danger to the child.”

 

4.  We recommend that Article V Section 5-109[h] providing a religious and philosophical exemption from vaccinations for children be deleted.

 

VII.  Conclusion

 

We do believe families deserve a zone of privacy free from state regulation.  We believe the state should be limited in what it requires of parents.  We do not believe, however, that religious or philosophical beliefs should be a basis for exemptions from child health and safety laws that the state has decided to mandate for children in general.  If a state legislature has determined that a measure is beneficial enough to require it for children in general, then children should not be deprived of it on religious or philosophical grounds.

 

We ask the Turning Point Public Health Statute Modernization Collaborative to give all children the equal protection of the laws in the Model State Public Health Act, thus honoring the worth and rights of each individual child.

 

Thank you for your receptivity to input from the public.  CHILD would be happy to answer any questions you might have or to provide any additional information you might find useful.

 

Written by Rita Swan, President of CHILD, and James Dwyer, Associate Professor of Law, College of William and Mary, Williamsburg, Virginia

after meeting with Seth Asser, M.D., F.A.A.P., Providence RI; Ann Massie, Professor of Law, Washington and Lee University, Lexington VA; Anne Schneiders, Attorney, Washington DC; and Janis Guerney, J.D., Washington DC, all of whom endorsed this letter

 

 

And also endorsed by the following:

 

Robert Reece, M.D., F.A.A.P., Director

Institute for Professional Education

Massachusetts Society for Prevention of Cruelty to Children

Boston MA

 

James Marsh, J.D., Founder

Children’s Law Center

Washington D.C.

 

Marci Hamilton

Paul R. Verkuil Chair in Public Law

Benjamin N. Cardozo School of Law

Yeshiva University

New York NY 

 

William London, Ed.D., M.P.H.

Faculty Mentor

Master of Science in Public Health Program

Walden University

 

Jetta Bernier, Executive Director

Massachusetts Citizens for Children

Boston MA

 

Laura Rosenbury

Associate Professor of Law

Washington University

St. Louis MO

 

John B. Muth, M.D., M.P.H., F.A.C.P.M.

Public Health Consultant

Colorado Foundation for Public Health and the Environment

Colorado Springs CO

 

Ellen Mugmon, Child Advocate

Elkridge MD