Tag: informed consent

A Guide to Evaluating Vaccine Information for Legislators

As new vaccine bills are proposed, our state legislators, few who are doctors, are often put in a unique position of making decisions that could affect whether or not our kids are at risk to get a vaccine preventable disease.

Does House Majority Leader Lee Qualm have any idea why we ever started to have school vaccination requirements?
Does House Majority Leader Lee Qualm have any idea why we ever started to have school vaccination requirements?

Yes at risk, since outbreaks of vaccine preventable diseases could certainly increase as some of these vaccine bills actually weaken existing vaccine laws.

A Guide to Evaluating Vaccine Information for Legislators

It is easy to see why some Legislators are looking to strengthen their state’s vaccine laws, as they had likely been seeing a rise in vaccine hesitancy, with a corresponding rise in outbreaks of vaccine preventable diseases.

But why would a Legislator want to make it easier for unvaccinated kids to go to school?

“I’m not opposed to vaccines, but I believe it should be up to the parents.”

South Dakota House Majority Leader Lee Qualm

When you hear them talk, it is easy to see that they have often been misled by the same misinformation and propaganda about vaccines that leads some vaccine hesitant parents to skip or delay their child’s vaccines.

If we see a COVID-19 pandemic, most of us will welcome a new vaccine to protect our families.
If we see a COVID-19 pandemic, most of us will welcome a new vaccine to protect our families.

This includes the ideas that:

Of course, none of these things we crossed out are true, but they are all ideas pushed by folks who lobby these politicians. These folks also push misinformation about mutant measles, herd immunity, untested vaccines, unavoidably unsafe vaccines, and that vaccines have never been tested for carcinogenic or mutagenic potential.

Who is educating your state legislators about vaccines?
Who is educating your state legislators about vaccines?

Unfortunately, a very vocal minority of parents who want to send their intentionally unvaccinated kids to school are getting extra attention in state houses because the great majority of parents who do vaccinate their kids don’t show up to advocate for vaccines.

Why not?

For many, it’s simply hard to believe that there are actually people out there fighting against vaccines!

It is easy to see why some Legislators might be tricked by slick anti-vaccine talking points in these meetings.
It is easy to see why some Legislators might be tricked by slick anti-vaccine talking points in these meetings.

As difficult as it might be, our Legislators need to be prepared when these folks come with their talking points against vaccines.

What about the rights of children who can’t be vaccinated and have true medical exemptions?

Otherwise we will end up with more bad vaccine bills that will put our kids at risk.

Pennachio and Testa want to opt out of the federal Vaccine Count and NVICP and recreate it on the state level???
Pennachio and Testa want to opt out of the federal Vaccine Count and NVICP and recreate it on the state level???

What’s wrong with these types of vaccine bills?

For one thing, they do nothing to make kids safer and they simply put extra steps in the way of getting kid vaccinated and protected.

Arizona state Sen. Paul Boyer told CNN he co-sponsored three of the bills after hearing from parents who said their children were hurt by vaccines. He felt the state was “not engaging in fully informed consent.”

Even with measles outbreaks across the US, at least 20 states have proposed anti-vaccination bills

Again, many simply echo talking points against vaccines about vaccine inserts (no one is hiding them…), liability, VAERS (information on reporting vaccine reactions is on every vaccine information sheet parents get), informed consent, and vaccine injury stories.

Lawrence Palevsky has been described as "an antivaccine pediatrician who’s an endless font of misinformation." Is this who your legislators are listening to?
Lawrence Palevsky has been described as “an antivaccine pediatrician who’s an endless font of misinformation.” Is this who your legislators are listening to?

And that’s not surprising, considering who gives these Legislators (mis)information about vaccines. Folks like Bobby Kennedy, Larry Palevsky, Ginger Taylor, Rita Palma, and the NVIC, etc., who also help to derail good vaccine bills.

“You don’t have to be a scientist or part of an organization to spread the word about the importance of immunizations. You can make an impact on vaccine-preventable diseases in your own community.”

Vaccinate Your Family – Make a Local Impact

We don’t have to let these folks them shape vaccine bills and policy though.

“A decision not to vaccinate is not just an individual decision. Because these diseases are spread from person to person, the decision to leave a child unvaccinated not only leaves that child susceptible to vaccine-preventable diseases, but permits the spread of those diseases to the surrounding community, including infants too young to be immunized and those suffering from immunodeficiency conditions.”

An Open Letter to Congress On Immunization Policy

Let your legislators know that you want strong vaccine laws that keep all of us protected from vaccine preventable diseases.

More on Vaccine Information for Legislators

Why Do Some Parents Refuse the Newborn Screening Test?

Why do some parents refuse the newborn screening test when their baby is born?

Do parents skip testing just because the newborn screening test might be painful?
Is it just that the newborn screening test might be painful?

The usual suspects…

Why Do Some Parents Refuse the Newborn Screening Test?

And they are getting advice to skip in the same Facebook groups that tell them to skip their baby’s hepatitis B vaccine and vitamin K shot.

But why skip the newborn screen test, after all, it isn’t a shot of any kind?

Home births are less likely to have newborn screening tests.

Mostly these parents are scared into thinking that something bad will be done with their baby’s blood.

Something beyond testing it for up to 50 or more life-threatening diseases that are often treatable when detected early, which is why newborn screening tests are a thing.

Although blood spots from newborn screening tests are sometimes stored, most folks don't understand why. Genetic manipulation?
Although blood spots from newborn screening tests are sometimes stored, most folks don’t understand why. Genetic manipulation?

While it is true that some states continue to store blood spots from the newborn screening tests for some time, it is mainly to allow retests, forensic studies, and for research on new tests and new technology.

“Many parents don’t realize their baby’s DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action.”

Elizabeth Cohen on The government has your baby’s DNA

And it isn’t a secret.

“Newborn screening programs vary widely in approaches and policies concerning residual dried blood spot samples (DBS) collected for newborn screening. Recognition of the epidemiological utility of DBS samples for HIV seroprevalence surveys and a growing interest in DBSs for DNA analysis has intensified consideration of issues regarding retention, storage, and use of residual DBS samples. Potentially these samples provide a genetic material “bank” for all newborns nationwide. Their value as a resource for other uses has already been recognized by scientists, administrators, and judicial officials. Programs should promulgate rules for retention and use of residual newborn screening DBS samples based on scientifically valid information. Banking of newborn samples as sources of genetic material should be considered in light of potential benefit or harm to society.”

Guidelines for the Retention, Storage, and Use of Residual Dried Blood Spot Samples after Newborn Screening Analysis:Statement of the Council of Regional Networks for Genetic Services (1996)

Experts began developing guidelines nearly 25 years ago to address the ethical concerns associated with newborn DNA banking.

“In fact, under the recently revised Newborn Screening Saves Lives Reauthorization Act of 2014, federally funded DBS research is considered human subject research that requires parental consent. Newborn screening programs are now tasked with implementing informed consent strategies for use and storage of their states’ DBS if they are being used for federally funded research.”

Kelly et al on Screening of Newborns for Disorders with High Benefit-Risk Ratios Should Be Mandatory

So should you opt out of the newborn screening test because you are scared of newborn DNA banking?

“Once screening in the State laboratory is complete, residual dried blood spot samples that are no longer needed for testing are each assigned a unique code which assures privacy and confidentiality for the sample and its donor.”

Michigan Neonatal Biobank

Opting out means your baby won’t be tested for treatable conditions, like homocystinuria, classic phenylketonuria, severe combined immunodeficiencies, galactosemia, congenital adrenal hyperplasia, and primary congenital hypothyroidism, etc.

“Newborn screening of the blood spot consists of a series of tests to look for 53 diseases that can cause a baby to get really sick or die if they are not identified and treated early. The diseases can cause growth problems, mental or physical delays, deafness, blindness, seizures, and early death. Most babies with these conditions look perfectly normal when they are born, and problems may not appear for several weeks or months. About 1 child out of every 500 screened has one of these newborn screening conditions.”

Can parents opt out of having their newborn screened?

It is estimated that the lives of more than 12,000 babies are saved or improved each year in the United States because their conditions are detected through newborn screening.

Newborn screening tests for homocystinuria, the thing that you should actually be worried about if you have an MTHFR gene mutation.
Newborn screening tests for homocystinuria, the thing that you should actually be worried about if you have an MTHFR gene mutation.

But mostly understand that all of these risks you take when you skip standard care add up – skipping your Tdap shot during pregnancy and your baby’s vitamin K shot, eye ointment, hepatitis B vaccine, and newborn screening tests, etc.

“While screening programs are now universal in the United States, it is estimated that approximately 1‐2 percent of births are not screened either because of parental refusal or practitioner oversight or omission. For every 1 percent of newborns not screened in the United States, approximately 45‐50 infants will be missed each year.”

Parent Refusal to Have an Infant Screened

And we see the tragic results.

“Federal and state public health agencies, in partnership with health professionals, families, and representatives of ethnic, minority, and other diverse communities, should develop model legislation and/or regulation that articulates policies and procedures regarding use of unlinked and identifiable residual samples for research and public health surveillance (this process should include review and consideration of the recent recommendations to the President set forth by the National Bioethics Advisory Commission for research involving human biological materials); develop model consent forms and informational materials for parental permission for retention and use of newborn screening samples; develop educational materials for parents that include information regarding the storage and uses of residual samples; organize collaborative efforts to develop minimal standards for storage and database technology to facilitate appropriate storage of residual newborn screening blood samples at the state level; consider creating a national or multistate population-based specimen resource for research in which consent is obtained from the individuals from whom the tissue is obtained; such a resource could be an alternative to retaining newborn screening samples for potential use in research.”

American Academy of Pediatrics Newborn Screening Task Force recommendations: how far have we come?

If you are concerned, work to make sure that states continue their efforts to make sure newborn screening samples are handled appropriately, especially if they are stored, but don’t put your baby’s health at risk by skipping or delaying their newborn screen test.

More on Refusing Newborn Screen Tests

Standing Orders for Vaccination

Have you heard about standing orders for vaccination?

Anti-vax folks have become overt in how they are now all about conspiracy theories.
Anti-vax folks have become overt in how they are now all about conspiracy theories.

Guess what?

Standing orders does not mean “covert vaccination without consent.”

Standing Orders for Vaccination

For one thing, there is nothing covert about them.

In addition to the Take a Stand! website, the Immunization Action Coalition has hosted workshops all over the United States on using standing orders to increase vaccination rates.

And they aren’t about vaccinating people without their consent.

So what are standing orders for vaccination?

“Standing orders are written protocols approved by a physician or other authorized practitioner that allow qualified health care professionals (who are eligible to do so under state law, such as registered nurses or pharmacists) to assess the need for and administer vaccine to patients meeting certain criteria, such as age or underlying medical condition.”

10 Steps to Implementing Standing Orders for Immunization in Your Practice Setting

Again, that doesn’t mean you can skip getting informed consent before giving vaccines.

“Having standing orders in place streamlines your practice workflow by eliminating the need to obtain an individual physician’s order to vaccinate each patient.”

10 Steps to Implementing Standing Orders for Immunization in Your Practice Setting

All standing orders do is eliminate the need for doctors and other health care providers to assess and write orders for vaccines on each and every patient they see.

Instead, standing orders help delegate that part of the vaccination process to other qualified health care professionals to help make sure that “immunizations are available at all visits, sick or well, regular hours, or weekend clinics.”

Everything else is essentially the same.

Even with standing orders, you still have to get informed consent before giving a vaccine.
Even with standing orders, you still have to get informed consent before giving a vaccine.

The health care provider giving the vaccine still has to:

So what’s the benefit of standing orders?

It removes some of the barriers to getting vaccines, such as needing a well child checkup or physical exam, allowing for vaccination-only appointments.

“The Community Preventive Services Task Force (CPSTF) recommends standing orders for vaccinations—when used alone or when combined with additional interventions—to increase vaccination rates among adults and children from different populations or settings.”

Vaccination Programs: Standing Orders

Standing orders also help make sure that you keep kids on schedule or get them caught up as health care providers automatically check their vaccination status at each and every visit to the office, even during sick visits.

For example, if you child comes in for an appointment in October with a mild ear infection or because they have a wart, a standing order for a flu vaccine can help make sure you child is vaccinated and protected before flu season starts.

Standing orders do not override laws requiring informed consent.
Standing orders do not override laws requiring informed consent and there is no single form that would give consent to all medical procedures.

It should be obvious that standing orders simply lead to fewer missed opportunities to be vaccinated and protected.

Not surprisingly, their source and evidence for forced vaccination is simply another anti-vaccine website...
Not surprisingly, their source and evidence for forced vaccination is simply another anti-vaccine website…

There is nothing covert about them.

“Consent is a communications process, not a form. The process provides an opportunity for the patient to understand the benefits, risks and alternatives to the treatment he or she is about to undergo, and for the physician to explain these in detail. Forms are used to document the process.”

Consents Policy

Not even in the way anti-vax are using them to try and scare you away from vaccinating and protecting your kids.

More on Standing Orders for Vaccination

The Missing Information That Big Pharma Won’t Tell You About Vaccines

Do you know why some folks still don’t vaccinate and protect their kids, even as we are seeing more and more outbreaks of vaccine-preventable diseases?

Why don't anti-vax folks have to give informed consent?
Why don’t anti-vax folks have to give informed consent?

Yup.

They are in on the “missing information” about vaccines that the rest of us don’t seem to know about…

The Missing Information That Big Pharma Won’t Tell You About Vaccines

Of course, we all know about this “missing information.”

It is the misinformation about vaccines that anti-vax folks spread to scare parents and make them think that vaccines are dangerous, don’t work, and aren’t necessary.

“We feel that there’s things that public health are not telling the people and these are facts that are not well known. That are not given. So it’s not misinformation, it’s missing information. And there’s always two sides and more to information that should be given to all of us, right? We should be getting fully informed consent, right?”

not an anti-vaccine protestor

What else can you call this missing information?

How about alternative facts?

They certainly aren’t true facts about vaccines or vaccine-preventable diseases.

And that makes it ironic that they talk about getting fully informed consent.

You can’t get or give fully informed consent if you are misleading people, as these folks do with their “not protesting” signs about vaccines.

After vaccines became "liability free" you had to first sue in Vaccine Court.
After vaccines became “liability free” you had to first sue in Vaccine Court.

Take the sign about doses of vaccines tripling after they became liability free.

Is that true?

Of course not.

For one thing, as most people know, vaccines are not liability free.

But for the sake of argument, let’s try and think about what they are trying to say.

They are implying that ‘we’ tripled the number of vaccine doses after the passage of the National Childhood Vaccine Injury Act of 1986, which set up the National Vaccine Injury Compensation Program.

Of course that didn’t happen.

What's missing from the anti-vax protestors sign? That the immunization schedule hardly changed in the 1980s.
What’s missing from the anti-vax protestors sign? That the immunization schedule hardly changed in the 1980s.
This sign is missing information on years of development and testing that occur before a vaccine is approved.

Most new vaccines weren’t added to the immunization schedule until the late 1990s and after.

Their other sign covers a few different anti-vax talking points – that vaccines are only tested for 4.5 days and that vaccines aren’t tested as thoroughly as drugs.

Of course, neither are true.

As you do even a little research on these kind of immunization signs, you can see that the “missing information” they are talking about is simply more anti-vax misinformation.

More on Anti-Vax Misinformation