Misunderstanding the Affordable Care Act and Understanding Why It Should Be Saved

Obamacare is not failing and has helped millions of people get insurance coverage. All of the plans to repeal and replace it have been huge steps backwards that have been opposed by every major health organization.

If the Affordable Care Act (Obamacare) gets repealed, it likely won’t be because folks understand what it does.

The American Academy of Pediatrics is opposed to plans to repeal the ACA and wants to KeepKidsCovered.
The American Academy of Pediatrics is opposed to plans to repeal the Affordable Care Act and is working hard to #KeepKidsCovered.

It will be because many people don’t realize that they are benefiting from Obamacare or even what it really does.

Obamacare Under Attack

The Affordable Care Act has been under attack almost from the day it was enacted.

Since the original Repealing the Job-Killing Health Care Law Act, and through dozens of others, we have most recently had the:

  • Better Care Reconciliation Act
  • Obamacare Repeal and Reconciliation Act
  • Health Care Freedom Act (“Skinny” repeal)

They all failed.

The latest attempt to repeal Obamacare is the Graham-Cassidy-Heller-Johnson Bill.

Will this bill pass?

As a pediatrician, I am fearful for my patients and the uncertain future they would face under Senators Lindsey Graham (R-S.C.) and Bill Cassidy’s (R-La.) health care proposal, currently set for a vote next week in the U.S. Senate. As president of the American Academy of Pediatrics, I must speak out against this dangerous, ill-conceived policy on behalf of our 66,000 pediatrician, pediatric surgical specialist and pediatric medical subspecialist members, and stop it from advancing…

The American Academy of Pediatrics urges the Senate to oppose the Graham-Cassidy proposal, and instead turn to bipartisan solutions that are crafted in the best interest of children and families, like the Children’s Health Insurance Program and Maternal, Infant and Early Childhood Home Visiting program, which both expire next week. Pediatricians will continue to focus on the children we care for as this process unfolds, and we will not stop speaking up on their behalf until we see legislation that puts them first.

Fernando Stein, MD, FAAP, President, American Academy of Pediatrics on the AAP Statement Opposing Graham-Cassidy Health Care Proposal

Like the other bills, the Graham-Cassidy-Heller-Johnson Bill will fail if any of these organizations that have come out in opposition have anything to say and do about it:

  • American Academy of Pediatrics (AAP)
  • American Medical Association (AMA)
  • American Nurses Association
  • American Congress of Obstetricians and Gynecologists (ACOG)
  • American Academy of Family Physicians (AAFP)
  • American Osteopathic Association (AOA)
  • American Public Health Association
  • National Association of Pediatric Nurse Practitioners
  • First Focus Campaign for Children
  • Children’s Defense Fund
  • Children’s Dental Health Project
  • Family Voices
  • American Psychiatric Association
  • AARP
  • National Council for Behavioral Health
  • American Hospital Association
  • ALS Association
  • American Cancer Society Cancer Action Network
  • American Diabetes Association
  • American Heart Association
  • American Lung Association
  • Arthritis Foundation
  • Cystic Fibrosis Foundation
  • Family Voices
  • JDRF
  • Lutheran Services in America
  • March of Dimes
  • National Health Council
  • National Multiple Sclerosis Society
  • National Organization for Rare Diseases
  • Volunteers of America
  • WomenHeart

How can they pass a health law that every major health organization opposes?

“This bill contains proposals we have seen in previous bills, and we already know they would be bad for people with CF – and some cases, go even further. Graham-Cassidy would allow states to get rid of certain pre-existing condition protections, open the door to annual and lifetime coverage caps and high risk pools, and make massive cuts to Medicaid.”

Cystic Fibosis Foundation

In addition to repealing parts of the Affordable Care Act (ACA), Graham-Cassidy:

  • makes massive cuts to Medicaid
  • turns Medicaid into a block grant and caps its funding
  • ends Medicaid expansion
  • eliminates ACA’s marketplace subsidies

Graham-Cassidy should not be allowed to pass.

Add your voice to the opposition if you agree. Contact your Representative and Senators to let them know that you oppose the Graham-Cassidy ACA repeal bill.

Understanding the ACA

Most people understand that the ACA allowed many uninsured people to finally get insurance. Either with the help of tax credits, simply because the plans were available, or through the expansion of Medicaid, about 20 million have insurance because of the ACA.

What many people don’t realize is that they likely benefited from the ACA, even if they aren’t one of these 20 million people.

Some of the ACA benefits for everyone with any kind of insurance included:

  • no refusal for coverage because you have a pre-existing condition – which could include things like asthma, ADHD, anxiety, and depression or a cancer that is in remission
  • coverage for young adults so they could stay on their parent’s insurance plan until they are 26 years old, even if they are in school, working, or married
  • the elimination of annual and lifetime limits or caps – which some kids with complex health problems could reach in a single year
  • no co-pays for preventative care visits, from well-child visits and vaccines to mammograms and colonoscopies and well adult visits for men and women
  • no co-pays for breastfeeding support, supplies, and counseling
  • coverage for maternity services
  • coverage for mental health and substance abuse services
  • insurance plans can’t drop you if you get sick

Most people like those benefits.

Personally, I no longer see parents who worry about my diagnosing their child with asthma or anxiety because of how it “will look” on their insurance. And we don’t have to worry that a diagnosis of anxiety or depression won’t be covered because they have insurance that doesn’t include mental health benefits.

And, even though the Vaccines for Children program was available, it is nice knowing that insurance covers their vaccines that can protect them from life-threatening vaccine-preventable diseases.

Misunderstanding the ACA

Not realizing all of these benefits is only one way that folks misunderstand the ACA.

Are premiums under Obamacare soaring?

Actually no. Insurance premiums have gone up at slower rates for all of us than they did before Obamacare took effect!

“We have a national law that will continue to work overall, but which has some problem spots. That frames the real choice here. It is not, as Trump, McConnell, and Ryan would cynically lead the American people to believe, between repealing the ACA or coping with impending disaster. Rather, it is between repealing the law and repairing it.”

Scot Lehigh on Hard truths about Obamacare

Do some people have fewer options as some major insurers drop out of the ACA Marketplaces? Sure. But that’s still better than the zero options they likely had before the ACA when they were uninsured.

What about the idea that Obamacare is failing overall? It’s not.

What to Know About Misunderstanding the ACA

Obamacare is not failing and has helped millions of people get insurance coverage. All of the plans to repeal and replace it have been huge steps backwards that have been opposed by every major health organization.

More Information About Misunderstanding the ACA

What Is the American College of Pediatricians?

A fringe group of pediatricians, the American College of Pediatricians promotes misleading information based on the ideology of their very small group of members.

Every time you hear about or read something and quickly think to yourself, “did the American Academy of Pediatrics really say that?” – it’s almost certainly from the American College of Pediatricians.

Tucker Carlson turns to the American College of Pediatricians when he wants to take sides against transgender kids and their parents.
Tucker Carlson turns to the American College of Pediatricians when he wants to take sides against transgender kids and their parents.

The names sound alike, perhaps intentionally, but the two groups couldn’t be more different.

Who are they?

The American College of Pediatricians is basically the Bizarro World version of the American Academy of Pediatrics.

The American College of Pediatricians vs American Academy of Pediatrics

Like the Association of American Physicians and Surgeons, the American College of Pediatricians (ACPeds) pushes and promotes “misleading and incorrect” recommendations based on the ideology of their members, not using science and evidenced based medicine.

“…ACPeds was born from an ideological split within a profession. It was founded in 2002 as a protest against the much larger American Academy of Pediatrics’ support for LGBT adoption rights — and that opposition remains central to the group’s identity…

But thanks to its deceptive name — which makes it sound as if it is the mainstream professional organization for pediatricians — ACPeds often serves as a supposedly scientific source for groups pushing utter falsehoods about LGBT people.”

Southern Poverty Law Center on how the American College of Pediatricians Defames Gays and Lesbians in the Name of Protecting Children

That’s why most of the press releases and position statements from the ACPeds are against (while the AAP supports):

Michelle A. Cretella, MD, FCP (Fellow of the College of Pediatricians), the President of the American College of Pediatricians, has even praised the book Preventing Homosexuality, calling it “an invaluable resource for parents.” She is also on the Board of Directors of the National Association for Research and Therapy of Homosexuality (NARTH), a group that supports reparative or conversion therapy for homosexuals.

The American College of Pediatricians goes so far as suggesting adding a ‘P’ to LGBT acronym. No, the ‘P’  wouldn’t stand for pansexual in their world – it would stand for pedophile.

“In one sense, it could be argued that the LGBT movement is only tangentially associated with pedophilia. I see that argument, but the pushers of the movement, the activists, I think have pedophilia intrinsically woven into their agenda. It is they who need to be spoken to and against.”

American College of Pediatricians Blog on “P” for Pedophile

The American College of Pediatricians (ACPeds) is considered a fringe group and should never be confused with the mainstream American Academy of Pediatrics (AAP):

ACPeds AAP
200 to 500 members in just 47 states 66,000 members in 50 states, Puerto Rico, Washington D.C., and Canada
founded in 2002 founded in 1930
makes claims against vaccines supports vaccinating and protecting kids
supports corporal punishment by parents opposes spanking
designated as a hate group not a hate group
“The American College of Pediatricians promotes a society where all children, from the moment of their conception, are valued unselfishly. We encourage mothers, fathers and families to advance the needs of their children above their own. We expect societal forces to support the two-parent, father-mother family unit and provide for children role models of ethical character and responsible behavior.” “The American Acade​my of Pediatrics is dedicated to the principle of a meaningful and healthy life for every child. As an organization of physicians who care for infants, ​​children, adolescents, and young adults, the Aca​demy seeks to promote this goal by encouraging ​and assisting its members in their efforts to meet the overall health needs of children and youth; by providing support and counsel to others concerned with the well-being of children, their growth and development; and by serving as an advocate for children and their families within the community at large.”

Yes, the American College of Pediatricians is actually considered an active hate group by the Southern Poverty Law Center!

What to Know About the American College of Pediatricians

A fringe group of pediatricians, the American College of Pediatricians promotes misleading information based on the ideology of their very small group of members.

More About the American College of Pediatricians

 

 

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Viewing the Solar Eclipse – Hype or Hazard

I don’t know if it will change your child’s life, but there is no good reason to let them miss this total solar eclipse (or partial eclipse if you aren’t in the path of totality), as long as you take some very simple steps to make sure they view it safely.

A total solar eclipse is a big deal, although it seems like it might be a bigger deal for some people than it is for others.

What kind of eclipse will you be able to see on August 21st? Map courtesy of NASA.
What kind of eclipse will you be able to see on August 21st? Map courtesy of NASA.

It does start to seem like a bigger deal the more you learn about it…

Solar Eclipse HYPE

Still, there is a lot of hype surrounding the upcoming solar eclipse in the United States.

“Observing a total solar eclipse is a life-changing event. It challenges everything you conceive of as normal.”

Sean Lindsay on the Eclipse hype

Do you buy it?

  • will looking at the eclipse make you go blind?
  • will seeing the eclipse change your life?
  • will you regret missing the eclipse for the rest of your life?

While viewing the eclipse won’t make you go blind, at least not instantaneously, what about all of the hype about how important an event the eclipse is to view? That part has to be true, right?

“A partial eclipse is interesting but forgettable, while a total eclipse is a memorable, life-changing event which burns itself into memory – and never fades. And so we, who have seen this sight, ask you to join us on this momentous day, and do everything you possibly can to see it with us. But you must remember that “close” is not close enough; in order to see the eclipse in all its glory, you simply must…”

“Close” is NOT close enough!

It is for some people. And you might not know if you or your kids are that type of person unless you go and see the eclipse! In totality!

Solar Eclipse HAZARD

  • seeing the eclipse without protection will damage your eyes

We all know that you shouldn’t look directly at the sun or your eyes will get damaged.

And in most cases, you can’t.

It hurts to look at the sun. You’re pupils will constrict. You will blink a lot. And you will very quickly turn away.

At least in normal circumstances.

A solar eclipse is not a normal circumstance.

Since most of the sun is covered, you could likely stare at it (but definitely shouldn’t) and get a good long look at the eclipse. Unfortunately, the part that isn’t covered will be painlessly damaging your eyes, leading to burns on your retina and solar retinopathy.

But isn’t all of the sun covered in a total solar eclipse?

“During the very brief time the sun is in total solar eclipse it is safe to look at it, but do so with caution. Even during the total solar eclipse, the total eclipse may last only a short period of time, and if you are looking towards the sun as the moon moves away from blocking the sun, you might get a solar burn on your retina which can cause permanent damage to your eyes.”

Prevent Blindness America

Yes, but only for a very short time and only if you are in the path of totality.

During totality, it is safe to take your eclipse glasses off and look at the eclipse, being aware that totality may last only a minute or two.

This diamond ring means that the eclipse is not at totality yet and you still need eye protection to look at the sun.
This diamond ring means that the eclipse is not at totality yet and you still need eye protection to look at the sun. Photo courtesy of NASA.

Again, you must be very sure that you are inside the path of totality for a chance at looking at the eclipse without protection – a 70-mile wide band from central Oregon through South Carolina.

If you are not in this relatively narrow band, you will still be able to see a partial solar eclipse, but at no time will it be safe to view the eclipse without protection.

Are you going to be able to see a total or partial eclipse on August 21st?
Are you going to be able to see a total or partial eclipse on August 21st?

Remember that even if you live in or have traveled to a spot inside the path of totality, the total eclipse itself will only last a few minutes.

The whole eclipse will last much longer though.

From the start of the eclipse, to maximum eclipse, to the end of the eclipse, you might be looking at a three hour event. That’s a lot of time to be at risk of looking at the sun outside of totality and getting eye damage if you aren’t wearing protection.

Safely Viewing the Solar Eclipse

What kind of protection do you need to safely view a solar eclipse.

Fortunately, you have a lot of options.

This solar eclipse viewing protection can include using:

  • solar filters, including ISO 12312-2 compliant eclipse glasses that have been sold online in packs of 5 or 10 (but including some that have been recalled), handheld solar viewers,  and full aperature solar filters for cameras and telescopes
  • a pin-hole viewer that you can easily make yourself with something as common as a cereal box
  • a 2D or 3D printable pinhole projector
  • a solar viewing projector using binoculars or a telescope (not looking through the telescope itself though, unless it had a proper solar filter!)
  • No. 13 or 14 welder’s glasses

But unless you are building a pin-hole viewer or are going to an official eclipse viewing event, be sure your protection is really going to protect your child’s eyes. Are the eclipse glasses you ordered fake, recalled, scratched, or damaged? Then don’t use them.

And make sure younger children are well supervised during the entire eclipse, so that they don’t look at the eclipse at any time that you are outside the time that you are in totality.

Some people will have a better chance of viewing a total solar eclipse in 2024.
Some people will have a better chance of viewing a total solar eclipse in 2024.

What if they miss it?

They won’t have to wait too long for the next total solar eclipse. Another one is headed our way in 2024.

What to Know About Safely Viewing the Solar Eclipse

I don’t know if it will change your child’s life, but there is no good reason to let them miss this total solar eclipse (or partial eclipse if you aren’t in the path of totality), as long as you take some very simple steps to make sure they view it safely.

More About Safely Viewing the Solar Eclipse

Don’t Skip Your RhoGAM Shot

There is no reason to skip your RhoGAM shot if it has been recommended for you during or after your pregnancy.

I’m kind of shocked that I am having to write about warning folks to not skip their RhoGAM shot.

“Prophylactic anti-D immune globulin should be offered to unsensitized Rh D-negative women at 28 weeks of gestation. Following birth, if the infant is confirmed to be Rh D positive, all Rh D-negative women who are not known to be sensitized should receive anti-D immune globulin within 72 hours of delivery.”

ACOG on Prevention of Rh D Alloimmunization

Unfortunately, like with the vitamin K shot, in addition to trying to scare new moms away from getting vaccines, they also tell them to skip their RhoGAM shot.

What is RhoGAM?

RhoGAM (RhIg) or anti-D immune globulin is not a vaccine.

A RhoGAM shot can help prevent hemolytic disease of the newborn and fetus.
A RhoGAM shot can help prevent hemolytic disease of the fetus and newborn.

It is a prescription immune globulin shot that is given to some pregnant and post-partum women to prevent Rh (Rhesus) immunization, which can lead to hemolytic disease of the fetus and newborn if you get pregnant again.

RhoGAM was approved by the FDA in 1968.

RhoGAM Questions and Answers

If you have been educated about RhoGAM on the Internet and are thinking about skipping your RhoGAM shot, it might be time for a little more research:

  1. What is hemolytic disease of the fetus and newborn (HDFN)? It is not to be confused with vitamin K deficiency bleeding, which can be prevented with a vitamin K shot. Also known as erythroblastosis fetalis, HDFN occurs when a mother develops antibodies against her baby’s own red blood cells and destroys them, leading to anemia, jaundice, and edema. In severe cases, this can be life-threatening and the baby can develop hydrops fetalis.
  2. Why would a mom develop these antibodies against her own baby’s blood in the first place? Since a baby’s blood type is determined by both their mom and dad’s blood type, it is easy to see how it might be different than moms. This usually isn’t a problem, after all, a mother’s immune system doesn’t usually attack any other cells of the placenta or her baby (immune tolerance of pregnancy) that might be “foreign.” Unfortunately, it is not uncommon for a baby’s blood and “foreign” red blood cells to mix with mom’s blood, which could trigger antibodies to form.
  3. How does a baby’s blood mix with mom’s blood? Doctor’s have long known that while mixing is not common during a women’s pregnancy, it can commonly occur when she gives birth, explaining how Rh disease used to kill 10,000 babies each year in the United States. It doesn’t take trauma, a procedure (amniocentesis or chorionic villus sampling), or a difficult delivery for a baby’s blood cells to leak into a mother’s bloodstream. It can just happen. Mixing can also happen after a miscarriage, an ectopic pregnancy, or an induced abortion. Simply trying to turn a baby from the breech to a head-down position before delivery (external cephalic version procedure) leads to fetal-maternal hemorrhage in 2 to 6% of cases.
  4. Who needs to get a RhoGAM shot? It is hopefully clear already that not everyone is at risk to develop Rh immunization and so not everyone needs RhoGAM. Some folks can safely skip their RhoGAM shot, but only because it would never have been recommended for them in the first place. You only need RhoGAM if your baby’s blood type might be different than yours, specifically the Rh D antigen of the blood  and if you (mom) are Rh D negative (Rh-negative). Why don’t we worry about the ABO part? While an ABO incompatibility can also cause hemolytic disease of the newborn, it is usually much more minor. Why don’t we worry if you are Rh-positive and the baby is Rh-negative? If your baby is Rh-negative, then he or she wouldn’t have any Rh antigens on their red blood cells to make antibodies against.
  5. What is the chance your baby will be Rh-positive? It depends. And is actually more complicated than people think. If dad is Rh-positive, he can be either +/- or +/+, because there are two alleles for the Rh gene and Rh-positive is dominant. So if mom is Rh-negative (she can only be -/-), then their baby could either be +/- or -/-, so has at least a 50% chance of being Rh-positive. On the other hand, if dad is definitely +/+, then there will be a 100% chance that the baby will be Rh-positive. If you are confused now, then you don’t want to think about how two Rh-positive parents can have a Rh-negative baby!
  6. When will I get my RhoGAM shot? The current guidelines are to get a RhoGAM shot at around the 28th week of pregnancy to prevent Rh sensitization for the rest of the pregnancy; within 72 hours after the delivery of an Rh-positive infant; after a miscarriage, abortion, or ectopic pregnancy; or after amniocentesis or chorionic villus sampling.
  7. Can I skip my RhoGAM shot? You can skip your RhoGAM shot if you are already Rh sensitized (because it’s too late and RhoGAM won’t help for any future pregnancies) or if you are Rh-positive.  You will know if you are already Rh sensitized because a blood test is done to check for Rh antibodies. When paternity is certain (you know who the father is), and the father is Rh-negative, you can also skip the shot you would get at 28 weeks.  You can also skip your RhoGAM shot if your baby is Rh-negative.
  8. How do you know if you are already Rh sensitized? Moms who are Rh-negative get an antibody screen to see if they have Rh antibodies when they are 28 to 29 weeks pregnant.
  9. Why do some women seem to safely skip their RhoGAM shot and have a healthy baby? Like with skipping a vitamin K shot or with skipping or delaying vaccines, the risk of a baby developing hemolytic disease of the fetus and newborn isn’t 100%, so these parents who skipped their RhoGAM shot gambled and got lucky their baby wasn’t harmed.
  10. But don’t they do it differently in other countries? Yes. In the UK, they routinely give all Rh-negative mothers either one dose of RhoGAM at 28-30 weeks or two doses, one at 28 weeks and another at 34 weeks. New mums will also get a shot after their baby is born if their baby is Rh-positive.

Don’t skip your RhoGAM shot if it has been recommended. If you do, you will have a 13-16% chance of becoming Rh sensitized, which can affect your next pregnancy.

RhoGAM Myths

But your OB/Gyn doctor gives you RhoGAM, so why is a pediatrician writing about it?

Because getting RhoGAM prevents hemolytic disease of the fetus and newborn. If you ever see, or hopefully just read about a baby with hydrops fetalis, you will understand why pediatricians don’t want you to skip anything just because of something you read on the Internet, especially myths like:

  • RhoGAM is a vaccine – not true. RhoGAM is made of antibodies. And while it is a blood product, it is extensively screened and tested for infections. Of course, you shouldn’t skip any of your pregnancy vaccines either, like your flu or Tdap vaccines.
  • RhoGAM contains mercury – not true. RhoGAM is thimerosal free.
  • You only need RhoGAM if you have been in a car accident – not true, at all. Again, even in a normal pregnancy, with a “gentle birth,” there can be mixing of blood. And it doesn’t take a lot of blood mixing. As little as 0.1ml of blood (keep in mind that a teaspoon is 5ml) can trigger Rh sensitization.
  • hemolytic disease of the fetus and newborn is easily treatable – not true. While it might be true for more minor ABO blood incompatibilities, it is not true for Rh disease. If a baby develops hydrops fetalis, they might need intrauterine fetal blood transfusions and an early delivery. After they are born, babies with hydrops fetalis will likely need blood transfusions (because of severe anemia), exchange transfusions (because of extreme levels of jaundice), medicines to manage heart failure, phototherapy, and will likely be on a ventilator to help them breath. And even in a modern NICU, babies with hydrops fetalis still die.
  • everyone is offered a RhoGAM shot as part of a Big Pharma profit ploy – not true. RhoGAM is only given to moms who are Rh-negative, and since 85% of people are Rh-positive, most are never offered RhoGAM.
  • you can just wait to see if you want to get the shot later – not true. If you are Rh-negative and skip the pregnancy dose, waiting until your baby is born to see if they are Rh-positive, you may have already become sensitized. Mixing of blood occurs during pregnancy in at least 12% of cases and that is not just with car accidents, procedures, or trauma. Before RhoGAM started to be used during pregnancy, instead of just after, almost 2% of moms still became sensitized. Although that might seem like a small number, when you consider that almost 4 million babies are born in the United States each year, it ends up being a lot of babies at risk for HDFN if moms start skipping their RhoGAM shots.
  • you can just skip the shot if you don’t want any more kids – not true. Want if you change your mind and decide you do want more kids or have a “happy accident.”
  • there are natural ways to prevent Rh-sensitization – not true.
  • Rhogam causes serious side effects – not true. Rhogam is safe and doesn’t cause autism or any of the other serious side effects that you might see listed on sites trying to scare you away from getting your shot.
  • “First time mothers do not need it. A dose at 28 weeks is unnecessary unless a test shows sensitization has already occurred.” – ridiculously untrue, but I included it to show what kind of advice you will find on some websites. First time mothers definitely could need it, if they are Rh-negative, so that they don’t become sensitized, and if they are already sensitized, a dose isn’t going to help them!

Again, don’t skip your RhoGAM shot.

What To Know About Getting a RhoGAM Shot

There is no reason to skip your RhoGAM shot if it has been recommended for you during or after your pregnancy.

More About Deciding To Get A RhoGAM Shot

That Black Box Warning on Vitamin K Shots

For most parents, avoiding the serious risk of vitamin K deficiency bleeding easily justifies their decision to get their baby a vitamin K shot, despite the presence of a black box warning.

Vitamin K is not a vaccine, but some parents who plan on skipping or delaying their baby’s vaccines, also choose to skip this shot.

Vitamin K Shots

Given soon after a baby is born, a vitamin K shot is the most effective way to prevent both early onset and late onset vitamin K deficiency bleeding.

“The vitamin K injection is also a supposed safeguard in case your car is involved in a car wreck on the way home from the hospital or birthing center with newborn in tow.”

The Healthy Home Economist on why you should Skip that Newborn Vitamin K Shot

Although vitamin K deficiency bleeding has never been very common, it is often fatal, and it has been known for almost 125 years that it is caused by a temporary lack of vitamin K in newborns and younger infants.

Can’t you just give babies oral vitamin K to prevent this bleeding?

While oral vitamin K can prevent early onset vitamin K deficiency bleeding, which might start from birth to when a baby is about two weeks old, it won’t prevent late onset bleeding, even if you give the recommend three doses on schedule over two months (as they do in some countries). Babies with late onset vitamin K deficiency bleeding might not have symptoms until after they are two weeks old, or as late as 5 or 6 months old, and it can only be prevented with a vitamin K shot.

Can’t you just avoid dropping your baby or getting into a car wreck if you skip the vitamin K shot?

While you will hopefully do that anyway, the truth is that we don’t know why some infants with vitamin K deficiency bleeding develop bleeding in their brains, as it usually isn’t any kind of big trauma.

In 2013, seven babies over a period of eight months had early and late vitamin K deficiency bleeding at the Monroe Carell Jr. Children’s Hospital at Vanderbilt University in Nashville.

Three of them required surgery to remove clots “out of their head” and may “have issues with seizure disorders and will have long-term neurological symptoms related to seizures and developmental delays.”

I don’t think any of them were dropped or were involved in car accidents on the way home from the hospital or birthing center.

All had refused to get their baby a vitamin K shot.

Why Do Parents Refuse Vitamin K???

So why do some parents choose to skip their baby’s vitamin K shot?

There are no toxic ingredients in your baby's vitamin K shot.
There are no toxic ingredients in your baby’s vitamin K shot.

Some parents simply think their baby doesn’t need it, especially if they have an uncomplicated, “gentle birth” at home. Of course that has nothing to do with whether or not your baby develops vitamin K deficiency bleeding days or weeks later. It also doesn’t matter whether or not you plan on getting your baby boy circumcised, although your pediatrician probably won’t do the circumcision if you skip the shot.

Other parents are worried about a possible link to leukemia and childhood cancer, an improbable link that was refuted way back in the 1990s.

And still others are worried about the mercury content of vitamin K shots. Or they are worried about other supposed “toxins” in the shot, that it is a synthetic version of vitamin K, or that the dose is too high.

“There is no evidence to suggest that the small amount of benzyl alcohol contained in Vitamin K1 Injection (Phytonadione Injectable Emulsion, USP), when used as recommended, is associated with toxicity.”

Vitamin K Package Insert

Why are they worried about these things?

Mostly because someone on the Internet told them to be worried about them, even though vitamin K shots are safe, are free of mercury and any other toxins you might really need to be concerned about, and the dose of synthetic vitamin K your baby gets in the shot will not cause an overdose.

Or they might be worried that their baby might get up to 100mcg/L of aluminum with each shot. Of course, since they are only getting 0.5ml with the shot, that only equals about 0.05mcg of aluminum! Although it is an extremely tiny amount, why is it even in there? It is not working as an adjuvant as some would propose (again, vitamin K is not a vaccine), but rather is likely just a byproduct of the manufacturing process. And you can be assured that your baby can quickly, and safely eliminate the small amount from their body.

“…several countries have reported a resurgence of late VKDB coincident with policies promoting the use of orally administered prophylaxis, even with multiple-dose regimens.”

AAP on Controversies Concerning Vitamin K and the Newborn

The shot (which works) is certainly safer than going to a compounding pharmacy for oral vitamin K (which won’t work to prevent all cases of late-onset vitamin K deficiency bleeding).

That’s right – oral vitamin K for babies isn’t even available in the United States.

That Black Box Warning on Vitamin K Shots

And then there is the black box warning in the package insert for vitamin K.

The package insert for vitamin K does include a black box warning, although these severe reactions are extremely rare in newborns who get a vitamin K shot to prevent vitamin K deficiency bleeding.
The package insert for vitamin K does include a black box warning, although these severe reactions are extremely rare in newborns who get a vitamin K shot to prevent vitamin K deficiency bleeding.

Why is it there?

It was found that people could have severe, life-threatening allergic reactions (anaphylaxis) if they got a large dose of vitamin K too rapidly through an IV. This type of dose would usually be given to patients with significant bleeding who were being treated with anticoagulants (anticoagulant reversal).

“Based on a review of the literature, use of parenteral vitamin K1 may result in severe hypotension, bradycardia or tachycardia, dyspnea, bronchospasm, cardiac arrest, and death. These reactions are most consistent with a nonimmune-mediated anaphylactoid mechanism. It appears that intravenous administration is more frequently associated with these reactions and occurs at an incidence of 3 per 10 000 doses of intravenous vitamin K1.”

Jamie N Brown on Characterizing the Severe Reactions of Parenteral Vitamin K1

This is not what happens when babies get their vitamin K shot though, although there is one non-fatal case report of anaphylaxis after a baby in Turkey got a vitamin K shot in 2014.

There are nearly 4 million births in the United States each year.

Almost all of them get a vitamin K shot very soon after they are born.

And yet there are no reports of anaphylaxis in the United States.

There are isolated case reports of anaphylaxis in newborns to other things, including antibiotics, hepatitis B immunoglobulin, total parenteral nutrition (TPN), and atracurium (used in anesthesia) – but not to vitamin K shots.

“Therefore the INTRAVENOUS and INTRAMUSCULAR routes should be restricted to those situations where the subcutaneous route is not feasible and the serious risk involved is considered justified.”

Vitamin K Black Box Warning

That’s why most parents don’t skip getting their baby a vitamin K shot. Or they come to regret the decision if they do.

“What it comes down to is that giving your child a shot of Vitamin K at birth is a small price to pay, especially when the cost of rejecting the shot can be severe brain injury and death. I can’t change what happened to Olive, but I can try to prevent it from happening to another baby.”

Olive’s Story

For most parents, avoiding the serious risk of vitamin K deficiency bleeding justifies their baby getting a vitamin K shot.

And that’s why vitamin K deficiency bleeding is so rare these days – at least among those babies whose parents didn’t choose to skip their vitamin K shot.

What To Know About That Black Box Warning on Vitamin K Shots

For most parents, avoiding the serious risk of vitamin K deficiency bleeding easily justifies their decision to get their baby a vitamin K shot, despite the presence of a black box warning.

More About That Black Box Warning on Vitamin K Shots

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Lead Test Warning

If your child is under age six years and “had a venous blood lead test result of less than 10 (µg/dL) from a test analyzed using a Magellan Diagnostics’ LeadCare analyzer,” then he or she needs to have a repeat lead test.

The FDA has warned about the potential for falsely low test results from certain lead tests.
The CDC and FDA have warned about the potential for falsely low test results from certain lead tests.

Has your child had a lead test in the past three years?

Then he might need to be tested again.

The FDA, CDC, and AAP are warning about a possible problem with lead tests that have been done on children since 2014.

FDA Blood Lead Test Safety Alert

Specifically, the FDA is warning about all four of Magellan Diagnostics’ lead testing systems, including their LeadCare, Lead Care II, LeadCare Plus, and LeadCare Ultra test, as they might “provide results that are lower than the actual level of lead in the blood.”

Your child is not affected if they:

  • are over 6 years old (as of May 17, 2017)
  • had a lead test done from a finger or heel stick (the warning is about tests done on blood drawn from a vein, like in their arm)
  • had a lead test done using a different, non-Magellan Diagnostics testing method
  • had a lead test that was higher than 10 micrograms per deciliter (as they would hopefully have undergone retesting and a look for possible sources of lead exposure in and around their home if it was over 10)

Where are these Magellan Diagnostics’ lead testing systems used? They are used in some doctors’ offices and clinics and in some laboratories that do lead testing.

“While most children likely received an accurate test result, it is important to identify those whose exposure was missed, or underestimated, so that they can receive proper care. For this reason, because every child’s health is important, the CDC recommends that those at greatest risk be retested.”

Dr. Patrick Breysse, PhD, CIH, director of CDC’s National Center for Environmental Health

The American Academy of Pediatrics is also “urging parents of children ages 6 and younger who received a venous blood test for lead (in which blood is drawn from the arm), to discuss with their child’s pediatrician whether a new test is needed.”

Risks for Lead Poisoning

Do we still need to worry about high lead levels and lead poisoning so long after lead was removed from paint and gasoline?

Tragically, yes.

It is estimated that children in at least 3 to 4 million households in the United States are still exposed to high lead levels.

Children are especially at higher risk if they:

  • live in a home built before 1978, with the risk increasing with the age of the home, especially if it was built before 1960
  • have family members, friends, or neighbors with lead poisoning
  • live in a community with high levels of lead poisoning in children or a possible source of lead contamination, like a lead smelter or battery recycling plant
  • have pica (eat non-food substances)
  • are exposed to alternative medicine that might be contaminated with lead
  • live with a family member that works has a hobby in the lead-industry

And the latest recommendations are that all children have a risk assessment for high lead levels when they are 6-12 months old and again at 18-24 months. Those at high risk, on Medicaid, or in high prevalence areas should be formally tested at those ages.

What to Know About the FDA Blood Lead Test Safety Alert

If your child is under age six years and “had a venous blood lead test result of less than 10 (µg/dL) from a test analyzed using a Magellan Diagnostics’ LeadCare analyzer,” then he or she needs to have a repeat lead test.

More About the FDA Blood Lead Test Safety Alert

Why Not Watch 13 Reasons Why?

Although you may have been warned about letting your kids watch 13 Reasons Why, know that the American Foundation for Suicide Prevention states that you shouldn’t “be afraid to have a conversation with your children about the Netflix series and the issues it raises.”

After a teenage girl's perplexing suicide, a classmate receives a series of tapes that unravel the mystery of her tragic choice.
After a teenage girl’s perplexing suicide, a classmate receives a series of tapes that unravel the mystery of her tragic choice.

My kids won’t be watching 13 Reasons Why, the new series on NetFlix about a teen who kills herself.

It’s not that I won’t let them. It has more to do that they don’t seem to watch anything that isn’t on YouTube.

Would I let them watch it? Sure. It is impossible to hide the fact that suicide is one of the leading causes of death among teenagers.

That should be the nationwide controversy that we are all talking about!

“Evidence shows that providing support services, talking about suicide, reducing access to means of self-harm, and following up with loved ones are just some of the actions we can all take to help others.”

The National Suicide Prevention Lifeline

Should you let your teen watch 13 Reasons Why? As it is rated TV-MA, they almost certainly shouldn’t watch it without supervision or support.

The 13 Reasons Why Controversy

By offering immediate counseling to everyone that may need it, local crisis centers provide invaluable support at critical times and connect individuals to local services.
By offering immediate counseling to everyone that may need it, local crisis centers provide invaluable support at critical times and connect individuals to local services.

Did your school send home a warning telling you to make sure your kids avoid the show?

How does that work? Even if they don’t watch it, they might have friends that do.

Whatever you decide, you should at least talk to your kids about it. They probably are already talking about it with their friends.

And see what other folks are saying to help you make your decision:

Keep in mind that while many folks have pitchforks out because of the series, the American Foundation for Suicide Prevention, the American School Counselor Association and the National Association of School Psychologists suggest using 13 Reasons Why as a teachable moment to initiate a helpful conversation about suicide prevention and mental health.

And that conversation can start even if your kids don’t watch the show.

Continue reading “Why Not Watch 13 Reasons Why?”

Autism Acceptance vs Autism Awareness

Did you know that there isn’t universal support for the “light it up blue” Autism Awareness campaign of Autism Speaks? More people are now supporting other organizations and Autism Acceptance instead.

Apple has added an autism acceptance page to their app store.
Apple has added an Autism Acceptance page to their app store.

April is traditionally recognized as Autism Awareness Month and April 2 as World or International Autism Awareness Day.

These awareness campaigns are supported and driven by Autism Speaks and their “light it up blue” drives.

Many people will likely be surprised that there isn’t universal support for the “light it up blue” campaign of Autism Speaks to “shine a light on autism” on World Autism Awareness Day. Instead, in addition to the many people who think that April should be more about Autism Acceptance and less about autism awareness, there are many people who think that “Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities” because they don’t listen to #AcuallyAutistic people and historically:

  • have not included an autistic person among their senior leadership
  • have advocated anti-vaccine ideas
  • use a very small amount of their budget to directly help autistic people pay for the services and supports that they need

Instead of Autism Speaks, the Thinking Person’s Guide to Autism suggests that people look for an autism group that focuses on support (not a cure), evidence based interventions, inclusiveness, and advocacy for the human and civil rights of all autistic people. And that the focus move to acceptance.

Similarly, Steve Silberman, the author of Neurotribes, explains why autism awareness is not enough.

Autism Advocacy Groups

As everyone becomes more aware of autism, they are also becoming more aware of the differences in all of the autism organizations out there. And that some provide bad autism information.

Consider the Chili’s public relations blunder, in which they were planning to donate 10% of sales on April 7, 2014 to the National Autism Association, an anti-vaccine autism organization. That situation highlighted how important it is to know the organization you are supporting and or visiting information and advice.

The organization in question, in addition to promoting unproven autism treatments, like chelation, clearly states that they believe that “vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.” They also state that “research to investigate, and reduce, adverse events in immunized individuals is currently nonexistent.”

The National Autism Association is the same organization that used anti-vaccine talking points to attack Dr. Paul Offit and his appearance on Dateline in an appearance with Matt Lauer that was critical of Andrew Wakefield. And it is the same organization that has tried to defend Andrew Wakefield’s fraud.

While many other autism organizations have distanced themselves from the idea that vaccines cause autism, this group is pressing on with the idea.

Why is that a problem? Keeping the focus on vaccines, after so many studies have shown that there is no link between vaccines and autism, diverts resources away from services and support for children and autistic adults.

Especially with the rise in vaccine-preventable diseases, including large measles outbreaks, it is very disappointing that Chili’s chose this organization to support.

Do you know how to find a reputable autism group that provides good autism information.

Reputable Autism Groups and Organizations

Among the most reputable autism groups and organization are the:

  • Autistic Self-Advocacy Network (ASAN) – Our projects seek to improve public understanding of autism, to involve the Autistic community in research that is relevant to the community’s needs, to empower Autistic people to take leading roles in advocacy, and to promote inclusion and self-determination.
  • Autism Society of America – Founded in 1965, the Autism Society helps over a million people each year through a grassroots nationwide network of local and state affiliates.
  • Autism Women’s Network (AWN) – a supportive community for Autistic women of all ages, our families, friends and allies.
  • National Autistic Society –  the leading UK charity for autistic people (including those with Asperger syndrome) and their families.
  • The Global and Regional Asperger Syndrome Partnership (GRASP) – works to improve and enrich the lives of adolescents and adults on the autism spectrum, and their families through, community advocacy & outreach, education, peer supports, programming and services.
  • The Arc and autism NOW – provides high quality resources and information in core areas across the lifespan to individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, caregivers, and professional in the field.
  • Autism Science Foundation – supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research.
  • Autistica – funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions
  • NOS Magazine – a news and commentary source for thought and analysis about neurodiversity culture and representation.
  • Golden Hat Foundation – changing the way people on the autism spectrum are perceived, by shining a light on their abilities and emphasizing their great potential.
  • Simons Foundation Autism Research Foundation (SFARI) – sponsors research that promises to increase our scientific understanding of autism spectrum disorders, thereby benefiting individuals and families challenged by these disorders
  • Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) – brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autism spectrum.

Are you still going to “light it up blue?”

How about checking out these other autism groups instead and learn more about autism acceptance. You might also be interested in these blogs by autistic people.

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