Ensuring Lasting Smiles Act

Madam Speaker, I yield myself such time as I may consume.

Madam Speaker, I am disappointed that all Members could not reach an agreement on this bill. I have an

amendment that would specify the types of conditions required to be addressed by this bill, which would help clarify its intent for the implementing agencies.

Madam Speaker, I include in the Record the text of my proposed amendment.

In the heading of section 2, strike ``congenital anomaly or

birth defect'' and insert ``craniofacial, oral, or

maxillofacial congenital anomaly or birth defect''.

In section 2799A-11 of the Public Health Service Act,

section 726 of the Employee Retirement Income Security Act of

1974, and section 9826 of the Internal Revenue Code of 1986,

as proposed to be added by section 2--

(1) in the heading, strike ``congenital anomaly or birth

defect'' and insert ``craniofacial, oral, or maxillofacial

congenital anomaly or birth defect''; and

(2) in subsection (a), strike the term ``congenital anomaly

or birth defect'' and insert ``craniofacial, oral, or

maxillofacial congenital anomaly or birth defect'' each place

such term appears.

Madam Speaker, the stated goal of the bill is a good one, making sure those who, through no fault of their own, are born with a condition requiring extensive medical care can eat, drink, and thrive.

I would love to be able to tell families like the one in my district with two children experiencing ectodermal dysplasia that insurance would pay for the hundreds of thousands of dollars of surgery necessary to allow their teeth and mouths to function properly. But this bill needs more work, and my amendment could have addressed its most significant flaw.

Had the bill gone through regular order, I would have offered this corrective amendment.

The biggest problem here is that not one person can articulate which medical procedures or treatments would be required to be covered by insurance.

The bill is titled healthy smiles, referencing cleft palate, ectodermal dysplasia, et cetera, but not one person can articulate which medical procedures or treatments would be required to be covered by insurance. This is, in part, because the FDA has no statutory or regulatory definition of what a congenital anomaly or birth defect is.

Further, one part of the bill requires insurers to ``include any medically necessary item or service to . . . restore any body part to achieve normal body functioning or appearance,'' while another part provides that ``'treatment' shall not include cosmetic surgery.''

Technical comments from the Department of Labor support my belief that these two provisions ``seem to be in tension.'' There is a tension between the two sections.

Because the language is so vague, CBO found it difficult to estimate the cost. They expressed uncertainty around identifying the procedures and services that would be considered medically necessary. Nonetheless, they took a stab at it and guessed it would cost around $1.8 billion.

My amendment would resolve these concerns by replacing the phrase ``congenital anomaly or birth defect'' with ``craniofacial, oral, or maxillofacial congenital anomaly or birth defect'' to specify the types of conditions advocates of this bill have been discussing for months. Most of the people who signed on as cosponsors thought that was just what they were doing. They didn't know they were going to cover, as the gentlewoman has said, the 4 percent of children born with any kind of a birth defect.

Given that my amendment cannot be considered today, I will be voting ``no.''

Now, you may wonder, how did I come to this conclusion? When my oldest son was born 16 years ago, when I called my wife's father, his first question was, ``Does he have all his fingernails?'' because my wife was born with a congenital birth defect. She doesn't have fingernails on her index fingers. This has caused them to be injured numerous times over the years.

There is no question it qualifies under this bill for some kind of treatment, whether it be an implant to replace those nails--if this bill passes, we will be doing everything from the healthy smiles that the bill purports to do all the way down to fingernails.

Now, she is fine. She has grown up. She has adjusted. Everything is good. But the first question my father-in-law asked was, ``Does he have all his fingernails?'' because, for years, it was a concern to him as a father, as a parent.

This bill would deal with that, and that is why it is hard to say what it is going to cost because a lot of smaller defects like my wife's fingernails would be covered under this.

And if it is covered, by golly, you know they are going to fix it. The worst thing she has to do now is wear gloves when we take out the Christmas tree and try to be careful. But as a child, it was a bigger issue, and like I said, the tips of her index fingers are a little bulbous. She might be offended by this, but if you look closely, it looks a little bit like E.T.'s finger, though it is not quite as long and it doesn't light up. But it is a birth defect that this bill would cover at huge cost to the American public and to the American taxpayers.

This bill goes too far. I wish we had the opportunity to accept my amendment, which we can't do on a bill that is on suspension, because then we could make sure it dealt with the big items that only affect a much smaller part of the population and that truly do need to be dealt with.

Madam Speaker, I reserve the balance of my time.

Madam Speaker, I yield myself the balance of my time.

Madam Speaker, I will submit that my amendment was not offered at the full committee. Two years ago, when we were taking this bill through regular order, at that time it was discussed that we would try to work on language that would narrow the scope before it came to the floor. I assumed that that would be done before this bill was brought up on a suspension; that has not happened. I would be more than happy, if we have to come to loggerheads over it, that we have that discussion where we can discuss all the potential costs, all the potential birth defects that might be covered, including the minor ones, the ones that don't have an effect on lasting smiles, which is also included in this.

Now, the gentlewoman's heart is in the right place, and I have great respect for her, and understand what she is trying to do. I just think that there is so much unknown cost for so many minor birth defects and small inconveniences that might be cosmetic or might not be, depending on which doctor makes that decision, because we don't have a good definition either in the bill or in the standard lingo of the FDA, et cetera.

I think we are buying a whole lot more expense, both to the American taxpayer, and, I believe, this is going to push up the cost of health insurance on families that are already having difficulties making those health insurance payments. All of that is correct.

And the chairman of the committee--also his heart is in the right place--mentioned ectodermal dysplasia. I have no problem with us treating that. It affects a small number of people. It is a huge cost on a handful of families out there--maybe a few more than a handful-- but it does affect people disproportionately who cannot afford to have that fixed, and it does create huge problems on eating, on talking, et cetera. Those are the things we want to go after.

What I want to make sure we are not doing is spending billions of dollars of American taxpayer dollars or raising the cost of health insurance because we are going to take care of everything down to two index finger fingernails missing, et cetera. That is my concern.

Madam Speaker, as you can tell, I feel passionately about this, and I yield back the balance of my time.

Madam Speaker, on that I demand the yeas and nays.

Madam Speaker, I rise in strong support of H.R. 1916, the Ensuring Lasting Smiles Act.

The purpose of this bill is to provide health insurance benefits for outpatient and inpatient items and services related to the diagnosis and treatment of congenital anomalies and birth defects.

This bill requires private health insurance plans to cover the diagnosis and treatment of birth defects, congenital disorders, or congenital malformations, conditions developed prenatally and may be identified before or at birth, or later in life.

The coverage must include services and items that functionally improve, repair, or restore any body part that is medically necessary for normal bodily functions or appearance, as determined by the treating physician.

This bill protects patients against increased insurance premiums by clearly specifying that coverage for these treatments may be subjected only to the same limits that apply to other injuries or sicknesses without imposing any greater financial responsibilities on the patient or family.

This legislation would also close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care.

It would ensure that health plans cover medically necessary services related to a patient's anomaly or birth defect, including any serious dental and oral-related procedures that are necessary to maintaining health and overall function.

Insurance companies usually cover the preliminary procedures to treat congenital anomalies, but often deny and delay follow-up reconstructive procedures.

Denial or delay of these reconstructive procedures could lead to long-term physical and psychological injuries.

Insurance companies claim these follow up procedures are only cosmetic in nature, which then places a significant burden on patients and their families.

It is relatively rare for a child with a congenital deformity or developmental anomaly to undergo just one procedure that corrects all the associated health implications the first time.

On average, these children can expect anywhere from three to five surgical procedures and many more treatments before achieving structural normalcy and function in the affected body parts.

These families are then forced to pay huge out-of-pocket costs for treatment coverage or, in worst case scenarios, terminate treatment.

For example, people born with ectodermal dysplasia's are often unable to properly develop teeth.

Their teeth may be missing, completely absent, have defective enamel or be shaped differently.

If the teeth are not repaired or replaced, these individuals could have chewing, swallowing, digestive, speech and self-esteem issues.

Someone born with ectodermal dysplasia spends a significant amount of money on necessary medical and dental care throughout their lifetime.

This amount of money can become so excessive that families may have no option other than selling their cars, remortgaging their homes, and foregoing a college education to afford medically necessary dental care.

Far more families simply go without care because they can't afford it.

Dental care is also subject to a double-standard, while some individuals who lose their teeth due to an accident receive dental benefits under the existing statutes, those who are missing teeth due to ectodermal dysplasias, a medical condition they were born with, do not receive these same dental benefits.

The Ensuring Lasting Smiles Act would fix this.

This bill would help more families than those affected by the ectodermal dysplasias. It would cover a broad range of congenital anomalies.

Many people born with congenital anomalies suffer from severe oral defects such as:

Cleft lip or palate

Hypodontia

Enamel hypoplasia

Skeletal defects like craniosynostosis

Vision defects like congenital cataracts or aphakia

Hearing defects like microtia

Other loss of bodily functions

According to the Center for Disease Control and Prevention (CDC), one in 33 babies in the United States is born with a congenital anomaly.

Of those 120,000 children born annually with birth defects, approximately 40,000 require reconstructive surgery.

Medical professionals and surgeons are fortunately able to correct many of these problems, however some insurance companies deny access to care by labeling the procedures as ``cosmetic'' or ``non-functional'' in nature.

Too many children born with congenital anomalies are denied coverage despite the long-term harm of such conditions.

The Ensuring Lasting Smiles Act would address delays and denials in coverage and guarantee that children suffering from birth defects and anomalies get the treatment they need.

I ask my colleagues to join me in voting for H.R. 1916 because this law guarantees the payment of health insurance benefits for necessary medical care and treatment due to any congenital anomaly.

These families deserve to see the day when they no longer have to fight for coverage of medically necessary treatments and their children and loved ones receive the treatments they desperately need and deserve.

Madam Speaker, I move to suspend the rules and pass the bill (H.R. 1916) to provide health insurance benefits for outpatient and inpatient items and services related to the diagnosis and treatment of a congenital anomaly or birth defect, as amended.

Madam Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and include extraneous material on H.R. 1916.

Madam Speaker, I yield myself such time as I may consume.

Madam Speaker, I rise in full support of H.R. 1916, the Ensuring Lasting Smiles Act. On behalf of the 4 percent of American children born annually with congenital anomalies or birth defects, I am very proud to sponsor this much-needed legislation.

This bill will ensure that health plans do not deny or delay medically necessary treatment of congenital anomalies. In many cases, coverage for well-known anomalies, like heart defects or spina bifida, is already the standard. But for babies who have oral defects such as cleft palates, skeletal defects, congenital cataracts, or hearing defects, insurance companies have systematically denied or delayed medically necessary treatments.

I became a sponsor of this legislation after Kevin Koser testified at our Health Subcommittee, which you are a member of, Madam Speaker, about his beautiful son, Kannon. He shared with the subcommittee how Kannon asked Santa Claus for teeth so he could ``chomp big bites'' of food.

I was really shaken by that and by the fact that in our country, such a rich and great country as America, we would put treatment that allows a child to eat out of reach because of insurance red tape.

A baby named Rosie in my congressional district is one of the 1,300 babies born in the United States each year with congenital cataracts. In just a few months, her family spent over $4,000 out of pocket on contact lenses for her. Without these lenses, babies like Rosie are blind, and they have no chance of ever developing normal vision.

These stories are repeated across our country every single day, but today is the day that we can begin to change that. This legislation is one of the most popular bills in the House, with 316 bipartisan cosponsors, including more than half of the Republican Conference.

The time has come for this important, popular, and much-needed bill to finally pass the House of Representatives.

Madam Speaker, I reserve the balance of my time.

Madam Speaker, the bill that we are taking up today was passed by the Energy and Commerce Committee. It hasn't changed. The gentleman, Mr. Griffith, had an amendment. He withdrew it. He had the opportunity, but he withdrew it.

Madam Speaker, I yield such time as he may consume to the gentleman from New Jersey (Mr. Pallone), the chairman of the Energy and Commerce Committee.

Madam Speaker, I yield myself the balance of my time.

I thank the gentleman for his kind comments about me. I think that there are a couple of important points to be made. And that is that CBO estimates that insurers will respond to this bill by raising premiums by less than 0.1 percent. What CBO does not score are the savings from providing this needed medical care because that medical care goes on and on and on. And the costs to families are exorbitant.

As I said earlier today, I think this is a very good bill. I acknowledge all the advocates from all over the country that worked so hard to bring us to this moment.

Madam Speaker, I look forward to the vote today on this bill that has been with us since 2020, and I yield back the balance of my time.

Madam Speaker, I thank Chairwoman Eshoo for yielding.

Madam Speaker, I rise in strong support of H.R. 1916, the Ensuring Lasting Smiles Act, a bipartisan bill that will help patients with congenital anomalies and birth defects get the necessary treatment that they deserve.

Three percent of American children are born with congenital anomalies or birth defects that affect the way they look, develop, or function, often for the rest of their lives. These children require serious medical treatment. But for far too long, insurance companies have been unfairly denying treatment, despite an official medical diagnosis, by deeming it cosmetic or because the treatment involves dental services. This is unacceptable. This treatment is critically important and medically necessary, particularly for children with serious dental anomalies.

During our legislative hearing on this bill in committee, we heard from Kevin Koser about his family's longstanding struggles to get his son Kannon's medical treatment covered. Kannon was diagnosed with ectodermal dysplasia when he was 1 year old, and this had a drastic impact on his health and quality of life. Ectodermal dysplasia is a congenital anomaly that affects the development of the hair, skin, teeth, and other body parts. Kannon sprouted his first tooth at the age of 4, and this has severely restricted his diet and impacted his ability to speak.

In accordance with the treatment plan established by his doctor, his family began pursuing dentures for Kannon; however, their family health plan denied the medically necessary treatment for Kannon and deemed it as not a covered benefit. The Koser family is not alone.

Madam Speaker, there are countless children across the country whose medically necessary treatments are unfairly denied by insurance companies. These children may have to forego the care they need to live healthy and fulfilling lives because their families simply cannot afford the treatment. Too often, their families are stuck with the financial burden of paying out of pocket for medically necessary treatment despite having health insurance, and children like Kannon are forced to delay necessary care that is meant to restore bodily function.

The National Foundation for Ectodermal Dysplasias estimates that some families will pay upwards of $150,000 out of pocket in their lifetime for medically necessary treatments. This is for medical care that should be rightfully covered by insurance.

The Ensuring Lasting Smiles Act will require all individual and group market health plans to cover medically necessary treatment resulting from congenital anomalies and ensure that children like Kannon get the treatment they need. This is important, commonsense legislation that has--as Ms.

Eshoo said--310 bipartisan cosponsors. I commend Ms. Eshoo for her leadership on this legislation as the prime sponsor of the bill.

This important bill will improve the health and well-being of countless Americans and ensure that individuals born with congenital anomalies have the opportunity to live a healthy life. Children like Kannon and his family should have the peace of mind to know that medically necessary treatment will be covered.

Madam Speaker, I urge all of my colleagues to support this bill.

Madam Speaker, this evening, the House of Representatives passed H.R. 1916, the Ensuring Lasting Smiles Act, a bill which would require health plans to cover medically necessary services related to congenital anomalies.

I would like to share the story of one of my constituents, Caleb Locke, a young man from Ashaway, Rhode Island, who was born with ectodermal dysplasia. As a result of his condition, Caleb's lower jaw is both thin and short with no ridge, and his posterior upper jaw lacks sufficient bone structure.

Caleb is missing teeth, and he needs dental implants, but this process will require multiple surgeries, including bone grafts from his hip to reconstruct his jaw and sinuses.

Unfortunately, and unbelievably, Caleb's health insurance has deemed these procedures as ``cosmetic'' and has consequently denied coverage.

Madam Speaker, Caleb needs these surgeries, and they are clearly not cosmetic. It is wholly unacceptable that coverage can be denied on those grounds.

Caleb, and anyone else with a congenital anomaly, should never be denied coverage for medically necessary services related to their conditions.

That is why I was proud to support the passage of H.R. 1916 this evening, and I urge our colleagues in the Senate to promptly do the same.