DC & the DDNC

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A week and a half ago, I went to Washington, D.C., to participate in the Digestive Disease National Coalition’s Public Policy Forum. I had planned to follow up with a recap post right after, and I left the forum informed and energized and full of plans to take what I’d learned and done and keep those balls rolling forward.

And then I left the Senate building and ran for a train, then a bus, then a plane, then another plane, and got home at midnight, and nursed a baby at 3am, and went to work at 8am, and spent the next week trying to catch up, and now here we are….

Honestly, I probably would have shared something earlier, but as I think back on my whirlwind trip to D.C., it’s a little overwhelming just figuring out where to start. I spent all of Sunday afternoon hearing presentations from people who know an awful lot about obstacles to care that I have only barely scratched the surface on, or that I have experienced but didn’t really have the terminology to put in a broader context, and about other things that have to do with other diagnoses entirely but were eye-opening when it comes to important health issues that can impact all of us; and then I spent all of Monday having conversations and connecting dots and figuring out how to share our story in a way that matters and trying to sort out where my efforts go next; and I left wanting to share ALL the things all at once because it’s so important and people’s lives literally depend on it and WE can be the ones to make a difference!

But also, well, it’s a LOT to digest.

So I’m going to step back and hit pause on trying to regurgitate all the information I gobbled down and half-absorbed in a span of less than 36 hours. If I’ve learned anything over the last few years, I know that large quantities are easier to digest if they’re spaced out over time and appropriately chewed over….so I’ll give all that info some breathing room.  

What is useful right now, I think, is this: If you’re thinking about doing something like this, whether it involves traveling to D.C. or meeting with your lawmakers locally or even just picking up the phone for the first time, DO IT. Your story matters. Your voice can make a difference.

If you’re following along because you’ve considered participating in something similar, or you found this blog because it’s now January 2020 and you’re debating whether you should register for the DDNC Public Policy Forum and want to know more about what it’s all about, here’s how it went for me.

I got in to D.C. on Saturday evening, which turned out to be perfect timing for two reasons:

I had time on Saturday night to walk by the White House all lit up after dark, and – more importantly – to put this in my belly.

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Yes, I did eat the entire thing. I regret nothing.

It also allowed me to spend all of Sunday morning doing a walking tour of the major monuments before the forum began. I mention this because it became an important part of my experience there: right before I participated in a concentrated effort to make our voices heard so that we might shape our nation for the better, I spent four hours immersing myself in monuments to people who gave literally everything to help shape our nation for the better, and to protect my right to make my voice heard. I’d never been to D.C. before, but even if I had, it was an incredibly poignant way to kick off the forum.

Sunday afternoon involved a series of presentations from physicians, patient access advocates, and industry representatives who spoke about things like current research and funding, obstacles to access like step therapy and non-medical switching, and the highlights of the DDNC’s legislative agenda (you can find more detail about their legislative agenda here).

I also met some other people who were there through the Oley Foundation, including a member of the Oley staff who was absolutely key in my attending the DDNC forum at all, as well as some parents who are among the very small group of people who can truly understand what we have been through with L. I was able to talk freely about our journey without stopping to explain anything, in a way that I have very rarely been able to do, and with people who don’t bat an eye at talking about some of the less pleasant facets of digestive disease – a whole group of people who think it’s perfectly acceptable to talk about vomit and poop while eating breakfast! My people.

And, on Sunday, I finally found out who I’d be meeting with on Monday.

This day was useful for helping me contextualize some of the obstacles we’ve run into and providing some language to use to help connect our experience with current policy issues, and it also provided an opportunity to connect with people and organizations that can provide resources for me as a caregiver and can help me continue and hopefully expand my advocacy efforts (for example: you can go here to share your story about obstacles you’ve faced regarding coverage for medical foods, like enteral formula).

On Monday, we reconvened for another brief overview of the highlights of the DDNC’s legislative agenda and got together with our teams to learn each other’s stories and talk strategy. My team was a pretty well-rounded group: me, an adult patient who relies on enteral feeds after a difficult battle with throat cancer, the president of the United Ostomy Associations of America, and a GI nurse whose job in part involves colorectal cancer screening. The DDNC tries to group people based on the state they live in so they can try to arrange meetings with the appropriate lawmakers, but there aren’t a lot of participants from the great state of Missouri, so our little group represented Maine and Delaware as well.

I was a little nervous leading up to Monday, partly because I didn’t know who we’d be meeting with until the day before, and mostly because I’d never done this before and didn’t know what to expect. But I felt much more equipped to steer these talks after the Sunday information sessions, and one of the members of our group had participated in similar forums many times (I think this is probably true of most of the groups there that day), so she led the way at first, and we had a really lovely conversation at the first office we visited. The aides we spoke with seemed genuinely moved by the stories we told, and after the first meeting my team kind of found a groove and the words flowed more and more easily as the day went on.

We met with a total of 8 offices – none of the actual Senators or Representatives, but with their aides and health care advisors, who on the whole seemed very engaged and well-informed about the issues we discussed. Our conversations were brief – anywhere from 10 to 25 minutes, which meant we needed to present our stories in a focused way that really got to the heart of the issues (I had practiced the night before, because, as you may have gathered, being concise is not my strong suit….). After the first couple of meetings, though, we had our elevator speeches down, and by the end of the day we were even talking about facets of each other’s stories, weaving a bigger narrative about the way these issues impact all of us.

One useful tidbit I’ll leave here is a piece of advice from another mom who’s had a lot more experience on the Hill than I have: Bring a simple handout you can leave with the legislator or aide. The DDNC provides a folder of information to leave behind, but it’s, again, a lot to digest, and it’s focused on the policies, not the patients. I brought with me a half-sheet handout with L’s picture, a very basic summary of his health journey, and a simple list naming specific legislation we’d like them to support, to help connect real people with the policies at hand. If you’d like to create something similar, mine looked like this:

Meet L

And of course, I can’t post this without including the mantra of the weekend: Wear comfortable shoes. You’ll be doing a LOT of walking.

I came away feeling, like I said above, informed and inspired and energized, and I’m looking forward to the promised follow-up from the DDNC with advice about how to keep these conversations going. I took along photos of L to share in our meetings, but I’m hoping to go back next year and actually take L with me – I want to keep being an advocate, and equally as important, I want L to see me being an advocate, and know that he has a voice too.

Maybe we’ll see you there?

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Making the Patient Voice Heard

This week was Rare Disease Week, with Rare Disease Day observed on February 28. On Thursday, I shared a post from a couple years ago about what Rare Disease Day means to me: making the Patient Voice heard.

It just so happens that Rare Disease Day is observed (in non-leap years) on another day of significance to me: my birthday. I’ll be honest, now that I’m in my 30s, my birthday holds a lot less significance for me. I’m past the excitement of getting older, but not yet dreading the turn of another year; I’m solidly at the point in my life where I’m not really young and I’m not really old and my actual age matters so little that I occasionally have to do the math to confirm how old I really am.

This year, though — this year is a little different. I’m a person who invests weight in certain numbers (I once very nearly had a panic attack because Z was so careless as to park on the 5th floor of the parking garage on our way to a very commonplace minor procedure) and this year I’m turning 34 — one of my luckiest numbers of all.

Since Z turns 34 in the same year, I wanted to make this a “year of 34” for us — a year in which we take charge of our lives and start saying yes to things again after plugging along in survival mode for so long. That the launch date of my “year of 34” falls on Rare Disease Day turned out to be serendipitous, because it also coincides with this year’s Digestive Disease National Coalition Public Policy Forum — an event that brings together patients, clinicians, and others from the Digestive Disease community to learn more about healthcare policy and speak with lawmakers to advocate for better healthcare.

So today, as Rare Disease Week wraps up, I’m headed to Washington, D.C., to make the patient voice heard.

Stay tuned for more….

To the ‘pro-life’ senators who support the AHCA:

This is my daughter:

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She doesn’t have a name yet, but her brother is already smitten with her. She appears to be healthy so far, and we’re hoping to meet her around Halloween.

This is my son:

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His name is Lucas. He loves fire trucks, Star Wars, and Neil Diamond. He just turned 4.

If you refuse to protect the life of my son as fervently as you would protect the life of my unborn daughter, you cannot claim to be pro-life.

You see, Lucas has a pre-existing condition. He happened to be born with gastroschisis – a randomly-occurring congenital condition that left a hole in his abdominal wall – and as a result he has short bowel syndrome. It cost more than $3 million to keep him alive in the first few months after he was born, and several hundred thousand more since then, thanks to 11 surgeries, daily at-home intravenous nutrition and tube feeds, home nursing care, frequent visits to medical specialists and various kinds of therapists, and so many hospital admissions that I’ve actually lost count.

You claim to be pro-life, and yet you support a bill that would make it impossible for us to afford coverage for the medical care my son needs to stay alive.

Gastroschisis often results in a C-section in order to protect the baby’s organs during birth. You claim to be pro-life, and yet your so-called “healthcare” bill would make mothers question whether they should have a medically necessary C-section and would threaten the future health of any mother who has had a C-section for any reason, because you’ve classified having had a C-section as a pre-existing condition that will price many families right out of the market.

You dangle the impossibly unrealistic carrot of “freedom of choice” in healthcare as though it were a pinnacle of American values, and yet you would force a woman to carry to term a child who is incompatible with life.

You claim to be pro-life, and yet your bill would make expectant mothers think long and hard at the end of the first trimester, when many congenital conditions are discovered, about whether they can afford to carry to term a life-long pre-existing condition. You would set parents up to make that decision based on their finances rather than their beliefs or prognoses.

You claim to be pro-life, and yet you would throw essential health benefits to the wind, leave 23 million more Americans uninsured, raise premiums for the elderly by as much as 800 percent, and cut $834 billion in Medicaid benefits for low-income Americans in order to give tax cuts to the wealthy. 

You claim to be pro-life, and yet you have thrown the living to the wolves.

If you vote in favor of the AHCA, you are not pro-life.

If you believe that people’s right to life should not depend on their wealth, call your senators today and demand they vote no on the AHCA. 

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To the ‘pro-life’ representatives who voted for the AHCA:

This is my daughter:

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She doesn’t have a name yet, but her brother is already smitten with her. She appears to be healthy so far, and we’re hoping to meet her around Halloween.

This is my son:

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His name is Lucas. He loves fire trucks, Star Wars, and Neil Diamond. He just turned 4.

If you refuse to protect the life of my son as fervently as you would protect the life of my unborn daughter, you cannot claim to be pro-life.

You see, Lucas has a pre-existing condition. He happened to be born with gastroschisis – a randomly-occurring congenital condition that left a hole in his abdominal wall – and as a result he has short bowel syndrome. It cost more than $3 million to keep him alive in the first few months after he was born, and several hundred thousand more since then, thanks to 11 surgeries, daily at-home intravenous nutrition and tube feeds, home nursing care, frequent visits to medical specialists and various kinds of therapists, and so many hospital admissions that I’ve actually lost count.

You claim to be pro-life, and yet you have voted for a bill that would make it impossible for us to afford coverage for the medical care my son needs to stay alive.

Gastroschisis often results in a C-section in order to protect the baby’s organs during birth. You claim to be pro-life, and yet you have voted for a bill that would make mothers question whether they should have a medically necessary C-section and would threaten the future health of any mother who has had a C-section for any reason, because you’ve classified having had a C-section as a pre-existing condition that will price many families right out of the market.

You dangle the impossibly unrealistic carrot of “freedom of choice” in healthcare as though it were a pinnacle of American values, and yet you would force a woman to carry to term a child who is incompatible with life.

You claim to be pro-life, and yet you have voted for a bill that would make expectant mothers think long and hard at the end of the first trimester, when many congenital conditions are discovered, about whether they can afford to carry to term a life-long pre-existing condition. You have set parents up to make that decision based on their finances rather than their beliefs or prognoses.

You claim to be pro-life, and yet you would throw essential health benefits to the wind, leave 23 million more Americans uninsured, raise premiums for the elderly by as much as 800 percent, and cut $834 billion in Medicaid benefits for low-income Americans in order to give tax cuts to the wealthy. You did this without even caring enough to wait for the CBO’s assessment of the ramifications of the bill you have voted for.

You claim to be pro-life, and yet you have thrown the living to the wolves.

If you voted in favor of the AHCA, you are not pro-life.

Now that the CBO score has been released, the AHCA can pass on to the Senate. If you believe that people’s right to life should not depend on their wealth, call your senators and demand they vote no on the AHCA.

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‘No parent should ever have to decide if they can afford to save their child’s life.”

Jimmy Kimmel recently opened up about his newborn son’s unexpected open heart surgery, in an emotional, heartfelt monologue that touches upon the rawness and vulnerability of suddenly finding yourself in that terrifying situation as a parent. As I watched him struggle to give voice to their story so soon after it had happened, I was plunged back into the raw emotion of our own first week with L; and his takeaways resonate deeply:

“We were brought up to believe that we live in the greatest country in the world, but until a few years ago millions and millions of us had no access to health insurance at all…if you were born with congenital heart disease like my son was, there was a good chance you’d never be able to get health insurance because you had a pre-existing condition. You were born with a pre-existing condition and if your parents didn’t have medical insurance you might not live long enough to even get denied because of a pre-existing condition. If your baby is going to die and it doesn’t have to, it shouldn’t matter how much money you make.

“Whatever your party, whatever you believe, whoever you support, we need to make sure that the people who are supposed to represent us, people who are meeting about this right now in Washington, understand that very clearly.

“Let’s stop with the nonsense. This isn’t football. There are no teams. We are the team. It’s the United States. Don’t let their partisan squabbles divide us on something every decent person wants. We need to take care of each other.

I’ve said it before, but it bears repeating: the current health care debate is everyone’s debate. If you think you are safe, consider what’s at stake. If you think it doesn’t apply to you, take a minute to understand the fundamental insurance principle of herd coverage. If you think a child’s right to life shouldn’t depend on her parent’s wealth, this debate is your debate.

IMG_6138Every single day, all across the nation, families face devastating news and difficult choices. And nearly all of these families face those choices with a tiny fraction of the resources available to the Kimmel family. Implementing a new and improved health care system is far from simple, and pleasing everyone is damn near impossible – but it’s not hard to determine right from wrong when it comes to such a fundamental issue. As Jimmy so simply and poignantly stated, “No parent should ever have to decide if they can afford to save their child’s life.

The GOP’s first health care bill failed, but this battle is far from over. Keep making your voices heard.

Watch the full monologue here.

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Dear Jason Chaffetz: My iPhone isn’t going anywhere.

Dear Mr. Chaffetz,

Yesterday, while the nation was talking about the proposed replacement for the ACA and I was busy writing about the importance of “herd coverage” in health insurance, you thought it timely to tell low-income Americans that they’d be able to afford healthcare if they would only give up their beloved iPhones.

Now, the complete tone-deafness of that remark was quickly and thoroughly denounced by the DNC Chairman and the interwebs alike, Forbes has outlined exactly how many iPhones it would take to cover the cost of healthcare, and you’ve already eaten your words. So it seems less than necessary for me to point out that my family’s health insurance premiums cost 3.5 times the cost of our phone bill each month, or that we pay approximately another ten brand new iPhone 7s toward our maximum out-of-pocket costs every single year; that my son cost nearly 5,000 brand new iPhones before he ever came home from the hospital; or that I actually received my iPhone more or less for free when we enrolled in our service plan, which also happened to come with a couple hundred dollars in Costco gift cards that we used to buy grocery staples, since we were stretched kind of thin by our medical bills at the time.

No, I think it’s more useful to consider exactly why my iPhone actually is a necessity. Here are some of the many ways it’s essential to the health and well being of my family:

  • It’s my primary, and in some cases sole, means of communication with a small army of healthcare professionals.

In the year after my son came home from the hospital, we did not have a coordinated care team; I was responsible for communicating with a pediatrician, a medical specialist, a surgeon, a dietician, a physical therapist, a drugstore pharmacy, a home infusion pharmacy, medical supply delivery drivers, home health nurses, endless insurance reps, medical billing services and a NICU follow-up team, none of whom communicated with each other. I spent a lot of time on my phone that year.

Now that we’ve switched to a more integrated team, I still depend on my phone for regular check-ins to manage my son’s care, to make and manage an endless string of appointments, to receive results from frequent bloodwork, to access help negotiating difficulties or unusual symptoms, to dispute improperly-processed claims, to pay bills, and to notify his team if it turns out we’re heading to the ER yet again. In fact, I don’t even have to identify myself when I call his specialist’s office, because I speak so frequently with the administrator who answers their phones that she recognizes my voice.

  • It’s an immediate and ever-present font of information.

When we brought my son to the ER presenting with alarming neurological symptoms that are apparently common among kids with his rare disease, none of the staff in the entire emergency department were familiar with what was happening to him. You know who was? The parents in my diagnosis-specific Facebook group, and Dr. Google.

  • Some of my best friends live in my phone.

When my son was in the NICU, I essentially lived at the hospital for 4.5 months; my phone became my lifeline to the outside world, and my primary means of keeping friends and family updated.

During that time, I also solidified enduring online friendships with some amazing women who became an around-the-clock refuge during some of the lowest points in my life; when I was struggling mentally and emotionally, when I felt like I was drowning, when even a trip to a therapist had failed miserably – the friends in my phone kept me sane and gave me the strength to persevere.

  • It’s the best way to keep a squirmy toddler still during uncomfortable procedures.

Side-eye all you want — if you had to try performing a sterile dressing change in your living room on a small child who hates medical tape and doesn’t like to be held down, you’d be rushing off to download the YouTube Kids app too. Ryan’s Toy Review has saved us from contamination on more than one occasion (and how many iPhones do you think it costs to treat sepsis?).

All things considered, I’d say the $57.49 per month I pay for my phone service seems like a pretty damn good investment. Tell me, Mr. Chaffetz, when will you be making the choice between your taxpayer subsidized healthcare coverage and your taxpayer-funded iPhone?

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America, Let’s Talk: Mandated Healthcare Coverage and the AHCA

House Republican have just unveiled the long-awaited “replace” part of their promise to repeal and replace the Affordable Care Act. And, huzzah! – they’ve retained some modicum of sense and decided to keep some popular and very necessary components like guaranteed coverage for people with pre-existing conditions. But there are also a lot of less favorable components to unpack and discuss, so let’s start by focusing on one basic component of the ACA that’s been a point of tension for many of those opposed to it: mandated healthcare coverage.

Nobody wants to pay a penalty for not having health insurance. I get that. It’s not exactly unprecedented – I mean, in most states, if you’re caught driving without auto insurance, you can face penalties of several hundred dollars and some jail time, and may be ineligible to make injury claims against a driver who causes a damaging accident, even if the other driver is 100% at fault (so if you’re driving uninsured, let’s hope you have health insurance!). But if you felt you could afford to pay for health insurance, you probably would; and paying a penalty for not having that insurance seems to hit you when you’re already down.

The disconnect between the motivations behind mandated coverage and the mindset that paying penalties is unfair lies in the scope: mandated coverage is intended for the good of the group, and objections to it operate at the level of the individual.  

Since I’m already diving into controversy here, we might analogize it to vaccines: some may view mandated vaccination as an infringement on individual rights, but the effectiveness of vaccines depends on herd immunity. There are any number of individual liberties that end where they begin to pose a threat to the life and liberties of others (the choice to drive while intoxicated, for example), and the choice to leave your children unvaccinated poses life-threatening danger to those too young or ill to be able to receive vaccines. If a single person chooses not to vaccinate, they have decent odds of being covered by the immunity of the herd; odds are pretty high, in fact, that that person will not get sick. That’s how newborns, people with compromised immune systems and others who are ineligible for routine vaccinations remain relatively safe from vaccine-preventable illnesses. However, if lots of people choose not to vaccinate, we begin to see the resurgence of preventable diseases that had become almost nonexistent in the United States. If lots of people choose not to vaccinate, herd immunity weakens; those who need it most are no longer safe; people die.

Similarly, functional health insurance depends on herd coverage. Many of us pay for healthcare coverage; many of us don’t use it beyond a well visit here and there, and maybe treatment for the occasional respiratory bug that won’t go away on its own. And, others of us could never pay enough in premiums to make up for the exorbitant amounts our insurance companies have paid out for our very expensive healthcare. If a single young, healthy person opts out of healthcare coverage, they have fairly decent odds of not having a medical catastrophe or suddenly developing a chronic illness, relatively low odds of either drowning in medical debt or dying from lack of treatment, and the group is not hurt much by the absence of that one member. But if more and more healthy people choose to opt out, well — you have to have a lot of healthy people paying for insurance in order for the insurer to be able to afford to pay the healthcare costs of those who actually need to use the insurance.

This is not Obamacare theory; this is not socialism; this is Insurance 101. If lots of people choose to opt out of healthcare coverage, you begin to approach a point where there’s not a big enough pool of healthy people paying for coverage to cover the expenses the insurer is paying out for those who need more extensive care. Herd coverage weakens; insurers begin to cover less, and pay less for the things they are covering; those who need it most are no longer able to access the care they need; people die.

The Republicans’ proposed plan would remove the mandate on coverage. This may seem like a good thing – freedom of choice! But their plan also:

  • Revises the financial assistance available to help pay for healthcare coverage. The proposed tax credits will be lower, in many cases, than the current subsidies made available by the ACA. Fewer people will be able to afford coverage.
  • Proposes to put caps on Medicaid expansion, to an extent that even some GOP senators are saying will be damaging to those currently covered by state Medicaid policies. Fewer people will have access to the coverage and care they need.
  • Allows insurance companies to charge people a 30% penalty upon purchasing a new plan, if they have let their insurance lapse – effectively continuing a penalty against the uninsured, but one that the uninsured can only avoid if they remain uninsured.

Early analyses have concluded that the proposed bill would lead to millions of people losing coverage. And without herd coverage, healthcare suffers, and people die.

I recognize that the importance of mandated coverage can be a hard pill to swallow if you’re scraping by financially, are already unable to afford health insurance, and now you suddenly have to pay a penalty on top of not being able to afford health insurance. I can sympathize. But the alternative could quite literally be the death of you.

You can find more information on the proposed AHCA here and here – and mandated coverage is just the tip of the iceberg, so look for more from me to come.  

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America, we need to talk.

This is not a political blog. I have no intention of making this a platform for a partisan agenda. This is a place to share and reflect on our health journey, and I want it to remain a safe place for people and families who are struggling, regardless of your politics.

But there are some things we need to talk about.

There are some very, very scary things brewing in the world of healthcare legislation. And unless you are independently and exorbitantly wealthy, they will affect YOU, no matter what kind of insurance you have.

I don’t pretend to have a perfect answer, and I’m not here to argue the finer points of any politician or party’s proposed (or as-yet-still-not-proposed) plans. What I can do is talk about our experience navigating the current healthcare system, and how some of the current protections and impending changes affect and/or could potentially affect my family – real people who, if you’re reading this, you may very well actually know, and whom you might even like a little bit.

Let’s start with a couple of basics:

  • We currently have protection against lifetime limits on benefits.

In 2009, the year before the ACA banned lifetime dollar limits on healthcare coverage, around 59% of American workers had insurance plans with lifetime maximum benefits, many with limits of $2 million or less. That may sound like a lot of money, but 131 days in the NICU is really, really, insanely expensive. My son’s bills had surpassed $3 million before he ever came home from the hospital.

Since then, he’s had 8 additional surgeries, daily intravenous nutrition for most of three years, daily home nursing visits (at least as billed – but that’s a long, ranty story for another day), and so many readmissions I’ve lost count. That’s not a cliché; I’ve actually lost count. Last month we got a bill for $55K for part of his last big surgery. That one had been improperly processed as a denial and was quickly taken care of, but if our (employer-based, not ACA) insurance were allowed to deny us coverage after we hit a specified lifetime limit, we would currently be in financial ruin and unable to afford L’s care, let alone anything that might arise in the future.

  • We currently have protection against being denied coverage due to pre-existing conditions.

img_6138L is a walking pre-existing condition. His condition existed before he ever even emerged into this world. Insurance companies used to be allowed to deny people like L coverage simply because he got the shit end of the randomly-occurring congenital lottery (through no fault of mine and certainly through no fault of his own); if that were still the case, my husband would be unable to change jobs, we would be royally screwed if he got laid off or if his employer decided to change insurers, and once L is old enough to age out of our insurance coverage, he would be financially ruined before he was even given a chance to try his hand at this whole adulting thing – especially if he is no longer allowed to stay on our insurance until age 26, which is another ACA protection that’s currently in jeopardy.

  • This could happen to you.

This could very well be a letter to myself a few years ago. Before L, I had very little real understanding of what lifetime limits or denial of coverage based on pre-existing conditions could actually mean in practice. For anyone reading this who may be unfamiliar with our story, I was a healthy, active, 28-year-old expectant mother doing all the right things and experiencing a textbook pregnancy – until my son arrived very suddenly at 34 weeks with an undetected, randomly-occurring congenital defect that ultimately cost him most of his small intestine. He spent more than four months in the NICU before coming home, and while he is currently a happy, smart, well-adjusted preschooler with a bright future, he has needed significant medical and nutritional support his entire life, including a feeding tube and a central line, to ensure that future remains possible for him.

If you think you’re safe because your insurance is employer-based, pay attention to these two regulations. They offer protection against crushing blows to real people. None of the statements I’ve just made is a revelation, or at least they shouldn’t be, but it’s very possible you may not have considered the real-life consequences of these things for people you actually know. For people you love. For you.