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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Giving Voice to the Absences

img_6268Each non-Leap Year, Rare Disease Day is observed on February 28. I say it’s observed on February 28 rather than it is on February 28, because RDD is actually February 29. Like Leap Year babies, RDD chooses February 28 as its backup day of observance in all years that cannot be evenly divided by 4 (and also in years that can be divided by both 4 and 100, but not also 400 – have you ever read the actual rules for Leap Day?!).

It’s fitting that February 29 should serve as Rare Disease Day; it is, after all, a rare day. Perhaps even more fitting is its absence, its silence, in three out of every four years. Most years, for most people, February 28 slides on into March 1 as though February 29 were never even a thing. Unless you are one of the rare people born on Leap Day (at around 4 million worldwide, they are a group only 1% the size of the rare disease population), you probably don’t give a second thought to that non-second of time at midnight in which February 29 doesn’t really exist.

Rare diseases often exist in silence, too. They live in the absences: the friend who stops coming to gatherings because the exhaustion from a late night might incapacitate her for days; the coworker who stops coming to the office because the pain is too much; the mother who doesn’t explain why her child is still in the hospital because she doesn’t know where to begin.

Unless you have been directly affected by one of them, it’s likely you’ve never heard of most or all of the nearly 7,000 rare diseases recognized by NORD. I had certainly never heard of gastroschisis or short bowel syndrome until they were quite literally thrust into my lap four years ago. But if you know even a handful of people, odds are high you know someone who has been affected by rare disease. By definition, each rare disease affects fewer than 200,000 people in the United States at any one time, but collectively there are more than 30 million people living with rare disease in the U.S. – that’s about 1 in 10 – and an estimated 350 million people worldwide.

This year’s RDD theme is research, and research is certainly a fundamental necessity for the rare disease community. Fewer than 5% of rare diseases currently have a treatment, and lack of knowledge and quality information can result in devastating delays in diagnosis. Many people remain undiagnosed, sometimes for entire lifetimes. And the need for treatments and cures is pressing; rare diseases are responsible for 35% of deaths in the first year of life, and 30% of children with rare diseases will not live to see their fifth birthday.

Last year’s theme, however, will always resonate most deeply with me: Patient Voice. On a true Leap Day in 2016, RDD made those 350 million voices heard. Research is brought about by advocacy and awareness, and advocacy and awareness begins with voices. The patient voice is the best advocate in a world where even most doctors don’t understand rare diseases, and it is the best avenue for placing faces next to scary, unpronounceable words. It’s voices that fill the absence; voices that inspire more voices; voices that make sure someday, somewhere, a mother will never feel as completely and utterly lost and alone as I felt in 2013.

To hear more voices or to learn more about rare disease, visit rarediseaseday.org or Rare Disease on The Mighty.

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