Monday, March 13, 2017

I've lived the Republicans' plan for the ACA, and I can't support it

My 12-month-old son recovering
from a surgery we almost didn't have
because we couldn't afford it.
Hobo Mama wants you to know she's a professional blogger! Look at how professional she's being!

I try not to be too political on this blog. You probably don't believe me given some of my recent posts, but it's true. If you're politicked out and want to skip this one, feel free. I just want to give some public insight into how maternal and child healthcare work — or don't — on a high deductible plan with an HSA, and since that's been my lived experience, I feel an obligation to share.

There are many Republican plans floating around right now suggesting a replacement to the Affordable Care Act (aka Obamacare), which currently covers 20 million people in the United States. Several replacement ideas, including the latest GOP plan, have touted health savings accounts as the best option for those who need private insurance. I'm here to tell you how that works out in practice, and how it might nearly have cost me my fertility and my life and how it could have prevented my baby from having a needed operation.

Scenario 1: The five-month miscarriage

When my husband, Sam, and I were first trying to conceive, we got pregnant right away, but not all was rosy. I started spotting at 6 weeks and then full-on bleeding with cramps at 10 weeks: a miscarriage. I put off going to my gynecologist, whom I hadn't seen in a long time due to budget constraints. I figured what needed to come out had come out and that there was nothing more to be done. I had a hankering to keep this baby's "birth" natural in any case, but this was aided by the fact that if I went in to a gynecologist, it wouldn't be covered as a preventive visit. It would be an urgent-care visit, which meant I'd be on the hook for the full amount, including any tests and procedures. I'd had problems with this before, even when going in for preventive visits, which were supposed to be covered with just a copay. The doctor, without asking me, would tack on some extra lab work, and the next thing I knew, I'd be getting a lab bill I hadn't budgeted for.

So I stayed home, and I kept bleeding. And bleeding. And bleeding. For five months, I continued charting my temperatures to see when I'd ovulate, and I'd note which days I had spotting. It was nearly all the days in that five-month span, interspersed with what seemed like menstrual periods as well. I fretted. I searched message boards. Surely this was not normal? I called the midwives I'd been hoping to see for my pregnancy. They told me to call my gynecologist. I called Planned Parenthood, hoping for a cheaper option. They told me to call my gynecologist. I finally did, and my gynecologist's office scheduled me for three weeks out. I called back to see if they could see me sooner, and they scheduled an urgent-care visit for that week, but I was so wracked with anxiety about going to an appointment I couldn't afford that I ended up being too late for it, and it was canceled on me. Not too long after, I woke up tortured by the most painful cramps I'd ever experienced. I cried and labored in the shower, took some ibuprofen, then fell back asleep. When I woke up, a chestnut-size piece of tissue lay in my underpants. After passing that tissue, the bleeding stopped from that day forward.

By the time I went in for my scheduled preventative visit, I was newly pregnant again with what would turn out to be my firstborn son, Mikko. To add insult to injury, the gynecologist at that visit tested me for syphilis unaware, even though I'd already been tested for it before and even though I knew I couldn't have syphilis, so shortly after, I received a $90 bill in the mail for my unwanted, unneeded, undisclosed lab work.

Everything worked out in the end, but: Five months of straight bleeding? Not normal. And not healthy that the choice I had to make was based in finances. Do I see someone, when I know I'm then going to have to pay for a D&C or similar procedure as well as the office visit and any extra tests, or do I sit this one out at home? I honestly don't recommend others in my position make the same choice I did, because I was playing fast and loose with uterine infection, infertility, and possible death.

Scenario 2: A charitable surgery

When Mikko was a baby, the doctors discovered a small birth defect that needed surgical correcting, and sooner rather than later. Both the pediatrician in the hospital where he was born, and then our regular pediatrician, recommended that he have this outpatient surgery as soon as possible. We went in for a surgical consult at the hospital, and the surgeon there said the same thing. The only problem was, we had no idea how to pay for it, or indeed, what it would cost.

I knew it would be an all out-of-pocket expense unless we could hit our deductible. If we could get it done in the same year as he was born, then our hospital bills for his birth (which we'd had to pay in full ourselves, along with our midwives' bill) would have already boosted us toward hitting that high deductible mark. But the hospital couldn't schedule us in for surgery until after the holidays, which meant sometime in the next year. We would be starting from zero again with our deductible.

I called the hospital to ask how much the surgery would cost, so at least we could try to save up the money we needed. No one would give me even a ballpark as to how much it would cost. It was beyond frustrating. No one would say even if it would be closer to $2,000 or $20,000 — no guidance at all.

I tried applying for Medicaid and similar low-income health assistance for children, but this was before the ACA brought in Medicaid expansion and new rules for eligibility. The sticking point against us was that we had a little money in our retirement accounts. Keep in mind that we're self-employed, so that money is all we'll have as a pension in our retirement. Some of it was gifted from family, and I realize that in itself puts us in a position of relative financial privilege, but we didn't want to gut our retirement savings to pay for a surgery, leaving us destitute in the future. These rules have rightly been revised since then, but in the meantime, I was given the bum's rush.

I called the hospital again, desperate to find out how much we would need to beg, borrow, or steal to afford this surgery for our child. A kinder-voiced woman suggested I call a specific person at the hospital; let's call her Victoria. I assumed Victoria must finally be the person who knew the price of the surgery. It turns out Victoria worked for the financial aid department. She asked me a few questions about our household and income and then told me, "Ok, your surgery will be covered." Excuse me? "Whatever insurance doesn't pay, the hospital will cover." (Whoa!)

While I will forever be grateful to Seattle Children's Hospital for affording my son his needed care, it's not a viable option for everyone to rely on private charity reserves. It would be far better if a surgery never wiped out a family's savings — or flat-out bankrupted them — in the first place.

What an HSA is and isn't

For those who have not yet experienced HSAs, let me do a quick explanation. Please note: This is a layperson explanation; I am NOT a tax expert or health insurance expert. Sam and I have been self-employed for a decade or so now, so we've experienced employer-based health insurance and then buying our own private health insurance both before and after the transition to the ACA. To control premium costs, we've gravitated toward a high deductible health plan with HSA eligibility whenever possible, so this is our personal experience.

A health savings account (HSA) lets you sock away money toward medical expenses. You declare your contributions on your tax return and receive a deduction by adjusting your income down, which means your contributions are made with "pre-tax" dollars. Interest you earn is also not taxed, and distributions for qualified medical expenses are not taxed. That's the good part.

Now for the less-good: Only certain health-insurance plans are eligible for HSAs. The main criterion is that they must be high deductible, within guidelines set by the U.S. government. Some high-deductible plans are not HSA eligible, so if you're searching for a plan (such as on the government exchanges or through eHealthInsurance or similar), check to be sure. There's usually a search filter that will let you see only HSA plans.

How high is the deductible? For 2017, the minimum deductible for an individual is $1,300 and $2,600 for family coverage. Deductibles can be higher, and ours always were in the $6,000 range, but the maximum out-of-pocket expenses (including deductibles and copayments) are $6,500 for an individual or $13,100 for a family. Your contribution limits to an HSA for 2017 are $3,400 for an individual and $6,750 for a family, though the Trumpcare plan would like to increase that. Regardless, I'd love to think that all families have an extra $13,100 floating around to pay down medical expenses, but I know that's not the case. And that doesn't even include the payments for premiums in the first place, which are already thousands of dollars a year unsubsidized.

Another problem with HSA deductions is that they help higher-income taxpayers more than low-income ones. Reducing the income you pay taxes on helps if you have a lot of income and has a negligible effect, or possibly no effect, if you have very little.

I've also heard the criticism of HSAs that lower-income families don't have extra money to plop into a savings account, and we have been one of those families. What we did was government-sanctioned money laundering (that's what I liked to call it, because I'm hilarious like that) where, whenever a medical expense came up that I had to pay, I'd transfer that precise amount into my HSA and then immediately reimburse myself for the same amount. I almost never have leftover money to just let sit in my HSA all year, and I have never maxed it out. My savings priorities, while self-employed, have been to contribute to our emergency savings and then to our IRAs (retirement savings) and only then would I devote excess money to our HSA. Welp, we've never had such money. So I can concur that many families will be in the same boat — they can still use our neat little double-transfer trick, but we're not looking here at stockpiling oodles of cash for a rainy day.

Here's another wrench in the works, even though it seems like a small one. Opening an HSA is complicated. There aren't a lot of banks that offer them, and it's not a straightforward process. You don't automatically get the HSA just from choosing the health insurance plan. You have to research which institutions offer HSAs and what fees they associate with them. Then, even when you choose a bank, they can stop offering HSA coverage and force you to go elsewhere. We've been with three HSA providers over the past decade, and the first one we went with went down in flames. The owners embezzled the funds and were prosecuted. (Yep, really.) Our money was held up for years as the government sorted through the financial wreckage. One day, we received a check in the mail for the full (small) amount we'd had invested, which surprised the heck out of me since I just figured it was gone. I felt worse for the people who'd had $20,000 or more in limbo all that time or were on a fixed retirement income and needed that money right away. The second HSA provider we went to was a more established bank, but they started nickel-and-diming us with no warning ($5 maintenance fees every month), and we had to leave before they bled our meager account dry in a legal fashion. We're currently at Alliant Credit Union, if you're curious about a good option (so far, knock on wood, and all that). Opening the HSA is one complication; then there are all the complications of actually using it (checks vs. transfers vs. debit cards), the record keeping, and the tax reporting. For families who face language, cultural, or educational barriers to figuring out their health insurance options, HSAs might be a bridge too far.

So how does having an HSA plan harm your access to healthcare?

I've alluded to it in the stories above, but having a high-deductible health plan with an HSA means that you the individual make the decisions about whether to pursue healthcare based on how affordable it is for you. If your household is a wealthy one, having such a plan will likely save you money, because your premiums will be lower, and you can afford to pay out the deductible and out-of-pocket expenses if the worst occurs. But when you're lower- to mid-income, you find yourself weighing each medical crisis with the question: Is it worth going in for this? I can tell you right now that that question can lead to very bad decisions.

We're not talking here about whether you would let an ambulance pick you up if you'd been run over by a truck and were catastrophically injured. In life-or-death situations that you know are life-or-death, of course you'd choose intervention, even if it meant an expensive ambulance and emergency room fee and paying the best surgeon on call. The sticking point is all those lower urgency situations where you, as a non-medically trained layperson, have no idea whether you should seek medical care or not. You know if you decide to, you're on the hook for the price. You also know that if you decide not to, you're potentially on the hook for the aggravated illness, injury complication, or even death of yourself or a loved one.

Here's where I point out that no other industrialized country makes its citizens face such a terrible choice.

If I think I'm having a heart attack but am not sure if it's a panic attack or a stomach bug, do I go in — or not? Do I go to the emergency room in the middle of the night? Do I call an ambulance if I have no one to drive me? Or do I wait till the next morning to go to an urgent-care clinic? Do I wait still longer until my doctor can squeeze me in for an appointment later that week? These are very real questions that people on an HSA-type plan must ask themselves, because paying for an ambulance, emergency room visit, and EKG are not chump change. They certainly can cost more than an iPhone, whatever certain politicians will tell you.

What if your child falls off the swing set and starts complaining about pain in her arm? When you're on a high-deductible plan, the numbers immediately start running through your mind as you ask her to wiggle her fingers and look for swelling. If you take her in, that's an emergency room visit and an X-ray for starters. Maybe it's just bruised, and you could wait till tomorrow to see. Then again, maybe it's broken, and literally sleeping on it will make it ten times worse.

Even in smaller things, you have to make tough choices. We had to debate whether to take our then-two-year-old in for a suspected UTI. He was crying and passing small amounts of blood in his urine. We felt the responsible thing as parents was to go ahead and make an appointment. Fortunately, a pediatrician in our practice was able to see him the next day. The results were inconclusive, though, and the symptoms passed quickly, which made us feel like we'd made a stupid decision to bring him in after all. I don't like basing all my medical decisions for myself and my family on how much we'll be paying for the care: Doctor's urgent-care visit + lab fee vs. cranberry juice + a toddler's prolonged suffering.

Every time anyone in our family has a medical problem, we hem and haw and weigh how much it would cost us to go in to see someone about it. We've been fortunate in having a relatively healthy family so far, and even so there have been times I wished we could go to the doctor but have held off because of the cost. Once I had a sore throat for over a month before I finally caved and went to a clinic; then I kicked myself for it, because they prescribed me an antibiotic that was $40 more expensive than I was expecting. I wished I had just stuck it out and waited longer for the sore throat to go away, although who knows what complications might have arisen if I had?

I'll admit that I tend toward skepticism of medical intervention in most cases regardless. But having an HSA, a high deductible, and high out-of-pocket limits has made me downright avoidant. We don't stick to the suggested schedules even for preventive care, since those visits often tack on expensive extra lab work (see above). If we can no longer afford health insurance premiums, then there will go all our preventive care. Consider the effect of 20 million people skipping out on pap smears, mammograms, vaccinations, colonoscopies, and the like. Is this really the best way to ensure a healthy population? Is this the best way to keep medical costs down and health insurance rates reasonable for everyone, including those who purchase through employers?

Consider the cost for chronic conditions as well. I used to take prescription birth control. When I transferred to an HSA plan, I crunched the numbers and realized condoms were way cheaper, considering both the prescription costs plus the office visits necessary to get pill refills. I used to visit a dermatologist for my acne. I now use over-the-counter benzoyl peroxide and stay home. While it's lovely for me that I was able to come up with workable alternatives to prescription meds and office visits, many, many people have needs that can't be met from a home medicine cabinet and wishful thinking. I have family members and friends with incurable and devastating chronic illnesses as well as mental illnesses that require professional care. Our family has indeed been fortunate to avoid such hardships so far, but as Sam and I get older, the risks of having a chronic condition go up. I'd hate to think that anyone has to choose between basic necessities like food and housing (not smartphones) over medical care for chronic conditions.

What about those womenfolk?

Speaking of birth control, the sexism of health insurance pre-ACA hit us particularly hard. Not covering medications or conditions experienced by people with uteruses, or jacking up the prices for them, is unconscionable. Many people are prescribed birth control for medical reasons (though I think it's also acceptable if the intent is straight-up birth control). There are those who would rather see birth control dropped but erectile dysfunction medications remain covered. I don't understand the hypocrisy (except, you know: misogyny).

Maternity coverage was not guaranteed in any of my pregnancies, which meant my premiums skyrocketed for each year I tried to conceive, was pregnant, and had a newborn. In my last pregnancy, I once again had to transfer to the most expensive plan, making my own premiums higher than those for my husband and two other kids combined. And I had to time my transfer to the plan with maternity coverage to start before pregnancy, which means that anyone who struggles to conceive will be paying extreme premiums for potentially years on end. I also opted for less expensive midwife care and home births and far fewer tests than recommended (for instance, no ultrasound until my last pregnancy) partly because of the cost, and I feared what a hospital transfer or unplanned C-section would mean for our finances. For those who suggest that maternity care shouldn't regularly be covered since only a portion of the population uses it, I retort that, last I checked, everyone was born at one time, which means everyone('s mother) needed maternity and newborn care. It's not a privilege to give the most vulnerable members of our society a healthy start; it's a human right. I'm pleased that the latest GOP replacement plan retains maternity coverage at the moment, but I fear that negotiations with more hardline conservatives will drive it off the table. Meanwhile, other affordable options for low-income parents are being depleted, such as Planned Parenthood funding and Medicaid expansions.

Get a job, you hippies

Once, when I was complaining to my conservative mother about the sexism of the health insurance industry, she listened seemingly patiently to my entire rant. When I finished, she said, "Sounds like it's time for Sam to get a real job."

I get this sense that people think the 20 million people covered under the ACA are all freeloaders. The bulk of us are anything but. Self-employment is a "real job." Sam and I work hard in our home business, and while we're not wealthy, we usually do all right, thank you very much. When I was stressing about whether I had gotten insurance soon enough to have my third pregnancy covered, I did in fact look into what jobs I could possibly get as a pregnant woman in my (then) late thirties. I found out, for instance, that UPS and Barnes & Noble had generous benefits packages for part-time employees. Then again, I wasn't sure this oldish pregnant lady was up to hauling packages with my bad back or standing with my messed-up hips all day. If I'd gotten a job, it would have needed to cover childcare as well, and that's not an easy ask.

I don't really know how to argue against people who think self-employed folk are all ne'er-do-wells except to cry out that it's not true. America is the perfect place, or so I'd think, for us independent, innovative types who want to branch out on our own and take risks to do something better for our families and for society. There's nothing wrong with having a stable job you love, but I'd hate for fear of insurance coverage to turn every maverick into an embittered cog in the corporate machine.

As you can probably tell, too, I'm frugal. I consider my finances, both current and future. Sorry-not-sorry to harp on it, but I've never owned an iPhone. We self-employed families are not sitting around doing nothing, hoping the government takes care of us. We're trying to take care of ourselves, but we don't need roadblocks in our way. I won't even go into all the challenges other families might face — single parents, people with disabilities or chronic illnesses, people raising foster children, those who are unexpectedly laid-off. There are so many real individuals in this healthcare debate, and no matter what the backstory, all these people deserve affordable access to care.

The medical industry is brutal. Healthcare costs are out of control, and unattainable without the insurance companies negotiating them down. That means you need insurance to afford medical care, but then you need to be able to afford insurance, too. I've been willing to pay my way; at this point, I just don't want to be priced out of the individual market or have all the insurance companies go running for the hills.

We need to do better

So that's my story of how our family has fared under high-deductible health plans with an HSA. Having to budget so tightly for our own healthcare has meant less care for more money. The ACA brought in some reasonable controls for us in covering maternity and newborn care (including breastfeeding support), doing away with lifetime coverage limits, ensuring preventive care, covering preexisting conditions, subsidizing premiums through tax credits, and expanding Medicaid.

It saddens me that the GOP plans seek to undo some or all of the good of the ACA instead of pushing forward to ensure that all families are covered, no matter their income or health history. Families shouldn't have to weigh costs when deciding whether or not to pursue healthcare.



Olivia said...

Thank you for writing about this. I have been in situations, in fact most of my life, in which we had to decide whether we could afford a doctor's bill or not. Once it was my husband experiencing back and possible chest pain. We decided not to call the ambulance and to wait to call the doctor in the morning. Scariest night of my life.

Lauren Wayne said...

@Olivia: That's such a hard choice to have to make.

Unknown said...

I am EMT. Sadly Olivia's situation isn't uncommon. I have seen parents drive their child to the ER barely breathing, chest pain ignored, blood pressures so high it makes eyes bloodshot. An older lady had so much fluid leaking in the sac around her lungs my friend couldn't hear breath sounds refuse to go to the hospital because money. I have had carefully explain that in this county if you are transported by ambulance you can not pay the bill, and the county will pay for it. If you pay even a small portion the company will persue payment through to collections. In most counties, you can call 911 and be evaluated, including EKG for cardiac situations and refuse transport and its free! Some counties charge fees for 911 calls, fire even not just medical.

That being said, I nearly had an unassisted birth with my first. I tried every option to find health insurance but "preexisting condition". My husband was freaked, I was 7 months pregnant and had had 1 prenatal visit. He ended up a typing "midwife" into Facebook and found an out of state midwife who agreed to attend.

My husband dropped our son in the street off his shoulders when he was a year old. He cried for a long time and was bruised, but didn't have any markers that he was very hurt.

My daughter didn't get stitches, and I splinted her toe when she broke it.

I transferred after my second's birth for hemorrhage. That was expensive but worth my life

Mrs.WJAA said...

I've never had an HSA, but have had either a high deductible plan or Medicaid most of my life... I rarely ever go to the doctor when I'm on a high deductible plan and go only slightly more often when I can afford it... I can honestly say that I haven't been to a doctor for myself since my 6 week postpartum appointment. My daughter will be 4 in early May. I just got a subsidized plan through the ACA this year that isn't high deductible, but because of the political climate, I'm still afraid to go... I'm 33 and with a family history of several bad things that I'd love to be screened for, but old habits die hard.

Lauren Wayne said...

@Rachel Hoffman: Those stories are all dismaying. I'm glad you were able to find a midwife to help you. I worried that unassisted birth would be my only option if the insurance company wouldn't agree to cover my third birth. You've had such tough choices, and it's sad you've had to make them.

That's interesting about the ambulance billing and 911 calls. I've been thinking about the collections aspect when people suggest that payment plans are an option for people who can't pay a full medical bill outright — it still implies they have the money to pay in installments.

Thanks for sharing your stories.

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