Oh, Poodle's swell. She just turned 4. She says things like, "Mama, sometimes...when I think of you...I think of rainbows" and "Could be a girl driving that truck. Could be a boy. Who knows." The two most important fake people in her life are Rapunzel and Wonder Woman. She loves Woofy, but does not like her. She is brave. She's the best.

She is now wearing a prosthetic left eye. It doesn't always stay put. We meet with the occuloplastic surgeon in August to discuss if there's anything to be done about that, possibly surgery. Also on the surgical docket: releasing the banding around her right ankle, caused by the same amniotic bands that clefted her face. Her physical therapist is keeping an eye on it, but it does now appear that the banding is affecting her flexibility and balance. It will require two separate surgeries. We'll figure that business out in November when we meet with her craniofacial plastic surgeon.

For right now, I am focused on another looming threat to Poodle's health and quality of life. The American Health Care Act (AHCA) is a bill rejiggering the Affordable Care Act, also known as Obamacare. There are many, many issues with it. Please indulge me while I work out, in blog-form (truly, the American way), my thinking on the two most critical issues to our family: bans on annual and lifetime limits and meaningful coverage for pre-existing conditions.

The first issue is the precarious state of Obamacare's ban on annual and lifetime caps. This ban prohibits all insurers, including issuers of large group employer-provided plans like the one Poodle and I have, from establishing any lifetime limit on the dollar amount of essential health benefits for any individual. While large group plans are not required to cover essential health benefits, if they do provide those benefits (and most do), they are prohibited from capping them. Make sense?

I'd heard a lot of hullabaloo about essential health benefits, but until this weekend, hadn't examined them too closely. What I found astonished me. Our family relies or has relied on every single one.

Ambulatory patient services. CHECK. Regular exams by two surgeons, an ENT, ophthalmologist, speech therapist, audiologist, occularist, etc. Bazillions of examinations and pre-op and post-op care covered.
Emergency services. CHECK. One time Poodle ripped out the sutures holding her left eye closed, back when we didn't know the fundamental health of the eye and surrounding bone and tissue. We were terrified that exposing the eye would cause irreparable damage and we rushed to the ER, where they had to facetime with her surgeon because he was in Dallas. We also had to go to the ER one Saturday when we were all puking obscene amounts of nothing and also that one night I chopped off part of my finger with an immersion blender, all of which were covered.
Hospitalizations. (like surgery and overnight stays). Uh, mother freakin CHECK and, with minimal gripes, covered.
Pregnancy, maternity, and newborn care. CHECK. Where to even begin with this. The entire tragic sojurn to Houston was covered. The equally stressful but slightly more hopeful trip to Houston was also covered. Constant sonograms, induction, NICU, all covered. The only thing, other than co-pays, I even remember paying was for the fetal MRI, which was, I will never forget, $600. This represented our 20% contribution to the total and the most I had ever, up to that point, paid for a single healthcare service.
Mental health. I've alluded to it before, but I struggled with severe postpartum anxiety and depression and continue to see a therapist and take medicine, which are covered. This makes me a functional person and allows me to be a good mom. It's just a fact of our lives. I have bad hips, anxiety, and I love Playing House.
Prescription drugs. CHECK. See above, also all of Poodle's post-surgery meds covered.
Rehabilitative services and devices. CHECK. Poodle sees her physical therapist and speech therapist weekly and that's covered too. Her prosthesis might even fall under this category.
Laboratory services. CHECK. One time when I was in the midst of my postpartum nightmare, I had to take a 6ish-week old Poodle to the ENT and, two hours later across town, to the hospital for a CT scan. This was on a day where I had begged Dan not to go to work because I literally could not fathom how I was going to get through the next minute, let alone the rest of the day, without him, and so my wonderful mother-in-law was babysitting me (giving my parents and my sister a day off). The CT scan was covered. And I got better.
Preventive and wellness services. CHECK. Vaccines, various screenings, etc, all covered. Mom, baby, and community healthier.
Pediatric services. CHECK. Poodle is a kid and sees more pediatric specialists and subspecialists than I ever knew existed and that's covered.

So, because my healthcare plan covered all of these benefits, they could not limit the dollar amount they would pay to cover those benefits. I've had difficulty pinpointing a typical pre-Obamacare annual limit, but little Poodle-doodle has accumulated between $100,000 and $250,000 worth of medical expenses every year of her life. That apparently puts us in the top 1% of healthcare spending! I've read in multiple sources that a typical lifetime limit was between $1 million and $2 million. Folks, she just turned 4 and we're at about $740,000. We've been spared so many horrible things, we've never had to decide between a medical procedure and bankruptcy. But, we're close to hitting those traditional limits.

This keeps me up at night because the House version of AHCA would, in effect, allow those annual and lifetime caps to creep back into our lives. The Senate looks to be in favor of maintaining this horrifying particle of the House bill. But, but, but, they say they're keeping the ban on the caps. Which, true, but more importantly, meaningless. Currently, a state's slate of essential health benefits must meet Obamacare's coverage standards. The AHCA removes this mandate and would allow states to seek a waiver from those standards. Meaning, some states, like, say, Texas, could so weaken the meaning of "essential health benefit" as to render the term utterly hollow. As a result, the specific benefits that insurers of large group, employer coverage cannot cap could drastically decrease. Dan and I both make good, steady salaries. We thought we were shielded by our employer-provided coverage. We were naive. We cannot afford to pay $100,000 a year out of pocket. We cannot afford to cover a surgery all on our own. If a surgery no longer falls within the meaning of an essential health benefit, an insurer could institute a lifetime cap on related covered benefits. We're two to three years from hitting such a cap, putting her at about 6 or 7. She's scheduled for a couple of bone graft surgeries at around age 9. What will we do?

Additionally, we as a country have mostly settled on the understanding that people should not be denied health insurance on the basis of a current or former medical condition. Poodle has a congenital birth defect, the OG of preexisting conditions. Obamacare explicitly prohibits a health insurance issuer from denying a person coverage because of a preexisting condition, in both the group and individual markets. AHCA maintains this prohibition. Paul Ryan and others consider the matter closed. However, the confusing and maddening thing about Obamacare is that this prohibition, and all the other prohibitions and mandates, only work if about a million tiny Obamacare parts do their respective jobs. What does this mean for preexisting conditions? It means that the prohibition against preexisting condition exclusions is only effective if the coverage offered is actually affordable. Who cares if you have insurance plans available to you if you can't afford to pay the premiums or deductible, you know?

Which brings us to the community rating rule, the rule that gives the prohibition umph (technical term). The community rating rule prevents health insurers, in the individual and small group markets, from varying premiums within a geographic area based on health status, aka a pre-existing condition. The AHCA guts the protection by allowing states to opt out of the community rating rule. If you'd like more background on pre-existing conditions coverage and medical underwriting, THRILLING, go here. As mentioned, I have large group, employer-provider coverage, so this doesn't affect us at this very moment. But, it will definitely affect her when she has to purchase her own insurance or if something happens to me or this job. It affects many of her friends. Do you know someone with a pre-existing condition who individually purchases their insurance policy on an Obamacare exchange or has small group coverage? If the AHCA becomes law, that person won't technically be denied health insurance, but if they live in a state that opts out of the community rating rule, which, we totally do, the insurance companies can set those premium rates ever higher. A lot of us have trouble paying premiums now. What happens to a person who isn't prohibited from purchasing insurance but who cannot afford to do so?

I make myself ill attempting to parse what exactly the purpose of this AHCA exercise even is. It doesn't lower costs for those who need it. It doesn't expand or improve coverage. It doesn't make the system more rational or give everyone more freedom, whatever that means. It seems cruel on its face. Poodle is not covered by Medicaid, but the cuts to Medicaid are deeply disturbing. Nearly 3/4 of Medicaid recipients in Texas are CHILDREN. This bill hurts Poodle. It hurts other kids. It hurts poor people. It hurts people with pre-existing conditions. What's its actual mission? Tax cuts. I'd rather my daughter and people like her receive the healthcare they need.

If you've managed to stay with me this long, my deepest thanks and appreciation. I am also begging you to fight with us. This bill has already passed the House. A handful of senators are drafting the Senate version in closed-door meetings and reports indicate a plan to vote on it next Thursday. If you have a Democratic senator, call them and ask what they're doing to stop this bill. Encourage them to do whatever's necessary to stop it. If you live in a state with a Republican senator who is on the fence, for any reason, call them and encourage them to vote No. This would be folks in West Virginia (Capito), Maine (Collins), Texas (Cruz), Utah (Lee), Alaska (Murkowski), Kentucky (Paul), Nebraska (Sasse), Nevada (Heller), Louisiana (Cassidy), Ohio (Portman), Arizona (Flake). If you have any other Republican senator, call them and ask what the senator's position is on any of these issues and stress your opposition to the bill and the senate's handling of the bill, if applicable. I called Cornyn's office 15 times today before I got through. The polite young woman who answered the phone had zero answers for me, but she registered my concerns. I will call back tomorrow.

Thank you. Good night.