Day 36: Time
It’s been two weeks since my last regularly scheduled TMS session. On Monday, Dr. Levine’s office began the process of petitioning Aetna for maintenance sessions later this summer. We’ll find out in a few weeks if they are covered (i.e., if I can afford to do them). Fingers and neurons crossed.
In the meantime, I feel… okay? Yeah. Not bad. Good, even, or at least better than not bad. I’m still not sleeping well, but I am sleeping better. I haven’t had a panic attack in weeks. Once in a while the shadow of an intrusive thought falls across my path, but I step over it and continue on my way. Mornings, I get out of bed. I’m cooking again! I recommend this delicious version of three-cup chicken and this perfect frozen yogurt. I just finished reading this and this and have ordered this, which I decided I had to own in hardcover. I’m looking forward to a nostalgic wallow in memories of Lit, Northsix, Misshapes sightings and Sparks hangovers. Soon I’ll be ready to get back into fiction, and I can’t fucking wait. Things are funny again! Jokes, tweets, videos, the cat lying belly-up on the floor, stuff my kid says. The other day he was eating pizza, and I asked him if he’d had a nice time at daycare, and he put up his hand and said “Hold on a second, I’m eating pizza.” Ahhh!
What else? I’ve gotten a haircut, made a long-overdue dentist appointment, renewed my library card, organized my personal Google docs, opened some folders containing abandoned ideas, deep-cleaned two-thirds of the apartment, gathered outgrown toys and clothes to give away, revived my skincare routine, installed a new modem and left the apartment while wearing pants with a zipper, more than once. It’s dizzying to think about; a month ago, these simple, life-sustaining tasks seemed as impossible as climbing Everest with both hands tied behind my back.
One thing I haven’t done yet is re-integrate myself with my social circle. I haven’t spoken to most of my friends in a very long time, and there are dozens of unread emails and unanswered text messages on my phone. Depression and isolation feed on each other like vultures. The worse you feel, the more you avoid people, and the more you avoid people, the worse you feel. The longer this lasts, the harder it becomes to pick up the thread of whatever conversations you used to have, and the easier it seems to stop responding when people reach out. After a while, people stop reaching out.
Hey, people have busy lives. Everyone’s in different neighborhoods or boroughs or states, occupied with work and side hustles and pets and dates and families and politics and new Snapchat filters. How do you jump back into this big moving machine? Is there a Hallmark card that says something like, “Sorry I was MIA for the past year! It wasn’t personal, my brain went haywire. I’m here now, and I’m doing OK, for the most part. It’s a big relief. So, how can I resume interactions with you? Is it weird that I’m sending you this card? Sorry if it’s weird. I’m still re-learning the ropes.”
In 1999, Surgeon General Dr. David Satcher did something no surgeon general had ever done: He released a comprehensive report on mental health. Eighteen years later, it reads like a relic from a much more distant past. Back then, 42.6 million Americans were uninsured (compared to 28.2 million today). It had only been three years since the Supreme Court’s ruling that mental health records could be kept confidential in judicial proceedings. Cymbalta, Pristiq and Abilify were not yet on the market, and several now-popular atypical antipsychotics, including Seroquel, had just been FDA-approved. The Human Genome Project was incomplete. Evidence of genetic risk factors for mental illness was assumed, though not proven. But these statements, from the final chapter outlining Satcher’s vision for the future of mental health care, remain as true as ever:
Gaining new knowledge about mental illness and health is everybody’s business. … [H]igh-quality research is a potent weapon against stigma, one that forces skeptics to let go of misconceptions and stereotypes concerning mental illness and the burdens experienced by persons who have these disorders.
Multiple and complex explanations exist for the gap between what is known through research and what is actually practiced in customary care. Foremost among these are practitioners’ lack of knowledge of research results; the lag time between the reporting of research results and the translation of new knowledge into practice; and the cost of introducing innovations in health systems. In addition, significant differences that exist between academic research settings and actual practice settings help account for the gap between what is known and what is practiced.
TMS and other novel brain stimulation methods are trying to climb out of this gap. They may in fact be the best possible treatments for thousands (or millions?) of people with mental illness, but if they exist without broad, affordable access, for the average patient they may as well not exist at all.
If Dr. Levine can persuade Aetna to cover the cost of maintenance treatments, I’ll do six sessions in August. Since I’m currently covered by COBRA, the long-term future is uncertain. Research suggests that people who respond to TMS may require ongoing touch-ups, maybe once a year, maybe twice a year, maybe every few years. If my family gets covered by a different employer plan and I need more maintenance, Dr. Levine will repeat the wrangling process to determine the financial impact under a new insurer. (Remember, all private insurance covers TMS, but the reality is that some coverage is better than others.) If COBRA runs out and we still aren’t covered by an employer plan, we will switch to Obamacare, which doesn’t cover TMS and, um, also might not exist by then. That could mean a choice between tapping into savings or forgoing treatment, since each session costs about $500 out of pocket. It’s frustrating to know that any insurance plan in the country would gladly deliver bushels of cheap sertraline for the rest of my life. Meanwhile, the most effective — and safest — treatment I’ve found could become difficult or impossible to access.
Last week I told my therapist how much I worry about this, that someday I’ll need more TMS and won’t be able to get it. In a strange way, knowing there’s an effective treatment and being unable to access it seems more painful than never finding a treatment that helps. “Let’s cross that bridge when we come to it,” my therapist said. Because TMS has lightened the crushing despair that used to accompany my every thought, I was able to listen to this, and did exactly what you’re supposed to do with a worry: I acknowledged it, accepted it and let it go, at least for now.
A well-meaning reader told me that I was brave to write this stuff down on the internet where anyone can read it. I appreciate the sentiment, but typing on the internet doesn’t constitute bravery, unless you are typing from an actual war zone. The only war I’ve ever seen is the one my brain made in my head. Physically, I’m on a comfortable couch in an apartment where the greatest potential hazard is tripping over cat toys. On the other hand, I realize there is some risk of judgment, or as the experts like to say, stigma. I work in an industry where your intellect is your value, and where people are easily replaced. Someone could Google my name (or scroll back through my Twitter), read these entries and decide that it’s better not to take a chance on this person who obviously has some… you know… issues. I’ve considered that risk and chosen to ignore it, because I believe that mental illness does not diminish my value or my intellect, and it would be hypocritical of me to hide as though it did.
Also, just from real-world experience, I’ve encountered far more discrimination for my position on avocados than my mental health status. I will come right out and say it: Avocados, the most overrated food of our time, are disgusting. They taste the way ear wax smells. They are hideous, lumpy on the outside and slimy on the inside. They are gross on sandwiches, on sushi rolls, in smoothies and on toast. There should be more peas in guacamole. In fact, guacamole should be all peas, no avocado. I welcome your judgment.
Yesterday I received a cryptic letter from Aetna.
Why, I wondered, would Aetna need me to provide them with a copy of the Aetna member ID card they sent me earlier this year? Why are hyphenated names still so hard? How can I resubmit a claim if the letter doesn’t specify the claim number, provider or date of service? What is the ISO ECHS Unit?
I called Member Services and spoke with a rep who discovered that — drumroll, please — my TMS treatment claims, totaling thousands of dollars, had been flagged by the system and were now “pending” instead of “approved.” According to the rep, “There are certain codes for diagnoses and procedures that are considered experimental or investigational, so those will trigger a denial from the plan because they’re excluded.” In my case, the procedure code for TMS was the red flag. When this happens, it launches an investigation by Aetna’s clinical review team, which contacts doctors directly for more information. Dr. Levine now needs to gather and submit all his records from my treatment, notes he took during my office visits, updates on my progress, and, who knows, maybe also my shoe size (8), my hair length in centimeters (25.4), my preferred deodorant scent (bergamot), the name of my first cat (Midnight) and my skin type (sensitive).
Reminders for those of you just joining us:
- TMS was FDA-cleared for the treatment of severe depression in 2008, and is included in the American Psychiatric Association’s Clinical Practice Guidelines. The technology itself was developed in 1985.
- Before I began treatment, Dr. Levine’s office undertook a lengthy preauthorization process with Aetna to confirm coverage and determine my financial obligation.
Why, then, did my claim for routine TMS treatment of severe depression launch this review? The rep (who was genuinely patient and helpful) gave me the auditory equivalent of a shrug. It’s the TMS code, she said. Until there’s more clinical evidence supporting TMS, despite what the FDA and the APA and doctors and patients say, that code on a claim will send up “experimental and investigational” red flags at Aetna, regardless of preauthorization. Clinical evidence doesn’t mean me receiving treatment, benefiting from it and writing about it here or anywhere else. It means proper, controlled, peer-reviewed clinical studies that meet every available standard and are published in places that count. And that means sufficient funding and research priorities that align with smart public health strategies, all things that are presently endangered.
An editorial published by a group of American researchers and policy experts in the British Journal of Psychiatry sums this up well:
We call for an increase in public discussion of how to apportion funding resources across mental health research domains, as broad participation by stakeholders can lead to new policy priorities. […] These discussions must address thorny details, such as what proportion of the budget should be allocated to what research areas; the near-term public health consequences of particular priorities; and how to leverage inter-agency collaborations to attain a robust and sustainable public health impact. […] Paramount in these discussions must be alleviating the terrible burden that individuals and families living with mental illness face every day.
I still have no idea what the ISO ECHS Unit is.
Here’s my fantasy. It’s 2027. There’s been an epidemic of paid parental leave across the United States. Ali Wong is hosting The Tonight Show. Samantha Bee has a Senate seat. Pop-up ads are illegal. Scientists have invented a blanket that turns warm in the winter and cool in the summer. Nobody gets death threats on Twitter. My toddler is a reasonably manageable pre-teen who enjoys cleaning his room and scooping the litter box. The MTA has installed functioning elevators at every station. One Direction is touring with a full orchestra and costumes by Viktor & Rolf. The voter turnout rate has climbed to 90 percent. I am feeling good, or at least not bad. And this is what happens when any patient walks into a mental health care provider’s office to talk about depression, anxiety, OCD, PTSD or related issues:
MENTAL HEALTH CARE PROVIDER: So, how are you feeling today?
PATIENT: Like shit. I’m really depressed.
MHCP: I’m sorry to hear that. Can you tell me more?
PATIENT spends the next 30–45 minutes having a thoughtful conversation with the MHCP about her current symptoms, medical history and concerns. The MHCP asks sensitive but important questions. Then it’s time to talk treatment options.
PATIENT: I dunno, I guess I just have to go back on meds.
MHCP: Okay. Well, meds are definitely an option, and it’s quite possible I can prescribe something that will help. But let’s make sure that’s the right approach for you right now.
PATIENT and MHCP proceed to discuss a range of treatment options, which include standard antidepressants, new and improved antidepressants, various behavioral therapy modalities, brain stimulation techniques like TMS, complementary therapies like acupuncture, and combinations of the above.
MHCP: …so let’s start with this treatment plan, and if we’re not seeing some results in a few weeks, we’ll revisit it. Does that sound OK? Do you have any questions?
PATIENT: Just one.
MHCP: Go ahead.
PATIENT: I don’t have a trust fund. Will I have to choose between buying groceries and getting the treatment I need?
MHCP: Hahaha, what is this, 2017?
PATIENT: I know, I’m kidding!
MHCP and PATIENT high-five each other. The End.