Last week, I felt a great disturbance in the Force, as if millions of voices cried out in terror and were suddenly uninsurable. While tracking the Trumpcare vote (AHCA), I felt like Princess Leia, helplessly watching the Empire destroy her home planet. Yes, the Senate still has to vote on it, and no, I’m not saying that Republicans are evil. But for me and so many Americans, Obamacare (ACA) got rid of the terror and carnage of being denied or unable to afford healthcare coverage based on pre-existing conditions. Watching it dismantled was disturbing.
Obamacare also did away with the false separation of mental health from physical health. Trumpcare does the opposite, classifying mental health care as non-essential, meaning that states, employers, or insurers will decide if the 1 in 5 Americans who struggle with mental illness will be covered at all. May is Mental Health Awareness Month , so here’s one fact to be aware of:
“The World Health Organization determined that depression is presently the leading cause of disability worldwide, and is a major contributor to the overall global burden of disease.” - World Health Organization
That’s just ONE KIND of mental illness. How will Trumpcare affect you, your friends or family with mental health issues? Like this:
The House bill allows states to let health plans:
- Drop coverage of mental health and substance use (one of the essential health benefits).
- Charge people higher premiums if they have a pre-existing condition, like depression or anxiety.
- Create high-risk pools, which are another way of charging people with mental illness more money and providing less coverage.
--From NAMI (National Alliance for the Mentally Ill)
As a person with pre-existing mental health conditions, who is here and stabilized today because of consistent, quality mental health care, it’s disturbing to watch federal health care policy under the GOP re-ghettoize mental health care. Obamacare is flawed, yes, but throwing out the progress which brought relief and functionality to so many Americans is illogical and dangerous. It’s not great for the GNP numbers either -- which should matter to both the GOP and Democrats. My concern is not just for myself, but for people suffering the way I used to, who now have an uncertain path forward. People like Matt, who courageously agreed to share his situation here:
“I was mugged and knocked out pretty bad way back in 2008. Lost some speech capability and had to get all the MRI's and CT scans and whatever else. I basically recovered, but haven't been the same since. My decision making is the worst now. Impulse control and compulsions can be frustrating for everyone -- I believe those decisions happen in the frontal lobe. I guess mine was damaged. I was never a genius, but I had control before.
No one can really understand what I'm feeling. Depression is constant, super anger flashes, heightened over-sensitivity to light and noise, and I don't like to be looked at (which I guess is called sociophobia). I don't feel joy anymore. Thoughts of suicide are always present and sometimes I, irrationally of course, feel like other people are somehow communicating that I should kill myself. Weird stuff, but very real.
First and probably most importantly, I am not an immediate harm to myself. Just giving you the rundown of pervasive thoughts. They are not rational thoughts, this is just the brain I live with now.”
This could happen to anyone, literally walking down the street. Matt wrote the email excerpts in this piece to a former co-worker who lives with a degenerative disease, hoping to find understanding and help. He was about to become homeless due to the cumulative impact his mental health had on his ability to support himself. He is unable to maintain steady employment, and cannot afford Obamacare premiums.
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Matt’s situation came to my attention when his former co-worker asked if I might know how to help him. My credentials? I’d been there. I’d also been on disability for mental illness. She forwarded me his message, which hit me hard -- not just because of what was going on for him -- but because I’d written letters like this. I remember how humiliating, terrifying, and useless I felt asking for help. I wanted him to know I was on Team Matt. I called him that night, to try to figure out next steps, and hopefully find a way through. I know it’s not easy, but part of me wondered, with the current and future state of our healthcare system, just how hard it was going to be. His letter continued:
“There is also shame involved. Shame about being a grown man who can't handle his business, shame about going backwards with employment goals and generally shame about not being, you know, just normal like everyone else. There's always that element of starting a new job where people innocently ask 'so what did you do before?' Well, I've been clinically depressed and haven't worked much in the last three years.
It's not acceptable in our current society. Lies are preferable, which bugs me, because if someone hurts their leg, they limp and a doctor diagnoses the cause and sets a course of action to correct it. Maybe they still limp, but nobody cares. If you have not had the pleasure of experiencing our mental health system, then good for you. Programs and money are constantly cut, so we have Cook County Jail, right?
I'm sorry but Obamacare sucks, too, probably because it was Romneycare first. You don't get any benefit if you can't work. So my mom paid for Blue Cross straight up for a year. The cost of that went from $230/mo for the cheapest plan to $322/mo the next year! Are you kidding me? So I had to drop any kind of insurance. Seriously, thanks Obama for being too much of a pussy to push for single payer. God knows what Trump will bring.”
These are the kinds of catch-22s that beg us to consider single payer, aka Medicare for All. Matt sent his email just hours before the AHCA passed the House. What Trump and the American Health Care Act bring is this:
- “over $800 billion cut from Medicaid in the next 10 years, which will cause vital mental health services in states to be slashed.
- effectively ends Medicaid expansion -- a lifeline for single adults with mental illness who fall through the cracks -- which today covers 1 in 3 people who live with a mental health or substance use condition.
-- NAMI
Matt recently applied for Medicaid, but was denied -- apparently they didn’t think his lack of income was believable. If you think that’s far-fetched, the same thing has happened to me twice. He will now have to go through the red tape of appealing it. Even if Matt is eligible for Medicaid, it’s not going to be a long-term solution if the AHCA passes the Senate. Mental health is not a partisan issue, but it’s being treated as one. That we are still discussing this issue is, well, sad.
The brain is a vital organ -- arguably the most important. The brain, in tandem with other bodily systems, regulates thought, mood, and behavior, so symptoms of a problem with the brain will manifest primarily in thought, mood, and behavior. Brain health can be impacted by traumatic injury, genetics, brain structure, disease, or biochemical makeup, to name a few. A problem with the brain IS a physical health problem. Mental health already IS physical health, and mental illness already IS physical illness.
Now, we’re going backwards in government messaging and it is negatively impacting the already-precarious public understanding of mental illness. Once believed to be caused by demons or possession, humanity progressed to blaming a person’s bad character, flawed morality, or laziness for not pulling themselves up by their bootstraps during a rough time. We progressed again when science and medicine started to recognize common symptoms and classify disorders. Still today, many people believe mental illness symptoms are a person’s fault, or can be fixed by a positive attitude, or a good walk in nature. When you have a mental illness, trying to fix your brain with your brain is like trying to fix a broken arm with a broken arm.
Standard mental health treatment includes talk therapy, and prescription medication, but it doesn’t work for everyone. Personally, psychiatric medicine gave me my life back: a functional, motivated quality of existence that I had lost sometime in my early twenties from recurring, disabling depression. Unfortunately, many people who take prescription medication for their mental health conditions get pill-shamed frequently by friends and family -- and bad Facebook memes.
Pill-shamers make the same mistake Trumpcare makes: treating mental health as non-physical and non-essential. Sadly, I have seen people cave to this pressure, and tragically, in one case, take their own life. Just as you would not tell a person to stop taking pills for their high blood pressure or insulin for their diabetes, you should not medically advise someone on their psychiatric regimen. That said, medication does not work for everyone or for every condition. It doesn’t work for Matt:
“I have seen a Licensed Clinical Social Worker, I saw a psychiatrist for a year last year, and my primary care physician was great until she retired. Between them I have tried probably a dozen or so medications to no avail. The clinical term is “treatment-resistant.” I have since been diagnosed with Bipolar II and PTSD.
They throw lots and lots of pills at you if you aren't making progress. This can create problems in behavior by itself. I had basically a psychotic break, including auditory hallucinations, caused by medicine. That experience was such a humiliation, it really broke me.
So now I basically have this huge gap of three years of work history with not a lot to show for it. I’m trying to put together some semblance of self reliance again -- find a place that would be accepting of spotty work history. If I can find a place to sleep while I try employment again, if you have any openings where I can janitor or host or try bartending or whatever. So yes, even though it's not ideal to go back to a job I had when I was in my twenties, at least it's a place that I know how things work. Those were definitely my happiest days, working with you all.”
Mental health disability doesn’t mean a complete lack of functionality. It means a lack of consistent, predictable functionality. If you are at times functioning normally and take on a job, then when you have your next episode or acute symptoms, depending on what they are and how often they occur, you risk losing your job. Steady employment is not a psychiatric treatment plan -- it’s the byproduct of a successful one.
Another option for Matt would be applying for Disability, but that is a long shot considering the rate of denial. Disability, like retirement, is a benefit all Americans are eligible for if they have paid Social Security taxes via work over their lifetime, as Matt has. However, it is such a lengthy and complex application process, that it is common -- and recommended -- to hire a disability lawyer. For a lawyer to take his case, Matt would need to be under the consistent, documented care of a physician -- a crucial component of a successful disability application. With no health insurance or job right now, this is not possible.
Despite political messaging from others at HHS, I align with the experts from @aafp @AmerAcadPeds @AmerMedicalAssn in opposition to #AHCA
&– Andrey Ostrovsky, MD (@AndreyOstrovsky) March 9, 2017
The Chief Medical Officer of Medicaid was called a “hero” for breaking with the administration in opposing the #AHCA.
When your symptoms impact your ability to work, people most commonly turn to Medicaid, if they have insurance at all. They are the ones who will be most impacted by these $800 billion in cuts that supposedly don’t impact anyone. Right now, Matt is one of the “anyone”:
I'm in a slightly dire situation now. I thought I had co-signers for my current apartment lease renewal, but money and a cosigner are both problems of my own making. I wouldn't co-sign for me either without any income. I have to be out actually tomorrow by midnight. So I'm throwing it all at the wall. This is all going in slow motion for me, like it's not real, but after this Friday I'm probably going to try and sleep in the park.I hate to depend on other people, but that's all I can do now. I'm a 43 year old man who is mentally ill. I've never really admitted that before. There's a reason mentally ill folks end up homeless. And now it's me. Gross feeling to own.
I can say that I'm going to sleep in the park, but I have to admit, it's pretty scary. But I wouldn't be the first. To be extremely honest and real with you, I would just like to end my life, since I haven't felt or looked forward to anything for awhile. But logistically, I don't know how people do it. I do, of course, but the options are tough to conceive and accomplish, believe it or not. I'm not a fan of gruesome for other people.”
Yes, Rep. Labrador, people do die from lack of access to healthcare, and those with mental illness or in active addiction are arguably the most critically vulnerable, whether by their own hand or accidental overdose. In talking to people about suicide, one thing is clear: the symptoms of untreated depression are not sustainable in the long term. People are looking for relief. As strange as it may sound, the thing I hear the most from friends with severe depression, is that just knowing you have the power to make it end can get you through another day. Worldwide, someone commits suicide every 40 seconds. It is the second leading cause of death in 15-29-year-olds.
- “The Congressional Budget Office estimates that 24 million will lose insurance for mental health care, pushing people with mental illness to emergency rooms, jails and the streets.” -- NAMI
And yeah, probably some to the morgue, frankly. To those who say that nobody is denied care, that they have to treat you at an ER, that does not work for the mentally ill. I know from taking suicidal people to the ER that their only legal obligation is to medically stabilize you, and consult with a psychiatrist to determine if you are still a danger to yourself. For people without insurance, that’s about as far as it goes. A particularly hard hit group will be U.S. Veterans.
You can’t get an accurate psychiatric diagnosis and a long-term mental health treatment plan in an ER. You can’t complete addiction treatment in an ER. When someone says they’re suicidal or abusing substances, they’re describing symptoms they need a solution for, they’re not looking to get committed to a psych ward for two or three days.
Regressive policy and ignorant thinking are particularly lethal for mental illness -- and that includes addiction. The U.S. Surgeon General recently reclassified addiction as a brain disorder, a type of mental illness, in the agency’s bombshell report, “Facing Addiction in America: The Surgeon General’s Report on Alcohol, Drugs, and Health.
Why didn’t anyone hear about it? Because the report was released a week after the 2016 presidential election. It was huge, life-altering news for anyone with skin in the game: the idea that the substances of addiction are ancillary, that the modern focus of cause and treatment is on the brain’s role. Sadly, it didn’t get the attention it deserved.
"We must help everyone see that addiction is not a character flaw — it is a chronic illness that we must approach with the same skill and compassion with which we approach heart disease, diabetes, and cancer." - former Surgeon General Vivek Murthy
However, compassion does not seem to be in Trump’s playbook when it comes to drug policy. Trump has since fired Surgeon General Murthy , and cut the Drug Policy budget by 95%, effectively killing it . There is little indication as to how he plans to address the opioid crisis, outside of his continued praise of addict-killing Philippines President Duterte , whom he recently invited to the White House, appointing Chris Christie to head the now-gutted White House commission on drug policy, and knowing the economic benefit he gives the private prison industry when his policies call for incarcerating certain types of people.
The mentally ill and addicts are not a powerful lobbying force. Considering the stigma, who wants to join a coalition made up of them? Princess Leia herself, Carrie Fisher, was an outspoken advocate of mental health and addiction treatment. She is gone now. The mentally ill are not only under-served, they are largely powerless, and without treatment, symptoms become acute and lethal. Who will stand up for them?
The United States has been observing Mental Health Awareness Month since 1949. It’s time for us a nation to consider the minimum threshold we are willing to maintain for mental health care in this country, based on our shared values and humanity, not religion, race, or party. Humans are too reckless and stupid to wear seat belts unless we’re forced to. There is a reason we drive on one side of the road. Laws have to be better than the worst of us, for the good of public safety and health. So what are we willing to do for the mentally ill? We need to decide what baseline of care lets us sleep at night, and legislate from there. I do not take my mental health for granted -- I need to be vigilant every day. So it is with our democracy.
Civil rights, which seem obvious, had to be embedded into the nation’s laws, and they are tested daily. In the same way, progress in our understanding and treatment of mental health as undifferentiated from physical health, needs to be in the fabric of our laws, accepted in our culture, and reflected in our media. We need to institutionalize empathy and compassion for the mentally ill to preserve the social and civic progress we have made. Otherwise, we go backward, and people will be ground up in the apathy and red tape. Like Matt, they already are.
The United States, the wealthiest nation on Earth, should have basic health care, or Medicare for All , that is not tied to employment status or work requirements -- for so many reasons. One of them is so that people with debilitating health conditions like Matt's are not cast out to fend for themselves. I hope, as a society, we can agree on that basic principle. If we do, we need to get the details right, because the details matter when you’re facing the street. In all the current and forthcoming analysis and partisan bickering, we need to remember people’s lives are at stake.
Consistent, quality mental health care enables me to function and be a productive member of society -- something I am not capable of without it. So yeah, Obamacare was my Alderaan. Now what? I hope people will stand up for us, for people like me, for people like Matt, because Go Fund Me cannot be the solution to America’s healthcare crises -- but right now, for Matt, that’s all he’s got.
”I never thought in a million years I would be this guy. But I guess this is how it happens. I rarely drink, I don’t use drugs, and I don't smoke. Luckily I can't grow much of a beard, so I won't be one of those dirty beard guys. So there's that. I'm trying to kid myself into believing this will be fine. And I fully realize I am actually one of the lucky ones. Some folks are totally alone.”Regards,
Matt
Actions you can take:
- To help Matt directly via Go Fund Me
- To help elect progressive candidates in swing districts : Swing Left
- To advocate for or if you need advocacy for the mentally ill: NAMI
