Parity in health insurance is hard won, and we need to keep it

I don’t post much politics on this blog, but this one issue is relevant to mental health concerns.

Last week, the Congressional Budget Office released their analysis of H.R. 1628, the bill to repeal and replace Obamacare.

However, the agencies estimate that about one-sixth of the population resides in areas in which the nongroup market would start to become unstable beginning in 2020. That instability would result from market responses to decisions by some states to waive two provisions of federal law, as would be permitted under H.R. 1628. One type of waiver would allow states to modify the requirements governing essential health benefits (EHBs), which set minimum standards for the benefits that insurance in the nongroup and small-group markets must cover. A second type of waiver would allow insurers to set premiums on the basis of an individual’s health status if the person had not demonstrated continuous coverage…

And the CBO explains why reintroducing preexisting conditions for people who don’t demonstrate continuous coverage would, over time, result in the community-rated premium group being basically a group of people who have preexisting conditions, with premiums too high for most such people to afford. But I’m leaving the preexisting condition issue out of this post, important though it is for people living with mental illness, to attend to the other part of the proposed waiver system, the one that allows status “to modify the requirements governing essential health benefits.” One of those requirements is the requirement that mental illness be covered like any other illness. This is a battle that has been hard won. I recall a DBSA conference where a man spoke about an argument that he had made for parity. He said he took two medications out of his pocket, and said:

This is for my ass. This is for my brain. My insurance company pays for the first, but not the second. So you can see that they think my ass is more important than my brain.

If this bill passes, as much as a sixth of the population may go back to the days when their asses are treated as more worthy of medical care than their brains.

 

Proposition 61

For the November 2016 election, we get to vote on 17 propositions. It can be hard to make up your mind about so many. One proposition, for better or worse, may affect many people who live with mental illness, through it’s effect on pharmaceutical prices. I’m not going to tell you how to vote; I see good people and organizations coming down on both sides on this one. But I am going to talk a bit about how to figure out how to vote. What would this proposition do, what are the pro and con arguments, and what sources of information can help you?

The first place that we can look to learn about the propositions, of course, is the California ballot pamphlet. Conveniently, for those of us who sometimes misplace things, you can also find the ballot pamphlet online at the California Secretary of State web site. Here is a link to the ballot pamphlet section on Proposition 61.

In the ballot pamphlet, you can find the full text of the proposition, a legislative analyst’s summary (which gives you an idea of the effect of the proposition that those of us who aren’t lawyers would have trouble getting from the text of the law), and ballot arguments that are submitted by proponents and critics of the proposed law. But it’s rather long, and can take a while to read all this information for 17 different propositions. If you don’t want to read through the whole ballot pamphlet (or even the whole pamphlet leaving out the text of the proposed laws), there are simpler summaries. One is actually in the pamphlet (see the first page of that link I gave, and just jump to the longer sections after reading that. Another is supplied by the League of Women Voters. Here is their information on Proposition 61, including official links to support and opposition.

Another way to evaluate propositions is to look at who endorses or opposes them. For this, you can find a handy chart by California Choices. California Choices does a round up of ballot endorsements by a wide range of organizations and papers each election. (California Choices’ page rounding up information about Proposition 61 is here.) Or, if you’re interested in the money trail, you can check out what Ballotpedia has to say about Proposition 61.

OK, I’ve talked a lot about sources, but I haven’t told you what’s in the proposition, or what the pro and con arguments actually are. Here’s a brief description from the ballot pamphlet:

Prohibits state from buying any prescription drug from a drug manufacturer at price over lowest price paid for the drug by United States Department of Veterans Affairs. Exempts managed care programs funded through Medi–Cal. Fiscal Impact: Potential for state savings of an unknown amount depending on (1) how the measure’s implementation challenges are addressed and (2) the responses of drug manufacturers regarding the provision and pricing of their drugs.

The crux of the controversy between pro and con (and there appear to be organizations and people I respect on both sides) comes down to “(2) the responses of drug manufacturers”. Proposition 61 is aimed to ensure that drug manufacturers lower their prices, for certain purchases the state makes, to those supplied to the US Department of Veterans Affairs. The connection to mental illness and mental illness advocacy, here, is the fact that some people on Medi-Cal require psychiatric medications, and Medi-Cal programs that don’t involve managed care are covered by this proposition. And lower prices for the state could also mean lower co-pays for patients. Proponents argue that the proposition will lead to lower prices and an end to price gouging like the EpiPen price hike. But, since the proposition dictates what the state can do, not how drug companies will respond, lower prices aren’t the only possible consequence. Opponents of the measure argue that it could, instead, lead to higher prices for veterans (if drug companies decide to raise prices for the US Department of Veterans Affairs rather than lower prices for the state of California), or, alternatively, that pharmaceutical companies could simply refuse to sell some medications at the lower prices, thus forcing the state to restrict what drugs it covers. The end result, say opponents, could be to increase drug prices and reduce patient access to needed medicines.

Whose argument do you believe? You can follow the links I’ve supplied (or add your own sources), weigh the arguments, see who’s supporting each side, and make up your own mind.

 

Conference of DBSA California, 2016

I have just returned from the conference of the Depression and Bipolar Support Alliance of California. Between keynote addresses and workshops, here are the things I attended (for some, I have notes).

Keynote speaker for Friday morning, stand up comic David Granirer, on “I’m OK But YOU Need Professional Help: Creating Recovery – One Laugh At A Time!” For obvious reasons, I didn’t take notes for this one.

Adult Suicide Prevention Training (presenter Liam Mina, MSW): Liam Mina is a social worker with Didi Hirsch, a Southern California organization founded in 1942, which works on suicide prevention. After the death of Marilyn Monroe, in which they were involved in a “psychological autopsy,” they started getting phone calls, not about Monroe, but from people who themselves wanted help. So they established the first suicide hotline in the US. Now they have 24/7 service in English and Spanish, along with texting and chat for the deaf, and Korean and Vietnamese from 4:30 pm to midnight Pacific time. 90% of suicide is associated with mental illness, but 50% are not in treatment. Responding to warning signs of suicide: Build rapport, assess risk (ask directly, and for people who do say that they are thinking about suicide assess degree of risk by asking about plans and with scaling questions), establish safety (make a plan, connect to resources, ask to repeat back plan).

Ask the Pros: Kent Layton and Himasiri Da Silva. This always popular session allows people to pose questions to a clinical psychologist (Layton) and a psychiatrist (Da Silva). Topics included what to do in a crisis, what to do if you’re allergic to all the meds, what are the effects of different strains of marijuana, the difference between ADHD or ADD and bipolar disorder, whether ketamine is recommended for treatment-resistant depression (and the same question for Lexapro), what about food supplements, and the DSM-V.  A few notes from the answers: Medical marijuana isn’t recommended for bipolar disorder. Useful supplements include fish oil (omega-3) and folic acid (not in place of medication, but alongside it). Da Silva feels that the DSM needs to build in more bioevidence; bipolar disorder had a large genetic component. As time goes on the DSM will become more biologically and evidence based. If you’re in crisis, keep showing up and suiting up, get up even if you can only manage a walk around the block, and don’t give up even if getting your meds right takes trial and error.

Bipolar Disorder: A Family Affair (presenter Angela Paccini): I didn’t take many notes on this one. It focused a lot on family stories, in the interest of showing what knowing roles and triggers and providing support looks like.

Bipolar Disorder – The Future (presented Da Silva): There have been four eras in psychiatry: The Asylum Era, the Psychodynamic Era, the Psychopharmacology Era, and what we are now entering, the Molecular Neurobiology Era. We still draw on what was learned in earlier eras (e.g. psychotherapy, especially CBT and DBT, helps, as do medications developed in the psychopharmacology era), but a new improvement in treatment is our understanding of pharmacokinetics and pharmacodynamics. Medications don’t provide chemicals in the form effective in the brain; first they need to be processed by the liver. Here, pharmacokinetic genes, such as CYP450, are important. The CYP450 system involves 57 enzymes responsible for drug metabolism, primarily in the liver. People can be normal, fast, or slow metabolizers, and a genetic test can show which you are. For example, only 55% of people metabolize Seroquel normally, while others metabolize faster than normal (and therefore see less effect) or slower than normal (and therefore see more side effects). Medication interactions are important (for instance, the estrogen in birth control pills can speed up the breakdown process for Lamictal). So is folate, and some people, with a variant form of the MTHFR gene, lack the ability to metabolize folate and may need, instead, to take methylfolate. Genesight offers genetic testing. Da Silva also talked about evidence based practices governing which medications should be given first (ones for which there are large scale studies supporting efficacy and few side effects).

Saturday morning keynote speaker: Antoinette Brunasso spoke on Coping with Depression and Bipolar Disorder: The Impact on Self and Family. This was a very good talk, at a level easy for a lay person to understand, largely around developing what Brunasso calls a “solid, flexible sense of self,” one that allows you to tolerate anxiety, and avoid reacting to conflict by reflexively caving, avoiding, or locking in your position, but rather work through the conflict toward a solution that works for both partners. How “fusion” can lead a spouse to get stuck in the same place as the bipolar or depressed spouse, and how developing a healthier sense of self can help you work through marital conflicts better even when one of you is also dealing with mental illness.

Reflective Functioning and Mentalization in Relation to Bipolar Disorder (presenter Nazare Magaz): Mentalizing is the capacity to imagine inner states in self and others. It can be affected by your early attachment process, which can lead either to secure attachment or to less secure forms (anxious avoidant, anxious preoccupied, disorganized); if you are a therapist, both knowing your own attachment style and recognizing that of your patient can be useful (don’t crowd someone whose attachment style is anxious avoidant). In bipolar disorder, ability to mentalize drops when you go into episode. Signs of mentalizing: You can imagine multiple states of mind that could lead another person to behave as he or she does. If you can only think of one possibility, you may be falling out of the open, curious state you need to mentalize, and instead in a place of psychic equivalence, where you have a thought about what another person is thinking and then assume it’s true. What do you do when someone else is in a place of psychic equivalence? You need to empathize with that person first. How do you develop mentalizing ability? By being around and learning from people who have it.

Lunchtime keynote speaker: David Miklowitz, on Child and Adolescent Mood Disorders. I didn’t take notes on this one, because having notepaper around a lunch table is awkward, but I did live tweet some of it after I had eaten.

Happiness with music (presenter Mike Sullivan): We played ukeleles. I didn’t take notes.

Trauma Effects – Depression and Bipolar (presenter Christine Monroe): Trauma is always part of psychotherapy. It’s part of life. This talk covered: What is trauma? How does PTSD compare to bipolar disorder (e.g. flashbacks to traumatic event compared to depressive ruminating)? What events can lead to PTSD? What puts people at risk? References: Ross Rosenberg on trauma levels. Dan Siegel on parenting. Evidence based treatments: Trauma focused CBT, exposure therapy (start mild), relational therapy, and, a particularly good therapy for PTSD, EMDR.

And that was my last workshop. I condensed my notes a lot for this post, so I may, if I find time, have a longer post on one or another of the individual sessions.

 

 

No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

Review: Clinical Psychopharmacology made ridiculously simple

I am not the target audience for this book.

The book is written for primary physicians who find themselves in the position of prescribing psychiatric medications. That purpose can be seen in the distinctions drawn, throughout, between the sorts of psychiatric conditions that can be managed by a primary physician (such as prescribing antidepressants) and those for which referral to a psychiatrist is recommended (such as psychotic depression).

Still, though the book isn’t written for patients or family members as such, its clear, simple presentation makes it a useful reference for those patients and family members who want to get informed about their medications. We purchased a copy to bring to our support group meetings as a reference.

The book is divided into chapters that cover different conditions (e.g. bipolar disorder) or topics (e.g. enhancing medication adherence). There are tables showing the clinical mechanisms and dosages of different medications, decision charts for selecting the appropriate medication for a condition, and descriptions of how psychiatrists decide on their treatments, from when someone with depression may get referred for therapy alone and when medication is needed, to which medications are appropriate for which symptoms. Case studies discuss how a psychiatrist may adjust treatment depending on the response of the patient.

It’s a good book that can help take some of the mystery out of why your psychiatrist may be making the decisions he or she is making.

 

In transition

This coming Tuesday will make two weeks that I have officially been unemployed. It will also make my first in person job interview (after four phone interviews, one being the one that got me to the in person interview). On the whole, I think I’m getting a good response so far. It does mean, though, that most of my focus has been on keeping myself going with job search activities. There’s a post that I’ve been meaning to write here, that has nothing to do with the job search, and I’m not sure I’ll get it written until I’ve found that next job. So I’ll talk about the job search.

Parts of it come naturally to me; those would be the parts that involve organization and research. Other parts don’t; those would be the parts that involve being extroverted and putting myself out there. But I have to keep going with all of it. That means striking a certain balance between getting out there, and putting in, well, hours of job search related activity every day, and finding things that give me respite. Like reading, and singing.

What things give you respite?

A half forgotten song

I heard the song only once. It was the end of the quarter crunch at my college, and the computer center was crowded. The fact that we all had to go to a computer center with mainframes to get our work done, I know, dates me. I remember the song, or half remember it, partly because the tune was catchy, and the words just repetitive enough to be memorable, but also because the occasion was unusual. Many times I had listened to some other student sing and play guitar, in one or another living room or bedroom in student housing, or when the coffee house had an open mic night. Never before or since did I hear someone sing and play in the computer center, sitting right beside the terminal where we entered ourselves in the queue for computer time. As the queue was long, I got to listen to the whole song.

I don’t know whether it was a song by a professional artist, that I only heard the once, and can recover, if someone else happens to recognize the words I have remember, or whether it was a song composed by the student who sang it, perhaps now forgotten by nearly everyone else except the singer. I’ve half remembered both. There’s the song one of my college roommates loved, “Wake Me Up Gentle,” which I’ve recovered once I found someone else who knew it. But there’s also a snatch of lyrics that I still remember from a guy I knew in high school:

And it’s hey, hey, I’ve been in the night,

Looking for a brighter view of life.

I’ve been in the middle, when I should be on the side.

Time and again I’ve changed my aims,

And find myself on old St. James,

To see what I can salvage from what washes in the tide.

And there’s another that I half remember that was written by a college friend:

Leslie, can your guitar come out and play today?

It seems to me it gets a little lonely,

Sitting there in your chair.

Leslie, can your guitar come out and play?

This song might be one of those. It was, I would say, a passionately “one day at a time” song, and I am reminded of it often when someone says some version of that phrase. The first verse began, “If only I can make it through today,” and I remember some of the rhythm of the rest of the verse, but not the words, because a single hearing is rarely (only once, really) enough for me to learn a song. The second verse began, “If only I can make it through this week,” and the next line, perhaps, “Maybe then the future won’t look quite so bleak,” or something of the kind (that was definitely the right rhythm. And so it built up to the conclusion, “Still, I think I’ll try to make it through this life, if only I can make it through today.”

If anyone has ever heard of the song, and can fill in my memory, feel free to let me know. If no one else knows it, I have half a mind, someday, to write my own version of the rest of it, just so that, when it comes to mind, I can have a whole song running through my head rather than less than half a song.

 

Do not resuscitate

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The hardest thing about taking an elderly dog to urgent care for a possible seizure is the decisions to be made. I think that the little dog, who is all heart, would, if he were the one making the decisions for me, say, spend every penny for the least chance of keeping his mommy with him a little longer. But I, more analytical, weigh the odds of success and what I expect his quality of life would be. I turn down the X-rays, to search for possible cancer elsewhere in the body that might have spread to the brain, because if a thirteen-year-old dog with a heart murmur now has metastatic cancer that includes a brain tumor, there is no way I’m taking him through cancer treatment. In fact, if he has a brain tumor at all, I won’t treat it. I’ll keep him comfortable and happy for as long as possible. For the same reason, I mark “Do not resuscitate” instead of “CPR” or “Advanced CPR.” And say yes to the overnight observation, the IV, the blood tests that he didn’t already get from his regular vet last month, and an anti-convulsant should he have a seizure while they’re watching him.

He didn’t have another seizure. We’re not sure if what he had yesterday (a couple of minutes of being unable to stand) was a seizure; some cardiac event is also possible. The blood tests came back fine, and Drake stayed chipper overnight, and is in good spirits and walking and climbing stairs today. It’s anyone’s guess how long he’ll stay well, and how much longer we’ll have with him.

 

Travel and Stress

We’re back from our big trip, and we have had a week to recover from jet lag. On the whole, the trip was great. But since this is a blog about mood swings, I’ll talk about the stressful parts, and dealing with them.

For me, the more neurotypical member of the family, the main stress of travel is the fact that I have a lifelong phobia of vomiting. Travel offers triggers for that. I’m going on a plane. What if I get air sick? I’ve never been air sick, but there’s always a first time. So I put sea bands on my wrists, and take Dramamine, and bring ginger candy to eat, just in case. Then there’s the opportunity to get sick in other countries. We saw a travel doctor, and got all the cautions: Don’t drink the water. Don’t take ice in your drinks. Don’t eat fresh vegetables. (When you get a tasty looking salad brought to the table along with the cooked meal you ordered, just eat the cooked food and give the salad a pass.) And we got antibiotics, which came in handy when my husband slipped, had a sandwich with a bit of lettuce and tomato, and got sick.

For my husband, who has bipolar disorder, there’s another source of stress: time changes. We had a couple of long days when we barely got any sleep because we were travelling for, say, 24 hours. He got an increase in his mood stabilizer to ward off mania, and did his best to get onto a good sleep schedule quickly.

Then there are the ordinary stresses of the trip: He lost a crown in London, and needed an emergency dental visit. We got pickpocketed in Paris, at the cost of 80 euros. We almost missed one flight (but convinced them to let us check in an hour before departure, though they said at first that check in was closed). And there are a large number of things that must not be lost, meaning inevitable searches to find one or another of these things.

Finally, there’s the return home, with all the ordinary household inconveniences while we’re still jet lagged.

On the whole, I think we did pretty well. Seeing the travel doctor beforehand helped, and having my husband talk with all his doctors and his psychiatrist ahead of time also helped.