Wednesday, August 7, 2013

Are we serious?

After each tragedy in this country in which behavioral health has played an obvious role, people say we need to be more serious about identifying behavioral (mental) health "issues," as well as treating them.  A new theme in healthcare is the integration of behavioral health with primary care (primary care includes things like family medicine and pediatrics...  it's not specialty care like neurology).  That means if a person goes for say, a physical, their primary care physician may identify something like depression, and the idea is they may then work alongside people who specialize in behavioral health to assure the person receives treatment and continues to get support.  Another idea in this area is to locate people who specialize in behavioral health within primary care clinics, so they are right there if someone needs something.

This is all fantastic.  There are even grants to help with this integration of care (integration means instead of siloing different parts of medicine, all the different parts talk to each other).  This works great, I think, from the standpoint of providers, assuming they can work together, assuming they have the freedom to identify and treat according to the needs of each individual.  In medicine, there is the idea of patient centered care, where the individual patient and physician would strive for the best care for that patient.  In addition, which seems to conflict a bit with the term patient-centered, there are guidelines which say if you have this disease, then these treatments are what you should get.  Further, guidelines may say that you should not get this other treatment because it hasn't been proven to work for this disease.  Then the problem becomes the clashing of guidelines with personalized care, where as I said, everyone is an individual and everyone responds differently...  patient -centered.

Step away from behavioral health for a minute to the MS world.  Ampyra is approved for MS, to help with walking, but it is only supposed to help so much... it has helped me more than it should have. Provigil is approved for narcolepsy and sleep apnea; it has mixed results with MS in terms of improving fatigue.  If you've read my other blog entries, you might discover that I don't tend to respond to what the guidelines say I should.  That is why it is critical that a patient like me is engaged in their care and works closely with a physician; otherwise nothing may work. Ampyra has helped me a lot; Provigil in combination has meant that I have more energy.  Neither should work quite like that.  Both do.  In combination.  This is personalized medicine over guidelines.

People may criticize personalized medicine over guidelines, in part because they may say that physicians like to prescribe medicine just to prescribe medicine.  Actually I have heard this a lot.  It's a common them.  Providers are supposed to treat disease z according to guidelines.  I find it interesting.  In my case, Ampyra and Provigil were medicines at my request, due to lots of research.  I pushed for them.  Physicians then had to support me.  I went on Provigil after trying 2 other things for MS fatigue.  MS fatigue is different than just being tired mentally or physically, and it's very hard to explain.  It's what happens at the end of a day when someone comes home exhausted...  so exhausted they just sit the and grab something to eat, and just  sit there, unable to sleep, with the thought of moving being "too much."  You really can't understand it unless you have it, and not to be snobbish, but you can't relate other types of fatigue to it.  It's often the point at which I just sit there and say, "God, this sucks.  How long will this last?"  But the combo of Ampyra and Provigil has largely taken it away.  I haven't come home and sat with a piece of bread without moving for a very long time now.  But darn it!  I am not following those guidelines!

Back to behavioral health.  Someone came to me once, because I'm this disability rep or whatever you want to call it.  They told me they had switched health insurance.  The new health insurance was following guidelines!  As a result, they were taken off their routine of medications, the routine that worked, that was personalized, and that, of course, didn't follow guidelines.  They told me it was affecting their ability to function.  They were having a hard time working.  They couldn't continue this much longer.  This was all a behavioral health issue.  It gets tricky because in behavioral health, patients can keep things secret.  Most often no one knows anything.  I have had other conversations like this one.  They are all very confidential...  "I have bipolar.  Please don't tell anyone.  I don't know what to do."  Then I go to meetings where people joke about making sure to take their happy pills; where people joke about behavior.  I sit there and wonder, in those meetings, how many people just may be taking those happy pills, or have a behavioral health diagnosis, in the meeting?  How many people struggle to find the right combination of medications in order to live their lives; how long does it take them to find the right combination, which probably doesn't follow a guideline?  Medicine is personalized.  Physicians are helping to find that balance.  They, like their patients, want their patients to be able to live life to it's fullest.

What gets in the way is insurance.  A patient may find the balance in medications.  It may have taken years to do so.  I found the Provigil Ampyra balance.  like many people with MS, depression is an extra "gift." If you think about it, it makes sense... Diagnosed at age 20, knowing I wouldn't run competitively. Not exactly a recipe for happiness. Medicines themselves can increase risk for depression, depending on the medication.

So we have behavioral health, including depression, and we have people wanting to integrate behavioral health with primary care.  There's also continuity of care and adherence to medication use, which means if it works, don't change anything!  And then the insurance companies, which are supposed to be a part of all of this, jump in and ruin it all!  They take a look at a prescription and say no, we don't cover that - it doesn't fit our guidelines.

Imagine...  for behavioral health, getting patients to keep taking their medications on a regular basis can be a challenge.  When an insurance company says no, what is the person to do?  If they have difficulty adhering to medications, it seems this is a good reason to drop the medicine.  Then the consequences may be devastating.

What can be done?  Are we serious about treating behavioral health, or are insurance companies more concerned with following their guidelines and saying no?

A few times, I have either gone off Provigil on my own, or not given it, or someone thought I should try something else.  And it has never worked; rather, it causes depression, which comes on very quickly and is very extreme.  This year I have had 2 new insurance companies who have tried to deny Provigil.  I am lucky to have the ability to fight, to remember what happened when I went off it on my own.  The fact that I have to fight leads me to see a glimpse of why people may stop taking medications and fall in a sense - down, down, down...  which leads me to wonder if we are serious about treating behavioral health.

I don't think we are there yet.  I don't know what it will take.  But I will say my last fight was difficult, emotionally draining, when all I wanted was continuity of care and adherence to medications that keep me alive and going.



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