Dignity & Dose Reduction

It’s hard to put a price on dignity.  Just ask a patient dealing with PBA, or pseudobulbar affect.  

The condition causes spontaneous, uncontrollable laughing or crying.  That invites stares, pointing or confused responses from others. And PBA often occurs alongside Alzheimer’s or multiple sclerosis, making difficult situations more difficult still for patients, spouses and families.

So, why would policymakers block patients’ access to the FDA-approved medication that treats PBA?  Search me.

Yet medication that helps patients control PBA is subject to what’s known as gradual dose reduction requirements in long-term care facilities.  In other words, the Centers for Medicare and Medicaid Services may direct long-term care facilities to slowly taper residents off of the medicine that’s keeping their embarrassing and uncontrollable emotional outbursts at bay.

I saw this last year with one of my own patients.  She had been responding well to medication for three months.  She was more comfortable, more confident. But then she moved into a long-term care facility.  There, without my consent, staff decided to reduce her medicine dose.

The move wasn’t just inappropriate; it was nonsensical.  PBA medication comes in only one dosage, so “gradually” reducing it isn’t even possible.  Staff just cut my patient off of her doctor-prescribed, FDA-approved medicine.

To everyone’s surprise, I was able to get the decision overturned for my patient.  I wrote a letter to the state with documentation of her condition – including incident reports of all the behavioral issues.  The state ruled in my patient’s favor, and she’s now been back on the medication for months successfully.

But not every patient is so lucky.  Not every physician has the time to appeal decisions on behalf of each affected patient.  And not every patient will respond to treatment once it’s been stopped and re-started. So CMS might want to take a good look at this policy and ask, “Is gradual dose reduction appropriate for PBA patients?”

I’d ask them to consider several facts in particular:

  1. Treating PBA makes patients safer and healthier.  In addition to restoring patients’ dignity, treatment can halt related behaviors that may be a problem.  One of my patients, for instance, had severe skin issues because PBA led her to violently scratch herself.
  2. Access may reduce the need for other medications.  In one case, providing PBA treatment to a patient allowed me to take him off of an antidepressant medication.  Uncontrollable laughing and crying can take an emotional toll on patients’ self-esteem and quality of life. Addressing the condition, on the other hand, can offer widespread benefits.
  3. The only “alternative” PBA treatment is antipsychotics.  There’s only one FDA-approved treatment for PBA. Without access to it, patients will likely end up on antipsychotics.

I recognize that the Centers for Medicare and Medicaid Services’ jurisdiction is vast, and that the population of seniors affected by PBA is, relatively, small.  But this population could see a big quality-of-life improvement if access to doctor-prescribed PBA treatment were constant and unfettered.

So I ask of CMS: Please give these people their dignity back.  Please remove unsupported and unnecessary dose reduction requirements for PBA patients in long-term care facilities.

Darlene Dunay, DO, practices family medicine in Old Forge, Pennsylvania.


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