Thread by @hope411adcock

🧵 The @DEAHQ @CDCInjury @HHSGov @CMSGov interference in the practice of medicine is having devastating consequences for people who have #RareDisease Complex #chronicillness or a #Disability that requires a controlled substance to maintain their health

Fear, not Patient well being is determining prescribing practices.

Patients like my daughter are caught in the riptide of Medical Professionals attempting to avoid unwarranted persecution by Law Enforcement.

Unable to discontinue the only Seizure RX

that has stabilized her condition & not caused severe life threatening adverse reactions.

Since the @CDCgov Guidelines were issued by @CDCInjury in 2016, my daughter's life has been put in jeopardy repeatedly. She is a rare disease patient with multiple overlapping chronic

illnesses which result in significant disability.

The systemic discrimination she has faced attempting retain her treatment regimen for her disabilities has been profound. She has experienced life threatening, involuntary rapid tapering and abrupt discontinuation of

pain medication on multiple occasions despite the clinicians being fully aware that she has a heart condition and a seizure disorder. One clinician initiated a taper of 75% on day 1. His response when concerns were raised "I know you need the medication.

But my practice is more important than your life. I'm too scared of the DEA to prescribe what you need."

Discharged from her PM's practice solely based on her inability to discontinue her seizure medication.

Now THIS!

Her insurance Co purchased her PCP's practice

is demanding she taper off of her seizure medication.

They didn't bother to do a chart review. We now have less than 30 days to somehow resolve this issue when her current RX will need to be refilled & her PCP will no longer be with the practice.

Working on arranging Palliative Care.

But, they *Only* prescribe for Hospice Patients. Palliative Care patient prescribing is handled by the patient's PCP.

My daughter is being left with no good alternatives should the clinician employed by the Insurance Co

decide not to refill her RX, or to initiate a rapid taper.

➡️Attempt to live with an untreated seizure disorder and comorbid heart condition,

➡️Rapid Taper resulting in Benzodiazepine Withdrawal Syndrome (a previous gap in treatment due to a clinicians delay in sending

in a refill resulted in a 10-day hospitalization)

➡️Take a different class of medication known to cause life threatening adverse reaction, or

➡️Attempt to self-medicate via the black market, (illegal, and potentially contaminated with illicitly manufactured fentanyl (IMF)).

Our health care system and approach to drug policy are fundamentally broken when medical professionals fear to act in the best interests of their patients.

How can Patient's make Good Decisions when there aren't any Good Options to choose?

The icing on the cake... She can't even schedule a follow up with the Nurse Practitioner who will still be with the practice for another 2 weeks.

They don't know *where* she will be located. So, 1 week before the RX is due to run out.

Scrambling for an appointment *wherever*🤦‍♀️