SNL Ebola Parody Reminds Me of Living With Chronic Illness

October 7, 2014

From the moment she said “I have Ebola” and he gave her “that look” – the look of “what did I get myself into?” and “I’m not so sure about this all of the sudden…” – I knew that this SNL parody: The Fault In Our Stars 2: The Ebola In Our Everything (video below) really described trying to have a relationship when you have chronic illness.

Read the rest of this entry »


The Hard Parts

October 6, 2014

Kim Vlasnik of the Diabetes Online Community (or #DOC on twitter) gave this riveting speech at Stanford’s MedicineX about the hard parts of living with Type 1 Diabetes.  Word for word, she expressed my fears and frustrations – noting that while we need insulin to survive, we need our community even more.  We need those who can say with deep empathy “Me too.”

I am ever so grateful for her brave talk.

If you’d like to be a part of the ePatient Scholar program at MedX 2015, applications can be found here. Applications are due by November 1, 2014.


“See me. Hear me. Feel me.”

September 22, 2014

My friend Sarah Kucharski – better known as AfternoonNapper in the epatient community – gave this incredible Ignite speech at Stanford’s Medicine X a few weeks ago.

If you’d like to be a part of the ePatient Scholar program at MedX 2015, applications can be found here. Applications are due by November 1, 2014.


I Am Them

September 6, 2014

My friend Carolyn Thomas posted an open letter I wrote on her website Heart Sisters.  As a result, Medicine X asked me to participate in their conference this year and presented my reading a shorter version – video below.

“Dear Medicine X Conference organizers, Read the rest of this entry »


Share Your Story

May 20, 2014

I’ve told a few stories about my medical care as of late, but my voice is one of many.  Scores of patients and their families have experienced medical errors, medication errors, doctor mal/mis-treatment, over treatment, hospital acquired infections and more.  For many of us reparations cannot be made.  But we can make change and try to ensure that patients who come after us receive better care.  To do this, we must share our stories. Read the rest of this entry »


Four HIPAA Violations

April 8, 2014

*Nothing below is meant to be considered as legal advice.

As a lawyer I focus on HIPAA (the Health Insurance Portability and Accountability Act).  I’ve written about HIPAA in cloud based computing for IBM, I’ve trained providers as to how to be compliant, I’ve audited technology companies for compliance, I’ve blogged on Privacy Questions.  Most providers I see do not realize this.  Thus it is somewhat ironic when I encounter a HIPAA violation as a patient.  And recently, I’ve encountered no less than 4 HIPAA violations in the last 4 months. Violations of disclosing hospital records, security of patient portals, text messaging, and marketing.

In short, HIPAA consists in part of the Privacy and Security Rules.  These rules give patients protections as to how their information is used, stored, and disclosed.  These rules were updated last year under the HITECH (Health Information Technology for Economic and Clinical Health) which strengthened these provisions, breach notification laws, and penalties for violation.

Health and Human Services currently lists 931 breaches that have affected 30.6 million people.  But these are mainly before the new HITECH rules came out which are stricter.  Most people hear about HIPAA breaches when a provider has lost an unencrypted computer or flash drive containing patient information.  But violations are not just losing information.  They include the ones I have encountered below. Read the rest of this entry »


Why EMTALA Still Matters But Isn’t Enough

March 17, 2014

Last week I talked about my experience in the hospital that was Not Meant to Be.  Among the many issues was an overarching theme of access to healthcare.  As I said before, only by the grace of the passage of EMTALA (the Emergency Medical Treatment and Labor Act) passed in 1986, was I able to get the care I needed.

EMTALA requires Medicare-participating hospitals that offer emergency services to provide medical screening examination and stabilizing treatment for patients with emergency medical conditions regardless of an individual’s ability to pay.  EMTALA is incredibly important for the uninsured, but it isn’t enough. Read the rest of this entry »


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