Net Neutrality and Healthcare

April 6, 2017

It seems to me that no one in the healthcare world and particular patient advocacy is paying attention to net neutrality. Perhaps this is because net neutrality is a newer concept and potentially confuses many. But, the future of net neutrality will have a significant impact on healthcare, particularly as we focus on digitalizing the industry – from apps to manage our health to medical records to simply being able to search for information on our conditions. Much like many were not paying attention to the implications of the recently signed into law provisions that allow our internet service providers to sell our data until it was passed, this is something we cannot let slip under the radar.

So here’s a brief primer on net neutrality basics, why it matters in healthcare, and actions currently being taken to end net neutrality.

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The Problem with Medicare QMB Administration

March 29, 2017

I find it ironic that before I became disabled, one of my last jobs was teaching social workers and doing outreach to the public about Medicare Savings Programs (MSPs) and now I rely on them.  If the government hadn’t funded a grant for me to do this outreach, I might never have known this program exists.  Problem is, most doctors, hospitals, politicians, and even the Medicaid offices that administer them don’t understand them at all which limits my access to care at times.  Not to mention, most don’t know that their low-income Medicare patients could qualify for them.

The Medicare Savings Programs are a great resource for those who are poor and need medical assistance.  The problem is, they shouldn’t be administered by the states through the state eligibility offices with Medicaid.  This current set up confuses providers, creates huge burdens on patients, and adds stress to an already broken system with subpar tools and resources.  But because it is administered along with Medicaid, as if it’s Medicaid, I’m subjected to this system, one that already already makes me feel like a burden, one that takes away my dignity as I try to simply get by.  And unfortunately, it’s never going to get better.

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Narrative

March 19, 2017

This week, the current president released his budget plan which included deep cuts in many of the programs that make our country great and that keep people alive.  Programs from meals on wheels to the Environmental Protection Agency to the National Institutes for Health among many others are threatened under this budget proposal in a way and to an extent they haven’t been before.  In some ways this move is not surprising to me as it continues a deep narrative about a person’s value and worth, particularly when they have very little – or rather a person’s lack of worth.  A narrative that blames and shames individuals based on stigmatizing assumptions about who people are – particularly the assumption that when someone has little, when they are poor it is a character flaw, they are merely lazy or uneducated.

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Who Is Included?

December 5, 2016

I can’t count the number of times the topic of who is and should be included in policy discussions and conferences comes up.  Just this week I encountered two examples where patients though ostensibly “included” were not included really at all.  Considering how long this has been an issue and how often it is discussed in patient communities, I am still disappointed that the discussion continues and inclusivity has not really expanded to mean all patients included.

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To Be Critical

September 30, 2016

To be critical is often seen as a negative attribute in our society.

Unless, you are being a critical thinker or giving a critical analysis in academia.  Then the being critical may be praised.

When we use critical to describe something other than a person however, when something is critical we know that it is of utmost importance – whether it be a critical idea that one hopes to get across or a sign of impending disaster.  Critical then marks a kind of apex – a point from which much could change going forward.

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Is this how you will teach our future doctors?

June 6, 2016

Dear Doctors,

I am rather disappointed to receive your letter requesting that I select another physician dated June 3, 2016. (see below)

I sent a letter to all of my providers, carefully choosing my words so as not to offend and to encourage my providers to work with me and with each other to provide better care. Unfortunately that letter was met with defensiveness. Providers bucked at the idea that a patient could be so empowered and engaged as to write a letter questioning the system, find a way to communicate with her providers in an unconventional and yet legally approved manner (i.e. via email), and request boldly to move forward in care.

I stood firmly as administration and other providers seemed condescending, yet I was willing to move forward. I was frank when your and other offices refused to comply with the provisions of the Health Information Privacy and Accountability Act. And in return, you have dismissed me.

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To All My Providers

May 13, 2016

Recently I have written a lot of long missives to separate providers and the administration of the health center where they practice regarding everything from emails to insurance coverage to health issues to theories of patient engagement and care. For weeks I’ve been debating whether to simultaneously email my entire care team and tonight felt that I was ready to do so.

This is a message to all my providers:

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