The Evolution of a Blog

June 7, 2017

I published my first post on March 24, 2011.  I wrote about Patient Centered Medical Homes and I thought I would write a professional blog about health as a human right – about law and policy and human rights.  I thought there would be some focus to it, but I quickly realized there couldn’t be.  That’s not who I am.

For those who read my blog, I ask one thing implicitly:

See the bigger picture. 

I haven’t stated that outright but as I’ve wound my way through various topics, becoming ever more personal, I hope that some might see that there is a bigger picture in all of it.  That it does all connect at some level.  There is an underlying theme, even if hard to see at times – one that is at its core, a reiteration that health is a human right.

It makes me laugh knowing that my most read post is The Cruelty of Restraints.  And my second most read post is Don’t Eat Armadillos.  Fewer topics could seem farther apart in the realm of health, health policy, health law, human rights, advocacy, etc.  But they both exist on this blog.

Over the years my posts have become ever more personal and they likely will continue to.  I do hope to address some of the wider issues as I started and as are peppered throughout.  But I’m no longer afraid to write my reality.  It’s not pretty or professional.  It may not be meaningful to many.  It may just be more noise on the vast internet.  It may just be my tiny voice and one day I’ll look back and be mortified at the musings of my younger self.   For now though I will continue to write in the hope that the words might connect with someone somewhere – however naïve that idea might be.

This blog has evolved and will continue to.  I cannot set boundaries on what it is or what it should be.  I hope you will accept it wherever it goes.


The Insulin Crisis in America

May 16, 2017

Diabetes Blog Week continues with the topic for Tuesday being The Cost of a Chronic Illness:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

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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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