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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Diabulimia Primer

March 3, 2017

This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.”  This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes.  I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.

I first developed it because no provider I knew understood the disorder.  So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight.  That only made things worse.

In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops.  The document cites research because I know doctors won’t accept my word for it.  And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.

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Proving Myself

February 14, 2017

Every time I meet a new provider, and sometimes throughout my course of care with them, I feel like I have to prove myself.  I have to prove that I know a lot about my diagnoses.  I have to prove that I am actually experiencing the pain or symptom I am there to speak to them about.  I have to prove that I know my rights as a patient.

It’s almost as if I were on trial.

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Not simply saying yes

January 3, 2017

At the same time I wrote the email in my previous post about directions in advocacy, I was asked by a company to write a post for their blog – a new initiative to help elevate patient stories.  While I was deeply flattered by the words of the person who reached out to me, I was troubled by the idea of simply saying yes.  In part because I think that patient advocates have gone too long doing many things for free and in part because of issues of independence and conflicts of interest.

I wrote back to the company and started a conversation with them about what it means when they ask someone to write for their blog.  I thought I’d share my email response here as again I think it speaks to issues many patient advocates face and one that needs to be addressed as the patient movement continues to mature.  There needs to be an industry standard for how to ask patients to contribute and what patients get in return for their involvement.  I think we need to be bluntly honest with those who ask us to contribute our stories and not agree to contributing simply because we are asked.

Here’s what I wrote:

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Assessing our advocacy efforts

January 3, 2017

Just before the holidays I entered into a few discussions about the directions patient advocacy is taking as what used to be a fledgling movement of sorts is now coming into more maturity.  As the new year starts, I think we need to start to assess where we are as advocates as a whole and what we are trying to accomplish.

To that end, I wrote the following email to some well known diabetes advocates who I think have a large voice to talk about issues of transparency, conflicts of interest, and which voices are being heard and represented.  I think these issues go well beyond the diabetes online community (#DOC) and span to all disease communities.  I hope that by writing to those who are seen as leaders in the #DOC and also posting it here we can start the conversations about how to be better advocates.

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