The Real Access Issues

Recently, the diabetes online community has been in a bit of an uproar over United Healthcare’s decision to name the Medtronic insulin pump as the preferred pump for all on its plan.  #MyPumpMyChoice and #DiabetesAccessMatters are added to every tweet on the issue as people debate choice in health care, health care costs, and access to healthcare in general (though mostly around tech – i.e. insulin pumps).

For some time now I have been rather frustrated with the larger issues of access, the ones that don’t get talked about as much and don’t have popular hashtags, the ones that aren’t sexy but are often more critical.  And those include basics like access to dental care and eye care and mental health care – (and I know this will piss many off) but what I think are the real access issues.

These days, because I don’t wear a pump, and thus I don’t feel like part of the “cool kids club.”  I feel like no one hears me and my voice doesn’t matter as much in conversations.  I’m experiencing diabetes in a different way – without technology and feel left out of the discussions. The things I want to talk about in access aren’t the issues others want to talk about.

In a world where new technology – insulin pumps, continuous glucose monitors, fitbits and other wearables, etc. – are all it seems like people are talking about, I feel like the real access issues get ignored. Perhaps it’s a matter of privilege and of not recognizing the struggles of others until you are face with them yourself (I myself am quite guilty of this). Perhaps our priorities are just off as a society.  Perhaps we take too much for granted because access to many things has expanded in many ways – just not to all.

Regardless, when I see a tweet about whether or not a certain kind of pump is covered I want to scream out and say – pumps are a privilege, let’s focus on more important things first.

If you go to my “About” page you will see the purpose of this blog, in fact it’s title is about health as a human right.

The Universal Declaration of Human Rights, adopted by the United Nations in 1948, proclaimed that

“Everyone has the right to a standard of living adequate for the health and well-being of oneself and one’s family, including food, clothing, housing, and medical care.”

Health as a Human Right is a concept that encompasses ideals of health care being available, accessible, ethical, culturally sensitive, and high quality.

I am the first to note that I grew up in privilege, ignorant of what this truly meant. Throughout my adult life though, I have come to understand these issues on a deeply personal level.  And the more I am faced with the challenges to access healthcare, the more I see the same struggles for others.  Since I have a platform to write and speak, I thus try to use it with my story as an example.

I now live in poverty in part because of my physical health but mostly because of my mental health illnesses.  There are many like me who struggle and as a result we’ve lost a lot – including for many the dignity of a steady job and accompanying paycheck.  Many like me don’t have housing or their housing is constantly threatened.  Healthy food becomes a luxury when you have to buy nonperishables to last the whole month on the pitiful food stamp allowance (which don’t take into account special dietary needs which can mean life and death for many). Transportation becomes a barrier to accessing services, ever more expensive, even in cities trying to provide more mass transit. And access to medication at all can come with insurmountable barriers meaning many go without and some even die as a result (join the #insulin4all campaign if you want to change this).

Some of these issues are in the public spotlight but many of the issues aren’t.  Including dental care.  And to be honest – dental care not just for the poverty stricken, but for many of those in the middle class.

2012-12-26 18.22.08I was a kid in a wealthy family with far too many privileges in life.  From an early age (maybe 3?) we knew that I had some pretty severe jaw abnormalities.  I started speech therapy when I was young (my lisp wasn’t that cute).  I started intensive orthodontia work at the age of 7 and was in headgear full time at 9 (mostly because I was bribed to keep it on).  I had a second set of braces et al. in high school and jaw surgery where they broke my jaw in 5 different places moved it all around and put in some metal plates at the age of 18.  There was a lot of pain and torture involved in all of this and now that I’m getting a bit older, I’d really like to not have it all wasted when I get the occasional dental issue.

But Medicare doesn’t cover dental care.  As per it’s website:

Medicare doesn’t cover most dental care, dental procedures, or supplies, like cleanings, fillings, tooth extractions, dentures, dental plates, or other dental devices. Medicare Part A (Hospital Insurance) will pay for certain dental services that you get when you’re in a hospital.

And while Medicare won’t cover dental care, the National Institute of Dental and Craniofacial Research reports that:

People with diabetes are at special risk for periodontal (gum) disease, an infection of the gum and bone that hold the teeth in place. Periodontal disease can lead to painful chewing difficulties and even tooth loss. Dry mouth, often a symptom of undetected diabetes, can cause soreness, ulcers, infections, and tooth decay.

And as the American Diabetes Association points out:

By 2012, the average number of missing teeth was 6.6 for those with diabetes, compared with 3.4 for those without.

Similar scary stats exist for other chronic diseases too.  So where am I supposed to go when I have a tooth ache that I think could be an infection knowing that infections and diabetes are a bad combo and having heard horror stories of chronic illness patients needing emergency dental surgery for not addressing an issue early on?  I can’t afford even the “low cost” clinics and the dental school won’t take me because of my type 1 diabetes.  It’s something that never would have crossed my mind when I was well off and it’s not something that crosses most of society’s mind.

Cocaine_for_kidsOver the past centuries, dental care in America has come a long way. Toothbrushes, fluoride in the water, dental education have been phenomenal public health successes such that cavities and other dental issues have faded in to the background for many.  We have initiatives for children like the Early and Periodic Screening, Diagnostic and Treatment for dental care, vision and hearing screenings.  But we don’t have really anything in place for adults.

Theoretically, I like the idea of getting insulin pumps, CGMs, and other tech covered (for many they improve blood sugar control which can stave off dental issues). But I’d really really like to see basic healthcare needs met first and I do believe dental care is one of those basic needs.

Another reason to cover dental care – these are missed opportunities for education efforts.  While I don’t really love the scare tactic lectures we often are subjected to, a visit to the dentist to address an aching tooth could be be the only point of contact someone makes for diabetes care.  I now go to the Colorado Coalition for the Homeless’s Dental Clinic, and I asked the hygienists there, who once worked in private practice, what they liked about doing that job.  And she said she liked the opportunity to educate patients.

I’ve been to that clinic a few times now.  They are an incredible resource that this city is beyond fortunate to have filled with some of the nicest providers I’ve ever known.  I am lucky to have that option that too many don’t.  I feel comforted to know that I won’t lose my teeth or face death from infection (not an exaggeration).  I think no one should have to have that worry in an age where we know that needn’t happen.

I look forward to the day when #DiabetesAccessMatters includes more than just access to pumps (or even test strips of medicine) but includes access to other fundamentals of healthcare and issues that affect many who may not have the ability to speak up about them. I look forward to when more in the DOC see the bigger picture like Scott Strumello who ended his recent post on the UHC debacle by saying:

I’m not interested in a campaign that’s about pumps exclusively.  We need to address the issues that also include insulin brands, strips and medical care more generally.  This is a broader effort, but one that needs to be addressed.  Don’t ask for my help in something more narrowly focused.

More advocacy like this would give me something to smile about.


Update 5/13/2017: The Washington Post published an article titled The Painful Truth About Teeth.  The author writes:

As the distance between rich and poor grows in the United States, few consequences are so overlooked as the humiliating divide in dental care. High-end cosmetic dentistry is soaring, and better-off Americans spend well over $1 billion each year just to make their teeth a few shades whiter.

Millions of others rely on charity clinics and hospital emergency rooms to treat painful and neglected teeth. Unable to afford expensive root canals and crowns, many simply have them pulled. Nearly 1 in 5 Americans older than 65 do not have a single real tooth left.



3 Responses to The Real Access Issues

  1. Andi McCollam says:

    Thank you for this post and everything that you write. Your incisive understanding of the health care system and clear descriptions of its shortcomings are amazing.

  2. For some comic relief on this issue, go watch The Unbreakable Kimmy Schmidt Season 2, Episode 6 on Netflix. In fact, for comic relief in general, go watch all of seasons 1 and 2 of Kimmy Schmidt!

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