Why does diabetes care cost so much?

Hey Dad,

It was good to get your feedback about the Affordable Care Act summary I wrote. I agree that it's still confusing, even with it broken down the way I have it.  I promise I will return to it and make it simpler as it becomes clearer to me.  I'm afraid, though, that it will never be simple enough because of the politics around making that legislation happen in the first place.  The bottom line for you will be that it means no change because you already have health insurance through your union that I'm positive covers the minimum that the ACA covers and you are not an hourly employee.  You might get even more preventive services with no co-pay because of the new regulations.


We talk a lot about why health care is so expensive and I'm sure we're not getting bored with it because it's very complicated.  I was pretty excited when I came across John Green's explanation of the system.  I think he's able to talk about it clearly in part because he's not a health care researcher.  Also, he's way funnier than I am when I talk about it.

So in the US, we spend about $245 billion per year just on diabetes care.  This is a lot, but it's especially a lot when we consider that in 2007 it was only $174 billion.  In contrast, in the UK diabetes care costs about £14 billion (about $22,400 billion USD), Canada spends about $12 billion CDN (about $11.6 billion USD), and Australia spends about $10.3 billion AUD (about 21.5 billion USD).  None of this should be surprising after hearing Green talk about the overall massive differences in health care spending.

The UK, Canada, and Australia all have some form of universal health care, which means that basic health care is funded through taxes and administered through a centralized system. Countries differ about how much people pay for medications and supplies, but since those costs are much lower to begin with, the out of pocket costs for people with diabetes is lower than in the US.  It is hard to pin down figures because the systems all report things differently, but considering that in the US individuals with diabetes incur about $7,900 worth of expenses directly related to the disease and that health care coverage is so varied, it is safe to say that it's a lot more expensive to live healthfully with diabetes in the US than other leading industrialized nations.


All of the issues that Green brings up are absolutely part of the problem of the expensiveness of diabetes care in the US.  Getting back to the question I raised last time about the effects that the ACA will have on out-of-pocket diabetes costs, I still don't think it will make any difference for people who have already been insured mostly because even with increasing access to health insurance, since the payors (private insurance companies and Medicare/Medicaid) are not centralized, folks who do not qualify for government benefits will not benefit from the economy of scale (negotiation of prices for massive contracts) that Green was talking about.  We will also continue to have huge inefficiencies in the system and high administrative costs because there are differences in billing, coverage, reimbursement, etc., so I don't think the ACA is going to do anything to reduce the cost of health care in the bigger picture, because it is not in the interest of the health care industry to cut its profits.

I'm glad that the out-of-pocket costs are manageable for you and that you have a union that has advocated for you and your coworkers.  Not all union members are in as good a position, though, since there are some unintended consequences that might hurt them.  As much as I hate to say this, I am grateful that your coverage is already through a for-profit insurance company.

Love,

Mel

What does the Affordable Care Act mean for diabetes care?

The next phase of the Patient Protection and Affordable Care Act (ACA, "Obamacare") will go into effect starting October 1, 2013, when the Health Insurance Marketplace goes live.  From what I gather, it will be kind of like shopping online for car insurance, but for health coverage.  I was hoping to be able to write something specific about what the coverage means for people with diabetes, but those details are not available yet.  I think that will depend entirely on which coverage you or your employer buys.

Given that the open enrollment period begins in just a few weeks, I'm a bit dismayed by the lack of concrete information.  A lot of people who are currently uninsured receive discounts or free medications through Patient Assistance Programs and they have access to free or low cost health clinics that are designated for the uninsured.  But what sort of affordable coverage will be there for these folks who have historically been uninsured or under-insured?  Will the out of pocket costs of diabetes medications be even higher for folks who might no longer qualify for Patient Assistance Programs?

The ACA is so complicated that I even though I read policy jargon all the time, I had to re-read even the summaries several times to get the main points, especially around penalties and fees. Here's what I have figured out so far:

Download the PDF at https://dl.dropboxusercontent.com/u/6989183/PPACADownload.pdf

What it means for you:

• You have to purchase health insurance, either through your employer or the Health Insurance Marketplace.  You cannot be denied new coverage due to pre-existing conditions.

• If you don't purchase insurance, then you will receive a 2014 tax penalty of the greater $95 for an individual/$285 for a family or 1% of the household income.  This will increase to $325/975 or 2% for 2015 and $695/$2,085 or 2.5% in 2016.  Beyond 2016, it will adjust for inflation.

• You are exempt from penalties if you earn too little to file a federal tax return (below $9,530 for singles and $18,700 for couples) or the lowest price plan exceeds 8% of your income.

• If you do not like or cannot afford the insurance plan your employer offers, you can purchase insurance through the marketplace instead.

• If you earn 133-400% of the Federal Poverty Line (FPL), then you will qualify for government subsidies for premiums and cost-sharing for plans purchased through the marketplace.  The 2013 FPL (in the contiguous 48 states and Washington DC) for an individual is $11,490 and it is $23,550 for a family of four.

• You may qualify for Medicaid even if you didn't before (for example, if you are a single, child-free adult living near the FPL) if it is expanded in your state.  If your state does not expand Medicaid, there might be a state Basic Health Plan for you if you earn 133-200% of the FPL.  If you receive Medicaid or participate in a state Basic Health Plan, then you would not receive the subsidy.

• If your insurance company mis-spends your premiums on stuff other than health care services, you will receive a refund.

Since I wasn't getting anywhere with specific policy coverage, I then tried to figure out what is included in the minimum essential benefits that qualifying health care coverage is supposed to deliver.  All I have found are discussions that center around how frustratingly obtuse the legislation is and ways that employers might exploit loopholes by offering inadequate coverage and not reporting their compliance activities.  Even descriptions of the Basic Health Plans that states could offer in lieu of expanding Medicaid do not give any meaningful details.  

The U.S. Supreme Court ruled that the individual mandate to buy health insurance is constitutional, so in order to reduce the burden on low income individuals, Medicaid has been expanded.  However, since Medicaid is administered by the states, it is up to them to decide whether to expand that coverage.  This means that states that do not expand Medicaid eligibility per the federal guidelines will also not receive the additional federal monies, leaving many low income, working people uninsured due to their inability to afford insurance coverage through the health insurance exchanges.  They would be exempt from tax penalties for being uninsured, but they also would disproportionately bear the risk of devastating medical expenses in the event of serious illness or injury and they would not benefit from the discounted negotiated rates for services and prescription drugs that members of group plans enjoy.

So what does all of this mean for people with diabetes?

My informed, though unscientific, guess is that more people will have insurance and so they will use preventive health care services.  There should also be higher numbers of office visits which will hopefully reduce emergency room visits.  The ACA could be great for people who have had earnings above the thresholds for Patient Assistance Programs and government programs, but who could not get insurance due to lack of employer sponsored coverage or the pre-existing conditions clauses.  Of course all of this assumes that there are enough physicians who are taking new patients and who will accept the new insurance plans for payment to handle the increased numbers of patients.

Another issue is that there are some ways that practitioners are limited in what they can do if they are billing for it.  For example, in some free clinics for the uninsured, diabetes education and nutritional counseling are unlimited.  In clinics where patients are insured, the availability of those services depends on how much the insurance will cover.  I suspect that instead of expanding these critically necessary services for diabetes care, it will impose tighter limits across the board (for example, many insurance companies will cover three group diabetes education classes the first year of diagnosis).  The best we can hope for is that educational, nutritional and behavioral services for people with diabetes will included as unlimited preventive health care services under the basic health plans.

It is also hard to say what will happen to the affordability of medications and testing supplies.  I suspect that on the whole there will be greater access to a broader range of drugs for middle-income folks, but that the out of pocket costs will still severely limit what is accessible for individuals and families that are struggling to make ends meet.  There are some ways in which having too little prescription drug coverage is worse than having none at all when pharmaceutical companies are willing to subsidize or provide drugs free of charge for the uninsured.

I am cautiously hopeful that this health insurance reform can increase health and well-being in our society. I am also very skeptical and wishing we could have real health care reform.

Talking about/to fat people.

Hey Dad,

I don't mean to keep coming back to issues around obesity since I am focused on diabetes, but there's no way around it.  No matter where I look in my research I am no more than one step away from obesity--as a cause of diabetes, barrier to effective diabetes treatment, or a moral failure of the patient.

A couple of posts ago, I wrote about the problem with "diabesity," and I got a few high-fives for it. The thing people who are heavy talk about most with me is their frustration that doctors think that because they're heavy they are necessarily sick and that their weight will absolutely lead to diabetes and other conditions later on.  I know many healthy people who carry a lot of weight; they are still fully functional in terms of their ability to move and work.  Even into their 40s, they don't have issues with blood pressure, cholesterol or diabetes.  Some people are just bigger than others.  There are a lot of activists working to change the way the general public and the medical field see fat people because it just isn't so simple.

Since I spend so much time looking at the scientific research on obesity, I can see where doctors and other practitioners get the idea that having significant extra weight makes people sick (a lot of the time it actually does), but like so many other things that are driven by supposedly objective science, it is only part of the story.  I don't know how many times I have experienced unwanted discussion of my weight (since, despite a few decades of effort, I'm still a little fat) at a medical appointment when I was there for a sinus infection.  My experience is not unique.  I regularly hear from people how much that specific conversation keeps them from making an appointment even when they know that they need to go to the doctor.

The thing is, doctors are not the enemy; they are trained to behave with less compassion and it is only recently that any real attention has been paid to bedside manner around obesity.  In fact, the topic of obesity has been controversial for the American Medical Association, the main authority over the practice of medicine in the U.S. The shift in thinking about obesity as a disease means that now doctors have an obligation to bring it up in medical visits with patients, something they are woefully unskilled at as a whole.

I've been dreading what this means for people who already don't want to go to the doctor because they don't want to be lectured about their weight and was delighted to hear a talk at the American Association of Diabetes Educators (AADE) conference a few weeks ago that gave me hope that doctors can do so much better.  Dr. Arya Sharma of the Canadian Obesity Network presented a set of tools that they have put together to help physicians have productive, respectful conversations about obesity:  The 5 As of Obesity Management. In this model, they start with asking the patient's permission to have the conversation and then proceed to assess the degree to which obesity is actually causing illness or disability, moving far beyond the BMI measure that most practitioners use, the Edmonton Obesity Staging System.  In this video, Dr. Sharma talks about the stuff that got me most excited at the conference.

So all of that is to say I'm excited that there are researchers and clinicians trying to make it easier for us to get medical and other professional help for losing weight when we need it.  I'm also hopeful that doctors and their staff will become more compassionate and will have better tools for having these sorts of difficult conversations in respectful ways.

After all, if we don't feel respected by our doctors, there's no way we're going to listen to them--even when they might have something relevant to say.

Love,

Mel

Diabetes and your right to work.

Hey Dad,

A few weeks ago, I had lunch with a friend who has type 2 diabetes and has been having a rough time at work.  She's not had much luck with oral meds, so she's been trying different types of non-insulin injectables over the past few years.  The latest one has been a really rough adjustment and has caused her to take time off of work--eating all of her paid time off very early in the year--and to have incredibly personal conversations with HR about what her needs are regarding going to the bathroom (GI problems are common in people with diabetes and some medications intensify them) and testing.  For a lot of folks, going to the bathroom however often they need to isn't a problem, but she works in a call center, so they pay attention to the time she is available for calls.  In my friend's case, the accommodation has been extra bathroom time and she's had to rely on FMLA leave due to extreme side effects, but it's much more involved for people with complications.  She's lucky to have health insurance and a clean place to test and do her injections, but she is still stressed about the effects of controlling her diabetes at work.  It took her a while to get this job and even if she doesn't enjoy it, she needs it.

I can't imagine how difficult GI side effects from diabetes meds must be for people who don't work in an office, who are on the road and need to stop off frequently, or who work on a job site that doesn't have plumbing.  I don't know about you, but one of the last things I want to discuss with my employer is my bathroom needs.  Frankly, I don't want to discuss my health problems at all where I work.

This got me to wondering what kinds of accommodations employers are required to provide for people who have diabetes.  Here's what I found.

Diabetes is a diagnosis that is included in the Americans with Disabilities Act, so employers cannot legally discriminate against persons with diabetes.  It wasn't initially included in the act, presumably because not all persons with diabetes are disabled by the disease, but that changed in 2008 due in to the increasing prevalence of diabetes in working-age people and the efforts of organizations like the American Diabetes Association.  In fact, they have a thorough section on their website devoted to the topic of employment discrimination and they put out a report that addresses a lot of employers' concerns about the safety issues around having employees with diabetes.  It is such a big deal that there is even a government sponsored website all about diabetes in the workplace, primarily geared toward employers and occupational health professionals.

These are all great for knowing what your legal rights are, but what does it actually mean for working people?

The thing is, these legal rights don't apply if the employer doesn't know a person has diabetes--and there are all kinds of reasons that people don't want anybody, much less an employer, to know that they have it, especially stigma.  I know we've talked about how much your employer knows about your health problems and you've brought up some very real concerns about whether management would use it as an excuse to withhold the best earning opportunities from you or if they would assume you are unsafe on the job even if your diabetes is well-controlled.  Your fear is reasonable because that sort of thing happens a lot.

Last night I was hanging out with a bunch of diabetes educators as part of the AADE conference and had the chance to ask them if they've had patients talk about problems getting accommodations at work.  All eight that I asked said yes and that it was a big problem for their patients.  Most of what they see is that even with the change in the law, patients who need their jobs the most, like you, regularly have to make choices between taking care of themselves and keeping their jobs.  It sounds like it's extra hard on 3rd shift workers because their schedule is all goofed up to begin with.  I was talking with four educators from Connecticut and they went on at length about the problems their patients who work at Walmart face, in particular.

"Walmart is the worst.  Unless they work a full 8 hour shift, they don't get lunch, just a 10 minute break.  Our patients need to eat more often than that and there's just no time for them to eat once they get off the floor.  It's the worst for gestational patients."

So what can you and other working folks do about it?

First, do your best to avoid needing insulin.  Eventually, it is quite likely that you will still need insulin despite your best efforts, but there is a lot you can do to avoid or slow down the need for it. Keep eating well, testing your blood sugars, and taking meds when diet and exercise are not enough. The key is controlling the disease so that you can slow down its progression.

Second, it sounds like the bottom line is you can't be protected by the laws if you do not disclose.  If you need an accommodation or you go on insulin, you have to disclose it.  The laws that would legally allow an employer to prevent you from doing a particular job, as it is related to diabetes, pertain only to folks who take insulin.  In that case, the employer has to demonstrate that episodes of hypoglycemia would be dangerous.  Kris Halpern, "the diabetes attorney", notes that even if you disclose to your employers, you still need to let a co-worker know what happens if you have a low because management's policies aren't necessarily carried out by the people who would be your direct supervisors (see the comments at the end of this very useful article).  You will have to be prepared to educate the people you work with about your disease because there's a very good chance they won't know about it or they will have misinformation.

Third, do everything that you can in writing because if you ever need to go to court you will need documentation of what happened.  Because you're a union member, make sure your shop steward knows what's going on.  The union has been good about protecting your job when you've needed time off for kidney surgeries and I imagine they will continue to fight for you if the time comes that you need to go on insulin.  You might want to consider getting involved in leadership to help ensure that this will be the case.

I hope that getting this information helps you feel better about letting people you work with know what's going on with you.  It's hard to keep secrets from people, especially when they are such a big part of your everyday life.  There may still be some grief from it, but you are within your rights to expect reasonable accommodations and they cannot legally fire you for having diabetes.

http://www.rv.net/forum/Index.cfm/fuseaction/thread/tid/26353957/

Most of all, dad, you need to worry about taking care of yourself so you can enjoy your eventual retirement.

Love,

Mel

The problem with "diabesity."

Hey Dad,

Things continue to be busy with working on my dissertation, but the good news is I'm learning things that I can pass along.

Even health care providers and researchers
don't take the stairs.

A few weeks ago, I was at the American Diabetes Association scientific meetings in Chicago. This is the big annual event where researchers, industry, doctors and other clinicians all get together to learn about and discuss the latest and greatest in diabetes care, prevention, and treatment research--and you'd be amazed at the breadth of the stuff they're doing.

Something I heard a lot when I first started doing diabetes research was "diabesity."  The way that people said it just bothered me because it seemed like they were dismissing the seriousness of diabetes because a person was also obese and they were clearly less sympathetic, calling it a "lifestyle disease."  So I looked into it and found that the way most folks are using it comes from Francine R. Kaufman's book, which you can take a peek at here.  Originally, though, “diabesity” was a diagnostic category for type 2 diabetes that was directly caused by obesity in laboratory studies of animals (see this and this if you're curious).  The way it is used now is much more generic, a shorthand for talking about fat people who have diabetes or prediabetes--and it doesn't matter which came first.


The more I learn about diabetes and the more scientists I get to hear talk about this issue, the more I'm convinced that there's some underlying metabolic disorder that causes both diabetes and obesity independently of each other.  This explains why weight loss helps both issues, but is not enough to cure either.  The problem with "diabesity" is that there's a lot of cultural stigma in our society around obesity and to lump the problems together into a single word oversimplifies the causes of diabetes.  We tend to blame fat people for all of their health problems and they are treated poorly as a result.

Blaming obesity for type 2 diabetes hides the fact that it is possible for diabetes to be a cause of obesity (not the other way around) and that weight loss alone does not actually cure diabetes. If the issue were as simple as balancing energy consumed with the energy expended (“don’t eat more than you’ll burn off with activity”), then reducing carbohydrates would cure both diabetes and obesity.

In a recent TED Talk, Dr. Peter Attia did an excellent job of laying this out and describing how his belief that type 2 diabetes was the patient's fault affected the care he gave a patient and how his own experience with metabolic syndrome changed the way he sees diabetes.  Please watch this.

I wish every doctor who ever wrote off my bigger health problems because I was fat could have this awakening so that they would know how they hurt people and they wouldn't keep doing it.

Many people with diabetes are able to live with high blood sugars for their entire lives without complications and no matter what medications and lifestyle changes are made, they never achieve an A1C below 7.5.  There are others who have known genetic mutations within their families that create a condition that looks a lot like type 1 diabetes, but doesn't respond to conventional treatments.  There aren't any conclusions just yet and there aren't any changes being made to the way that diabetes care happens (like new tests and treatment plans), but I was glad to know that the research is happening.

Language matters in how we understand the world and how we relate to each other. I hope that as people who do diabetes care learn just how much they don't know, their language will change. Diabesity is inaccurate and it hurts people.  It is great for marketing and media soudbytes, but it is not a human diagnostic category.

So when it comes to weight loss, diet, exercise, and controlling type 2 diabetes, here's the jist of what I learned at ADA:

"We don't really understand the relationships just yet, but we're working on it.  

In the mean time, please eat some salad because it can't hurt."

I'm glad you're doing so great with weight loss and managing your blood sugar, but if that stops working so well, I want you to know you're not the only one.  It's so frustrating that the one behavior that is pushed over and over again for managing diabetes is not always under your control. I'm looking forward to when the scientists figure it out and they come up with new ways to treat it. For now, though, keep eating what you've been eating since it's working for you.  Also, never take that kind of abuse from a health care provider.  Just because you're overweight doesn't give anybody the right to bully you about it, least of all the people you trust with your health care.

Love,

Mel

Sad news and a plea.

Hey Dad,

I am sorry it's taken me a while to write.  The last thing I wrote about was trying to find public diabetes education and information events.  I did attend the Chicago ADA Diabetes Expo and collected some samples for you and got to talk to folks who do different community-based work, but I've not felt much like writing about it.  You see, just a few hours after I got home from that event, my family got the call that another one of our dads was dying and that we needed to get down to Missouri immediately.  So we packed up the car and arrived in time to sit vigil with even more family for L's last hours.  We were only home for a few days before heading back down for the memorial mass.  It's been a long couple of weeks and I'm just now trying to get back to work.

L was diagnosed with type 2 diabetes over 30 years ago and had managed the disease, when he managed it, pretty well with diet and oral medications.  He wasn't a model patient--we toasted him with bourbon, after all--but he did pretty well considering the lack of resources that were available when he was diagnosed.  In fact, it wasn't until the last year that he needed insulin, which only started after he went on dialysis for kidney failure.  L had been investigating transplant options for a kidney when he developed other complications with his gall bladder.  When his recovery from gall bladder surgery became severely complicated by the dialysis, they discovered he had liver cancer.  There was less than a month between diagnosis and his passing, nowhere near enough time to process the reality of the situation before it was time to say goodbye.  L was only 67 and he will be missed dearly.  

You would have liked L and I am so sad that you never had the chance to meet.  He had a generosity of spirit and acceptance that put the people he welcomed into his life at ease and he laughed loudly and easily.  I smiled when I heard his laugh from 3 rooms away the same way I do when I hear you laugh like that.  He reminded me of you.

So, Dad, I am so grateful that you've been doing well with keeping your blood sugar in check.  Please do what you can to spare us from suffering this kind of loss again, even if it means going in for regular checkups when you feel just fine.  Just do it, please.

Meanwhile, I'm gonna do what I can to help improve access to meaningful help for people with diabetes.

I love you.

-Mel

In search of diabetes events.

One of the things I do for my research is I attend conferences and educational programs about diabetes care.  Those meetings are targeted for health care professionals, industry, and researchers and cost quite a bit of money to attend--especially if you are not a member of a big professional organization like the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE).  These folks are really excited to travel to spend several days with people who do the type of work that they do so they can geek out together share ideas about diabetes care.

No joke, I took this picture at the AADE conference in Indianapolis last year.  I swear it was for an opening plenary session around 8:45 a.m. and not an evening rock concert.  I had not had enough coffee for the blaring conference theme song, but now that I've seen the video I kind of wish there had been a big dance number on that stage.

Normal folks would be lulled to sleep by most of the stuff they talk about in these conferences.

I might have been a lot like that woman in the second row who is slouched so far down the seat that she might startle herself awake when she falls off if I weren't studying the audience as much as the stuff they were talking about.

Even so, I have learned a lot about the state of diabetes treatment, new technologies, and information that diabetes educators are using to help their patients bring down their A1Cs and keep them there.

You should have access to this information, too.  The industry assumes that patients will get information from their health care providers and diabetes educators, but if you can't make, keep or afford those appointments, it cuts you off from really important information that coud make a big difference in how you live with diabetes.

So what sorts of educational events do the big diabetes organizations put on for the general public?

So far, the only widely publicized event I have found from the major organizations is the ADA's Diabetes Expo where they do health screenings, activities, cooking demos, product samples, etc.  They even have family activities programming so that folks who wouldn't be able to attend due to child care issues can bring their kids along.  They have these events in various cities throughout the year and I will be attending it in Chicago this Saturday (4/13).

A smaller not-for-profit organization, Taking Control of Your Diabetes also has one-day events in several cities.  These aren't free, but they are pretty inexpensive if you don't have to travel to get to them.  I hope to attend one of these conferences because it looks like their approach is much more tailored to the needs of the attendees by having two different tracks for people with type 1 vs. type 2 diabetes since their experiences are different.

I keep searching for big community health events around diabetes and it leads me back to the ADA and the National Diabetes Education Program at the NIH that offers free resources for community organizations to do diabetes education events in their communities.  So I think this means that if you're looking for a chance to talk about diabetes or to be screened for it free of charge, your best bet is to look for local clinics and health centers to see if they have any upcoming events.  You might also find that your local park district or department of public health has events.

I would suggest doing a Google search on:  diabetes event <city> <year> (fill in the city and year; if there's nothing for your city, try a nearby city, county, or state).  Doing that search for Chicago 2013, I was able to find listings for a few other events that are happening in the area, including Living Well with Diabetes at the University of Chicago Medicine Kovler Diabetes Center.

Also, event organizers often leave fliers at coffee shops, cafes, grocery stores and other public bulletin boards.  If you're looking for an event, just take a moment to read the signs that you see posted. If you can't make it to the event that's advertised or if you just missed it, you might be able to call or email the organizers to find out about other opportunities that will be in your area.

What do you find when you search for diabetes events in your area?