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Guest Post: You Can Do Whatever You Want, So Long as You Have Health Insurance.

Healthcare, and the debate about its "reform," is a topic I think about a lot, especially as a patient with a chronic illness.  Today, guest writer Sara Willi has offered to share her thoughts on this important debate, painting a personal picture of life with diabetes and the impact it has on her finances ... and her health.

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I contacted Kerri last month about the Supreme Court decision to uphold the Patient Protection and Affordable Care Act (aka Obamacare) and she graciously agreed to read some of my thoughts on it. I think it’s one of the most important issues facing this country right now (I’m biased, you’ll see why below) and feel it is important to consider this fall as you head to the polls. While I am not a health care policy/insurance expert, I am an expert on living and dealing with a chronic disease in the U.S. with the current health care system.
 
I was diagnosed with type 1 diabetes at age 10. After that point as I was growing up my parents always said I could be whatever I wanted, as long as I had health insurance. Looking back, I realize they never limited me by my gender – my mother has risen through the ranks in a typically male-dominated career - or by my disease – I had a pretty regular childhood minus the shots and sugar-free candy. In my adult life, you wouldn’t know I’m diabetic until you see the insulin pump tubing trailing from my pocket. I have run half marathons, I have traveled to (and lived in) foreign countries and I even had an unplanned pregnancy which, while totally inadvisable considering my high A1C, resulted in a perfect child (that's a whole other story). I’m very lucky that at this point, nearly 23 years of diabetes hasn't shown itself yet in my eyes, kidneys, heart, or feet.
 
What has limited my life, and now my family’s, is the need to have health insurance. I did need to find a job with insurance after college and did so in Washington, D.C. Then I got married, became pregnant and my husband was tasked with ensuring he provided our health insurance so I could quit my job to be with our son. During our time in D.C. our monthly premiums through his work were more expensive than the rent for our two-bedroom apartment on Capitol Hill. I eventually went back to work, this time taking my son with me as I managed a play room putting in 40+ hours a week to cover our insurance costs. After that became too stressful and I didn’t even have time for doctor’s appointments to use the expensive insurance we had, we decided to move back to the small town that I was from. My husband could keep his job and work from home and I wouldn't have to work, but as we were now paying even more for PPO insurance so I could see doctors in our new town, we moved in with my parents.
 
This year we will pay more than $26,000 in direct health care costs (paid almost entirely for me as my husband and son require only a check-up here and there). Our health insurance premiums are taken out every two weeks pre-tax at $950 for 26 weeks equaling $24,700 this year. I pay $35/month for insulin equaling $420 this year. My out-of-pocket expenses are $1,500 for me individually this year before our PPO insurance kicks in to pay the rest (with my new insulin pump this year and monthly doctors visits, I’m already there). The total is $26,620. I try desperately not to think of what we’d do with that extra money (house, car, college savings), but unfortunately we have no choice.
 
We spent a little time looking into alternatives if we were to go out on our own by getting insurance through a health insurance website. The monthly premiums were still high and the plan that would’ve worked best for us didn’t cover maternity expenses for the first 18 months. We couldn’t take that chance knowing the cost of my 2007 c-section alone would have been $35,000 without insurance. I looked at the Health Insurance Risk Sharing Plan (high risk pool) for my state, but that isn’t a viable option either. I would need to be uninsured for at least 6 months to qualify. This is not a good option for a Type 1 diabetic considering the great cost of prescriptions, labs, doctor’s visits or the random medical emergency (like my 2009 appendectomy that would have cost $22,000 without insurance).
 
As a mother, I constantly worry that my child will develop diabetes, or any other chronic disease. Not that a disease would necessarily limit his life (it hasn't mine), but that he might be limited by the need to have health insurance and it would mean the end to his ability to dream big about his life. I would have to advise him, as my parents did for me, that he can be whoever he wants to be, as long as he has health insurance. Instead, I hope he can make his career decisions based on what he wants to do, not the benefits package. I hope he can live in a country that values the health of all her citizens, no matter how much money they do (or don’t) make. I hope he can live in a world that realizes we are all of us mortal, we will all need health care someday and it shouldn't be a choice to afford medication or to afford life's other basics like food or housing. I hope he can use his hard earned money toward reaching his American dream, instead of spending it on managing a disease.
 
Whatever your opinion on health care reform, I encourage you to take a serious in-depth look at the options the two candidates put forth and take a stand for what you support. Perhaps your situation, unlike mine, has been easy and you don’t think we need health care reform in this country. Perhaps your situation has been similar to or even worse than mine. Either way, chances are if you read Kerri’s blog, you or someone in your life deals with diabetes – a chronic disease that requires constant control at potentially great expense. Who better to inform the decision making process on health care in this country than those who need it most?

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What are your thoughts on this important issue, and how it may map out, come November?

Comments

This is beautifully said. Thank you for sharing this story, that unfortunately many of us can relate to. I really hope that some day diabetes doesn't have to dictate our professional decisions in a political way.

When talking with my T-1 SO about retirement, the only concern he has is "not being able to afford his medical care" That truly is a sad way to view what are supposed to be the best years of our lives together. Thank you for your post.

So many good points. We also stressed to our daughter the need for health insurance. During the recession in the 90's, we almost had to make the choice between our health insurance or house/morgage. Of course Briley and her health was our priority. I am very thankful that she now has employers who understand the importance of health insurance, and she lives in a state (Mass) that it must be supplied.
We did without a lot during our lean years. We were lucky that we could adjust our lifestyle and budget to ensure that she always had health insurance.
Thank you for detailing so well the economics of diabetes care and insurance.

While I believe that health care reform is needed in order for everyone to be insured, I also think that there needs to be regulation on how much Pharma companies can charge for the things we need. They try to say it's all operating costs and cost to make the supplies, but then it sickens me when I see Pharma reps and executives that drive the latest and greatest vehicles and live in posh homes in the high-end of town. Yes, reform needs to come, but not just to health insurance alone.

I hope this conversation doesn't go off the rails, because it is an important one.

The US is the only major industrialized country that doesn't have care that covers all citizens. In some cases, like the UK, it's government provided. In others, like Switzerland, care is provided through a system of private insurers, but everyone is mandated to have insurance.

We can do amazing things in this country if we set the priority to do so. Heck, we just landed a robot the size of a Mini Cooper on MARS. We can figure this out, but only if those who currently are making the most money off of the system set aside their own interests to work toward a common goal that benefits all of society. We can do this, but only if we work together.

I started to tear up when you wrote, "my parents always said I could be whatever I wanted, as long as I had health insurance."

I was recently at a dinner party and someone I have been friends with since childhood suddenly sat up and said, "Katie, what would you do if you didn't have health insurance?" And I said, "it's just simply not an option." It's like a lightbulb went off and he suddenly saw diabetes in a while new light.

I was envious of my friends who after college decided to "take some time" and travel or work for non-profits that didn't provide insurance. I on the other hand graduated on a Saturday and started work on a Monday and I've been working ever since.

This is a great post. I work for a small health insurance company and (thankfully) they provide excellent benefits to their employees. But I am in a unique situation within the company as I listen to people within my organization gripe about all the extra administrative costs of implementing PPACA and how it will cost the company more to run the business. I just kind of sit there and say nothing, privately thankful that health care reform should (theoretically) help me afford health care should I become unemployed.

I totally agree with what Sarah (excellent name, btw) at Sugabetic commented when she said they need to reform the whole industry, including the pharma companies. One round of chemotherapy treatment for one individual was $83,000. And this person needed multiple treatments. I couldn't imagine what this person would do if they were diagnosed without insurance. Why is the drug so expensive? It's rediculous. The pharma companies control everything from initial research all the way to sales and are making astronomical profits. It needs to change.

Sara, the sad thing is, you're one of the lucky ones.

I am completely on board with dreaming big and living the life you've always wanted no matter your diagnosis with diabetes. I've had type 1 for 19 years now and it has never stopped me.

The only thing type 1 diabetes HAS done is made me think more responsibly and plan ahead-now, sometimes that's truly a pain in the neck-but overall, that is one of the best things that has ever happened to me. Because I plan ahead, I am healthier than I would be without diabetes, I am financially stable, I have a job and am successful in my field.

I have studied the Affordable Care Act (it's part of my job as a RN, CDE to be well versed in these things) and up front, it sounds like the best thing since disposable syringes! Seriously, it would be more affordable, cover all peoples living with chronic illness (and our illness is definitely one that no one "deserves" and is not a "lifestyle" related illnesses.)

However, I must say that this plan will get uglier as the dates on the calendar flood by. Things may start to be limited for us. For example, this act would allow for specific types of insulin to be covered. Also, certain types of syringes, pen needles, pumps (if those are covered at all), sensors and other supplies that make our lives easier. Now, if we really did a review, we could all live healthy lives on NPH and R-but our entire schedule and current habits would have to change.

These limitations are not something that will happen right away, but there are so many loop holes in the new act that it would be very easy for the government to rationalize and implement these changes.

In all honesty, I think we are up a creek without a paddle no matter what happens: Obamacare may limit our options, Private Health Insurance costs a WHOLE LOT of money and effort. Our system needs reforming; I'm just not sure that Obamacare is the way to go for those of us living with type 1.

If I had to choose for me personally, I would choose to keep what we've got now and pray for another answer to this conundrum.

This is a great post! I too feel that our country needs healthcare reform but I'm not informed enough to know what way would work the best. I just know that it's broken and needs to be fixed! My husband and I are retired (read fixed income) but we aren't old enough for Medicare. We currently pay out $15,600 per year for our ins. premiums and have no other choice. My gut tells me that the insurance companies are the problem but I don't know how to fix it. This post really points out how healthcare costs can affect a family. Thank you.

Health insurance is not a right, but it is essential today in our modern society. Speaking as someone who just retired to a country with "free" medical care for all, from before birth to death, I can assure you that Americans are NOT going to be happy with the new system. It would have been much cheaper, easier, and more practical to change MediCare from a seniors- only program to a program that includes all ages that need coverage. Many, many physicians made this suggestion; it was ignored in D.C. I will be watching, and praying, to see that all people who need health coverage, especially my amazing friends who have diabetes, will receive it in time under ObamaCare.

It is all too often that I have to consider career choices based on health insurance. I was in the Peace Corps and when I got out I worked at a video store that provided very low quality insurance that I paid through the nose to use. I was lucky to have insurance, but it took a big bite out of my paycheck. Luckily my parents let me stay with them for a time.

Pam--I've seen this type of comment made before, and it confuses me. Expanding Medicare for all ages would put the government in charge. The PPACA mandates coverage through private insurers. Yet you sound like you are criticizing a government-run system (UK, I'm guessing?). So wouldn't transitioning everyone to Medicare actually bring us closer to that system? I truly don't understand.

Bethany--the restrictions on what insulin/etc. already happens. It happened in our house when the insurer struck a deal with a manufacturer. We had to switch the fast-acting insulin to the one that was covered (along with different meter, because we had to switch to the test strips that were covered too). This was before the PPACA, it was done as a cost-saving measure on the part of the insurer. I am always wary when people start blaming things on the ACA, because a lot of it is simply insurers trying to get to cost savings.

Such a great post. I don't live in the US, but have friends do, and one (a Canadian-born citizen) who has been championing for good health care for quite some time ... and she doesn't have a chronic illness, or any health issues for that matter, but does head to Thailand every year for medical/dental checkups!

This is very well-written. It amazes me that people can take jobs that do not provide health insurance, and I am jealous of those who have spouses who work and can get health insurance through their employers. As a single person, I alone am responsible for providing my healthcare and it is quite daunting. I have turned down jobs because of it in the past, and now I am applying for Medicaid because I am too ill to work. I am so lucky to be in a state (MA) that allows single people to apply for Medicaid; if not, I can't imagine how I would survive. Literally.

Wonderful post. I often find that the people who are most critical of health care reform are the ones who have never been faced with serious medical bills. We T1s are in a unique situation because our need for insulin is so immediate - without it, we're dead (I hate to think about it, but it's the truth!). Also, the financial burden even for those of us with insurance is significant - I have some of the best health insurance in the country, yet my out-of-pocket expenses easily run $300 (assuming just the basics like pump supplies, insulin, and test strips). Without insurance, I'd be running up credit cards and running to the ER whenever I ran out of insulin. And I know that's the reality for many folks who don't have health insurance and have T1D. This needs to be discussed not from a political perspective, but from a basic human perspective. We see education as a fundamental right that should be available to all, why don't we feel the same about health care?

This is the topic I'm afraid to think about. How will my child live without his parents' health insurance?

This is such a great post.

I would find the UK system a huge relief! But I was progressive on health insurance before diabetes too.

This is a really well written & timely article and it made me sad. Everyone living with diabetes, chronic illness or an unexpected health can relate to this. They system has to change because it's so obviously broken. My monthly health insurance has gone up by 20% every year due to "administrative costs." What the hell kind of administrative costs are they??
There are dreams I didn't go for in my life because of my need for health insurance. And that makes me so sad - and incredibly angry.

Being diagnosed in college with Type 1 (and having crappy insurance through my parent's plan) I realized quickly I required good health insurance for quality of life. Luckily, I got a job in local government right out of college, then moved on to a good paying job with great health insurance for 13 years. Unfortunately, I was laid off last year the very week I came back from 4 months of maternity leave.
I am married & thankfully my husband can cover me through his job, and it comes with super health insurance. But I cringe when I realize that, if I had been laid off a mere 6 years ago when I was single, things would have looked pretty bleak financially and therefore physically for me with regards to my health and ability to paid for health insurance. It is scary to feel that helpless when you have a chronic disease.

Thanks for this frank look at the ral issues.

I think we T1Ds are especially sensitive to this issue. Partly because of our conditions, and partly because diabetes helps us to be more empathetic to others who are struggling.

Wherever this goes from here, I just hope that everyone can get the care they need. When they need it. Without having to give up whole parts of their lives just to pay for it.


I knew as soon as I started reading this post that it would start a huge debate, and am thankful it has remained civil on here.

I agree with Bethany above - no one knows what's really in this law that's scheduled to be implemented in pieces over the next few years. People want universal coverage for everyone and think it has no price, or that it can be fairly regulated.

Honestly, I would vote to keep what we have and do true *insurance* reform, not just healthcare reform. As a healthcare provider, I see the changes already being implemented which are adversely affecting business (and trickling down to patients) - and as a T1 adult, I just hope the sh*tstorm doesn't start to affect me too.

I've been lucky to be in a position to opt for the best health insurance for me and my situation and know that not everyone is as lucky. We just have no idea what's coming with the PPACA. I hope it's good...

Great post, and glad it hasn't exploded into the political. I don't know anyone who doesn't think something needed/needs to change with system before ACA went into effect, just a difference of opinions on how to go about it.

Being entirely responsible for my own health care (through my employer now) is a scary, scary thing - especially considering the entire package of personal health history I carry. I keep waiting for the other shoe to drop where something else goes wrong, and I can't live out some of my dreams because of financial worries. I know I'm not the only one - but no one should feel that way.

Hi Sara! This is a beautiful way to make your point. As you know, my son has autism and I think the same thing. The one thing we absolutely have to make sure happens in his life is that he somehow maintains health insurance. Thank goodness he doesn't cost too much per year at the moment, but without insurance and with the occasional crisis that comes along, it could ruin us all financially. It is horrifying that we live in this supposedly wonderful country (which I do love) and have so many people living in such perilous situations in terms of health care. Go Sara and thanks for being a voice for our kids too!

Something weird about diabetes care, and this may be Rhode Island specific, is that our endo and CDE have no way to bill the insurance company for phone calls, emails, and all of those other things they do that keep us out of the ER. They only MAKE money for the hospital when a patient winds up IN THE HOSPITAL.

Thank you for this post which has given me greater insight into the US health system.

In Australia things are very different. Our public health system (and Medicare) provide care for all. When it comes to diabetes that means that PWD can go to a diabetes clinic at a public hospital, see any and all health professionals required and have blood work done. This is all free of charge.

Prescription medicines are subsided - a insulin prescription is about $35 unless you are the holder of a healthcare card (all children with diabetes under 16 get one automatically, then it's means tested) when the cost is about $6.

Our diabetes supplies (syringes, strips, pump consumables etc) are covered under the National Diabetes Services Scheme which is available to all people with diabetes. To give you an idea - the cost of a packet of 100 strips is around $14 (again, much less if you hold a healthcare card).

Individuals can choose to see doctors privately - which I do. My endo charges about $100 per visit, but Medicare refunds about half of that. The same for when I visit my GP or ophthalmologist.

Private insurance is user pays. My family have top level cover, which means that I can choose which doctors treat me when I am admitted to hospital. If I need to be admitted to hospital, I will go private, but because of my private insurance, the admission costs will never be more than about $500 per year. Doctors costs are on top of that, but again, are subsidised.

Our family private health insurance is around $3,000 per year.

And you need to have private health insurance to get fully subsidised for the cost of an insulin pump - meaning those without insurance find it difficult to access pump therapy.

My most significant healthcare cost is CGMS. There is no subsidy for transmitters or sensors, so I cover that. Sensors here are $75 each.

Unlike in the UK, there is no 'postcode lottery' - we can choose the health professionals we see.

It's not perfect, there are definitely access issues, but healthcare is available to all.

Wow...I've never been in a situation where my insurance was unaffordable or nonexistant. It never really occurred to me how much I could be affected by something like this. Hang in there!

I KNOW that health care reform is necessary in this country, despite always having AMAZING insurance that covers testing supplies with no co-pay or deductible. (It's my father's insurance and it's an OLD plan, from way back when the city gave great coverage through GHI to their employees for life.)

It's not because I want to be a doctor and I've heard that ObamaCare is supposed to get doctors paid less. It's not because I've always had good insurance and not struggled with the premiums. It's not because I'm still covered by my father's awesome plan and, assuming I become a doctor, won't need to worry about health insurance while I'm employed. I do NOT like Obama's plan. I also believe that costs can be cut by regulating the pharma companies rather than the doctors offices and the prescription coverage.

The way I see it, if the government has its hand in the actual patient CARE, then we have a problem. What do a bunch of senators or representatives in a room in DC know about health care itself? Not much. They know budgets and how to balance them, but they don't know how to run healthcare for millions of people. That's the doctor's and nurse's and PA's jobs, not theirs. What business of theirs is it what insulin you can use or what meter is covered? What's the difference to them if a 75 year old or a 5 year old needs a heart transplant? It's for the doctors to decide, not the government. Insurance companies now limit what you can use, but like Bethany said, there are too many loopholes for us to be sure they won't stick us with the RiteAid brand of meter and say "screw them". It's just too easy for them to limit everyone with no way to appeal for it. Yes, parents (and adults!) of kids with T1 have to fight for a pump to be covered just as often as not, but what if there were no room for argument? How do we know that won't happen with this plan? How do we know they won't say that it's a choice between a pump for one person or a liver transplant for another? There are too many unknowns for me to be comfortable with THIS plan, but universal health care is important to me.

Sara, the sad thing is, you're one of the lucky ones.

Expanding medicare to cover everyone would have been the best solution. It didn't get anywhere in DC because insurance companies, for obvious reasons, would never be on board with it. It would have put them out of business. The mandate was the only way to keep almost everyone happy, especially, again for obvious reasons, the insurance industry. Big pharma probably has less to do with it than many think. I've heard that Canada manages to keep the drug companies happy enough and still get reasonable prices for many meds. Too bad we'll never get a single payer plan. What's good, though, is that now that we've got a start on national health care, piece by piece it'll get better, much like Social Security has.

Miriam, Thanks to Mitt Romney, the government has a big hand in medical care in Massachusetts. Everybody who need coverage is covered. I'm covered through my job, so I don't need MassHealth. My girlfriend, who's too young for medicare, needs MassHealth. She pays a premium to a private insurance company based on her income. It works, and it works better than when government was less involved in health care.

Obama's plan is almost exactly like the Massachusetts plan.

This is so relevant you have no idea. I cam to the website today to look at insurance posts! I am a 21 year old, recent college graduate. I have not found a job and am applying to graduate school for the Spring 2013 semester. I graduated Magna Cum Laude with a 3.6 G.P.A. I am 5'6" tall and I weigh 130lbs. I do not and never have smoked cigarettes. I work out 4-5 days a week, and have been a vegetarian since I was 9. I eat mostly organic and pride myself on leading a healthy lifestyle.

I have Type 1 diabetes.

I was diagnosed on my 21st birthday, last September. I was lucky enough to have student health insurance. Though they offered limited benefits and I have been paying 100% out of pocket for all of my prescriptions since last November, I was fine.

Because I graduated in May, my student insurance ended last Monday (August 13, 2012). Because I don't have a job with benefits, and neither do my parents, individual insurance is the only thing that I am eligible for. I began researching insurance at the beginning of July. After applying for and being rejected from 4 separate insurance companies, I started to apply for HIPAA guaranteed issue plans. These plans had premiums which were in some cases $500 a month for $5,000 deductibles and no coverage for doctor's appointments or prescriptions. After being told that I met every one of the qualifications for these plans, I applied on July 17, 2012. Today, exactly a month later I was denied. I have been on the phone with this company for countless hours in the past month. I was informed repeatedly that I met all of the qualifications and that there was no way that I could be denied. Every phone call they just needed me to answer more questions, to send more paperwork. This was frustrating enough in and of itself because I was spending hours talking to them to get practically no benefits. But today, I am denied, not because of my diabetes but because I had a STUDENT plan. One of the regulations of my guaranteed issue plan was that I had to be involuntarily terminated from a group insurance plan, which is exactly what my University of Florida health insurance was. But now, after telling every agent I have spoken to in the past month that I was being involuntarily terminated from a student plan, I am told that that is what prevents me from being eligible for the only insurance that I thought could take me. Because I went to college, and used the benefits provided at that college, I am being punished.

I called a former colleague of my mother who specializes in health insurance. His advice to me was to pay for everything out of pocket until I get into graduate school. That's hundred of dollars for insulin, test strips and insulin pump supplies. Beyond that, despite how healthy I am, having a low blood sugar induced seizure is a realistic risk in my life. I asked this man what I should do were that to happen to me. He told me to go to an E.R. and should I receive a $50,000 hospital bill, I should file for bankruptcy. His exact words were, "You're young, you don't have many assets, right?" WHAT? Let me get this straight, because I have a medical condition that I never asked for and can't help, should I need help for it in order to save my own life, I should subsequently have ruined credit for the rest of my life just because the government has offered me no way to protect myself? Simply, yes.

Sadly, I am not alone in this terrible situation. This is happening all over America. And yes, Obamacare is trying to reform this, but these reforms are not going to take place until 2014. How many people will die or become buried in a pile of debt until then? Insurance in America exists to provide healthy people with peace of mind. And let me tell you, until September of last year, I thought I was healthy too. Do not think that this is not an issue that could not touch you or anyone you love at the drop of a hat. You could wake up tomorrow and need help paying your medical bills, and wouldn't you want that help to be there? Well, as of today, for me, it is not. And this is a reality that I will have to live with, and live with in fear. Please consider my words when you are voting this November.

If I didn't take care of myself, but didn't have diabetes, I would have insurance right now. Does this seem like America to you?

Thanks for this excellent post, which has opened up such a great discussion here! I was diagnosed 40 years ago, when we used fewer supplies (no meters, no pumps, no CGMs) and I only survived without constant hyperglycemia by checking my URINE sugar and self-administering a shot of Regular every time my urine sugar was elevated. It was my own idea to do this, and (of course) frequently spelled a hypoglycemic reaction. I got a teaching degree, but after I earned it, I really was afraid to use it. I pictured myself passing out in front of a group of kids I was responsible for, since it wasn't meal time and I didn't think I could just drink down a glass of juice without them protesting. So I found a secretarial job in the corporate world, since I knew it would give me insurance. I ended up staying in the corporate world until 1994, and that's because (if I recall correctly) I was finally able to switch off of human Regular insulin (which actually caused me more hypoglycemia than pork did) and, of course, by then we had better and quicker blood glucose meters. When Lantus hit the shelves teaching became even easier (I still have nightmares about using NPH.) I have never gone without insurance, but I did work a bunch of secretarial jobs I didn't at all enjoy, because of the limitations Type I put on my livelihood. I don't know what the answer is to our health care mess, but I sure wish one of the candidates would be willing to attack the big pharma companies, who charge WAY too much for our supplies.

It took me years to pay off the debt I racked up after college and before I had a job with good benefits. The health insurance was the reason I targeted my job search to healthcare (I work for a hospital) or government.

We have a brother in law who had an adult-onset of type 1 in his 30's. He was experiencing symptoms and eventually bought a test meter to document his 400 blood sugars. However, he had to wait MONTHS for his new (but crappy) insurance to kick in. The day it did, he walked into the doc's office, tested right there, and wound up in the hospital... for all of ONE day. I have no idea how they controlled his sugar and taught him everything he needs to know in ONE day.

He is on shots and struggling to even afford those. I feel bad knowing how much a pump would probably help him. The system stinks.

Without a doubt our country needs healthcare reform and for as many reasons as there are people who live in the US. Everyone has a story even those who don't want healthcare reform. No one should ever feel secure with their health insurance today as personal circumstances can change, a job loss, a death of a spouse, several illness among family members at the same time. Every aspect of the system needs reform, from doctors, insurance companies and even what we 'think' we need for good health care. Unnecessary tests, prescriptions and procedures add to the cost.

Thanks for your post. We need more discussion like this. I think more people are for health care reform than what the media and politicians say there are.

I used to not even think (care) about this. Diagnosed at 18, my parents have covered my health insurance until now (just over 4 years). I just graduated and my insurance with my employer starts Sept 1st. I will be paying for my healthcare fully and I will definitely think about what healthcare reform would mean for not only me, but everyone else.
Great post.

I just took a look: our insurance (family of 4) costs $17,000/year. My husband's employer pays that--for now. And we have a $3,000 deductible.

Other than costing a gagillion dollars, it's great! We can get anything we want, go to any doctor on a whim, pumps, dexcoms, strips, therapy, whatever.

This can't last.

As you can imagine, this awesome post and my own catastrophic train of thought lead me to googling how Type 1 prisoners fare. It's not good.

Thank you for this achingly honest account of the realities of living with Type 1 diabetes. I've been very fortunate to maintain insurance coverage since being diagnosed in 1978; but the need for [good] insurance coverage is the number one factor that drives my career decisions. Basically, I don't have much of a choice.

I have friends that are dismissive of "Obamacare" because they think it is for lazy people trying to get something for nothing. But I work hard every day and am very grateful for the coverage I do have even if it's not perfect.

I am also a single mom to a 21 year old daughter who is intellectually disabled. I don't have the luxury of letting my guard down. When school services end for her this year, I will have yet another layer of help I need from the government.

I would much rather be independent of needing help from anyone or any entity, but unfortunately that is not my life. I try hard to maintain a positive outlook and keep the faith. Blessings to everyone who commented here and hopefully, your struggles for adequate coverage will end soon.

Awesome post. I can't imagine paying that much out of pocket. What you pay for medical supplies is almost what my family of four lives on each year. I must say, I think that the root issue for our country is that we need to decrease health care costs. No plan is going to make it in the long run because our culture is too unhealthy and too in need of medical care. And the baby boomers are about to need lots of attention in coming years. It's up to each of us to take responsibility for our health and make it the best we can. Obviously there is no quick fix to this issue but health education is key so that our future generations can be healthy and our economy, too.

Wow, thank you for this post, I have been waiting for it for a long time! I'm 37, on my way to becoming a single mom of 2, and have had FT employment (or grad school) with benefits since graduating from college at age 23. T1 since 18yo. ALL of my professional decisions have been based on health insurance and I have been really lucky. Whenever I'm feeling jaded about my job, I have to suck it up, think of my own health and my ability to take care of my children.

Healthcare reform is ESSENTIAL. Obamacare is not perfect, especially after having studied comparative health systems in grad school. But it leaves room for improvement, and it is a step in the right direction. Health is NOT a human right in the USA, and it needs to be.

Love this discussion, there should be an entire blog dedicated to T1 and health policy!

thank you, and best to all who commented.

I agree that something needs to change, but I think there are better options than "obamacare"why not sell health insurance like car insurance? then we price plans and pick the best one, or even just allow instance companies to offer their plans across state lines? easy change,no government deciding what of my or my t1 sons care gets covered for. no huge cost for implementing everything either. the government shouldn't force people to buy something they don't want. there has to be a way to bring the cost down so that it's more affordable without interfering with care and treatment options.

This is a very well written article and it does highlight the impossible choices many people need to make between the essentials of housing/food and health care. Your statement "I hope he can use his hard earned money toward reaching his American dream, instead of spending it on managing a disease." brought me to tears.

I was diagnosed at 19 while in college and I remember my first thought being "Ok, I need to find a job with the State, or marry someone who does." My dad was a teacher so growing up and after diagnosis I was fortunate enough to have really good health insurance. After college, I took a job in private sector thinking I could make things work with my condition. The costs were too much. Nothing made me feel worse than spending half my paycheck on insurance and medications. I hated knowing that other 20-somethings were spending money on things like concerts, vacations, shopping.

Ultimately after being laid off from that job and spending almost all of my savings on COBRA costs I decided to take a job with the State which while in my field of education, it does not use the CPA license I worked so hard to achieve. But, I made the decision that an extreme pay cut was worth the security of the insurance. This doesn't seem like a decision that I should have to make in a country that was built essentially on the idea of "work hard and you can achieve anything."

Chronic conditions, diabetes or otherwise, should not play a role in determining one’s career path. My heart breaks for people who don’t have insurance, or who have insurance, but the costs are too much to bear. I think that if our country is going to continue to try to sell the ideal of “the American dream” then everyone, regardless of their health, should be in a position to actually achieve that dream.

Thank you for your comments everyone (this is Sara who wrote this piece). Many, many, many thanks to Kerri for opening up your amazing blog for this important discussion.

It has been enlightening for me to read everyone's thoughts and experiences (and many of you brought me to tears with what you've been through). I completely agree that many aspects of health care need reform - from how people manage their own health, to prescription and medical service costs, to how insurance companies work, to the cost for health insurance premiums. I also agree that I am very lucky - not only can I get insurance through my husband (albeit expensive insurance) - but that I have a disease that is manageable. What we pay for insurance is extreme, but I can't imagine what it would be to pay out of pocket for everything or to be dealing with cancer, ALS, organ failure or the like in this current health care system. And although I think there needs to be reform in many areas, I have always had amazing doctors, NPs and nurses to help me and overall have received exceptional medical care.

My hope in writing this piece was to inspire people to tell their stories and think about the impact this election will have on them in regards to health care. I have always been a politically active and engaged person voting for the person who holds similar ideals to mine, but this election is the first where I feel that my vote can make a direct and immediate difference in my life living with Type 1 diabetes.

I understand Obama's plan does not address all the things we need to deal with in this country and it no doubt has some issues.

While I am definitely not an expert on the details of the plan, I do think the Patient Protection and Affordable Care Act strives to do just what the name says it does. As I understand it, the act puts in place rules and restrictions whereby we can't be discriminated against for our pre-existing conditions, insurance companies can't put a lifetime limit on us, insurance companies are required to spend 80% of what they get on patient care, there are limits on what we can be charged for premiums based on our income and we can join a larger group via a state exchange if our current insurance doesn't meet a certain affordability based on our income.

As for concerns about the government making decisions for us, it is my understanding that private insurance companies are still doing the coverage (and they already decide what can and cannot be covered). And for individual mandates - most people in this country already have one if they own a car - all but a few states require car owners to have liability car insurance.

I respect and encourage everyone's right to make their own choice on health care reform. Whatever your take on it, please make your voice heard and vote this fall!

You can be whatever you want to be as long as it has insurance. I think we have all heard that too many times. Healthcare is a complicated topic and the subject of heated debate. In this country many of the insured pay for those that are uninsured, test strips are a dollar (or more) each, insulin is over $100 a bottle, and yet dialysis is completely subsidized. I hope that the new healthcare laws will force insurance into paying for prevention. It takes a lot to maintain my a1c under 7. It really is cheaper to be healthy; however, insurance companies are counting on loosing people like us to another company before they have to pay out on complications.

I have had Type I since age 15 - and I am thankfully still plugging along at age 64.

I have not seen any benefit to me or my needs since the passage of Obamacare.

My costs have risen significantly. I pay the same premium as my 85 year old husband does for supplemental insurance, due to my "pre-existing" condition!

I have had doctors tell me they probably will not be able to care for me due to my "insurance" and pre-existing condition.

I relocated to the suburbs and most doctors don't want my business.

After 48 years of being admitted once for diabetes at time of diagnosis, I am outraged by the discrimination I face.

I was right-sized from my hospital Admin/nursing job and no longer a part of a "group" plan. After Cobra, I went into the state IChip program and for several years had to pay close to $11,000 premium per year in addition to 20% of all supplies for my pump and doctors visits and medications!

I still have to justify by logs and test results and doctor visits that I have this disease, that I need what I say and my doctor says I need.

I am due to get a new pump in October, and have to wait 5 years to get the newest technology. That's not bad enough, I also have had to be tested to show I indeed have Type I that my pancreas has been missing in action since I was first diagnosed in 1964! It is insulting and demeaning.

Trust me nobody wants what I have and I would not find any takers wanting to buy or use my supplies. What other chronic illness demands such paperwork and humiliation to get what you need when you need it?

I wrote the President before Obamacare was passed and asked him if he could guarantee that my life of being a good, compliant and admission free patient would be easier under his plan. I shared the drill I have to go through in great detail.

I received a short form letter over a year after my letter was sent from the President, saying that it was "people like me that he was fighting for"...Really?

I can honestly say I have seen no advantage nor benefit to Obamacare, and if anything the paperwork and justification game has worsened, as have the costs of taking care of my health.

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