We, The Undersigned - Tuesday 5/14

We, The Undersigned - Tuesday 5/14

Today, day 2 of blog week, the topic is creating your own petition.  This is a good question to consider.  There are so many things I would love to petition to change about Diabetes.

We, the undersigned, petition the United States Government for free diabetic health care to all diabetics.  No one person should be denied medical care for a lifelong disease.  Diabetes is extremely expensive.  With the downhill economy, more and more diabetics are left without health insurance and funding to meet their medical needs.  Many families face life-threatening situations because they cannot afford their or their child’s insulin.  Choices like buying a vial of insulin vs. putting food on the table are being forced daily.

Lets look at the typical diabetic’s cost for one month on MDI (multiple daily injections).  A diabetic on MDI would need at least one vial of rapid insulin and one vial of long-acting insulin per month.  Each vial retails for about $150.  Insulin syringes retail for about $25 a box of 100 count.  Test strips average $1 per strip.  So diabetics on MDI need at least 4 shots a day (1 long acting, 3 rapid with meals) if their blood glucose levels are in their range (not needing a correction for a high.  They would need to test a minimum of 4-6 times a day…lets average this and say 5 tests.

                Cost of Insulin:  1 vial Long acting @ $150 + 1 vial rapid @ $150 = $300

    Long Acting Insulin (Levemir/Lantus):  1 shot per day x 30 days = 30 shots

                Rapid Insulin (Novolog/Humalog/Apidra): 3 shots per day x 30 days =90 shots

                Total Minimum Shots:  30 + 90 = 120

Insulin syringes come in bags of 10 with 10 needles in each bag.  A box of 100 syringes contains 10 bags of syringes.

                For 120 shots, 1 box and 2 bags (of 10 count) syringes would be needed.

                Cost of each syringe:  $25/100= $0.25

                Total cost of each syringe:  120 x $0.25 = $30

Test strips come in boxes of 25 count, 50 count, and 100 count.  The higher quantity the box you get the cheaper the strips are, but on average it is $1 a strip.

                Testing:  5 times a day x 30 days = 150

                Total cost of test strips:  $1 x 150 = $150

Total cost of Diabetes supplies for 1 month on MDI

                $300 + $30 + $150 = $480

This is the minimum cost for diabetes supplies in one month.  How many people do you know that have an extra $480 a month lying around? Not many.

Other factors that will increase the cost:

                Being on an insulin pump

                Being on a CGM

                Needing more than 4 shots per day (which is most on MDI)

                Needing to test more than 5 times per day

                Having to see a doctor

                Needing Blood work done

                And more!

It is very sad and unfortunate how many people are denied health insurance or medical care because of their inability to pay.  I know there are emtala laws stating in emergency situations you are allowed to be treated regardless of ability to pay, but so many won’t go get help because they do not want to be faced with the high bills emergency rooms and hospitals run.  Regular doctors’ offices do not have to follow these emtala laws.  But if all diabetics were allowed to have regular health care and access to their needed supplies, they would not be facing these situations.  I have many friends, and myself included, who have gone into medical debt.  No one should be in debt over a medical bill.

Share and Don’t Share #DBlog Week Day 1

Since my spring semester has wrapped up at college I decided to take the challenge and participate in blog week.  Today’s topic is  Share and Don’t Share- #DBlog Week Day 1.

Most often we are lucky if our 3 month checkup endo appointment is 30 minutes.  Many only get 15 minutes.  I recently moved 6 hours away from home and only had 1 endo appointment which was a good half hour long, but also my first patient appointment.  I go for my 2^nd appointment and 3 month follow up on July 2^nd so I will see how much time I get.

What bothers me the most is that I pay a $40 copay to see a specialist, in my last appointment was a NP, and in the past I was lucky if I had 15 minutes with the NP or doctor after waiting over an hour in the waiting room.  If they see 4 people an hour back to back for these 15 minutes, they are making $160 an hour!  This in my opinion is highway robbery.  No of course copays vary among insurance companies and their plans.  I really feel badly for those without insurance though as how do they afford these valuable appointments. 

Now what I wish I had more time to share about all the good things D led me to.  Like all the cool people I have met in day to day life, online, at D camps/conferences/events/etc.  How these people have help molded and encouraged me to be the person I am today.  My best friend (who our parents jokingly say we are twin sisters separated at birth) I am so grateful for her…she lives in England, me in the US.  I have many world-wide friends.  There is just a common language us D families share.

I would like more time to learn more advance skills.  I am very anal with my D management.  I do not like to go below 90 and over 150, I like it best when I hover around 100.  I want to learn more how to make my cgm as useful as it can possibly be.  I want to learn to make the best out of my pump.  I want to improve and have the best control possible.  Sadly there is not enough time for this education (or maybe it isn’t available everywhere) in our 15-30 minute checkups.

I would like to be able to share my daily challenges with my D team.  I want to learn tools to overcome them.  Like how to manage buffets with gastroparesis, how to handle family parties where the food isn’t what I normally eat, etc.  There are so many more advanced skills others have than me that I want to learn.  But there is no time for the D team to teach them.

Since most D teams do not have the time to cover these things I have turned to other D families, the DOC, and other long term D friends and have developed my own tricks and tools.  I would love to share these with my D team.  Sadly there is just not enough time.  Most endo offices are over loaded with patients.  There is such a huge need, and not enough endo’s and cde’s to cover the high demand.  I think pediatric endocrinology is affected the most, but over all we are lacking doctors who want to specialize in Diabetes.  People do not get the time they deserve, some people cannot even afford to have access to a D team.  This is something that should not be happening, but sadly it is.

Life with Diabetes is Exhausting

I know I have not been blogging as often as you and I both would like.  I been extremely busy with school work.  I finally have something I just wanted to share with you all. 

I love to talk about Diabetes.  I try hard to make sure everyone I come across is made aware on something new about Diabetes they did not know or had misinformation on.  I wrote a personal expository essay on how exhausting Diabetes is.  I hope you all like it.

I could have wrote for ages, but I need this to be short and sweet to meet the requirements of my instructor.  I started with 16 pages, and slowly cut it down over the past month to 3 pages! I hope it does what I intended it to do.  I do not have my final grade back yet so not sure if it accomplished what I wanted.  I did meet with my teacher about this paper in the drafting stages and she did say she was very interested and never read a paper like this before.

Life with Diabetes is Exhausting

            Many people consider medication and medical technology as cures, not a treatment. Type One Diabetes is an autoimmune disease where the body attacks the cells in the pancreas, which produces insulin, a hormone that helps a body change sugars into fuel. Without its own insulin production, a person with Type One Diabetes needs insulin, through an insulin pump, which is not a cure for Type One Diabetes. Diabetes is a disease that demands more of our money and energy.

Life with diabetes is not made peaceful or normal with insulin treatment. Living with Type One Diabetes, I require insulin 24 hours a day seven days a week until the day I die. I preprogram my pump to provide a fixed rate delivered every hour. This method, basal insulin is persistent delivery all day and remarkably similar to how a normal working pancreas functions. When my blood glucose is high, or I eat, I would need a bolus. To determine how much my body needs for insulin, I need to check my blood glucose several times a day. I check my blood glucose upon waking up, before every meal, two hours after every meal, every two hours if I have not eaten recently, before starting the car to drive, and if I think my blood glucose may be high or low. Without testing, I do not know what my blood glucose level is. This can be extremely dangerous, and life threatening as I can have too much or too little insulin. In addition to blood testing, every three months, I need to have a blood test called an A1C, a 90-day average of blood glucose, and I have to see my endocrinologist, my diabetes nurse educator, and my nutritionist. The team downloads my insulin pump and meter readings to review and makes suggestions for adjustments in my insulin dose ratios. This can become difficult because of your body’s needs for insulin changes with daily life, aging, weight gain/loss, stress, and illness.

Insulin and supplies are expensive. I cannot reuse insulin or its supplies. The brand of insulin I use, Apidra, averages $150 a vial. I use four vials a month. My insulin pump costs $6,000-7,000 depending on where purchased. Then the infusion sets (like an IV, but instead of in your vein, it is in your fat) are $120 for a box of 10. The reservoirs (what holds the insulin) for my pump are $10 for a box of 10. I use 15 infusion sets and reservoirs per month. Blood glucose meters range from $20 to $100 per meter. Testing strips average $1 per test strip and I use 400 test strips per month. My continuous glucose monitor costs $1,200 to get the system, and the cost for four sensors is $400. One sensor lasts seven days. Insurance for me covers these costs at 80%, but I still spend $200-400 a month.

Diabetes research funding is limited. New technologies are continually released in the diabetes field. There are many pharmaceutical and durable medical supply companies involved with diabetes. These companies are constantly researching how to make a stronger item, like blood glucose monitors and insulin pumps. In my days of using an insulin pump, on average every year at least, another product comes out, or a business releases an updated version of their product. Instead of making better products, which have little new differences, I feel more money should be put into research for a cure.

With a cure for diabetes, many jobs will be lost. Diabetes is an epidemic, and because of that there are a lot of jobs in the diabetes market. Doctors, nurses, insurance companies, pharmaceutical companies, and pharmacies, to name a few, are affected if there is a cure. Curing diabetes will cut jobs and money brought into these areas as people with diabetes will no longer need their services.

Life with diabetes is particularly tiresome. It is remarkably easy for me to get overwhelmed and just want to give up. Even though diabetes is part of my life and I may seem like it does not interfere, it is a lot of work to keep myself healthy. Besides worrying about testing, insulin dosing, and doctor appointments, I also have to worry about where the money will come from to buy the supplies I need. Instead of improving medical technology, attention should be on finding a cure for diabetes.

Cloud Nine

I am so floating high up on cloud 9.

I woke up this am wishing I just could go back to bed.  6 am just comes too fast.  I did not want to go to school, I wanted to sleep.  I resisted the urge, got up, and off I went.  I catch the 6:39 am bus to go to school. 

Fast forward a few hours and I'm on my way home.  I come home and Jan (roommate/friend) tells me she saved the paper as there was an article on Juvenile Diabetes she thought I would be interested in.  I was excited. 

I look at the paper.  It is the front page of the living section.  It is about a mom who has a T1D daughter on the pump and cgm.  The front picture showed her Dexcom G4 (yes I'm very jealous as I'm still using the Seven +) and a picture of her sister testing her blood glucose.  The article was about their family and how the mom has a FB group for  locals  and even runs a T1D support group at the local hospital.  In the article was information on the FB group, when the support group meetings are held, and an e-mail to contact the mom.

Right away I requested to join the group on FB and I e-mailed the mom.  I cannot tell anyone how much this made my day.  Most of you know I was living in the Boston area and recently moved to Pennsylvania.  I was going to local support groups and events, mostly an insulin pumpers group.  I was so sad to leave that all behind.  I cannot wait to attend these meetings and get to know my local D peeps. 

Now my day has been made.  It is perfect.  Some may think of this a a small thing, but its the little things that make the world so great. 

For those interested in the online version of the article you may check it out here.

Thankful for parts of Diabetes, Yes I am!

I know I have not been blogging lately.  I’m deeply sorry.  I have been very busy with real life.  I went to visit a friend in PA and caught the puke/poop bug, and was sick for a few days.  I am also moving down to PA so been busy packing on top of the normal daily activities.

I wanted to share with you all something that actually makes me thankful for diabetes.  It is my BFF Jody. I met her in 2004ish on a diabetes forum Diabetes Daily.  We chatted on their message boards and chat room for a few years.  We became very close good friends.  In fact so close we consider ourselves twins.  We have a lot of similarities.  She is a few days shy of 6 months older than me, we were diagnosed around the same time, have similar interests.  It is quite funny.  The saddest thing is we live an ocean apart, me on the east coast of the US she in England.  So it’s very hard to keep in touch as there is a 5-6 hour time difference depending on the time of year.  And mailing letters and packages and phone calls are expensive.

In 2009 she got the opportunity to come over to the US and visit me here in Boston.  She came over with her cousin and her cousins 2 kids who were 3 months and 2.5 at the time.  We had a ball.  We went to Vermont Teddy Bear Factory, Ben & Jerry’s, NYC, all sorts of places in Boston.  She even experienced Chuck-E-Cheese one rainy day. 

June 2011 I had the chance of a life time and got to go to Scarborough England to visit her.  I had the time of my life.  I stayed there for 3 weeks.  We saw everything in Scarborough…I even got to go to her Endo appointment.  We took train rides to York for the day and met up with another D girl, and we took the train to London for 5 days.  I love London I cannot wait to go back and visit there.  In addition to the train we took the bus to some Sea side towns, and her dad drove us to some cool places like the Moors National Park and a Tea House.  It is so beautiful over there.  And I just have to say living over there is so different than here in the US.  They use a ton of public transportation, and it gave me a whole new approach to public transit.  I now love using buses and trains here in the states to get around.  We also walked almost everywhere.  Something we here in the states hardly do.  We don’t think twice about jumping in the car to go to the corner store.  There if we couldn’t use the town busses we walked.  We walked everywhere, to the grocery store, her hospital appts, her cousin’s house, the grocery store.  If we wanted to go somewhere we had to walk.

I know diabetes can be very frustrating at times.  But because of diabetes I have made several great friends worldwide--from the Philippines, to Malaysia, TO Australia, to all parts of Europe, to Canada, to all over the US.  When I get down about diabetes I like to think of all these friends I have gained and the opportunities I had because I have diabetes. 

I have to give a quick shout out to some of the great ladies I have met.  Jody, Lucy, and Carrie in England, Joni in MN, Hannah in Malaysia, Lloyd in SD, Jess in Nova Scotia, Alexis and Megan in Las Vegas, and there are many many more.