Tag Archives: diabetes supplies

9/11 and Diabetes Created New Concerns

Remember 9/11This post was originally written in 2012.  The sentiments remain the same. 9/11 was horrible.  When you live with diabetes, 9/11 brought out fears and concerns that you would never previously have considered…

September 11, 2001.  Is there any adult in North America who does not remember where they were on that fateful morning?

I  had left my house early to drive to the airport 2.5 hours away to pick up my grandmother who was coming to visit from the other side of the country.  My oldest son was in school and my youngest was with me for the ride.

I stopped to do a bit of shopping and was looking at paper towels when my cell phone rang. I was told  “A plane has hit one of the towers in New York. There has been a terrorist attack.”   It made no sense to me and I didn’t believe it.  There had to be a mistake so I continued my shopping  before the next leg of my trip.

A few minutes later my phone rang a second time.  This time it was a woman from Air Canada who said,  “We have your grandmother here.  The plane can’t fly her  because all air traffic has been grounded.  We will be putting her on a boat and you can meet her tomorrow morning.”

What? The terrorist attack was real? Planes grounded?  I was shocked to the core as  I spoke to my grandmother who was in great spirits and excited to experience an Atlantic Ocean ferry boat crossing.  We  headed home and like many others, I alternated between being glued to the tv and checking my computer for updates from friends and family.

I had recently found an online support group  for parents of children with diabetes. The people there had not only become my lifeline, but also my family.  We were frantic to hear from people that we “knew” living and working near the towers in New York.

I had a cousin who was an NYC police officer. I had to find out if he was working that day or safe with his family on Long Island. Another cousin was due to go to traffic court that day in one of the Towers and I wondered if he went before the collapse? It was a day of chaos, fear and some relief.

By the end of the day, everyone was accounted for.  There were a lot of prayers for those lost as well as those who made it out alive.  As the dust settled–figuratively and literally, a new fear began to permeate.  I live on an island in the middle of the Atlantic Ocean and can easily be cut off from the rest of the world–the rest of my family.

More importantly, if we were cut off how would I get insulin or diabetes supplies? My youngest son relies on insulin to live.  What if we couldn’t get it as easily any more? How would I keep him alive?  What if the terrorist attacks continued? Would they target pharmaceutical factories? Could I feed him no or low carb foods? Would he be okay? I could feel the panic welling.

I wasn’t alone in my concerns.   Other friends with children with diabetes were thinking similar thoughts but some were  much more resourceful than me.  One friend investigated getting insulin from rabbits to use for her child.

Thankfully we never had to be concerned with any of those fears coming to pass.   My grandmother is now passed on.  Each year, we all continue to  remember exactly where we  were on that day and we say an extra prayer.

For those of us living with diabetes, we give an extra pause.  We remain grateful for access to the supplies that keep our loved ones alive.  It is oddly funny however that once diabetes enters your life, it permeates everything–even memories of disasters.

Preparing for Disasters with Type 1 Diabetes

diabetes emergency listThis year we have seen many mandatory evacuations because of both hurricanes and fires.  When you live with diabetes in your home, how do you prepare for disasters? Do you have a list of evacuation supplies checked off and ready to go?

People in the hurricane states, often have a emergency tote or bag that they can grab on the way out of the door but remembering everything that you could need can be a challenge.  Over the years, we have come up with a detailed list of evacuation supplies for people with diabetes on the Diabetes Advocacy website.  In lieu of recent events, I thought that it might be a good time to go over some of the items with you.

Keep a container near the door

As I mentioned, it is important to have all of your supplies in a quick, easy to grab container.  Evacuations can be planned, but sometimes you are only given minutes to have all of your valuables ready to leave.  Make sure your diabetes bag is always in the same place so that you won’t waste valuable time trying to find it.

Packing Basics

Make sure that you have some of the basics like a Frio pack if you live in a warm climate.  You will also want a flashlight and spare batteries in case your area loses power.  Candles and wooden matches can also provide light and heat if need be.

A first aid kit should also be in your emergency container. While you may have a lot of diabetes supplies, other medical emergencies can happen and basic first aid is a must.  Don’t forget to add anti-diarrhea and anti-nausea medication to your kit.  You should also have copies of all prescriptions in case you are away from your home pharmacy and need to access your medication refills.

Food and drink

We have all seen the images of people stocking up on cases of water and in an emergency it is vital.  If you have drinkable tap water, fill up milk jugs, juice jugs and other items with water to take with you.  Also pack juice packs, tinned food as well as cheese and cracker snacks. If you pack tinned items, don’t forget a hand can-opener as well.

Diabetes Supplies

It is recommended that you pack two weeks worth of diabetes supplies with you during an evacuation.  Consider bring a spare meter, spare batteries, alcohol wipes, pump supplies, insulin, syringes, ketone strips, and medical tape.

Other items to remember

Don’t forget to bring spare blankets, cash in case bank machines are down, and pet food for your furry family members.

I am sure that I have forgotten a few things but I would suggest that you view the Diabetes Advocacy Emergency page and print off a copy of the emergency supplies checklist.  This will help you feel a bit more prepared should a disaster hit your community.

Save today and save more tomorrow

In Canada the economy is in a mess. All levels of government seem to have an incredible debt load. They are constantly in the media looking for ways to save money. They are asking people where they feel that they can make cuts.

I have also been reading posts about adults with diabetes who are having to pay for their own syringes and strips. There are stories of young adults asking why they are paying for needles that keep them alive when drug addicts are getting needles to keep them high for free. There are conversations about seniors who have no coverage at all or are given one box of test strips to cover them for an entire year. My heart breaks for these people. I am terrified for their health. I seriously wonder what governments have been thinking for all of these years.

I have been at this diabetes advocacy thing for many, many years now. Back when I was first gathering information on the cost of insulin pump therapy versus the savings, I learned about the high cost of complications. I quickly understood however, that the government of now is not interested in the worries of the government of tomorrow. They were not interested in paying for pumps and quality care today to save on dialysis tomorrow. They wanted to not pay for dialysis today. This shortsightedness has led us to where we are today.

I am not sure what the cost of a hospital stay is currently but the Toronto Star put it at $7000 per visit in 2008.

According to Diabetes Depot, for $7000 you can purchase…

  • 61 5x3mL cartridges of Lantus
  • 50 5x3ml cartridges of Levemir
  • 206 10ml vials of Novorapid
  • 215 10ml vials of Humalog
  • boxes of 100 Lifescan glucometer strips
  • 184 boxes of 100 per box BD Ultrafine II Insulin Syringes 1/2cc 30 gauge
  • 116 boxes of Animas insulin cartridges
  • 37 boxes of Paradigm Quick-set infusion sets
  • 22boxes of 5 per box Enlite Glucose sensors
  • One insulin pump (which is guaranteed for 4-5 year)

So for every time a person with diabetes goes to the hospital–and my old research said that on average a person with diabetes may go into the hospital for an emergency three times per year if they were not well-managed, the government could have bought them syringes, or insulin, or strips, or all of the above and saved money.

If a person was hospitalized TWICE per year, based on my calculation last year, the government could have paid for a sensor augmented pump AND all of its supplies for the year for the same amount.

Sadly provinces are not covering sensor augmented pumps.  Many provinces are not covering pumps for adults.  There are provinces not covering insulin, syringes or test strips for people living with diabetes.  That worries me greatly.

It worries me that people are not able to properly take care of themselves.  It worries me that governments are looking for ways to cut costs without looking at the bigger picture.  I have sat at pre-budget consultation tables.  I have asked and have heard others ask for governments to invest in keeping people healthy today so that we don’t have to pay much larger bills tomorrow.

I don’t know when they will truly begin to listen.  I will continue to suggest as I know many others of you will as well, that they look at preventative measures over short term cuts.  In the meantime, I will be saddened and worried for those who struggle to afford proper medical care and treatment.  I will also be motivated by them as well.

Together we will one day see real change for all of our sakes.

diabetes supplies

 

If its not sexy, how to we make them care?

Its something that has really been plaguing me the last few days…how do we make people care? How do we help them to get it? Many people sympathize with all of the challenges that goes into dealing with diabetes.  Some people will look wide-eyed and dazed as they realize all that it entails but very few truly understand the serious and overwhelming nature of this disease.  In order to receive better funding for research or support with devices, its vital that common people understand but how do we do that? I hope you can help me with that.

My son was diagnosed with type 1 diabetes almost 15 years ago.  Before his diagnosis, I didn’t get it. I knew one child growing up who had the disease and knew one person as an adult who had type 1 diabetes.  She had to watch what she drank and could only use diet 7-up for her drinks.  That was the depth of my knowledge.  Today  I am a walking encyclopaedia.

We don’t need the general public to have as much knowledge as those of us living with diabetes.  We don’t need government officials who understand the ins and outs of the disease either but we need a greater empathy and understanding.

For years I have shared stories. I have given people the scariest moments to ponder. They have watched as my son ate meals at regimented times or devoured food with the voracity that only a teen can do followed by a large bolus of insulin. Despite that, I can hear in certain comments and see in various facial expressions that they still don’t really understand.

They think I worry too much…and maybe I do.  They don’t understand the costs associated with the disease–emotional or financial. They cannot begin to understand having to spend thousands of dollars each month just to stay alive–we have insurance that covers that right?  Obviously we have over dramatized things–they aren’t really that bad are they? Wrong.

Some people understand the freedom offered by a pump but fail to understand the importance of a sensor. The cost seems ridiculous when you can just lance your finger and have it done with. They don’t understand how important it is to “see” what is happening inside the body and to be able to anticipate and react to problems as they happen rather than later.

How do we make them understand? How do we make loved ones who don’t deal with this 24/7 truly comprehend what a person with diabetes goes through on a daily basis? How do we convey the stress and worry that they carry with then all of the time? How do we make an invisible disease visible and serious to those around us without the loss of limb or life? How do we remove the blame and create understanding?

These are real questions and I am looking for real answers. How do you handle these issue in your life? Please share them with me.  I would like to be able to use new and more effective techniques as I continue to advocate for my son and others living with diabetes. I would like to see the world come to a better, more real understanding of what people go through so that they can be more kind and more thoughtful to those living with diabetes.  That is my goal for 2015. Please help me to reach it. miss-idaho-insulin-pump-instagram-doodle__oPt

Age Shouldn’t Matter

Last week, during blog week, I told you about things that get my dander up and make me want to scream from the roof tops until they are fixed. One of those things was access to insulin pumps and supplies. Since the day that I realized that there were more options available to my son than the insulin regimen we were currently on, I was adamant that all people with diabetes should have choice in their treatment options.

People living with diabetes should be able to decide if they want to use Lantus over NPH. They should be able to choose Apirdra over regular insulin.  They should be able to see if a Continuous Glucose Monitor or an insulin pump is for them without having to sell their home. That sounds extreme doesn’t it? Sadly it isn’t.  Despite living in Canada with its socialized medicine, Canadians are still not always able to access the best treatment options for them.  They may not have private health insurance or their insurance may not cover the devices that they desire to use.  The result is that they go without or go to extreme measures to get the medical tools that they desire to keep them healthy. For me, that is not acceptable.

My son began using an insulin pump 11 years ago.  I had wanted a pump for him since the first time I heard of the flexibility that it allowed but financially it was not an option.  His father had medical insurance but insulin pumps were not covered. What changed 11 years ago? My family stepped in and said that they would come together to pay for the pump.  They wanted the very best for my son.  It is a moment that I will never forget.

Over time things have changed thankfully. Provinces have begun to cover insulin pumps–for children.  Those over 18 have had to find good insurance, high paying jobs, go back to injections out of necessity rather than choice or move to Ontario (the first province to cover all people with Type 1 diabetes who wished to use insulin pump therapy).  In my own province of Newfoundland and Labrador, changes have been made as well, the age limit for assistance was moved to 25.

Today my son is 16.  He is heading into his final year of high school and looking at career options. The most important part of his career choice is to find one that is either very high paying or offers great benefits. What he enjoys seems to be second on our list. That is discouraging and gets my dander up.

If a person wishes to use an insulin pump to best control their diabetes care, then they should have that option.  Age, financial status, or occupation should not dictate what type of therapy they can receive.  With this in mind, advocates in provinces like British Columbia have created petitions to ask their government to expand coverage and remove age restrictions. Pensioners are having to go back to injections because their private health care coverage ends at retirement.  Young adults who are beginning careers and new families are having to rethink how they will move forward because of cost constraints brought on by managing their diabetes care.

This is not right.  Age should not dictate whether you get an insulin pump or not.  Insulin pumps provide just as many benefits to adults as it does to children.  Adults with type 1 diabetes who are using insulin pumps often find shift work much more manageable.  They tend to see less diabetes related down time because they can micro manage their disease with greater ease.  The addition of Continuous Glucose Monitoring systems to their care can help them to anticipate dangerous highs or lows that could have otherwise sent them home for the day.  Increased productivity and work time for people with diabetes has a larger impact on society as well. People living with diabetes who are able to work are able to contribute to the provincial tax coffers through their employable earnings.  They are less likely to have complications or dangerous blood glucose swings that could send them to the hospital.  Our young people with diabetes are able to look at jobs in the province rather than having to move to areas with better pay and better benefits.

The rewards definitely outweigh the costs to the provincial governments and our health care systems. With this in mind, I have created a petition that will ultimately be presented to the government of Newfoundland and Labrador asking that they expand their insulin pump program.

Please consider signing and sharing this petition.  The more voices we have, the stronger we are.  This is a very serious and real issue.  The stories and needs behind the petition are heart breaking.  I have spoken to a government employee who have had to rent out her homes so that she can have extra money to be able to afford her diabetes supplies.  I have listened to medical personnel who have had to rely on financial help from a life partner in order to continue pumping.  I have sat down with members of the police services who pay the equivalent of an extra car payment each month just to keep themselves pumping and healthy.  There are also people who are in minimum wage jobs who have no choice but return to injections after they turn 25 because they just can’t afford to pay for their rent and their insulin pump.

This needs to change. With your help it will. Please support this initiative for all of those who choose to use an insulin pump.

NL pump petition