Diabetes Counterculture?

For those of us who have been living in the diabetes world for a year or to, it is very obvious to us that we have our own language and way of doing things. It is common for a mother of a two year old with diabetes who is throwing a tantrum to state in a stern voice, "You had better be high Missy!!" They are used to the odd looks that they receive as people are racing to call Child Protective Services on the parent who seems okay with their toddler being "high".

I came across a tidbit today in the Children with Diabetes Humour section that fit with this. The family was eating in a restaurant that served alcohol. The five year old with diabetes was hungry and impatient. Mom was looking for alcohol swabs to try and clean something off of her fingers. She began chanting, "Where is my alcohol? I want my alcohol!" For some reason people looked at them a little funny. Those of us who live with diabetes see nothing strange about this.

Maybe we are the odd ones? We are the ones that are very nonchalant about the amount of blood splattered on our sheets and clothing. We have learned to buy dark sheets and avoid white at all costs. Personally, I think my son took the blood thing to a whole new level the other day. I sat down in the living room and on the coffee table was his test kit (and of course a pile of dead strips). I was shocked however when I looked at his lancing devise. That puppy looked like it had been murdered!! It was amazing the amount of blood all over it. I swear I thought it had been part of some sort of deadly attack. When I asked my son about it he was very calm. He saw nothing wrong with it. I was positive that if a police officer had walked in at that moment, he would tear my house apart looking for the dead body. I could give any CSI episode a run for its money in blood splatter!

But our oddness seems to be spreading. Our terms that so often sound like something out of a counter-culture...being high, needing alcohol, having a shot, seem to have made their way into main stream media. Last night I was doing some research on an athlete. He is heading to the Olympics but I really knew nothing about him. I found a bit more information last night but my work ended after reading a CTV article. Now CTV is a respected Canadian television network. They discussed the trials and tribulations of this young man...not only is he obviously a little off his rocker for choosing a sport that requires him to ski for FIFTY KILOMETERS (I can't do 50 meters!) but he is doing it after numerous sports related injuries and surgeries as well as living with Type 1 diabetes. He is truly amazing but the best, best, best part of the article for me was when they discussed life before his insulin pump. You see in those days he was required to take up to 10 HITS of insulin a day!! I have heard it called a lot of things but even for me, "hits" of insulin takes me directly to the drug world and I have to laugh.

I honestly don't care if they want to call it hits of insulin. I don't care if people think I am crazy when I ask if my kid is high and I am not talking about drugs. These are things that we live with and maybe using these words that have become so popular in reference to other things will just make this disease a bit more memorable for people and make the ask more questions.

Off to check and see how many "hits" my son took today....

Cure Funds

Recently JDRF announced that it was giving money for a Johnson and Johnson artificial pancreas research project. The other day I also noticed that they were involved in another research project with BD. I will readily admit that I have had very little to do with the JDRF since my son's diagnosis. They are virtually non-existent in my area. I subscribe to some of their initiatives and occasionally follow some of what is being done but I am not involved with them regarding any fundraising or support.

The people that I have seen supporting them however have been very diligent. Families who create walk teams seem to go to great lengths to fundraise and let everyone know that they are "Walking for a Cure". I therefore began to wonder how these same people felt about their "cure" money going towards diabetes tools research. Don't get me wrong, tools are what keep my son alive. The great advances in tools are vital to me until that day comes when he or others living with type 1 diabetes can be cured. I spend a lot of time advocating to get these tools in the hands of all people living with diabetes so I am definitely in support of this sort of research. My question however, was for those who had "walked for a cure" and now saw their dollars going towards treatment.

Organizations like the Diabetes Associations openly state that money raised for them goes into a variety of pots including research and development. The JDRF website states that its "mission is to find a cure for diabetes and its complications through the support of research. " For many that sort of a statement would suggest that a cure is its only focus. People that I have spoken with have been rather taken aback by these announcements. Some feel very betrayed while others are shocked but accepting. Many living with diabetes feel that they can still support this and feel that it is okay for them to spread their focus to living with diabetes and well as working towards a cure. Still others are sitting back scratching their heads. These people are not so sure that this is where they want their money and efforts to go any longer. Sadly there are many other organizations that would gladly accept their support.

I have no idea if this public support for techonologically based research will cost the JDRF any support or not. I am happy to see any advances that will keep my child alive, healthy and happy until that day when someone does finally discover that cure.

Battling the other diabetes demons

The other day Liam told me that he had made a new years resolution. I asked what it was. He said to have better control of his diabetes--test more often, pre-bolus and more readings in range. My heart cracked just a little more. I was proud that he was at least talking the talk but I was scared that with puberty the focus on "readings" would lead to some disappointment.

It killed me a little more to know that there was a tool out there that could help him with this. It would give us more data and let us know what was going on when he wasn't testing but I had decided against purchasing it. Continuous Glucose Monitors continue to be much more popular than days of old. They are much smaller and much more convenient than ever before. Unfortunately they are not covered by the provincial insulin pump program, nor are they covered by Liam's father's medical insurance. His parents would have to pay for the system and then the monthly supplies. With braces to be paid for and a family vacation in the works, there is just nothing left for such extras as a CGMS.

Once again diabetes care is reduced to dollars and cents. It becomes about using the tools you can afford not using the tools that would best manage your care but we are more fortunate than a lot of others. Most adults living with diabetes still do not have government assisted insulin pump programs to lean on. They are stuck having to use injections or cover the cost of insulin pump therapy out of their own pockets. Even for those with insurance there is often "caps". We ran into a cap the other day for test strips. Liam used up more than the allotted $1400 worth of test strips...no kidding we test 10-12 times per day. I couldn't believe a program would be so limiting but for many that low cap is found on all of their diabetes care supplies.

This kills me. This could be my son in a few years. I am already telling him that he has to look at his employment options in terms of what job will give him the best benefits. That is insane. Its not about what you want to do, its about what will either pay the most or offer the most.

All of this was in my mind the other day as I went to one of the first pre-budget consultations in our province. I had a person who was willing to stand forward and speak to the need for an adult insulin pump program in our province. We were slightly misinformed regarding how the process worked and what we should present. We did get our message out there and were supported by another minister at the table but I still left there wondering if any messages were getting out there. Were people permanently clueless about diabetes?

After the presentation, one of the assistants to the Minister of Finance spoke up and said that some pump supplies were in fact covered for those over 18. The presenter pressed the man to say what supplies were covered but he could not answer her. I was shocked as our diabetes clinic was looking to receive funds from the Diabetes Hope Foundation to help young adults. They surely should have known if there was a provincial program and wouldn't look to private funding. I could not let this sit. The assistants are known to have a lot of power when it comes to getting things done as they tend to sit in the departments for longer than Ministers. I had to make sure that this guy had his facts correct.

I went up to him after the meeting and explained who I was. I asked him what pump supplies were covered. He said that while the pump wasn't covered, test strips were. And???? Well it turns out that was it. Test strips could be covered under the provincial drug plan for qualified users. Okay but that helps all people living with diabetes whether they are on insulin, medication or diet and exercise. It does not help someone to maintain their insulin pump. He had no idea. I was scared. This was one of the people involved in deciding on if we should have funding and he doesn't have a clue about what we are talking about.

The plus side is that there are a few more public meetings available for people to set them straight. The downside is trying to find people to speak out, to take an afternoon or morning of their time and spend it in one of these forums. It is trying to get people to write emails and contact the panel to let them know that this is important and why. Please, if you can help us to help the adults with diabetes in Newfoundland and Labrador. With the right tools and knowledge anything is possible. Even Liam's goal of better readings. He has already dropped his A1c by .6% and has a very proud mom.

Adult Pump Program

I said it was time to get back to the grind. Time to get down to brass tacks. Time to tackle the big issues and sure enough the government agreed. On Monday I heard the news that pre-budget consultations were beginning at the end of the week. No pressure there! I knew that if I wanted to see an adult pump program in 2010 there was only one thing to do...get to work!

Last year I had worked with a number of people. We had gathered information. We had devised strategies. We were set. We hit the radios. We were in the newspapers. We met with politicians and wrote letters. Unfortunately we also were met with a recession and our chances of expanding the existing insulin pump program were crushed under the burden of a depressed economy.

2010 is a new year. Things are looking up. The economy of Newfoundland and Labrador is better than many. This year we stand a chance if someone takes the lead. I had a group already in mind. I had parents whose children were now young adults. They would be perfect to speak but many of these parents were busy so the best plan of attack was to have literature prepared for them in advance. That is what I did yesterday--I planned, I wrote, and I emailed. I created a letter to be sent to the submissions committee. It could be passed to friends and they could email it as well. It would take minutes but the impact could be incredible. How many submissions could we send in if I sent it and then asked 5 friends to do the same. Those five friends each sent the email and asked five of their friends to do the same. The impact would be huge. Just look what happened on Facebook last week when we were asked to post our bra color for the day. It can be done. I have sent my email...actually I have a few more people to email yet. I know that some of them are forwarding the instructions on to their friends already. This can make a difference.

The cost of expanding the insulin pump program to adults in this province is minimal. There is little infrastructure required as most is already in place for youth. There is little training involved as there will most likely not be a lot of new pumpers. The benefit will be to those already pumping and to the young adults who turn 18 and find themselves with no means to continue their pump therapy. We need to protect them. We need to help those retirees who will no longer have their pumps and supplies covered by their insurance with their reduced "retirement plans". We need to protect our loved ones with diabetes. If we can improve their quality of care then we will reduce the burden that the health care system will see if they develop complications.

We can do this. You can do this. If you live in the province of Newfoundland and Labrador or know someone who does, send the following email to them. Have them send it to budgetsubmissions@gov.nl.ca Ask them to send it to their friends. Let's see real public pressure this time around. Let us help the government see sense!

Pre-budget submission 2010: Adult Insulin Pump Program

In 2007, the government of Newfoundland and Labrador became the third province to provide coverage for insulin pumps and supplies to their youngest residents. In 2010, we are asking this government to continue with this mandate towards superior provincial health care and extend this benefit to all citizens of the province living with insulin dependent diabetes.

It is estimated that diabetes will affect over 3 million Canadians in 2010. Newfoundland and Labrador will be the hardest hit as it has the highest incidence of diabetes in the country. The medical costs of those living with diabetes are two to three times higher than those who are not living with diabetes. Direct costs from this disease can range from $1000-$15,000 annually and the cost to the Canadian health care system is expected to reach $15.6 billion this year and $19.2 billion by 2020. By taking a proactive approach to diabetes care through insulin pump therapy, the government of Newfoundland and Labrador can begin to seriously reduce the enormous costs of this disease on the health care system.

When diabetes is managed with advanced treatment options such as basal/bolus insulin regimens, insulin pumps, regular blood glucose testing and Continuous Glucose Monitoring Systems, there is a very real decrease in the amount of time spent in the hospital and a very real decrease in the cost to the health care system. There is a 76% decrease in retinopathy (eye disease), 34-56% decrease in kidney disease, and 69% decrease in neuropathy (nerve disease) in intensively treated patients with diabetes versus those who use more outdated methods. Reductions in these diseases as well as a reduction in hospitalization for poor diabetes control adds up to a large fiscal savings.

Currently residents of Newfoundland and Labrador under 18 years of age are privy to much of this advanced treatment. The current insulin pump program allows the children of Newfoundland and Labrador who are living with diabetes to avail of the best medical care available to them. Sadly, when they turn 18 years of age they must sacrifice their care unless their personal finances allow them to take over their own health care costs. The reality is that many young people cannot afford to do this. They are put in a position where they must choose to leave the province to find either higher paying jobs or ones with more comprehensive benefit packages or stay at home and sacrifice their health with less effective insulin regimens.

The government of Newfoundland and Labrador has the power to change this in their 2010 budget. Expanding the insulin pump program to adults in this province will not have many of the costs associated with the initial program. Many adults who would avail of such a program are already insulin pump users and thereby removing the need for much of the training services otherwise required. In the most highly saturated markets, it is thought that only 35% of those eligible choose to use an insulin pump. In Newfoundland and Labrador, this translates to approximately 500 adults, 30% of whom would most likely have existing coverage. An expansion of the insulin pump program would therefore cost the government a maximum of $1.3 million per year in insulin pumps and supplies.

Insulin pump therapy has a huge impact on the lives of people living with diabetes. This group is at a high risk for depression but insulin pump therapy has been shown to improve quality of life and provide for a better self image.

We therefore respectfully ask that the government of Newfoundland and Labrador expand its insulin pump program to include all citizens of the province who have insulin dependent diabetes.

Sincerely;

Diabetes Advocacy

Back to the Grind

January 2010. Where did the time go? I know its a question we ask every year. You would think that we would have the answer by now! Well I don't have the answer to that question but I do have another question that has been asked before that I will be asking again in 2010...Premier Williams, please, please, please expand our provincial insulin pump program to include those over 18 years of age!!!

Yes, its that time of year again! Its time to roll up our sleeves, bring out our dialing fingers and our typing hands and get back to work. Last year we asked for pumps for adults. We asked that the Newfoundland and Labrador government follow in the path of the Ontario government. Ontario had become a "have not" province and yet still manages to fund insulin pumps for all of its citizens living with diabetes despite age. Newfoundland and Labrador declared itself to be a "have" province and yet new hospital parking lots took precedence over an adult insulin pump program. Now I have tried to park in some hospital lots and I will agree that there can be huge problems there but the reality of 18 year old men and women having to remove their insulin pumps because they cannot afford the supplies is personally a much more grave concern. Parking is an inconvenience. Insulin pump therapy and the benefits it provides has a direct impact on the provincial economy and its spending.

Individuals who are able to tightly manage their diabetes are less likely to end up in the hospital with emergencies blood glucose issues. Individuals who use an insulin pump can more easily handle jobs that involve shift work and therefore can be tax paying members of society. Individuals with diabetes who are able to maintain their treatment method after they turn 18 have less reason to leave the province to seek employment. They can stay home, work in their local economy and still afford to live. In a province that has seen record out migration for longer than it has seen in-migration, you would think that this would be a win-win proposition.

This program is not a costly one. Many adults living with Type 1 diabetes in Newfoundland and Labrador will already have some sort of pump coverage. Adults who were not transitioned to a pump as youth will often be reluctant to start on "new" therapies. Last year's estimates suggested that a four year pump program, including pumps and supplies for adults without any pump coverage (not including man hours) would cost the government approximately $2million. What is $2 million when compared to helping thousands of adults living in Newfoundland and Labrador?

At the moment, the reality is that young adults who turn 18 and go into the workforce or who have parents without insulin pump coverage are often forced to rely on donations or return to injections. This is not acceptable. Please help us to make the government aware. Let us know if you can help emailing MHAs, calling and getting the word out at pre-budget consultations and more. Lets make the 2010 budget be a budget that will assist those living with diabetes in Newfoundland and Labrador.