Diabetes doesn’t care how big your bank account is

This morning I read a blog post about a woman whose perspective was shifted when she met a homeless young man who was begging for insulin. She commented on how sad it was to live in a society where a person was not begging for money for drugs or alcohol but having to beg for the life saving liquid that he required to flow through his system just to keep him alive.

A few hours after reading this, I received an email from a woman who need help funding an insulin pump.  The coverage that she was sure she had did not icover someone of her age (over 18).  She desperately needs a pump but, like so many, cannot afford to purchase it and the supplies herself. She was curious to know if I was aware of any compassionate programs that could help her out. Unfortunately I don’t.

These two things brought me back to the ugly reality of diabetes–it remains a disease for the rich.  That sounds crazy because we know that diabetes does not care how big your bank account is. It really doesn’t care what type of car you drive, where you work, or how much money your grandmother left you in her will. Diabetes does not care if you are young or old. Diabetes just happens and we somehow learn to live with it.

The sad reality is that some of us can live with it more easily than others. Years ago I wrote about the reality smack I received one Christmas.  I spoke with a friend who had been able to get some test strips to help a family who had a child with diabetes and no insurance coverage.  Two hundred test strips meant the world to this family and would free up $200 for them to buy gifts for their children. I had spent that amount of money on one child without a thought and without having to worry about my son having enough diabetes supplies.

I live in a place that will cover most of my son’s supplies including his insulin pump until he is 25 years old.  That is something that I value because I have no insurance coverage and all of my son’s pump supplies would have to be paid out of pocket if I lived in many other areas of Canada.  The fact that we are lucky to live here also presents another glaring fact, because we are not amongst those who can “afford” diabetes, we are restricted in where we live in order to have the best of care. 

If we lived in Ontario, my son would have all of his diabetes costs covered and I have heard we could even consider putting him on a Continuous Glucose System without having to cover any of the cost.  If we moved to New Brunswick, my son would have no coverage at all and if we moved to British Columbia he would have some coverage.  I have no plans of moving anywhere but am pained that, in Canada, as with the rest of the world, if you have diabetes your ability to receive the best treatment options depend on where you live…or the size of your bank account.

If you can afford the insulin, the test strips, the glucagon kit, the insulin resevoirs, infusion sets, pump, CGMS, and sensors then you can efficiently manage your diabetes to the very best of your ability.  I am not saying that this will guarentee you the best control, but you will have the best tools to help you be the best artificial pancreas you can be.  If you have to pay for your “new” insulin (be it rapid acting or long-lasting) because your province’s formulary only covers things like Regular insulin and NPH then you have to watch your insulin consumption a bit more.  If you have to pay for your own infusion sets then you want to cry each time sweat or rough play causes a site to fall out before at least reaching day three of use.  If you have to pay for your own CGMS then you pray with each sensor that it will last and continue to provide data well after the supposed expiration date.

The items I have listed above are not luxuries.  Its not about having a Hyundai Accent versus a Jaguar.  These items keep our loved ones with diabetes alive, healthy…and ultimately active and productive members of the tax paying community. We have made huge strides in the past ten years regarding improved access to medical supplies and devices. I pray for the sake of my son and so many other people’s children that we make bigger leaps towards seeing no inequity regarding medical coverage in the future.

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.

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.