Monday, April 4, 2011

2005 until far have we really come?

Last summer we were approached to ask if we would be involved in the CDA's follow up to its 2005 Diabetes Report.  Of course I said yes (my son said, "this is the last time.").  I thought that quite a bit had changed over the years.  We were now getting insulin pump coverage for my son--until he turns 25.  We had a provincial drug plan to cover strips and insulin for the day when he is no longer covered by his father's plan.  Life was good right?

Wrong.  Yesterday I sat down and read the report in anticipation of today's release. The first thing I did was go and check to see how everyone else was doing.  With the first release, I had the opportunity to meet many of the wonderful people who were profiled.  A few of them I have touched base with now and then through social networking sites.  What was new with the other people, I wondered. Had their advocacy efforts paid off? How were they looking these days? (My son had changed a lot since his last picture!) I was saddened to see that three of the original interviewees had passed away.  I had met two of them.  They had experienced extreme difficulties in affording to manage their diabetes.  Their deaths, while sad, were not entirely unexpected.

After looking at many new faces and a few familiar ones, I tackled reading the the report itself.  What had changed? What areas still needed work? Had our efforts paid off? I was rather disappointed with what I saw.  While our own province was one of the few that covered insulin pumps and supplies, and was only one of two that provided even a small bit of coverage into adulthood, there was still horrible coverage for insulins.  Despite the many "new" insulins available on the market, only regular insulin remained approved for use.  Other insulins can be prescribed but you must have special permission to use them in order to have them covered under your provincial drug plan.  This was crazy.

Five, almost six years of serious advocating by so many people that I know and we have only made a few baby steps forward.  When will governments listen? When will they learn? They continue to fret about the overburdened health care system, but refuse to take the steps that will help them in the long term.

Can you imagine if insulin pumps, CGMs, rapid acting and long lasting insulins were all covered under your health care plan? You would have the tools available to you to manage your diabetes to the very best of your ability.  Instead of paying for lengthy hospital stays or kidney dialysis, the government could pay for more diabetes education and continue to work towards the prevention of complications.  Complications cost so much more than basic diabetes care.  Its so frustrating that they just never seem to truly grasp this concept.

The other night I was asked if I ever want to give up and walk away from it all--delete my blog, tear down my website, and ride off into obscurity. It really doesn't provide me with an income and it takes up so much of my time.  Some days I think about it.  What am I getting out of it? Am I making any headway? Do I make a difference? As I have said before, those times are usually when I get an email or phone call that let's me know that I am making a difference.  Reading this report however makes you wonder. 

So many people have worked so hard and we have seen so little change.  I guess on the other hand is that fact that we have seen some change.  When the 2005 report came out, I did not know where the money would come from for my son's next insulin pump.  My family had paid for the first one.  Today, I am confident in knowing that he will have a pump until he is 25 and I have 11 more years to get that age upped to "adult coverage" with no age limit.  Its a huge battle.  Its a tough audience.

I pray that this time, some of the information in the report will get through to the powers that be.  We need change.  Our loved ones need assistance.  They deserve the best health care that Canada can offer.  We deserve to have the economic burden of complications reduced and therefore allowing our tax dollars to go further and into other areas.



    Thank you for all your hard work!! and always remember just keep swimming. One day we will all make a difference. Maybe not the change that we expected but I believe that we all have this calling to work together and get our story out and in that we will make change...even if it is for just one family! A little change goes a long way!!

  2. Here is the link to the report...we are there somewhere :)

  3. Thanks so much Nicole! I know I have helped create some incredible changes and there are so many more for us to make.