Tuesday, June 30, 2015

2015 iCan Summit - Kids Advocating for Kids in Healthcare

Oldest daughter shortly before applying for iCan.  She will graduate in 2019 and hopes to become a medical doctor. 

If you read my last post, Diabuddies is still going strong.  We are now on day two and the prescription of respite seems to be working.  Sometimes in the midst of the maturity that both girls have, I forget that they are still young and that T1d is very much a full-time job.  As it stands right now (and at this exact typing moment), oldest daughter has even asked for a few minutes of Diabuddy support today.  Sad, but true.  I think BOTH girls needed a bit of a break.  #teent1d  #curet1d

Getting ready to tackle Capital Hill.

What I started to post before the Diabuddies moment was a look back at our week in Washington, D.C. and our oldest daughter's work with iCan.

If you are not familiar with iCan, it is a newly created global organization designed to help provide a voice BY kids FOR kids in health and medicine.  The reality is that so much of what happens with healthcare is done with very little (and mostly none at all) thought to what kids want, think or desire to help ease their visits.

From the iCan.org website:
iCAN is a worldwide consortium of children's advisory groups (e.g., KIDS Teams, Young Person's Advisory Groups, and similar organizations) working together to provide a voice for children and families in medicine, research, and innovation through through synergy, communication and collaboration.

Delivering her opening remarks to all of the attendees at iCan.

In a nutshell, iCan was put together by Dr. Charles Thompson.  Dr. Thompson had created a group called KIDS Connecticut around a year and half ago.

From the KIDS overview on the iCan.org website:
The Kids and Families Impacting Disease through Science, or KIDS initiative is an advisory group of children, adolescents and families focused on understanding, communicating and improving the process of medical innovation for children. KIDS is sponsored by the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology (SATT) in collaboration with the CTAAP Chapter and children's hospitals.

As Dr. Thompson quickly discovered, there were smaller children and teen advisory groups sporadically around the world, doing similar things.  He reached out to a few of the groups and formed a small network.  In the winter of last year, he reached out to a few more and came up with the idea to hold the first ever #icansummit2015 in Washington, D.C..  In this way, all of the groups could meet, share best practices and take important learning home to continue advocating throughout the year.

Oldest daughter became involved with iCan through her own University of Michigan Mott Children's Hospital.  Last year she applied to join the Teen Advisory Committee (TAC) at Mott.  TAC was created a few years ago to help the hospital garner a voice from teens about what they liked during clinic or hospital stays.  The teens have worked on projects such as picking out new board games, creating a teen night and designing a website.  It is part social and part community service.  Overall, the teens have loved being involved.  

The opening remarks audience.

Oldest daughter fell in love with the concept of having a voice to help guide doctors and researchers to better care and jumped in with two feet.  Shortly after joining the local TAC, she was elected to the role of TAC co-Chair with her friend, Elizabeth and then, both were chosen to represent their teen group at iCan.

Along with a speech, the TAC delivered a 3-minute video.

I've spent quite a bit of time over the past two years actively advocating for patient/family-centered care, so it has been wonderful to see our oldest actively engaging in the same way.  One aspect that I love is that not only has she found a way to speak up (typically she is a rather quiet child), I also love that this has been filled with enrichment opportunities.  She can actually participate in what she has only read about in textbooks.  Talk about bringing history to life.

After the visit to Children's National Medical Center.

During this trip to Washington, D.C., oldest daughter was able to learn how a bill becomes a law (which made me want to sing an old 70's tune) and apply that process to the many, many hurdles that occur in pediatric medicine (like smaller population, less pharma incentives, less profits and the risk of harming children in the process).  She quietly voiced her frustrations and explained that she has watched her sister and herself see almost no change in the 9 years that Type 1 Diabetes has invaded our home.  She then said, "Insulin is not a cure.  This is just my life support.  I still want a cure."

Playing the FDA game - new medicines do not happen quickly or cheaply.  

Oldest daughter listed to issues presented by the American Academy of Pediatrics, Food and Drug Association and even the Canadian Health Care.  She also heard from Unicef and was able to provide feedback on a document to see if it was legible to teens, families, doctors and researchers.

Tasked with recording the outcomes and speaking out as to why it is important to have research.

On the last day, oldest daughter was asked to seek out elected government officials and explain why pediatric healthcare legislature was so critical.  Together with her friend, Elizabeth and several international attendees, they walked through the Hart Building to find our two Michigan Senators.  The first was Senator Gary Peters, whom graciously held an impromptu meeting in the lobby and patiently listened to both teens and their TAC leader as they explained the importance of funding pediatric research. Senator Peters acknowledged their plea and invited them back to his office to meet with an aide and to exchange contact information.  It was beyond exciting for the teens to see how they had a voice and could exchange information that might possibly lead to change.
Emotional moment on the realization that she has not seen a cure or enhanced drug during her lifetime for T1D.

That same process was repeated at Senator Debbie Stabenow's office and later, at the offices of Debbie Dingle and Mike Bishop, two state of Michigan Representatives.

Outside the Supreme Court, where less than 24 hours later, same sex marriage would be approved into law. 

For oldest daughter, this underscored the importance of voting, something that I have been personally teaching to both of my daughters since they were old enough to walk.  It also helped for her to see the importance of responsible medical care.  For years she has said that she wanted to be a doctor.  If you asked her at any point prior to iCan, she would add on "Endocrinologist".  After iCan, she tentatively explored the idea of becoming a medical researcher.

Senator Gary Peters listening to our iCan members explain the importance of his vote on pediatric medicine.

As we settled onto to our plane bound for home, oldest daughter, turned to me and said, "I can't believe that I didn't understand how slow the process is for creating medicine that can help kids.  I remember when I was little and thought a cure was something that we could just buy.  I wondered why we didn't do that.  This week I learned that I might need to do research to make it happen.  It's not happening fast enough, mom."


All I could do was agree.

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