Sometimes things are done that just leave me scratching my head. Today is such a day. The best part is that you can do something about it, and to be honest–this just makes no sense to me whatsoever.
The FDA is planning a series of ‘patient meetings’ over the next five years to better understand specific diseases. It astounds me, and is a glaring mis-step, that diabetes is not on that list. That’s correct. Diabetes will not be included. My guess is that diabetes is not on the list (and my guess only) as I look at the list of the other diseases included is that someone at the FDA believes that they have all the necessary information needed to make decisions moving forward.
This is a mistake.
In the Diatribe sponsored petition, they state;
“We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.”
These issues should be listed as very important to all of us and if you add Ed Damiano’s Bionic Pancreas (which is somewhat different from the AP utilizing both insulin AND glucagon) and those many organizations looking at biological cure possibilities that may, and will absolutely, be up against hurdles in the FDA process; everyone who has a loved one with diabetes, or has diabetes, should sign this petition.
We need to be given the opportunity for not only us as the general public; but experts like Ed Damiano, Dr. Camillo Ricordi, Dr. Aaron Kowalski, Dr. Bernhard Hering, and so many more to join together to be heard and stress the importance of both treatment options and cure related focus that needs to be addressed by the FDA in a manner that is both expeditious and comprehensive in scope.
The examples given in the Diatribe (owned and operated by DOC’s own and wonderful, Kelly Close) petition are only but a few issues in the ever-changing diabetes landscape that will be facing the FDA over the next five years, we cannot; and should not; allow our collective voices to go unheard.
If diabetes has any importance to you whatsoever (and it is my hope that just reading that sentence annoyed you because we all know that it is hugely important to all of us) in better management tools, medications, insulins, and cure related research—I urge you to sign this petition.
This is crucial for all of us to join together. Type 1; type 2; LADA, Gestational and any other form of diabetes you know of; our voices MUST BE HEARD.
Under the comment section of the petition, I wrote:
With so many aspects of diabetes that will be before the FDA in the near future; it is too crucial to be detached from those who are in the know about matters of treatment and potential cures. It makes no sense to omit those active in this disease state to assist the FDA. The diabetes community should be included in the upcoming FDA ‘patient meetings’.
If we can not convince the FDA how crucial it is that our voices be heard; the silence will be deafening. Period.
I am a diabetes dad.
6 replies on “NEWSBREAK WARNING: Do not—DO NOT Let our Voices Go Unheard. Read, Act, and Share.”
FYI: This is my comment posted to the petition site: As a parent of a son and daughter who both have Type 1 Diabetes and as an advocate for diabetes research funding who has invested four decades of my life (and my family’s life) in support of fundraising events (walks, galas and the ride to cure diabetes) I find it appalling that diabetes is not included as a disease to receive focus through the FDA patient meetings.
Diabetes is a killer that disrupts quality of life for all involved (patients and family)… and needs to be given attention in everyway possible.
Please include diabetes on the FDA meeting docket for 2013. We need a CURE and access to affordable and quality care and products while searching for a cure… ranging from finger sticks (which are obscenely expensive) to an artificial pancreas.
Well said—-VERY WELL SAID!
Important question… if FDA does include Diabetes, how do we ensure they are educated correctly on the differences of Type 1 & Type 2. Who is called upon to educate them in this process? If it’s going to be done, it has to be done correctly or it could actually set us back
It is an entire list of issues—-these meetings will be open for anyone to attend….it would be my hope that all who have a topic of interest would attend. You will also notice this statement included in the list of activities on another disease state registration form, where it states:
There will also be an opportunity for patients, patient representatives and others to provide comments on issues other than topics 1 and 2 during an Open Public Comment session. Sign up for Open Public Comment will take place the day of the meeting.
My guess, should we be successful, this opportunity would exist for diabetes as well. Stay tuned.
ref: Important question… if FDA does include Diabetes, how do we ensure they are educated correctly on the differences of Type 1 & Type 2. Who is called upon to educate them in this process? If it’s going to be done, it has to be done correctly or it could actually set us back…
feedback: If the FDA does NOT include diabetes – then there is absolutely no chance to use this venue as a tool to educate and advocate for our loved ones. It’s a “Squeaky Wheel gets the grease” situation or opportunity.
Signed and shared. Thank you for all you do!
My story is probably no different from a lot of parents who have a child with Type one diabetes, although my son who lives with type one, has many stories that are different from a person who does not have to live with diabetes in their lives. Diabetes is one disease that needs to be added to the agenda. I am asking, as a mother, that the FDA sponsors a patient meeting focused on diabetes. It’s not just about my son, it’s about all the sons, daughters, mothers, fathers, aunts and uncles, grandchildren, families and friends who live with this disease on a daily basis. All of our voices are united and we stand as one as we ask the FDA not to forget about Diabetes. Why? Because my son is my hero.