Please tell me what I'm doing wrong here because so far it makes zero sense to me! I've posted two discussions with the intention of uniting diabetics and those close to us and to choose a date wherein we make a phone call to a local news channel requesting media attention for Dr. Faustmans research to cure T-1Diabetes. The next day call our government reps asking for them to support the research financially.
TWO PHONE CALLS to cure this disease. Both discussions received ZERO 0 comments.
Is it The research that you don't like and if so WHY?
Is it that you don't want this disease to be cured? (I doubt that.)
There were 636 comments/replies to the discussion "Cured in our lifetime Yes or No?"
And yet Zero replies when it comes to taking action? Come on people UNITED WE STAND.
Sorry Jethro, I have contacted Dr. Faustman's lab and have an appointment in June of next year to have a blood sample taken. At the same time I have very carefully read over her scientific papers and the critical reviews of her work. While I do think that her work is promising, 2 phone calls will not cure diabetes. 2 phone calls will hopefully call attention to her work and the potential it has for helping at least some D's either by forestalling the onset of the immune response or by stalling the immune response in time for the remaining Beta cells to start produsing insulin. But I do think D's in general see a statement like TWO PHONE CALLS to cure this disease and they automatically shut down. We have been told this since we were diagnosed. There will be a cure in my lifetime. We are now a cynical bunch and are unlikely to believe it til we see it. The fact that Sanofi Pasteur the company that produces the BCG vaccine has halted production and does not have a time frame for when the vaccine will be again available speaks volumes for the "maintain the herd" mentality of big pharma. Why should Sanofi Pasteur produce something to cure us when Sanofi Aventis is making money hand over fist providing lantus to maintain us ? So the story is even if BCG is the be all and endall there isn't enough around to even treat the bladder cancer patients who use it instead of losing their bladders ! So as much as I want this to work, at this point in time all I can do is offer my blood sample next June. Theracys-BCG is currently unavailable due to a manufacturing issue.
You may contact Sanofi Pasteur, Inc. at:
1-800-VACCINE (1-800-822-2463). http://www.telegraph.co.uk/health/healthnews/9389564/Major-cancer-t...
Sanofi Pasteur has TheraCys 81 mg vials for intravesical injection on back order and the company cannot estimate a release date.1
Jethro - I salute your energy that you want to infuse into diabetes advocacy. Don't misinterpret the reaction or lack of reaction here. I'm often surprised at what people want to respond to and what they ignore. Sometimes I feel it's often the lightweight shallow issues that receive the most responses. Like what color do you want for your next insulin pump or CGM.
People only have a limited amount of time/energy to devote to a place like this. They're not only busy with trying to take good care of their diabetes, they're also busy with jobs/careers, families, hobbies, school, and other interests.
I, too, am interested in Faustman's research. I particularly like her hypothesis that our beta cells are simply suppressed by an errant immune system and if the bad actors in the immune system are taken out then perhaps normal blood sugars would result. I've sent Dr. Faustman small donations in the past and I will continue to follow her progress, as slow as it seems.
Don't get discouraged. It's hard work to actively advocate for any good cause!
Thank you for the reply. Media blitz is what I was going for...Create a quick buzz and get people thinking and asking questions about this disease. As T-1 diabetics we are very aware of how much the rest of the world doesn't know about this disease. When people talk to me about diabetes they usually say that one of their relatives is diabetic, then I ask them T1 or T2 and even after I tell them the difference they rarely have a definite answer. Media coverage could help educate people.
Dr. Faustmans research lends hope at least in my mind that this disease could be cured. They still need aprox 12 million $ for the phase two trials. If there are one million T-1s in the US alone and each one gave 12 dollars the finances would be covered. As far as the manufacturing issue goes, would'nt it be reasonable to think that this GENERIC vacine could be made at a different facility by a different drug company. If we have to unite and create a drug company of our own we could all donate ten or twelve bucks to that cause as well. If we want this disease cured we need to be aggressive. There are a lot of us T-1s and there is strength in numbers. And most of what I've seen on this site makes me think that we are relatively intelligent people. SO, a large number of intelligent people united for an attainable positive goal, that's a team I would bet on.
Thanks for listening and thanks for the reply.
I know we are all busy and that's why I want to find a way to get the biggest bang for the smallest effort. Having a united group of people willing to share ideas on this is exactly what we need.
Hate to say it, but I have tried to get local news to broadcast REAL stories about T1 for years with absolutely no results. I get a pat answer back that says "we run stories about diabetes frequentlty.." but never an answer to the "getting the information right" part.
The lack of responses has nothing to do with the will for a cure; it has to do with disenfranchisement with the media and the past "presentations" of diabetics.
No it is absolutely not for the States only. I reference things like government officials and elections etc..knowing that those things differ depending on the country you live in, but I have to start with what I know. I would love to be educated on how your situation differs from mine and how you would like to approach this in your area.
Give a quick statement for people to give to local news media & to elected officials. There's a chance for more involvement when people know exactly the who, when & what.
Spock; It is frustrating trying to get news stations to do something good. That's why I want us to call on the same day. Imagine if we all asked five people close to us to call two news stations on the same day asking for media coverage for this research. One or two phone calls they might blow off but if hundreds, thousands or better yet millions of us each made one phone call on the same day the media blitz would happen. The topic would be hot and hot topics get the most support.
At this point I propose Tuesday November 13th, that's two weeks from now...long enough to ask our friends and family to get involved. Maybe someone has a better date? Wednesday vrs Thursday ...I'm just glad to see us moving forward on this.
I have to say that I'm not a huge fan of Faustman. She has become like every other potential cure. There's the big hype in the beginning. And then not much happens. I have seen posts similar to yours for years jumping on the bandwagon to try to get her more funding. Have her results even been reproduced in another lab? I'm an almost 50 year veteran and I'm cynical about being told about an imminent cure. It never happens. Every 10 years something "promising" hits the airwaves and then nothing ever comes of it.
Gerri; Well put.
November 13th Tuesday, phone calls to local news stations made by us and our friends and family.
Thursday November 15th we all contact an elected official reuesting financial support for the research.
I think the two days between media contact and elected offials contact would be enough time to allow media coverage and that will make the elected officials want to be involved. It would be better if we could do this prior to November 6th (election day.)
How about free insulin. If contraception is going to be free, then a life saving drug should be free. Unfortunately our voting base isn't large enough.
I personally agree, sorry your reproductive decisions shouldn't be paid for by my tax dollar. You want contraceptives go out and get it yourself. You have sex, get pregnant, and are not in a position to have that child, then maybe you should have thought about that before having sex. Sorry if I sound cranky, but there are sooo many people out there with SERIOUS medical problems who cannot afford their medications. Your reproductive decisions are just that its a CHOICE YOU MAKE. Having cancer, diabetes, or so many other diseases wasn't anything any of us CHOSE to have.
I'm nervous about starting a new post but it's worth a try. You got any suggestions for the title? I tried going positive and that didn't get any replies, when I asked "what am I doing wrong?" everyone got on board LOL..
Maybe we should call it Diabetics gone wild or Diabetic Gangham style....we could show videos of us having seizures while listening to pop-music....
Yea, think it's worth a shot to post including a brief message people can relay to the media & elected reps about a week before the due date. Ask people to post on Facebook & Twitter.
Understand the frustration of not getting many responses. "What am I doing wrong?" is a catchy title--good job.
Hmmm, let me think of a title. Maybe someone else here has a suggestion. Really like Diabetics Gone Wild.
I agree w/ Jim that insulin and test strips should be covered and should not be perquisites of affluence. Pumps and CGMs are probably within the capabilities of many places with the will to implement a moderate amount of medical care for our citizens. It doesn't appear that the US is at that point just yet. Diabetes is a very unique disease in that it amounts to a huge time and money sink for many of us. I am totally bought in to "damn the torpedoes and blow whatever $$$ on diabetes gear, out of pocket test strips. I know that not everyone can do that.
I'm not sure that it's realistic to run things with sex being a perquisite of wealth either but we could probably argue about that forever! Sex is a public health concern regardless of what some members of the political group may feel. There was a great article on CNN yesterday explaining how the roots of many social behaviors are economic and postulates that with a deep safety net in place, Germany manages to have a very low rate of abortion, unlike the US, where "behavior" and "paying for it" often crop up in what amount to public health decisions. http://www.cnn.com/2012/10/29/opinion/frum-abortion-reality/index.html.
I would make similar arguments about diabetes (without any statistics to back myself up, as usual...). We have what I consider to be a pretty low standard of care, "aiming" at an average of 150 mg/dl while insurance companies, including Medicare and Medicaid, look to "save money" by shaving off coverage for test strips. It doesn't make any sense and ends up costing us all (PWD and everyone else...) in the long run, keeping people with diabetes down because the health system is overly conservative with their approach to diabetes. Low expectations produces low results. Or high results, if we are talking about BG! This may be why I'm not at all engaged in "curism" as I'm interested in getting better results out of the tools I've got to work with NOW more than what seems to be "rolling the dice..." on various betting options.
Dear Clare, November is American Diabetes Month, and we have a great opportunity as Massachusetts Diabetes Advocates to let our legislators know diabetes is an epidemic in the Commonwealth they cannot ignore! Please join the American Diabetes Association and other concerned organizations for a program to heighten awareness about diabetes and its impact on Massachusetts’ families.
The event, titled Changing Diabetes Day, will be held on November 14th from 9:30 am – 11:00 am in Nurses Hall at the Massachusetts State House. Hear from Diabetes Advocates like you, Senate President Therese Murray, and others before having the opportunity to visit your legislators’ offices to share critical information about diabetes with them.
Diabetes poses a burgeoning threat to individuals and families across the Commonwealth. Do not miss this opportunity to let your voice be heard by attending Changing Diabetes Day!
You can RSVP for the event by clicking here.
To access information on the event and RSVPing, click here.
Thank you for all that you do to Stop Diabetes®.
Sincerely,
Stephen Habbe Massachusetts State Advocacy Director
American Diabetes Association
P.S. Don’t forget to sign the petition to Stop Diabetes®: www.stopdiabetes.com/signthepetition
Jethro I received this email from ADA regarding an event at the Massachusetts State House in conjunction with November being "Diabetes Month" in America. You might was to get in touch with this advocate ? I know it's the ADA but still it couldn't hurt and they have more contacts than we do personally
