I don’t know how to say this without stepping on some toes but that’s not my goal here.
I don’t care very much whether T1 is an entirely different disease than T2 because that’s only relevant to disease management and that discussion is not moving us in any positive direction. I also think we are wasting our energy discussing which disease is worse and whether T2 is primarily a “lifestyle disease” or whether it’s a genetic disorder.
Folks, our lives are affected by diabetes. And, there are so many of us. What can we do to combine our collective influence so we can become an effective political force? What can we learn from other groups to advance our agenda?
Sure there is strength in numbers but we’re not unified enough to make much difference. I’m already sick of being a cash cow for the pharma companies. How about you? If we want a cure, I think we have to fund it and then we have to fight for it. How many times have we been told that the cure is just around the corner? Do you believe that, or in your heart of hearts do you ever wonder whether it’ll ever come and if it does - will you be able to afford it?
Come on, let’s talk about what we can do to help ourselves.
I don’t think the “pharma” companies are evil greedy entities intent on keeping us diabetic forever. That sort of perspective is unwarranted and certainly not productive. The prices of drugs and diabetic supplies are determined by a much more complex set of variables than the oft-suggested “let’s just charge a lot of money because we like money and diabetics have no choice”. People will continue getting Type 1 and Type 2 after (if) a cure is discovered, so the company that develops a cure stands to make untold billions in selling or licensing it. There is a lot of money to be made on both sides of a cure.
I also don’t believe that the differences are relegated only to disease management. Type 1 is caused by a severe autoimmune reaction and any eventual cure for Type 1 will need to address that problem. Type 2 is not characterized by this flaw and so its eventual cure will likely be markedly different. Take stem cell research for example. Therapeutic cloning may eventually progress to the point where a Type 2’s beta cells could be cloned and new cells infused to address the problem of an exhausted pancreas. This would be wholly ineffective for a Type 1 because our immune system would immediately destroy those cells.
Now in the sense that the public perception of diabetes does not generally include a significant distinction between 1 and 2, if it includes a practical distinction at all, I will agree that we do better in taking advantage of that to the greatest extent possible by working together. But honestly, I don’t see a lot of real common ground between Type 1 and Type 2 and I believe there very few opportunities where we could direct funding towards a common goal.
Sure, we can work together for a cheaper test strip, or towards fitness programs designed to counter hyperglycemia and insulin resistance, or for more affordable health insurance I suppose, but I don’t see much else. This is just my honest opinion…I realize it may offend some folks but I don’t apologize for it.
For many reasons, I believe that Type 1 and Type 2 diabetes should be given different names, and I believe it is very important to make the distinction. They are two completely different diseases with different genetics, triggers, treatments, and cures. Furthermore, I see how the “blurring” of the distinction between the two diseases has severe negative impacts for me. I have adult-onset Type 1 diabetes (sometimes called latent autoimmune diabetes in adults or LADA, except there is nothing “latent” about the disease I have) but because there remains the myth that Type 1 is a childhood disease, I and so many others received improper treatment. Type 1 also gets dismissed because it represents only 5 to 10% of the total diabetic population, but if adult-onset Type 1 diabetics are included in the statistics, then Type 1 represents 15 to 25% of the total diabetic population. We who have adult-onset Type 1 diabetes are the overlooked, ignored majority of Type 1 diabetes. “Unity” and not making the distinction between the two diseases has absolutely harmed me.
Type 1 and Type 2 are both terrible diseases, and I actually don’t believe one is worse than the other. I have a dear friend with Type 2 (who was diagnosed about 15 years after we became friends, so I have “been there” since the start), and I have learned so much by being there for him on this journey. So unity in supporting each other as human beings, but I am not being helped by being lumped in with Type 2 diabetics—it’s a disease that I don’t have. A cure for Type 2 will do nothing for those of us with immune-mediated diabetes.
Jason, I don’t see the pharmaceutical companies as evil either, but I think they are incredibly greedy. I spent the last year taking human A & P and came away very influenced by the rants of 2 different professors about pharma lobbyists, the politics of research grants, and the insane cost of drugs. If I have to decide who to believe based on credibility, I’m not buying into the $$$$$$ pharmas say they spend on R & D. I know it’s not cheap, but based on past Pharma behavior I have no reason to believe them now.
But that’s not really my point. A cheaper test strip would be nice, but so what? I think we need to start funding our own cure. Type 1 is very different than Type 2; agreed. Again so what? I had cervical cancer 20 years ago and the treatment that subsequently cured me was very different than the treatment my Father is receiving this afternoon for prostate cancer. And the lung cancer that killed my Mother had a different cause and treatment than mine and Dad’s. And even though there are many different types of cancer, folks still manage to work together to raise funding, awareness, and support. So why can’t we put aside our differences and try something similar?
Question: When we donate to ADA, etc… do they spend the portion that goes to research 80% to T2, 20% to T1? I doubt it. As a T1 I have no issue riding on the coat tails of T2 to get funding for research. All of Diabetes is seen as a lifestyle issue. I had to go into my daughters health class and correct the teacher on that. Those kids will never forget what they had originally been taught! As a diabetic, I have an obligation to educate those around me to the truth. I have an obligation to know the differences and similarities between T1 and T2 and be able to explain to the lay person. When educated most people will give more. Funding is our goal because it leads to research. I don’t care if T2 is cured first, it leaves more funding for T1. If T1 were cured tomorrow I would not stop donating to help T2, would you. No one should have to go through this! As an adult and father I would give everything I have to not have one more person have to start on shots or meds. I hate what we have and how we have to live—ALL OF US! Lets educate, get funding, and cure this ##**$^$ and move on to the next disease.
Your idea is interesting Yvonne, and even more so since it’s posted in the T2 fourm?!? I like the idea of unity - it seems to be an impossible task though. There is a constant battle between the types, and there are even more types now - ever heard of T1.5? MODY? LADA? Gestational? PreDiabetes? Big Pharma is not the reason for the division, it’s misundestanding and misinformation that causes it. This disease is ever changing and no one method covers all the bases. How can we help ourselves? We can accept our disease, manage it, control it, and share our experiences with others. We can agree to disagee as well. Funding a cure is not in my budget however, so I’ll have to bow out there. Also, I’d like a better definition of ‘our agenda’ before I jump on that bus. I’ll stand united with you nonetheless, and do my best to help others by at the very least offering some support and understanding. For United We Stand, Divided We Fall (lyrics from some song from back in the day) and I have no intention of falling because of diabetes!! One thing I always try to remember is that this disease is certainly within my control and unless I don’t take care it won’t probably kill me. There are other diseases that are eintirely debilitating and terminal. We focus on our own but there are far worse ones in my opinion.
Greed is a subjective assessment. Their success fuels more growth and since they are public companies they have a legal duty to do their best to post returns for their investors (shareholders). Furthermore, we’re talking about groups of individuals- a legal entity does not have emotions or the ability to express things like greed. Are you trying to paint all of the people involved in diabetes care today as greedy and untrustworthy? I think that is an overly broad generalization that has no practical value whatsoever. When was the last time a non-profit health organization created something as valuable as an insulin pump? Blood glucose meter?
I don’t believe the cancer analogy is a good one. The only thing Type 1s and Type 2s have in common really is the fact that their conditions dispose them to hyperglycemia. Cancer is a disease that varies not just in type, but from one person to another. There will never be a cure for cancer because of the individual aspect of the disease. The best we will ever do there is to come up with a way to discover the most effective treatment for each individual at the point in time their cancer is discovered. Cancer treatments today already include genetic testing of the individual and the tumors to determine the best medicines and therapies for that individual’s cancer. That method will expand over time to a situation where every cancer treatment is tailored specifically to the individual based mostly on genes. Diabetes just doesn’t fit that sort of mold.
It has been my understanding that the big drug companies not only spend on their own research but help finance university research and other such projects. I doubt it is a big portion of what we pay but a little is better than nothing.
I do have to agree with Jason that they will make a fortune if a cure is found. Right now my strips are paid for because it is cheaper for me to test then to pay for me suffering the later complications. Just think what they would be able to charge for a cure. Even if you take 10% of the total cost of a life time with D. It is quickly a big number.
I care that I pay more now for 1 vial of insulin then I did for 2 months supplies at dx. But I don’t care if they are making money. Invest in the company and be one of them.
I just changed the discussion to the General category in the forum, since it relates to a general topic. I want to remind everybody here that the main goal of this community is to provide and open space for people touched by diabetes to connect with other in pursuit of a healthy life through support and information. A place were people with diabetes are not lonely anymore. All types of diabetes…
“… you may think I am a dreamer, but I am not the only one…”
that is why I love John Lennon
To get there, however, it is great that we are venting our feelings out loud and respectfully. As complicated as they may be. This is only the beginning.
Just for the record, I think everyone should watch this. It’s pretty interesting, and addresses all the complexities of diabetes Declassifying Diabetes
I hope the link works, but it is a slideshow presentation from the ADA’s scientific session.
Now that I have calmed a bit let’s try this again. Not sure why this fired me up.
If we fragment into several diseases(new names would be required) we will lose a lot of the support we currently receive. I totally agree we are different. Unforunately we have to live with a latin based name given before all aspects of the disease were understood. We are different, but, we are also similar enough that gains in one area can possibly help elsewhere. And if we fragment we all lose. Smaller the group the less noticed. I never wanted to say anyone is less important or that anyone should be first, quite the opposite. Together we can make a bigger difference. I believe the first difference is to educate the general public about the truth.
I almost fell over when a health teacher told her 7th grade class, “Diabetes is caused by too much sugar”. She would not beleive my daughter when told this was a mistake. This is an educated woman who teaches health and only health to about 210 kids a day. Wrong message. Education changes opinion. If people know the true story I believe they would give more. Research needs money and just as important qualified, motivated people.
… very lengthy presentation but very interesting! I was originally diagnosed as type 2 (but without the typical type 2 characteristics of overweight/inactive and insulin resistant). But when I was tested for GAD antibodies, they were high but not significantly. So I’m not sure where I fall along the type 1 - type 1.5 - type 2 continuum. I found the slide show (71 slides) thought provoking and informative. Thanks for giving us the link!
There are a couple if issues that need some thought. First, I don’t have any love for big pharma, but I have to admit, they have brought us pretty far. We have to remember the days when diabetics died 3-5 years after they got the disease. Want to know, why we are fighting, reitinopathy, nureopathy, and all the rest? It is because we are living longer. It is just the way things are and frankly given my current situation or the alternative, I will take my current situation.
Now, having said that, I think we also have to face one serious and untalked about truth, there will not be a cure for Type 1 diabetes. Instead, what we might see in our life is vaccine to prevent the disease. It will likely not help me, or other type 1’s, but it should help our children and our children’s children. Frankly, I am more interested in that than a cure.
In terms of type 2 diabetics, I do expect a cure. i do think we need to pursue a cure for type 2 as well as a vaccine. I jsut do not think we should confuse the two.
i appreciate the discussion, but lets be sure we get the possibilities right. I am for a vaccine and to that end, if we are angry about it, we should join research studies around the country. these studies are our legacy, just as the pump is my mothers legacy, and insulin was my aunts legacy. Neither of these women survived long enough to benefit from their legacy, But we all would be far worse off had they refused the request to join a study.
Rick I also find it hard to believe that a cure is close. 30 years of it is 5 years away tempers your opinions. I just hope it isn’t like the Vikings---- get to the Superbowl but never win. But we get excited everytime thinking this might be the one.
I believe that it will happen, but I have hope…If not for me, for my children and grand children! I will never give up hope. Maybe I am a dreamer…I will continue to be one!
Pharma and company, doesn’t have to do squat for Diabetics but I’m Glad that they have created/manufactured medications for us. Otherwise we’d be Kaput. Although I do hope that the prices become affordable for all the drugs for everyone. A Big one, I know. But it has to be.
When it comes right down to it, every Type of Diabetes is the same. Our goal is to control blood sugars so that none of us gets badly maimed…or dead.
There is a lot of fund-raising and donations towards Diabetes here and in the states. Whether it be walking, running, biking, sales, rowing, telethons, donatons, etc. It is most likely the same in other countries. Where some of the money is going is another question.
I heard all of my Life that a Cure is just around the corner. Well, I stopped looking around the corner years ago. Since I know that there will be no Cure for me. I’m Fine with that. Not long ago, I turned the Big 50 and I’ve gone over every detail of my Life(that I could remember ). In so many ways, I’ve been more fortunate than many healthy People that I know. I’m Glad I made it this far.
Anyways, I will always hope and pray for a Cure for all types of Diabetes but especially for the Kids. I believe it will happen. And God didn’t cause this mess either.
I agree that there are definitely more than two ‘types’ of diabetes. But if we are focused on a cure for diabetes, then we need to understand the CAUSE of diabetes. For me that is why a distinction between types of diabetes is important. I think the evidence in the presentation rather told me that many people with autoimmune diabetes are actually classified as having insulin resistance. I think that these names are more useful in understanding diabetes. Also, as a clarification, the presentation talks as if GAD antibodies are the ONLY antibodies that can cause autoimmune diabetes. As far as I know, there are multiple types of antibodies (types of type 1 diabetes ?!?!). There are also multiple causes of insulin resistance.
I’m not sure if there is research suggesting autoimmunity can also cause insulin resistance. I think distinguishing autoimmune diabetes is important because (as others mentioned) a cure for autoimmune diabetes will likely be VERY different than a cure to other forms of diabetes. Type 1 diabetes is one of many autoimmune diseases that are flighteningly on the rise. We don’t know enough about what causes them and them seem to come in groups (check out discussions in this community to find out how many autoimmune conditions we all have: Hashimoto’s, Celiac, Graves, …). Also, people who autoimmune diabetes are missing more than just insulin. We are also missing Amylin (now can be injected with Symlin) and c-peptide, both of which protect our bodies from the complications that we all fear. Even with good control, these complications pose a real threat. That scares me.
I know much less about the causes of insulin resistance, but would be happy to learn.
I don’t think that we can declare that one form of diabetes is “worse” though the treatments and effects on lifestyle do vary. I agree with Yvonne in that we can support one another, just as any people who struggle with something can support each other. That is why this community exists.
But in order to educate more people about diabetes, I think it is important to clarify that what currently unites diabetics is a common symptom (high blood sugar) and we all might understand more about the disease if it was classified by common causes (autoimmune, insulin resistance, and others?).
). In so many ways, I’ve been more fortunate than many healthy People that I know. I’m Glad I made it this far.