What can diabetes advocates learn from successes of the HIV/AIDs movement?
By Adam Brown
by Adam Brown, Hannah Deming, Nancy Liu, and Kelly Close
twitter summary: Dana Ball of @T1DExchange delves into his past as an HIV/AIDS advocate and gives insight on what people in #diabetes can learn
short summary: We had a wide-ranging interview with two of the pioneers of the Helmsley Charitable Trust’s (HCT) Type 1 Diabetes (T1D) program (which gives $50 million a year to type 1 research, treatment, and services): HCT trustee David Panzirer and T1D Exchange CEO Dana Ball. In part five of our interview, Dana delves into his impressive work as a patient advocate in the HIV/AIDS campaign and David and Dana share what we in diabetes can do to become better advocates.
Part 5. What can diabetes advocates learn from successes of the HIV/AIDS movement?
KELLY: Dana, you have had an amazing career in advocacy that started with the AIDS movement. Can you tell us more about that?
DANA: I grew up in poverty in a highly dysfunctional family in southern Maine, where no one had a college education and most people did not do well. But somehow, I knew I was different and I knew by the time I was six or seven that I had to get out of that family because I saw the world in a very different way.
And so from a very early age, I saw windows and not walls. I think this is what makes me different – it served me well in the HIV/AIDS era and in type 1 diabetes with the Exchange. It’s because of this, I see opportunities and I see solutions. That started as a small child. I left my family when I was 14.
Fast forward. I was 23 years old and I had a nice life in southern New Hampshire. I will never forget the day a friend of mine said, “Have you read this?” and handed me a Newsweek magazine. It was about HIV. I put down that magazine and I thought, “I must have this virus. I will be dead in a few years. You can’t test for it and there’s nothing you can do.” And the whole world changed. And so I did what everyone else does: I became a patient advocate.
Fast forward to 1990. In seven years, some of my close friends had died and many were HIV-positive and getting sick. Research was moving forward. A lot of the ACT UP community was out demanding solutions, fighting for rights, fighting for access to whatever therapies existed.
Then in 1996, the cocktail came and it was remarkable. This was just 13 years from 1983 to 1996, from an unknown disease to the cocktail going into the patient population. These beautiful young people were dying. They got very thin and it was a horrible death. What was remarkable was when the cocktail came to market, these people started gaining weight and it all went away.
ADAM: It’s like when insulin came out in 1922…
DANA: It just stopped, right? And it’s unbelievable to think in 13 years, we went from a potential pandemic to a controlled chronic disease and most of those people are doing well today. I say this whenever I talk to someone, “If I had to choose today between HIV and type 1 diabetes, I would choose HIV because it’s two pills at bed time and you can live your life, no testing, monitoring blood sugars, or dosing insulin 24/7/365.”
KELLY: How do you look back at being really involved in advocacy? How easy or hard was it to be raising money, given the discrimination and the stigma?
DANA: Whether it’s type 1 diabetes, HIV, or any other disease, there’s the same psychological process that people go through and there are stigmas. There’s the initial shock of the diagnosis and then it’s somehow trying to learn everything you can about how you’re going to deal with it. You eventually get through the process to acceptance. You manage disease.
I think you have to really appreciate that the person who gets a disease is still that person, whether you’re a professional runner or a pianist or an engineer. You just also happen to have HIV or cancer or type 1 diabetes and you learn to accept it. I think most people get to acceptance, but you also have to have hope – I think hope is part of medicine. It helps keep you going. It gives you the ability on those down days to hopefully find a place that says, “There are people working on this problem and I can be part of the solution.”
KELLY: What do you think that all of us as diabetes advocates can learn from the HIV/AIDS movement?
DANA: With HIV, it’s easy to romanticize about something that happened a long time ago. I think it was a once-in-a-lifetime phenomenon. The gay pride movement was just starting, but growing quickly. The community was really starting to come together and there was more acceptance and less fear. It was an important time in the history of the gay community. The disease came and they got really mad. This disease came and started killing them at a critical time when suddenly they thought the future was very bright. They were well-educated, they were successful people, and they got really angry and they didn’t have to worry about family constraints; there were no children and they were freer to get involved and demand action. I think getting involved and demanding action is the common thread for diabetes advocates. Type 1 diabetes can’t be a spectator disease.
KELLY: So was the AIDS movement just unique? Or are there any lessons to be learned that we can apply to diabetes? People say to me, “Why aren’t you guys marching on Washington?” In reality, it’s a lot tougher.
DANA: It really was a unique situation. I mean, if it happened a decade later, I don’t think there would have been as big a response. It was just the perfect storm: acceptance was slowly increasing and the gay community saw that this was going to push them back in the closet. They said, “This is not okay. We need to deal with this and no one is going to do this but us.” With diabetes, there are other people that kind of do things for the community. I’m afraid our constituents may think advocacy is someone else’s job. The world has changed a lot. I think it was about survival as a community and the disease became the mechanism to activate the community.
KELLY: I almost think that there’s that urgency happening in diabetes. People are dying, and we have government institutions that think diabetes is not a dangerous disease. It is a dangerous disease, not exactly in the same way, but maybe there are some parallels. If we need some urgency, perhaps it makes sense to share data from the T1D Exchange on things like death from severe hypoglycemia.
DANA: I don’t think that the severe hypoglycemia death data is enough alone. You can’t compare HIV/AIDS and death without therapy to anything, including diabetes. It’s impossible. With AIDS, it was about a community going backwards. It was also an important time in the history of the gay community; Rock Hudson and celebrities had the virus and they suddenly came out. The government didn’t care about this population. The country didn’t care about the population. No one was helping them, so they lit the world on fire. We were relentless about getting drugs moving forward, getting the companies involved, and getting the NIH involved to support the studies and test the therapies.
DAVID: I agree that there isn’t a sense of urgency amongst those with type 1 diabetes. It seems like those with the sense of urgency are the parents of children living with type 1. The fact is we need to do more about the perception that type 1 is a safe and managed disease – because it is not. We have a large population of people who have type 1 diabetes who are no longer engaged in their own disease. I can’t tell you how many adults with type 1 say they were told there would be a cure in five years. This kind of hype has caused people to tune things out, and, in my opinion, this makes it worse. A lot of people just do what they do to get by, paying very little attention to new tools and devices that could make their lives easier. We need to figure out how to reengage these people and get them to try a pump or CGM or smart pen, which will ultimately drive more dollars to fund more innovative solutions.
KELLY: If you had the power, how would you change diabetes advocacy as you see it today?
DANA: One of the most important components of the successful HIV/AIDS effort was that everyone was on the same team. There was one message, and there was a leading group that was highly organized, highly educated, highly strategic, and highly effective. Contrast that with diabetes – two different primary public charities. JDRF is handling type 1 and ADA is predominately working on type 2.
None of us are surprised when we hear of the type 1 diagnosis and people say, “Oh, so you just have to stop eating sugar?” This country has failed at educating our citizens on what diabetes really is – there is an acute chronic form of diabetes and a chronic form of diabetes. And that’s really where it starts. If I was king of the world, I would bring everyone together and create one big national campaign that says, “This is diabetes.” I would educate people about the differences between type 1 and type 2 and about the importance of testing and learning about prediabetes.
What if we talked about blood sugars? What if every single person knew what their blood sugar was – what if elite athletes knew their number? I think I know when I’m going a little bit low even though I don’t have diabetes. I’m shaky, I’m cranky, my head’s foggy, I don’t write as well, I can’t work as fast, and I don’t feel good. And if I eat too much sugar, I know I’m shaky and I’m miserable and I’m going to rip your head off.
What if the community could think of a different story? What if every single person was really aware in a nonjudgmental way about these two forms of diabetes – one that is an acute and one that’s non-acute. What if everyone wore a CGM? You’d actually get to know what happens with your body. That’s why I’m such a big supporter of CGM. It’s almost impossible to have a conversation with someone about something they can’t see.
KELLY: What about stigma? I think parents often have guilt with type 1 diabetes: “I’m not doing nearly enough.”
DANA: In HIV/AIDS we had a lot of guilt and shame; patient guilt, survivor guilt, and even family guilt. Shame in type 1 may be that “my A1c is not good enough.” We have all these measures and we have all these metrics that we’re supposed to meet. I worry that often in type 1 diabetes, once the shock is over and the management starts, the person can disappear and it becomes about managing their diabetes. Whether it’s a spouse or a parent or a caregiver or friends, suddenly it’s “Kelly, what’s your number? Kelly, where’s your meter? Kelly, what are you eating?” And I see it with parents and kids. When the kid walks through the door, the first thing isn’t, “How was your day, honey? How was sports and how was everything?” You’re not my child anymore; you’re my diabetic child, “Did you test? What was your blood sugar?”
DAVID: As a parent, I think finding the balance of helping and being too involved is the hardest thing. As my wife Karen told me, “This is Morgan’s disease and our job is to help her and equip her with all of the knowledge so that when she leaves our house she can make the right decisions.” This concept is very tough to accept from a parent perspective, but as with any child, they take their cues from those closest to them. If I set a good example for my children by taking care of myself – by working out, eating right, etc. – the chances increase that my children will do the same.
To learn more about diabetes stigma, please read our learning curve on a new 5,000-patient study conducted by dQ&A.
To learn more about our thoughts on what would make an effective diabetes advocacy movement, please read this issue’s letter from the editor from Kelly Close.
[Editor's note: Disclosure: diaTribe is supported in part by a grant from the Helmsley Charitable Trust.]
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