Just before the holidays I entered into a few discussions about the directions patient advocacy is taking as what used to be a fledgling movement of sorts is now coming into more maturity. As the new year starts, I think we need to start to assess where we are as advocates as a whole and what we are trying to accomplish.
To that end, I wrote the following email to some well known diabetes advocates who I think have a large voice to talk about issues of transparency, conflicts of interest, and which voices are being heard and represented. I think these issues go well beyond the diabetes online community (#DOC) and span to all disease communities. I hope that by writing to those who are seen as leaders in the #DOC and also posting it here we can start the conversations about how to be better advocates.
Hi there, fellow advocates!
I thought I would take a moment to write an email as I think there has been a bit of a tweet storm around diabetes advocacy lately and of course it can be hard to get all messages across in 140 characters. I thought of you because of your prominent role in the advocacy community and because I know of your passion for it.
First, I want to say thank you for all you do and just recognize that I know you all work hard to create dialogue and listen to those with diabetes. I think you all have great hearts and I appreciate greatly your time and energies spent in advocacy.
That said, I think there has come to be a bit of a rift in the community. I personally have felt it for a while and have expressed it to you all in the past – this divide between the continuous glucose meter (CGM)/pump folks and those who don’t use them or are less fortunate not to be able to afford them. I think I’ve also expressed the issues of access not just to technology but to medicine and basic services like dental and eye care and mental health services as well. I do believe you’ve heard me and you hear others on this issue but I think it’s still not getting enough attention in the advocacy world. I think The #DiabetesAccessMatters campaign focused too much on pumps and not nearly enough on access to insulin in itself.
I would lump you guys in with “the usual suspects” and I don’t necessarily mean that in a derogatory fashion, it’s just that when people think of diabetes advocacy they think of you all. They think of those who do have strong voices and who do get to be in policy discussions and are asked to be at conferences more than most. That’s not a bad thing – it’s good to have leaders and it’s good to have your voices heard. I know that I want to be in those rooms and conferences, I think many would.
But I think there are 2 issues with the usual suspects being at the same meetings – one is a growing awareness of conflicts of interest and the second is the limits that we must recognize we all have in advocacy. Neither one of these are personal attacks on you or your efforts (as I think it may sometimes come across on social media?) but more a commentary on the greater advocacy world needing to take a look at how advocacy is done (and that includes other disease communities or advocacy areas far beyond diabetes).
As for conflicts of interest, lets not lie – money makes the world go round. You cannot do what you do for free all the time and it’s hard to avoid benefiting from companies when we advocate. Whether it’s being flown somewhere and put up in a hotel for an event or recognition on a website, honorariums or freelance payments, every benefit receive (either monetarily or in-kind) does shape us though. It can shape how we interact with industry and what we say as a result. It doesn’t meant that we don’t still have a voice or that we won’t try to be fair and impartial but we cannot say it doesn’t influence us at all.
This is especially important right now as we watch insulin prices at an all time high and inaccessibility the world over costing people their lives. I know you know this and I know you want change. But there is a serious question about how much and what change is being pushed for by “the usual suspects” who have conflicts of interest. I long ago wrote off the ADA and JDRF for support in such areas after seeing their “advocacy” work first hand. I do not personally see them advocating for the wider community and am deeply troubled by their conflicts of interest with industry/special interests. But they aren’t the only actors/advocates, and as individuals and organizations with a great say in policy through your connections and influence I think there is good reason to question why other voices have not stood up to industry and worked toward better change.
I’m not saying that you haven’t necessarily stood up. I think perhaps you have said some things? I assume you would because I trust that you have good hearts as I said. But I also can’t say with certainty that you have and perhaps to what extent you haven’t because so much is in the dark. Financial ties are not clear and what happens behind closed doors are kept too secret. I think the first step to changing that is to be brutally honest with disclosing benefits to the industry standard that doctors must disclose benefits they get from pharma/med tech and lobbyists must disclose money they spend. I think it goes beyond writing that something is a sponsored post or putting a logo on a webpage to disclosure of actual payments and in-kind benefits. As for what is said in the rooms, I think we can’t mandate that anyone reveals everything (and in fact that might make those meetings less open to discussion) but we need to have some better information about what exactly is being talked about? How are other peoples interests being addressed?
To that end, I think as advocates we must all realize our limitations. I think this is where in tweets it’s hard again to really portray what I mean when I am critical of who is in the room. Though I’ve tried to blog about it, I still feel like the message is lost and it’s maybe taken as a personal attack. I’ll say again, I think you all are trying and I think you do listen, but no matter how much you listen or try, you cannot adequately represent everyone in the community – particularly some of the more diverse experiences that get left out of most policy discussions. That goes for me too. And it speaks nothing to who you are or what you are trying to do, it is just that we are all simply limited – incredibly limited – in what we know, what we experience, and how we can bring the stories of the communities we’re in forward.
I have said to you before that I grew up very well off. I went into public policy and advocacy right out of law school. And I thought I knew what was best and how to advocate for others. I listened, I spoke up, I did my all. But it wasn’t until I was actually in poverty that I understood the reality of what those who I had been advocating for were going through. I mean I helped other people fill out their Medicare Savings Programs applications to be deemed Qualified Medicare Beneficiaries and the forms for food stamps – and yet it wasn’t until I had to do it for myself that it took on a real meaning. Looking back I think what a folly it was that I thought I was such a good advocate when in fact I really didn’t know. Yet, now it makes me a better advocate (I think?) both because I actually know and because I can recognize my limitations.
I can’t speak for middle-class working families or individuals who were diagnosed with diabetes at 3 years old. I can’t speak to being a person of color. I can’t speak to having English as a second language or figuring out access issues in other countries. I can’t speak to being a pregnant woman with diabetes or a mom of a kid with diabetes. I can’t speak to what it means to be a vet with diabetes or a man with diabetes or a loved one of someone with diabetes or someone who has faced blindness or lost a limb. There are so many places in advocacy that I know I cannot adequately represent the community. That doesn’t mean I can’t still advocate for the community and try to represent what I know about these individuals and the obstacles they face, it just means I have to admit that I don’t know and that if I really want to have a good discussion about change, I need people like these and as many diverse stories in the room at the same time.
When I read that “the usual suspects” are in policy discussions talking about access, I’m personally frustrated. How can you represent me? Having struggles with insurance and a tight bank account doesn’t mean someone understands what it is to live out of their car or have to apply to 6 different patient assistance programs to get the medicaitons they need and what all that takes. It becomes offensive because it feels like some sort of “white savior complex” (and lets not lie, it is a lot of white, middle/upper income that are swooping in here). How can I feel that you are representing me when you don’t know how hard it was to get into the free eye clinic and hope you’ll find a way to get glasses (follow up: good news! they were able to get me a free pair of glasses to replace the one’s I’ve had for 3 years!) when you are all talking about CGMs? Sure CGMs are great (I was in the first Dexcom trials back in the day) and perhaps can help many stave off eye issues – but if I read one more tweet that is a picture of a CGM, or someone talking about how the tape affects their skin, or how Medicare needs to cover CGMs I will scream (spoiler alert: there will likely be a lot of screaming).
People are dying all over the world from lack of access to insulin and the only “solutions” we are hearing are that their may be some prescription assistance programs (so many problems with that route we can discuss another time but I think you are more than aware of) and then people still mad that medtronic is the pump of choice. If I might: WTF?! Where have the priorities gone? Tech above all? Settling for the shitty and misleading industry “solutions”? When will there be advocacy that will actually make change that affects more than just middle/upper class white Americans with type 1? I guarantee that that type of change will not happen when it’s “the usual suspects” in the same rooms over and over again. It just can’t happen because they, we, are limited. Until the people with diverse experiences – poor, blind, of color, non-English speaking, no college education, and other diverse experiences – are actually physically present in some of those rooms, no amount of our best efforts will be enough.
This means putting a lot of our egos aside and becoming really humble again and remembering those times when no one heard us. It means going back to that place where we all began, just trying to put our stories into the void and hoping someone would hear them. And then it means thinking about how that felt and how we can raise others up to have their voices equal to ours. It means going to free clinics and working with case workers to get these voices heard. It means looking in places where we don’t look and maybe don’t want to look. It means going beyond even our borders to see the bigger picture and reach out even further to hear new experiences. It’s not easy and I do think we are all trying to get there in some way, but I think none of us are doing enough.
I know this has been rather long (I know no other way to write anything), but I felt it was important to reach out. I hope that none of this makes you feel offended or defensive but can be accepted with the spirit of just wanting to open the discussion and efforts to improve. As I said, I think all of advocacy needs to think about these issues – issues of payment, conflicts of interest, transparency, and representation – and consider that maybe we all can do better. We’re all evolving in our efforts and so none of this will be perfect, we’ll keep trying to do our best – but we also need to recognize where we are failing and not to take it personally.
Thanks for listening and thank you for all you do!Sincerely,Erin