In Lieu of Flowers

(This post expands upon two twitter threads I wrote yesterday.)

"In lieu of flowers, donations can be made to the American Diabetes Association." I pull up my mother's obituary from 2006 often, possibly more than what's healthy.  I read this line every time and get a bit of a twinge in my stomach. In the eleven years since, shaped largely because of my mother's death, my feelings on insulin, basic care and mental health access have strongly evolved. A decade ago, especially because my mother passed away from diabetes complications, it may have been reasonable to route donations towards the ADA. I no longer believe this to be reasonable. 

People are dying suddenly and cruelly from diabetes ketoacidosis due to the high price of insulin in the U.S. People are dying slowly and cruelly from diabetes complications arising from the high price of insulin and lack of access to basic diabetes and mental health care. In 2006, when my mother passed away from diabetes complications, I felt like our family experienced an unusual set of circumstances and ultimately fell through the cracks. A vial of rapid acting insulin was priced around $70. In 2017, I feel like our family's experiences are becoming the norm. A vial of rapid acting insulin now costs, to a patient paying out of pocket, anywhere from $270-$350. This is a crisis. 

When a person with diabetes or a person close to the diabetes cause passes away, no matter the reason, their obituaries commonly refer grieving friends and family to contribute to ADA or JDRF "in lieu of flowers". Google "American Diabetes Association" or "JDRF" with "obituary" and see.  It makes sense why families would choose these organizations. The ADA and JDRF are the two largest patient advocacy organizations devoted to diabetes causes. What better way to support a loved one who has passed away than by donating to a cause they believe in in their honor? 

We chose ADA to honor my mother because, at the time, we assumed ADA was doing everything they could to support people with diabetes and support access to the care they need to survive. Grieving families of people who have died from lack of access to insulin are choosing ADA and JDRF for "in lieu of flowers" donations because they assume the two largest, most prominent diabetes organizations are working with all their might to stop this situation from happening to another family. 

This upsets me, immensely. On the insulin pricing and access front, the American Diabetes Association and JDRF are, in my opinion, doing nowhere near enough to address the issue. The two organizations are leading diabetes organizations and are always "at the table." They have a lot of clout, money and connections in this country and use those to lobby Congress and set the vision for what diabetes and diabetes care will look like in the future. When diabetes voices need to be present, everyone in this country turns to ADA and JDRF. This is important for all of us with diabetes. We do not get to democratically elect the patient advocacy organizations that carry our voices. And, even if JDRF has a research focused mission, they are considered to be a diabetes leader and that should mean leading on the issue that affects all persons with diabetes. That issue is insulin access and ADA and JDRF are not using all of their might to prevent people dying from lack of access to insulin. 

The ADA has a platform for signing a petition and sharing stories. More recently, they've used email addresses from this petition to solicit donations. I'm sure people who cannot afford insulin signed this petition and the ADA is now using the information they supplied to ask these people for contributions. The ADA also appears concerned about the role formularies and pharmacy benefit managers play in restricting access. JDRF has a the Coverage2Control campaign that is pressuring insurance companies to cover affordable insulin and other diabetes management tools and provide choice.  Of course, their campaign is also focused on insurance companies covering the it's-not-actually-an-artificial-pancreas closed loop, which they partnered exclusively with Medtronic to make happen. Both organizations are likely working "behind the scenes" - whatever that may be.  But, the ADA and JDRF did not lend their support in a Nevada bill that would require insulin makers to disclose their profits. 

Additionally, their two big campaigns are very recent. The ADA petition was started in November 2016 and Coverage2Control did not launch until May of this year. Prices have been out of control for years (price @ end of 2014: $200/vial) and it's only taken loud, persistent noise from the grassroots and the media to get them to pay attention. 

With their big advocacy campaigns targeting pharmacy benefit managers and insurance companies, the advocacy misses the 12% of people in this country who do not have insurance. Insulin access advocacy needs to work on lowering the price of insulin at the source. But, patient advocacy organizations have their own agendas and have to juggle the desires of large donors, a lot of whom are the pharmaceutical industry companies who have set the prices so high in the first place. 

I am not saying that ADA and JDRF don't do good advocacy work or advance the causes of people with diabetes in this country. They do! What I am saying is, given their immense clout, money and connections, they do not do enough to publicly denounce all players in "the system" and do not seem to prioritize insulin access and the insulin pricing crisis. 

If by some tragedy I was to die tomorrow, I would not be comfortable with my grieving family and friends making contributions to ADA or JDRF in my honor "in lieu of flowers" especially if I died from lack of access to insulin. But, my family would not know better. They're not in the weeds of diabetes patient advocacy organization politics. They assume the two leading diabetes organizations are doing all they can for insulin access, given our life depends on it. 

I do want it to be clear to my family where contributions could be made in my honor to organizations I truly commend and support. Beyond "in lieu of flower" contributions, there are other, larger matters that my family would need guidance on in wrapping up my life.  I can do this by looking into estate planning options. Given that life can end at any point in time, this is important for everyone, with or without diabetes. 

In life now and upon death, I support T1International and the Type 1 Diabetes Defense Foundation for their work on insulin access. Both organizations accomplish a lot, with limited budgets and take no donations from pharmaceutical companies. T1International fights for insulin access in the U.S. and globally. The T1DF has taken on major system players through class action litigation. I also support the works of independent activists and advocates who work on this issue, including Stephen Richert who is working on an insulin access documentary project. I know many friends in the diabetes online community who are not as fortunate as I am with access to insulin and supplies. I hope to support them more and others crowdfunding insulin. Finally, I will make clear instructions on why and how my family can donate unused diabetes supplies, as there's no sense in that going to waste when people are dying without. 

It Started with a Sign

(thanks DiabetesMine for including some of these thoughts in their writeup on recent DC advocacy.)

It was just two weeks ago that my only activities were eating, sleeping, working and protesting. With Trumpcare passage seeming like a forgone conclusion, it truly felt like my life and the lives of so many others were on the line. While I wasn’t sure my actions would make a difference (spoiler alert: they did), I wasn’t going to go down without a fight.

I’m not a professional advocate or protester. Usually, I’m not very spontaneous. If I’m going to go out and protest, I like to be part of an event that is already organized. But, on Tuesday, I headed to the Capitol with no plan or agenda. I figured an earlier afternoon rally would already be over. I figured worst-case scenario, I’d hang out at the Capitol with a sign I had discreetly made at work earlier in the day. Even if it was just me and my sign, it was better than doing nothing.

For a while, it was just me and my sign. I eventually got to meet Ben Wikler of MoveOn, who was still in the area. He tweeted out my sign and a little while later, a random group of 20 people had gathered and were chanting at the Capitol building. Our group of 20 was an unorganized, impromptu collection of people who felt compelled to do something. We chanted, we said hello to the ADAPT protesters who had been out for over 48 hours, we protested at Mitch McConnell’s house and then played a game of “Shame or Thank” as senators were leaving the building for the evening. Several democrat senators stopped by and thanked our small (but loud) group for being there.

  Found another person with diabetes!

Found another person with diabetes!

  Gathering at McConnell's house

Gathering at McConnell's house

  "Hi, Mitch."

"Hi, Mitch."

Despite having met none of these amazing advocates until earlier that evening, we became fast friends. We had to be vulnerable with each other early on. I told the story of how my family struggled (yes, struggled) with Type 1 diabetes, how the disease killed my mom, and how that has forever affected me in a way few would understand. I learned stories of cancer survivors and people dealing with their mental health disorders. I learned of so many kind souls who didn’t have pre-existing conditions but knew how important the fight was. I learned of families struggling and families saved by the ACA. It was truly one of the most inspired nights I’ve had in D.C.

  Planned Parenthood rally.

Planned Parenthood rally.

Wednesday was a bit quieter, as I knew Thursday would be the next big protest push and possibly the final vote on the ACA repeal. I headed to a Planned Parenthood rally with my longtime friend Brian. I heard a bunch of speeches from senators, representatives and advocates stressing how important the ACA, Medicaid and Planned Parenthood are in providing the country with healthcare coverage. After the rally, I ran into several of my new friends from the prior night. We caught up, learned about the protesting that had happened during the day and connected on Facebook. I would keep running into these friends throughout the week.

On Thursday, a protest at the Capitol, led by MoveOn, wasn’t scheduled until 8PM. I knew the night would be long and that I would stay out until the end. There would be a vote later in the evening to add the “Skinny Repeal” amendment. If this vote went through, the ACA repeal would effectively pass. This vote wouldn’t be until after midnight. The MoveOn team did an excellent job lining up speakers and when official speakers ran out, patients went up to the podium to tell their own stories. I listened to friends tell stories with such passion and eloquence.

I got to see a lot of friends at this rally. These weren’t my conventional, normal group of friends in D.C. These were friends from Tuesday night, friends from the #Insulin4All hashtag, and friends from other parts of Twitter.  There were several speeches talking about diabetes and how costly insulin is. We held the #Insulin4All flag up as high as we could.

Around 1AM, I ate the best slice of pizza in my life ordered by kind souls across the country to keep all of us protesters fed. I experienced waves of different emotions: hope, despair, frustration, passion and pride. I laughed and cried. Ben Wikler was reading updates when he received them as I was refreshing Twitter constantly. McCain voted no. Murkowski voted no. Collins voted no. The final vote closed.  We chanted, we hugged strangers, we took selfies with Elizabeth Warren. At 1:56AM, we had a victory and I finally headed home. My boyfriend was asleep when I got back and I woke him up to tell him Trumpcare had failed.

On Saturday, my boyfriend and I attended what would hopefully be my last healthcare rally for the week. Saturday nights are our date nights and the Our Lives rally was happening at 6:30PM. This rally was especially meaningful to me because we went together. In our household, I’m not the only one who is threatened by the repeal of the ACA. My boyfriend is a survivor of a rare cancer called Ewings Sarcoma that he had when he was a teenager.  He was a good sport with the joint sign I created. We listened to a lot of amazing advocates give speeches and we stood out there for families with diabetes, families with cancer and families, like ours, inflicted with both.

  My boyfriend and I. A pre-existing condition “power couple”.

My boyfriend and I. A pre-existing condition “power couple”.

The week finally ended and I realized just how many life lessons I learned. The best thing to say to someone when they apologize that your mom has passed away is a sincere “Thank you.” Twitter friends are real and there’s something special about meeting them in real life. Cynicism and feeling as if your actions don’t matter can stop advocacy before it has a chance to bloom. Actions do matter. It only takes one person to make a statement. Everyone has a different brand of advocacy and mine will always be grassroots and making noise in and around D.C.

I believe Trumpcare was only stopped because of incredible grassroots advocacy. While I’ve never claimed the ACA was perfect or the ultimate answer, I do believe repealing the ACA would have destroyed many lives and forced many more families with diabetes to pay exorbitant insulin prices out of pocket. Because of that, I won’t stop fighting for the ACA but most importantly, I won’t’ stop fighting for a better healthcare solution for our country. I won’t stop fighting for lower insulin prices. I won’t stop fighting for myself, my family, my friends, the diabetes community as a whole and every single other person whose life is at risk when accessible and affordable healthcare isn’t guaranteed.

On Suffering

If there's anything the diabetes online community can hopefully agree on is that diabetes language matters. Use of the term "suffer" feels like the new "person with diabetes" versus "diabetic" debate. I've seen a lot of excellent discussion and well-thought out opinions on Twitter lately regarding whether "suffer" has any place when discussing diabetes. I have lots of thoughts on this subject.

First, where did this debate even stem from? The media, on many instances, has used the term to describe the state of people with diabetes. There's really no distinction here between types of diabetes or whether an article is focused on one person with diabetes versus the population as a whole. Kids are as much "sufferers" as adults are. Even pets are not spared from the label. If I search "suffer" and "diabetes" on Google News, quite a few results are returned.

To suffer means to "experience or be subjected to (something bad or unpleasant)". A more dated meaning is to "tolerate". Is this not an appropriate to term to use when discussing diabetes? The answer to that question depends.

I do think it's dangerous to overgeneralize the experience of living with diabetes and using "suffer" with reckless abandon does overgeneralize. The diabetes population is as diverse as the world is. We should not be using blanket descriptive terms to describe a population where some people do not feel like sufferers.

But, we also can't cast aside the fact that people do suffer from diabetes. It may not be you, it may not be me but 100% people suffer from this disease. I understand the inclination to use positive language to frame diabetes experiences and empower people. But, using positive language does little for those who are suffering by the standard definition. Forcing positive language with discussing diabetes may impair mental health and euphemizing diabetes experiences is perhaps the most dangerous gamble of them all. To not recognize that is to ignore all the people with diabetes who live outside a world of privilege.

I am very privileged now and do not consider myself to be suffering from managing my bloodsugars on a day to day basis. I do not think diabetes currently hinders my life. But, I suffer 24/7 from survivor's guilt caused by diabetes slowly killing my mom. That's the kind of emotional torture that never goes away and can, in no way, be made better by empowerment. To cast aside "suffer" entirely feels like casting away the experiences of my family when I was growing up and the experiences of other families who have been destroyed by this disease. My mom suffered from depression, blindness and kidney failure. Actually, truly suffered. We suffered and many others still do.

When euphemizing diabetes, it's sending a message to the general population and the diabetes community itself that diabetes is not difficult. While diabetes is treatable and we can live long, fulfilling lives, this is only possible when someone actually has access to all the tools and resources they need to manage the disease. The community should know by now that so many people with diabetes worldwide do not have access to basic healthcare, as in, insulin and test strips. The general population needs to know and care about these struggles.

It's also important to recognize the nuances, intentions and the actual effect "suffer" or any other language has. One nuance is that "suffer" by definition also means to "tolerate", even if that meaning can be out dated. I would think many agree that managing diabetes is tolerance at best. In regards to intentions, in my opinion, the media is using this sort of language to compel readers to act, to keep reading or to empathize. I do not believe it's the media's intention to overgeneralize diabetes experiences and expecting them to pick up on all the nuances of diabetes community language is farfetched hope. It's especially impossible when the diabetes community itself cannot agree 100% on what language needs to be used and when. Finally, I think the actual effect of using "suffer" is difficult to determine. Even if the word itself isn't causing overall harm to the community, overgeneralizing does.

To wrap this up, here are a few strong opinions I have. I hope others agree.

  • The media does not need the word "suffer" to describe the difficult, unrelenting experiences of people with diabetes or to describe simply living with diabetes on a day to day basis. There are better ways to convey all of this.
  • People with diabetes should recognize that we don't all share the same experiences. To say people with diabetes don't suffer at all is a position of extraordinary privilege.
  • Healthcare professionals especially should not overgeneralize diabetes experiences and think about how their language affects their patients.
  • There needs to be more awareness on how defaulting to positive language 1. affects the mental health and 2. unintentionally downplays the experiences of those going through difficult times.
  • People with diabetes should give leeway to each other when it comes to language. Given the diversity, there will never be a consensus on any language but respecting each other is important.

And, if others don't agree with me on the above, I still think we can all agree that diabetes language matters.