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.