Last week I had the honor of joining 20-some other diabetes advocates for a meetup in Northridge (Los Angeles) CA. This is my second time attending the Medtronic Diabetes Advocates Forum (MedtronicDAF). Hopefully you were able to join in on the conversation on Twitter last Thursday during the one day meetup.
This year was a bit different because I met a lot of new people that I haven’t met before and it also included voices from Canada and Latin America.
The very first thing that I noticed is that our needs in the United States are different than those in Latin America and Canada.
The night before the actual forum, we had a group dinner where I had the pleasure of speaking with Louis Dias, Chief Patient Officer for Medtronic. This is a new position, but something that Louis is familiar with from his time at Johnson & Johnson in the contact lens world. I was able to speak with him about what some of the challenges may be for him in his role with Medtronic and how we as advocates can help him achieve his goals.
This conversation also included Scott Estrin from Rolling in the D and he added his concerns from an engineering standpoint. I always find it fascinating when engineers speak because they tend to look at problems differently.
One of my talking points throughout the entire meeting was that I am sick and tired of people wanting to complain and demand things but don’t have a solution for the problem. For example, “your product sucks”, “your sensors suck”, “I want this feature in my pump now”, but then have no feedback as to what exactly is wrong or how it could be made better. Scott is the complete opposite. He provides his insights into what he believes could work or why the current situation is not working.
On Thursday, the forum opened up with some introductions but first up was Louis Dias. The main theme throughout the day was this phrase:
Transforming diabetes care together for greater freedom and better health.
Louis explained how Medtronic is looking to be a more patient centric company by putting the patient in the middle and then branching their products out based on the needs of the patient. This, in my opinion, is why any business should be in business. Solve a problem and you have a business. Creating a product based around a problem is a path down a bad PR road.
I had asked Louis during the forum what kind of patient focus groups are taking place. As a patient centric company, that should be the #1 priority. Finding out straight from the patient what they want and need and creating something around that.
Louis’ answer was quite frank:
We have recently done 67 1 on 1 interviews around the globe, however, we need to do more.
I like the fact that they know that they need to do more patient focus groups, now the issue is whether or not they actually do it, and I strongly believe that they will.
I became a big fan of Louis Dias and I could spend the next 1,000 words talking about what he discussed, but I will move on and touch on all areas before I lose you.
The next session was based around type 1 management and products. The biggest issue that came up here was access to this wonderful technology and big data and new products. I will get to that towards the end of this post, so keep reading.
I want to skip to our fireside chat with Hooman Hakami, the Group President of Medtronic Diabetes. This was an open Q&A with Hooman and I must admit, I felt confident in the direction that Medtronic is heading with this guy steering the ship.
One question that was asked was about Medtronic working with other systems and their data being kept to themselves. Hooman had mentioned that he would be open to the data becoming open, however, working with other companies is not very feasible, and the answer may have not been what everyone wanted to hear, but I don’t see anything wrong with it.
I know I don’t share the common opinion about this topic, but just think about this, have you ever seen a Pepsi-Coke soda? How about a iAndroid OS or a StarDunkin coffee? No, why? Because they are different companies with competing products, very simple. Also, if Medtronic was to get a pump approved by the FDA to work with, let’s say Dexcom, then in order for Medtronic to make any updates, they would first have to wait for Dexcom to make their devices compatible to those updates, then wait around for FDA to approve this. So, why would a company slow down their technology development process because they are waiting for another company?
It just doesn’t make sense.
Moving on to access, which is another post in itself as well, but I will just keep going here. Basically, Medtronic (and everyone else) knows that there is an access problem. Medtronic is working hard with IBM Watson and their internal data team to create the data that is needed to show payers and CMS that insulin pump therapy and CGM usage is actually needed for better diabetes management. The data mixed with real life stories from people is what is needed to change payer policy.
Which you can take 60 seconds right now and send a letter to your elected official asking them to co-sponsor legislation that will help get CGM’s covered by Medicare.
Access seemed to be one of the biggest talking points during the forum. As I mentioned at the beginning, the access issue was different depending on if you were from the United States or the Latin America group. For them, access just meant being able to afford the basic technologies and having access to the education and support that is needed.
I know that there is an affordability problem in the United States as well, but there are different levels here, whether it’s because you can’t afford out of pocket, co-pays, or because your insurance will not cover it.
Since, I am from the United States and it’s what I know best, it’s what I will stick to. I’m not going to venture down a path that I don’t have experience in.
Better Access or Better Technology
There were several comments about access and none of this great technology means anything if people can’t afford to use it and that it is going to create a bigger gap between the have and have nots. First, let me say, I totally agree. Great technology means nothing if it is not affordable and can’t actually be used.
On the other side, how can we ask a company to halt their research and development and stop creating new technologies just to focus on something that is not 100% entirely their fault or that they can’t actually solve by themselves?
Listen, I totally get that I am privileged enough to have insurance (I didn’t always, I went 18 months with zero insurance) and I have access to the latest and greatest. But what I don’t get is that as a community we demand better products, but then when a company creates them, we then complain that they are too expensive. New technology is not cheap. Research and development for on-going better technologies is not cheap. If we truly do want the greatest and best technologies, it is going to cost money.
There is a reason that not everyone has the iPhone 6 Plus. One reason is because they can’t afford it. Do we demand Apple to stop innovating and go backwards to create a much cheaper model?
I know, it’s phones vs insulin pumps / sensors, not the same thing, but I’m trying to make the point that we can’t have Fast, Good, and Cheap… you can only pick two.
Better access or better technology? I choose both.
So, what can we do?
We can’t just rely on Medtronic and other pump companies to solve the insurance / Medicare access problems by themselves. Only so much can be done from the company making money off of it. These companies need your help as a consumer of the products. (If you’re offended by the word consumer, get over it, you consume their products, therefore you’re a consumer).
If you want access, you can’t just sit back and do nothing. You have to act. If you have insurance and you are denied for a Medtronic pump. Call Medtronic, call your rep. They will help you get the paperwork that you need, gather the proper data, write letters. As soon as you get done putting one letter in the mail, start writing another one. Start writing to your Mayor, Governor, House of Reps, Senator, start writing letters to the President of the insurance company or even taking pictures of your infusion set problems.
Every story matters.
The data is great, but your story is even better.
You can sign up to become a DPAC Insider (Diabetes Patient Advocacy Coalition) so that you can stay up to date on all advocacy efforts and learn how to become a better advocate for yourself. Don’t even worry about advocating for others, advocating for yourself in the long run will help others.
Finally, how do we provide access to people who are uninsured and are paying out of pocket. This is where we need the pump industry to do something, that they can do. Maybe they can’t provide their most latest and greatest technologies for the cheapest price, but just like the smart phone example, there’s a reason why you can get a iPhone 4s for $0.99 when the 6Plus costs $500. It’s older technology, but it gets the job done.
So, why can’t Medtronic and other pump companies sell older models for a much more affordable cost?
Overall, I was happy with this year’s forum. I know it was only one day and it was quick, but who wouldn’t want to spend an entire week discussing diabetes issues with other advocates? I don’t mind the one day event because it was filled from 7 am – 4 p.m. Even during lunch there were conversations happening. I also feel that the one day time schedule forces people to speak up right away. It doesn’t provide you time to keep things to yourself and wait until a later time to bring it up, it makes the conversations happen now.
As I mentioned, it is important that the DOC keep these sort of conversations moving forward even after events like MedtronicDAF. The fact that the Medtronic Diabetes Executive team was sitting there open to Q&A and listening was just the beginning. They have learned and reacted from mistakes in the past brought up to them, however, how they move forward with the feedback that was provided this time around will be exciting to see.
Discloure: Medtronic Diabetes paid for my travel, food, and lodging expenses for this trip. The one thing they did not pay for was my opinions in this article, as these are free and only mine. I am also a Minimed Ambassador, but do not receive any compensation for that.