Ask Me Anything: An interview with Dr. Aaron Kowalski of JDRF [Video]

As a member of the Antidote partner network, JDRF is an organization that shares our passion for helping research advance through clinical trials. Through their Clinical Trials Connection page, they share information about clinical trials, answer commonly asked questions, and host Antidote Match so individuals can find potential studies that they may be interested in.

To learn more about medical research in the diabetes space, our Director of Partnerships, Grace McElroy, sat down with Dr. Aaron Kowalski, Chief Mission Officer at JDRF (who has since been promoted to the President and Chief Executive Officer) to discuss type 1 diabetes and the importance of clinical trials in improving patient’s lives. Members of the Diabetes Online Community submitted questions regarding diabetes research, clinical trial participation, and more. Read on for a synopsis of the interview, or watch the full video above.

Diabetes AMA with JDRF

In your opinion, what is the purpose of clinical research? What is your definition of a cure?
If you talk to people with diabetes, the definition of a cure will often vary. It seems simple on the surface, but everybody agrees on the “holy grail” definition, which means that you walk away. In the near term, there may be solutions that I call quasi-cures — for example, we focus on beta cell replacement that can restore normal blood sugar levels for a year or two at a time. I wouldn’t call that a cure, but for many, normalized blood sugar may be enough.

Walking away and prevention are the ultimate goal, but in the meantime, JDRF is focused on the huge steps we can take until we get to that. Clinical research is critical there. To move science forward, we have to do clinical trials. Anything that’s a cure needs to be approved by the FDA and brought to people with diabetes, which is why our partnership with Antidote is important. We need more people with type 1 diabetes to participate in clinical trials and drive the science forward.

At what point does your body become immune to a certain type of insulin? Should adolescent youth be on the same insulin as they were when they were first diagnosed?
With type 1 diabetes, your body stops making insulin, so people wear pumps or do shots to offset that. We’ve seen amazing evolution in insulin over the years. When my brother and I were diagnosed, we used cow and pig insulin, and then the DNA revolution allowed companies to make human insulin. The problem is that your body doesn’t necessarily use these insulins in the same way it does the insulin created by your pancreas.

Fortunately, better and better insulins have been made through genetic engineering, which has helped people. People don’t build immunity to insulin, but they do become resistant to it. When the body goes through puberty it typically needs more, and then after puberty, it requires less. At JDRF, we have a program to make sure people have access to the type of insulin that works for them. In America, the cost of insulin has been a huge problem, and JDRF has been on the front lines to make sure people have affordable access to the insulin that is most effective.

How difficult is it to link CGM (continuous glucose monitoring) to a pump?
Combining CGM and pumping has been hugely impactful for a number of people. Technically the big advancement was low-energy Bluetooth which allows a way for the pumps to receive the data. Most people now use the data on their pumps but also can access it directly on a cellphone app, so parents and spouses can also see the communications. That’s also huge for closing the loop to allow the pumps to run automatically. I don’t personally think technology is a cure, but I do think it has the power to help people a lot.

What cool research may be recruiting for patients soon? What should T1D patients be watching?
There is so much going on in human diabetes research now. With our partnership with Antidote, it’s easy for people to see the types of trials that are currently available. A trend we’ve been seeing is lots of device trials, prevention trials, beta cell replacement trials…when I started at JDRF, I think we had less than 5 human diabetes trials enrolling. I think it’s important for people with type 1 to understand that there are opportunities that can be amazing, and they can help move the science forward.

What are some of the concerns you hear about entering into a clinical trial?
Sometimes people are reticent to increase medical visits and trips to the doctor's office, but every trial is reviewed carefully by medical boards, ethicists, and the FDA. People worry about getting poked and prodded, so safety is one of the key things people worry about. All of these trials have incredibly rigorous checks and balances they go through to keep everything safe. Oftentimes, people enjoy the process of participating in a trial. I think everybody should explore them, and take a look at the protocol to understand the pros and cons. Ultimately, people are necessary to move the science forward.

What makes diabetes a lonely disease?
You hear that from many people with type 1 diabetes. Fortunately, it is a rare disease — if it’s not in your family, you have about a .4% chance of developing it in the United States, so you often don’t encounter other people with the condition. It’s a 24/7 job to manage, and I think you’d be hard-pressed to find other diseases that take so much management. Oftentimes people don’t see that there’s anything wrong with you, but behind the surface, there’s a big burden that weighs on people. We talk about the Diabetes Online Community, clinical trial participation, and other types of connection, it can provide a lifeline for individuals because they can meet others in a similar situation.

What’s in the pipeline for new tech? When do you think those products will launch?
New tech is a big area of focus for JDRF. I think tech is moving towards miniaturization and making things easier. Nobody without diabetes wears these devices, and that’s a barrier — we need to make them easier. Anything we can do to make life easier with type 1 is a big focus for us.

What would be your advice to a T1D patient who is considering participating in a clinical trial?
I think when considering participation in clinical trials, there’s a lot of information, so the first thing is to become educated. The person with type 1 diabetes is their own biggest advocate. Being in a clinical trial can help move the science forward, but it can also help you. People in trials can benefit significantly from the new technology and drugs — there is amazing research going on, and being educated through Clinical Trials Online and Antidote Match is a key way to stay informed. Knowledge is power, and I find that people often simply don’t know that these are going on.