May Volunteer Spotlight: Mike Olex

Mike has been a volunteer with NPAF for nearly seven years and is also a part of NPAF’s volunteer Advisory Group. In addition to being a volunteer with NPAF, Mike is also involved in a number of advocacy efforts in the multiple sclerosis and disability communities. Mike will also be featured in the upcoming National Academies of Science, Engineering and Medicine (NASEM) Workshop: Integrating Serious Illness Care into Primary Care Delivery. Read on to learn more about Mike’s volunteer work. 

Describe the advocacy work that you’re doing in your community and what motivated you to start.

When I was first diagnosed—just over 15 years ago—I inferred that multiple sclerosis was going to be part of my life, but I didn’t think it would envelop it completely. Nine different therapies and one wheelchair later, I’ve learned that if I’m going to improve my course, I need to help make changes for everyone.  The major areas of my advocacy are focused on: disability normalcy, drug pricing and accessibility. When I first got into a wheelchair and went out in the community, I would always see people viewing me as someone who was remarkably fragile and needed “kid gloves”.  When I say “disability normalcy”, I want everyone—especially politicians—to see people with disabilities as people who are valuable and able to contribute to society. As an advocate, I realized that I have to use my “New Jersey voice”(born and raised outside Trenton) to speak up for those in the disability community who can’t use theirs.

What advice would you give to other volunteers who would like to do something similar?

I think people often feel like they have to be the experts on every component of policy. I want them to know that you don’t need to be the expert on the policy at all. You need to be the expert on you. Ask yourself: Why am I here today? What motivates me to tell such a personal story to a legislator? It’s important to help your legislator understand how an issue that is impacting you, may also be impacting other constituents.  I was never a political person growing up. I was a scientist. I assume that everyone would follow the science to have the best results for people. However, I’ve since realized that isn’t always the case. I began doing advocacy work to help the long-term situation for my kids.

Since you’ve been a volunteer with NPAF, what are some of the things you are most proud of?

From a policy perspective, I’m proud of playing a role to help change step therapy practices in Virginia. When I was diagnosed, step therapy was standard. Previously, your doctor didn’t have a choice about putting you on the best therapy for your condition. Personally, and I’m sure I speak for the gross number of people living with a chronic condition, we just want to live as best we can and we want our doctors to help make that happen. We don’t want insurance to mandate or dictate what treatments we can go on. Currently, men are known to have a significantly more difficult course with multiple sclerosis and the science supports starting on a more aggressive therapy. Step therapy practices made that difficult. Now, step therapy protections have made it possible so that doctors and patients can make treatment decisions together, though this is dependent on the state you live. 

Although, I’m naturally an introvert, NPAF has helped me realize that I can do so much more outside of the lab by influencing policy and helping make a difference for thousands of people by helping frame and change the argument. I love working with NPAF. The biggest reason is simply that it doesn’t represent just one disease state. When I meet with legislators and advocate for multiple sclerosis or Alzheimer’s (for my grandparents), it’s just one thing. Legislators will get tens if not hundreds of requests every month for funding with different disease states. With NPAF, a lot of the policies that we are trying to change are going to impact everyone. Working on these initiatives allows me see and think beyond myself and try to help the greatest number of people that I can.

Mike Olex is a NPAF volunteer and resident of Virginia.