Mary Tyler Moore was diagnosed with Type 1 diabetes some four decades ago, and through the years she’s been perhaps the world’s top diabetes spokesperson. But advocacy couldn’t protect her from Type 1 diabetes complications.
The new Closer Weekly Magazine cover story on Mary Tyler Moore, tells the story of her battle with Type 1 diabetes, and her current state of health.
The Closer story reveals that Ms. Tyler Moore has almost completely lost her sight and is struggling with what her friend Valerie Harper called in the story “the ravages of diabetes.”
Her friend Betty White said, “[Tyler Moore is now] almost beyond the point [of being able to see].” And in fact, Ms. Tyler Moore has not made public appearances, for the most part, for the past two years. Even her traditional appearance at JDRF’s Children’s Congress was cancelled last summer.
This has caused a stir in the diabetes community. On Facebook, one mother of a child with diabetes said, “We need a cure for Type 1 diabetes. When someone who has advocated for those battling and living with this disease, someone who is well known and successful, isn’t immune to devastating affects, then you know a cure needs to be found. Best wishes to Mary for her health.”
I’m lucky enough to know Ms. Tyler Moore and her amazing husband Dr. S. Robert Levine. Ms. Tyler Moore and I co-chaired JDRF’s Children’s Congress in 2005, and her husband and I have worked together on more diabetes projects and committees than I could ever count. I’ve witnessed first hand what Ms. Tyler Moore and Levine were doing for my dream of a cure for my child, and I’ve long been humbled by it.
When I first met this dynamic team, I’ll be honest: I was a bit nervous. It wasn’t even so much that Ms. Tyler Moore was an icon. For me, the parent of a child with diabetes, it was the power the two brought as a team to diabetes advocacy, research and yes, progress.
One might even think of Ms. Tyler Moore as the most benevolent of leaders. She had to know that all her hard work might not positively impact her own future. Anyone with a knowledge of research/advocacy knows these things take time, lots of time. And yet, through the decades, she never backed down. She used her icon power to land spots on shows like Larry King Live to speak honestly about her life with diabetes and the need for funding for better treatments and a cure. She showed up at JDRF events all the time; giving her time to motivate the team (while being swarmed by admirers). But carry on she did, as she would tell Congress often “For the kids. For the future.”
That’s why I think it is important to not just feel sadness and frustration with the news of Ms. Tyler Moore’s current state of health. We need to also take a moment to honor, cheer and celebrate all she has done for us.
Because the reality is this: Very much thanks to the decades of leadership advocacy by Ms. Tyler Moore and Dr. Levine, our loved ones most likely will not face a future similar to the one she is facing.
When Ms. Tyler Moore was diagnosed with Type 1 diabetes some 40 years ago, there were no meters on the market. The idea of insurance covering something like test strips to help a person monitor their blood sugar over the course of a day was almost like science fiction. Insulin choices were limited; most people took one shot a day and hoped for the best, trying to balance with food choices and exercise while that insulin peaked and plunged in their bodies with little the person could do about it.
Pumps were the dreams of mechanical engineers and scientists. CGMS? Unheard of.
Back then; if diabetes messed with your extremities (like your eyes and your feet; usually the first to be impacted), doctors could do little more than suggest you try to take better care of your diabetes. Today, if and when there is any sign of even the possibility of such things, our medical teams know how to intervene (and have the tools to do so) before any of it progresses to dire. Should a person’s eyes be impacted by diabetes (as Ms. Tyler Moore is experiencing), we now have treatments to offset long term damage. Much of the research for those breakthroughs came under Ms. Tyler Moore’s international leadership on the diabetes research front. I witnessed her husband pushing for more and more focus on funding breakthroughs for complications therapies many times.
While we have far to go with making insulin work even better in the body, we have a buffet of choices now, so medical teams and patients can custom-fit their insulin regime to their lifestyles, their needs and the way their bodies work. Researchers now are working on creating a “smart insulin,” which would be administered once a day and then sit in the body, knowing when to release and when to hold back, based on the person’s moment-to-moment needs. Even the idea of that didn’t exist a few years back. And again, Ms. Tyler Moore’s leadership helped raise the funds and support the experts working on it.
And while pumps can still be improved, now we have choices, models that do things like automatically shut off when blood sugars are dropping, look up the food you are eating, find the carb count and then do the math for your insulin bolus need at that moment without you even thinking much about it, and they even come in cute colors for those who care about fashion while fighting diabetes. Pushing for better pump choices and smarter pumps is another thing Mary Tyler Moore did. She pushed Congress to fund the National Institute of Health for more studies and trials for the Artificial Pancreas Project. While she did not wear a pump herself (she told Larry King once that her dancer’s body was something she cherished, and she didn’t want to impact those lines with a device. I remember thinking: more power to her. Life with diabetes is about personal choices), she understood deeply the need to push for better tools for all. And push she has.
Continuous glucose monitors might not be covered by insurance for almost all were it not for Mary Tyler Moore, who once again went before Congress to push for better FDA guidance for approval, and helped raise funds to work toward widespread approval of them. Today, people with diabetes can track their ups and downs nearly every minute of every day, thanks very much to Mary Tyler Moore.
And yes, we are getting closer to that seemingly elusive cure. While it must be hard to be leading a battle that’s been on the front line for so long, Ms. Tyler Moore never, even for a moment, backed down. Human clinical studies on something called “encapsulation” begin soon in California. Researchers in the United States and in Europe are focusing on the new knowledge that pregnant women create new beta cells and that people with Type 1 still have some remaining beta cells. Figuring out the why of the first and then applying it to the “aha!” of the second could be the huge breakthrough so many care about. And again – Mary Tyler Moore is at the front of this.
I’m so sad about her current state. I miss seeing Dr. Levine at meetings, since he is now dedicating his time and effort to keeping his wife safe and comfortable. I’d give anything to turn back time and have someone before Mary Tyler Moore do all she has done so that she’d be the beneficiary of better insulin, better technology, better health.
But I’m also humbled and thankful. Because my now young-adult daughter, some 17 years into life with Type 1 diabetes, has Ms. Tyler Moore as her trailblazer and benefactor.
Thanks to Mary Tyler Moore, I have faith that my daughter will always be able to open her eyes and see. Thanks to her, I have confidence that my daughter will grow old with grace despite diabetes. Thanks to Mary Tyler Moore I have great faith that even better tools, smarter treatments, and biological breakthroughs and solutions, are coming down the road.
So today, as the world reads her news, I take this moment to say thank you. Mary and Robert – I celebrate you both and wish you the very best. I suggest the entire diabetes community do the same. Instead of just feeling sad, feel the pride and joy of all Mary Tyler Moore has done for us. Step outside, toss your virtual beret in the air and cheer this woman who has given so much of her life to help make the lives of people with Type 1 diabetes better.
Thank you, Mary. You truly have changed the world.