This is the third in our series of interviews with the 10 winners of the 2012 DiabetesMine Patient Voices Contest, who were announced back in June. This winner brings with her not only great innovation ideas for diabetes devices, but a unique perspective from the Pacific Islander minority community that’s so affected by type 2.
Ivoni Nash, who lives in Utah, tells us what it’s like for those in this minority community, and how diabetes technology might best address the real-world issues for these PWDs (people with diabetes). So often we focus on creating the “next big thing,” but Ivoni shares a story that helps us take a step back, and think about very basic improvements. In her winning contest video, Ivoni talks about simple ideas that would help many PWDs better understand their blood sugar readings and what they need to for treating highs or lows.
Today, Ivoni shares her own advocacy story, and what her hopes are regarding the DiabetesMine Innovation Summit coming up in November:
DM) Ivoni, your diabetes story began in the Pacific Islands, correct?
IN) Yes, I was born in Tonga (Neiafu, Vava’u) and moved to the United States in 1967, which is 45 years ago. I went to the LDS Business College and graduated with my AA in Business Education. I used to work for the Office of Vital Statistics in the U.S. Department of Health, and then worked for the Utah State Office of Education until I retired in 2005. I am married, and we have one son and four grandchildren. My mother was diagnosed with diabetes in her 40s, and she was among the very first people to be diagnosed with diabetes in Tonga. Actually, there is no word for “diabetes” in Tonga. From my mother, I learned how important it is to take care of your diabetes, take the right medication, and eat the right foods. The doctor even asked her, “How is it that I am telling you that you have diabetes, and you are more healthy than I am?”
What about your own diagnosis with diabetes?
I found out that I had diabetes in the 1980s when I was living in Utah. I went for a physical and the doctor told me I had “borderline diabetes,” but he didn’t tell me what to do to prevent it converting to full diabetes. When I went for my next physical, he told me I had type 2 diabetes. I took my medication but I didn’t have a glucometer. I had to go back to the doctor to have my blood sugar tested every three months. I didn’t own a glucometer until the late 1990s. It was so great to test myself and see the numbers!
When my doctor first told me I had diabetes, he didn’t really tell me what I needed to do manage it. I didn’t have a diabetes education class until much later. My doctor was not a diabetes specialist; he was a primary care doctor. It was only when the National Tongan American Society (NTAS) became involved with the Utah Diabetes Prevention and Control Program that we even knew there was a diabetes education class. I learned what to do to manage my diabetes from my mother. If this happened to me, and I speak English, I feel bad for the Pacific Islanders who don’t speak English because it is very difficult for them to learn what they need to do. When they are diagnosed, I tell them to go to a diabetes class and to see a specialist or diabetes clinic so they can get the best treatment and information. They really need to go to a specialist, not just a primary care doctor, who can help them manage their diabetes in a good way. I don’t want them to go through what I had to go through.
OK, help those of us who are geographically-challenged…Who exactly are Pacific Islanders?
Those are the people who are natives of any one of three parts of the region centered on the islands of the tropical Pacific Ocean – Polynesia, Melanesia and Micronesia. You are basically referring to the indigenous peoples of Hawaii, the Marianas, Samoans, Guamanian, Chamoru, Tahitians, Mariana Islander, and Chuukese. Pacific Islanders make up less than one percent of the U.S. population and don’t get a lot of attention, but they represent approximately 1.2 million people living in the United States.
You’re very involved with the National Tongan American Society and being a voice for Pacific Islanders. Tell us more about that.
In 1994, I helped create the NTAS, which received its 501(c)3 status in 1996. I have worked for this organization since its inception. Currently, I am the Health Program Director and I teach classes in disease self-management. I have recently started to host monthly support groups for diabetes.
Do you think of yourself as a patient advocate?
Yes. I help people with diabetes know what is going on. I give them educational materials and help them understand what the numbers mean on the glucometers. The doctors actually call me to help them set up their glucometers. Sometimes when people are hospitalized for diabetes, I call them and visit them to make sure they are doing what they need to do so they won’t need to be hospitalized again. I started support groups for Pacific Islanders with diabetes so they can learn from each other and understand how they can manage their diabetes better. In the support groups, I tell them diabetes is not a death sentence. I tell them we can manage it. Pacific Islanders are embarrassed to tell people they have diabetes; they sometimes see their family as cursed because they have diabetes. I tell them it’s okay- we can talk openly about it at the support groups.
As I said in the video, many Pacific Islanders have glucometers and can test their blood sugar, but they don’t know what the numbers mean. If a person has a blood glucose of 300, it’s just a number. They don’t know what they are supposed to do. If it’s low, they sometimes will shake and they think they are having an epileptic fit. And they won’t talk about it because it’s shameful to have epilepsy. I tell them no, it’s not epilepsy; they just need to take some hard candy or something else sweet to get their blood sugar up. They also don’t understand how the timing of the test matters. A lot of people test their blood sugar right after they eat and the levels are very high and they are scared. I tell them they need to wait two hours after a meal to get a better reading, and they should not test right after they’ve eaten a big meal. My community needs more information about diabetes and blood glucose levels to be given to them in a way that they can understand and that does not make them feel ashamed.
Any specific hopes for the DiabetesMine Innovation Summit?
I am excited to share the story of Pacific Islanders with others. We have very high rates of diabetes but too many of us do not have the right information to manage it well. So, I would like to be able to help Pacific Islanders have a voice and share the story of how Pacific Islanders have trouble managing their diabetes. We don’t have doctors in Utah who speak our language or understand our culture. Too many health care professionals don’t understand that we don’t know what the numbers on the glucometers mean. We need more information about diabetes that is just for us. I would like to represent the Pacific Islander community and help them in any way I can.
How do you think this might affect your life with diabetes going forward?
I am thrilled for this opportunity. I love teaching others about diabetes management and this makes me feel more confident about helping others. The YouTube link with my video went to so many Pacific Islanders, young and old, and I received so many comments that they were glad that I was representing them. Now when I go to Tongan events, people introduce me as “the Diabetes Lady.” They said, “Finally! They hear our story!” I even had people from Tonga congratulate me! I am excited to speak for and represent the Pacific Islander community.
Thanks for this reality check, Ivoni. We’re proud to have you in our lineup of advocates helping PWDs who need it the most, and we can’t wait to help you connect with some device makers to share their stories and perspective!