which was purchased last year by Medtronic for $4 billion. But first and foremost, she's the mother of a daughter
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I recently chatted at length with Karen about this fascinating mix of personal D-struggles and being a scientist/businesswoman. Among other insights, she makes some very compelling arguments about why she's chosen to work so closely with the ADA rather than JDRF. She supports them both, of course, but there's nothing like a scientist/mother for the ultimate in pragmatism. Take a read for yourself:
Let's start with your personal connection to diabetes. How did you deal with your toddler's diagnosis?
It was just a few days after Nicola's 2nd birthday. She was still in diapers. We just thought we needed bigger diapers, because she was wetting the bed so much. She would stand in front of fridge by the water dispenser and yell, "wawa, wawa!" She wasn't verbal yet, but we thought something might be going on.
It was Indian summer, incredibly hot. We had my brother's birthday party on Oct. 4, and she kept soaking her diapers. Her Dad took her in, and the pediatrician said it was just the hot weather. The doctor glued a little bag on her to pee in it, in order to measure the urine.
I'm a biochemist and researcher in diabetes and obesity, and my husband John is also biochemist focused on immunology. At one point we just turned to each other and said, "it's diabetes."
Was there any family history?
No, but 75% of cases of new onset Type 1 diabetes have no diabetes in the family.
In fact was the classic season of Type 1 diabetes onset, October. There's a theory of the infectious component, the so-called "final insult" that hits the pancreas that's pre-disposed to diabetes at that time of year. It may be infection (internal), or toxins (environmental), who knows? There's no definitive evidence yet, but the peak appears to be late September to mid-October.
Your daughter's a teenager now, correct? Did you mainly manage her diabetes for her while she was growing up, or try to push her to take charge herself?
She's 17 now, a senior in High School. She was an avid soccer player, but she 's had a mid-foot dislocation, common to soccer players and people with diabetes, that's stopped her career in soccer; she's mourning over that. She developed arthritis in her Lisfranc joint that will always be with her. Otherwise she's doing great.
Our philosophy was always: if she can do it herself, she should. One day before her fourth birthday, she grabbed the meter and said, "I do it self." Our doctor was astounded. You know, we tend to assume people can't do things, like kids making good food choices. They can.
But those were also days when the medical dogma was no glucose at all for people with diabetes. They were told they should eat maltitol (sugar alcohols) instead, which cause diarrhea and stomach cramps. We always incorporated some natural glucose into her diet. We incorporated dessert into the carb count. In fact, she got "shot treats" -- we put candies in jars, labeled 2, 3 or 4g carb. She could have any combination up to 6g, but no more.
Basically, our was goal to teach Nicola everything we knew about diabetes, the underpinnings and the science. We figured, "it's a huge thing that effects your life. We need to focus on it now, so that later we don't have to..."
Did you get involved with ADA right away? Most parents seem directly drawn to the JDRF.
I had just recently left field of diabetes to focus on osteoporosis. But with a little child it's very, very hard. Everyone controls what they can control. I felt felt drawn back to diabetes, so I revved up my professional membership in ADA, and went to their annual conference.
I told an NIH scientist about my feelings, and he said, why don't you volunteer for the ADA? Having a scientist involved on the advocacy side is rare. So we started doing the fundraising walk, and the first year we raised $1000, then the second year $4000, and so on. I got a call asking me to set up a chapter on the San Francisco Peninsula in 1996.
I know many parents drawn are drawn to JDRF, and they do great work. But it is short-sighted to think that Type 2 doesn't have important relevance for Type 1 diabetes and and vice-versa. Scientifically, they can benefit from many of the same discoveries.
The ADA sets the standard for diabetes care in this country, and they have a legal advocacy group that interfaces with the police, the prison system, etc. They lobby Congress to help diabetics get pilot's licenses, truck driver's licenses, and to secure research funds. Here in California they just won an important victory with the School Nurse Association. That group has finally agreed that non-medical professionals can help treat diabetic children in school. Before, it had to be a school nurse, but there are virtually no school nurses anymore. The ADA finally brokered a settlement.
The other aspect is professional education. The ADA offers seminars, post-graduate courses, etc., and this is very important because the level of understanding of diabetes in the medical profession is not where it should be. The ADA has dedicated itself to being advocates, providing education, and funding research. They just have a bigger scope overall.
When kids experience discrimination in school, the JDRF sends the families to the ADA for help. JDRF does participate, by submitting supporting briefs for example, but they don't take on litigation themselves. Their focus is on the research and the cure. Meanwhile, we live with diabetes and live with discrimination. People have diabetes today, and they need help today.
You're also now on the Board of Directors of the ADA Research Foundation, which has been criticized for not putting the funding dollars in the right place. In brief, how does that group function?
The priorities are set by the physicians who advise the ADA, using rigorous, scientific guidelines provided by thought leaders. As board members, we raise the money.
I'm actually new to this role -- I'll have my first meeting in May. In the meantime I'm making phone calls. And I put my money where my mouth is. We gave a major gift ourselves the last few years.
I'd say the projects are split 50/50 between Type 1 and Type 2. But the reality is, most research is relevant to both -- the process of complications, insulin resistance, the alterations of the pancreas that take place in Type 2, which are also very important to understanding Type 1, for example.
How does your passion for these advancements translate into your work at Kyphon?
I met a surgeon who conceived of an operation to address fractures of the spine caused by osteoporosis. Before that, treatment was painkillers and physical therapy. There are enormous health consequences, leading to spinal deformity, caused by actual fractures of the bone in the spine. This is what causes people to bend forward (Dowager's hump), and it's much more painful than generally recognized.
The surgeon had invented an elegant procedure whereby you insert two tiny balloons from the back into the bones that are crushed. You inflate the balloons with liquid, which compacts the inner soft destroyed bone, and you can see the whole shape of bone moving back toward normal. They you can fill the space with a liquid plastic that hardens. It's all done through two little straws -- very minimally invasive. This is called Kyphoplasty.
I ran Kyphon for five years before it was bought by Medtronic last year. It was exciting and scary, very different -- whereas the emotional part of a disease is very difficult. It's hard to accept. You try to put it in the background so you can go on and live your life.
What diabetes technologies or treatments or advances toward a cure look most promising to you -— let's say to be realized in the next 5-10 years?
I don't know of anything I'd be confident to say will be ready 5-10 years from now that's really meaningful.
After Nicola was diagnosed, I called a couple of tremendous physicians and researchers I knew to let them know, and they said, "we'll have islet cell transplantation 10 years from now." I said that knowing the complexity of the disease, it's not going to happen.
I don't want people to give up hope because every day we're learning more about the cells that make insulin, how to potentially make those cells, how to keep alive when they're to put into people. People are working on it day and night. The big issue is, how safe is this? We have to go slowly to be sure it works and works well. It's very complex, there are lots of problems to solve. That's why it's taking time.
So as a health executive and also an effected mother, what would you say to other parents of children with Type 1 at this juncture in time?
I'm grateful for every single thing that's being done right now to help make it easier for people with diabetes to get through the day safely with good blood glucose control.
Every parent has their way and their philosophy. I don't know what they feel and what they're going through. But know what I felt. It's terrifying to have child at high risk, but if you're overbearing it will backfire. You just need to control the diabetes, so they can get on the swings and go play soccer.
Never ever be ashamed. You test anywhere anytime. Be comfortable with it and help other people get comfortable with it.
Remember: you can't get it wrong all the time.
Thank you, Karen, for sharing all of this with the OC. There's nothing quite as encouraging as (measured) hope grounded in solid science.