By Kara Hansen, assistant director of the Chronic Disease Coalition
I recently stumbled upon a blog post by a diabetes patient that hit home for a number of reasons, including the fact it was written as a letter to my late uncle Jim Hansen, a longtime pediatric endocrinologist in Portland, Oregon. When he died of cancer in 2003, he had clearly made an impact on many young people with Type 1 diabetes. The letter, written by one of his patients and published on Diabetes Mine long ago, is testament to that.
A second reason is that this letter highlighted numerous issues faced not only by diabetes patients, but by people with any chronic disease. Maintaining access to a health care provider who knows you and your history can be critical to managing your disease’s symptoms so you can live your life – so you can go to work or to school, so you can spend time with friends and family. Stable access to health care coverage and appropriate treatment can keep your symptoms in check, ensuring your comfort and preventing more expensive health complications down the line.
In her blog post, Allison Nimlos (then Allison Blass – she was engaged to be married at the time) wrote to my uncle Jim, her first diabetes doctor, who had died eight years prior. She began:
A lot has happened in eight years, yet at the same time, I feel like not a whole lot has changed. There’s still no cure for diabetes. We’re still trying to figure out how to make decent technology for patients. We’re still trying to figure out how to use stem cells to cure diseases. We’re still trying to figure out what causes diabetes. We’re still trying to figure out how to get everyone on the same page. Some things never change.
Nimlos went on to describe the experience of being diagnosed with a chronic disease and how, even as a child, she became an engaged patient. Although in today’s health care environment, insurers often try to limit how much they’ll pay for a doctor’s time, a huge difference can be seen when a physician has the time to connect with their patient – leading to much better health outcomes in the long run. Nimlos wrote:
I remember the night I was admitted into the hospital. I clearly remember laying in the hospital bed, after vomiting all over myself and the nurse. I didn’t feel so hot. My mom was on my left, and my dad was on my right, and you were standing at the foot of the bed, explaining to us what the hell had just happened. I’m afraid I don’t remember a word you said.
I remember a lot of what you did, though. I remember you drawing me a diagram of how insulin works on a piece of paper at one of my appointments. I wasn’t fully managing my diabetes on my own yet, yet you always talked to me as if I were the most important person in the room. And I suppose I was. I remember your light touch when you check my thyroid glands and how you humored me when I laughed at seeing the “freeway” of blood vessels in my eyes. I thought that was the coolest. I remember how you never raised your voice, and how even when we had to wait over an hour for our appointment, my mom and I never really cared. We knew it was because you gave your patients the exact amount of time they needed, and you wouldn’t rush us just because you were running late.
I remember how you always asked me if I had any questions at the end of our appointments. I always felt a little sheepish when I didn’t. I guess you had the expectations that I should be an engaged patient, even if I was only 12 years old. I like to think I’m getting better at it. You would be all over this e-patient stuff, and I’m pretty sure you would have more Twitter followers than me.
It made me smile to see that my uncle’s patients were able to know him as a person (one who happened to love gadgets and technology and would likely be big on Twitter) and not just as their doctor. Nimlos, who began writing about diabetes patient issues as a youth, also recounted interviewing my uncle for her first diabetes website, CureNow:
I think I interviewed you about Lantus. Do you remember that? It seems funny now that Lantus would have been such a big freaking deal, but it was. Sayonara NPH! I dragged in this enormous tape recorder from my high school so I could record our interview. So old school. I’m still writing about diabetes, actually, although we’re slightly more hi-tech these days. I’m kind of gunning for an iPad.
Man, you would love the iPad.
Nimlos also talked about how she felt when my uncle Jim passed away after a long battle with cancer. She recounted:
I remember when I found out that you had died. My mother told me, after someone had told her. There are no words to describe how crushed we were. ‘One of the good ones,’ my mom said. You were one of the good ones, and now you were gone. I went to your memorial. It was one of the hardest things I have ever been through. I don’t think I have ever been so sad.
You’ve set the bar high for doctors, though I’ll admit that I’ve been pretty lucky in scoring some awesome physicians. But nobody quite compares to you. Nobody has made me feel as empowered as you did. Nobody has made me feel that I was going to be just fine quite like you. You made me feel like I could do this. And now I am doing this. I’m doing this because you showed me how.
While my uncle is no longer with us, the issues highlighted in the letter remain true today.
Together we can raise awareness and fight back against insurance companies that try to limit our access to doctors, who harm our ability to access the medications our doctors prescribe, who try to keep those with pre-existing or chronic conditions from getting or keeping their insurance coverage.
We may face a lot of uncertainty with access to health care these days, but here’s one thing I know is true: There is strength in numbers. The Chronic Disease Coalition will keep advocating for patients’ rights, and I hope that you will join us.
Allison Nimlos, whose 2011 blog post is featured in the above excerpts, is now a marriage and family therapist< in Minneapolis, Minnesota. A Type 1 diabetes patient, she is a longtime advocate and has written for a wide range of diabetes publications and websites. You can read her full letter by clicking here.