Empowering Doctors and Patients: Taking Charge of Diabetes
Dr. J. Gregory Rosenthal
My sister was diagnosed with type 1 diabetes at the age of 12. She died suddenly at 28, probably from a heart attack or a hypoglycemic episode. The last thing she said to me the night before she died was, "Why is it so dark?"
Diabetes back then was a disease that would pretty much eat you alive, nibbling away at every organ system. It still can, but with what we now know, it doesn’t have to. We know this for one simple reason. Just as the epidemic in type 2 diabetes heats up, we do much better in this country preventing complications with well-controlled type 1 patients.
I see plenty of severe type 1 eye complications in my practice in the Third World, where control isn't so good. We don't see so much here in the U.S. simply because we do better at tight control with kids than we do with the increasing numbers of patients who are type 2 patients.
What I See As A Retinal Surgeon
What else do we see here? As a retinal surgeon specializing in diabetic eye care, I see plenty. I see patients who do everything they can and for the most part they do very well. Diabetes is one of those situations where either you play hardball with it or it plays hardball with you. If the patient does take control though, if we all do it together, then the disease can't prevail.
I also see patients who hope that if they ignore the diabetes hard enough, it will go away. The trouble is, that is the only guaranteed way to lose the fight. It isn't until this becomes tragically clear that patients finally decide to fight back, and over and over I see the heartbreak of trying to gain back vision, independence, even life against the ravages of damage already done.
I see a full range of care in the community. For the most part, I have the honor of working with dedicated, caring physicians at many levels. I see great, selfless educators and nurse practitioners. I also see business leaders who share their leadership expertise and financial resources to build facilities and programs.
Unfortunately, there are also caregivers who see patients with diabetes as a financial opportunity. It is very easy to assign a diagnosis and perform a treatment without any pathology being present and without any opportunity for discovery. Amazingly, we often see such people admired for their "profitability" by administrators who don't understand the truth. Predators like this are sometimes rewarded instead of punished, and that is something that hurts patients, dishonors the real caregivers, and tarnishes the credibility of program leaders.
So, what do we need? More research? Sure, but we can do so much better with the things we already know. More doctors? Sure, but we also have so many other resources these days. More money? More facilities? Rewarding profits over integrity?
We Need Empowered Patients and Here's How
What we need most is patients empowered with the knowledge that they can win, and with the information they need to do so. Eye patients need to know that:
- The eye really is a window into the body, and what’s going on there is a reflection of what’s happening in the kidney, the nerves, the brain, the GI tract ... everywhere.
- There is a ten-fold lower risk of severe vision loss, kidney failure, and other complications with a Hemoglobin A1c of 6 compared to a level of 10. The A1c is a test that can diagnose both diabetes and pre-diabetes.
- Current monitoring and treatments are vastly more efficient and easier to do that in the past. Current diabetes care is not what you saw your elders suffer through.
- If you are told that you need eye lasers or other surgery, you probably, but not necessarily, have visual symptoms. You should be shown the leaky spots on the pictures of the back of your eyes. If you aren't shown this, you should get another opinion and discuss the disparity with your primary medical doctor.
- There are many myths from the past, one of which is that we cannot gain back any vision that is lost. That is absolutely untrue! With current laser techniques, medicines, and other interventions, we can often make dramatic improvements in vision
- There is a lot new out there for eye care. There are new legitimate things and there are lots and lots of scams. Your doctor should take the time to discuss these with you and be your advocate to separate the wheat from the chaff. I probably spend as much time educating my patients as actually providing testing or care.
Doctors Need Moral Courage to Put the Patient First
If we as caregivers really want to beat diabetes, we need the moral courage to put the patient first, the focus to see opportunities that are right in front of us, and the humility to work with each other as a team. We need to do a better job of coordinating care.
We can do that right here and now. We have the technology, the communications, the facilities, and the people. There are distractions: healthcare reform, big business agendas, profiteers. That's just noise. We have the pieces. We are right there at the doorstep. We simply need to step through the door.
- Vivian: Living with Diabetes and Visual Impairment
Vivian was diagnosed with diabetes twenty years ago, at age 58. Ten years later, she was diagnosed with diabetic retinopathy and spinal stenosis. She talks about how she is living and coping with her diabetes and some of the tools and techniques she uses.