Saturday, September 28, 2013

Until the Cure

Diabetes is Goliath, and researchers often feel like David. How are we ever going to take down such a huge opponent? Where is the cure?

I want those researchers to focus on the cure. But I also support work that looks into how we can live well alongside the beast that is diabetes.

But I have been seeing a lot of angry comments swirling around the internet regarding support of non-cure based research, especially pertaining to the artificial pancreas.
"We don't want another fancy pump! We want a cure!"
"The artificial pancreas is just another money-making device for big pharma! We want a cure!"

I understand. I have had diabetes for 20 years and would give anything to not have it. I would be delighted to be "out of a job" in caring for kids with Type I. There are few other wishes I use on birthday candles and fallen eyelashes.

But I still have a hard time fully sympathizing with those sentiments.

I gave a lecture this past week to first year medical students. They wanted to learn about the dual-hormone artificial pancreas, but starting there would be like picking up a book and reading the second to last chapter first. I had to start from the beginning to help them really appreciate how significant the artificial pancreas will be.

We went over how doctors did not even know that a lack of insulin was what caused diabetes for the 3,500 years it was recognized as an illness. How people died within a year of diagnosis from starvation until Drs. Banting and Best discovered how to effectively use insulin. How the insulin had to be drawn into glass syringes that had to be sterilized with heat and how the very long, very thick needles had to be hand-sharpened each day. And about how the insulin came from animals, which created a series of side-effects in many patients until human insulin was able to be synthesized. And once we had human insulin, things improved again with fast-acting Humalog/Novolog and long-acting Lantus. Insulin pumps were invented and refined year after year.
We also discussed how the measure of insulin's effectiveness could only be examined through urine, then through cumbersome blood tests, and ultimately with the advent of continuous glucose monitoring.

We have made such amazing strides in the last 90 years, but mostly rapidly within the last 30 years. Lantus came out when I was in high school and completely changed my quality of life -- no more rigid time schedules, no more inflexible meal plans. I felt like my day wasn't dictated by diabetes in nearly the same way it had been for so many years. And when pump technology improved, it changed my life for the better tenfold. And my CGM is the only reason I have been able to maintain the tight control that I'm in now.

It is hard to appreciate how far we've come when all you have known is pumps and CGGs. All of these advancements were only possible through research - in petri dishes, in animals, in humans. Research gave us these gifts.

The development of refined insulin saved millions of lives. But what if we had stopped there and only focused on the cure? We wouldn't have any of the amazing products that help us live well with diabetes today.

The artificial pancreas is going to be the next big life-changer. The preliminary data is astounding, with Dr. Damiano's study giving trial patients projected A1Cs of 6.3% with less work than they put into their diabetes now. Why would we not support this? Researchers are devoting their lives to this work and many have children and other family members with Type 1 Diabetes. They hunger for the cure, too. But they hope to make life with diabetes better in the meantime.

People often mistakenly believe that supporting non-cure based research detracts from finding the cure. There are armies of researchers trying to realize hundreds of different possibilities. Projects are taking place simultaneously all over the world to treat, prevent, AND cure diabetes.

Shouldn't we continue to tackle this beast from all angles? My answer to that question will always be yes.

And in this way, we'll eventually take it down.

Sunday, September 22, 2013

Grinch

I don’t like denying patients anything. I always try to find a way to make things work. An appointment time on a day I don’t usually work? I can swing that. A diabetes supply that isn’t covered by their insurance? I will do my best to figure something out.

But the other day I was asked to sign off on a wish – of the Make-a-Wish variety. Except the Make-a-Wish foundation had already deemed the patient medically unqualified for their services, so they forwarded the requested wish to a similar foundation. That foundation called me.

I asked them what their criteria are for granting wishes so I could better assess this patient’s qualifications. They told me they fund wishes for children aged 2 ½ to 18 years with “life-threatening illnesses” that are either “progressive, degenetrative, or debilitating.”

I mulled it over in my mind.

Is diabetes a life-threatening illness? Yes, it can be.
Is it progressive? Maybe. Taming it does not always become MORE difficult over time, but some people do develop hypoglycemia unawareness later in life.
Degenerative? No, that term is usually reserved for horrible neurologic diseases that render patients unable to communicate, feed themselves, ambulate, etc.
Debilitating? Yes. But only with poor control for years and years. And even then, it isn’t debilitating for everyone.

Our office knows this patient well. His family is lovely and his father has a prominent position in the community. His diabetes has been impressively controlled since he was diagnosed seven years prior. He actively participates in multiple sports and after-school activities. He is planning on attending a competitive university. Diabetes has never held him back and was showing no signs that it ever would.

I decided that I had no choice but to sign that the patient was not medically eligible for the wish as he did not meet the criteria put forth by the organization. The woman on the phone – clearly seeking the opposite answer – told me that their criteria are “more open to interpretation” than those of the Make-A-Wish Foundation.

I mulled this over, as well.

There are other patients in our practice that qualify to have the rules bent a little more in their favor. For instance, there is a child that had to be taken from his home because his father is in jail and his mother has a drug addiction that left her unable to care for him and his diabetes. Foster homes are difficult for ANY child, but even more so for him because few families are willing to undergo the training and devote the time necessary to care for a child with diabetes. His diabetes is holding him back and making his life palpably more difficult – a life that is gut-wrenchingly difficult already.

It made me uncomfortable to tell the foundation representative that I could not sign off on the request, even though this particular patient is living such a full and vibrant life.

“It breaks my heart to have to call them and tell them they were denied,” she said to me.

“I’m sorry. But it breaks my heart even more to use your funds on this request that would be better served for a child that needs it more,” I responded. I signed the denial and faxed the form with resolve.

Nevertheless, I have felt like a grinch ever since.

Tuesday, September 17, 2013

Time Bomb

Time slips by quietly until you are almost 18 years old. It seems like everyone counts down the days until that big milestone. And when it arrives, you instantly morph from child to (young) adult.

At least in the eyes of the law.

The day a child turns 18 can be bittersweet for pediatric physicians. Graduating a patient from the practice can be difficult to do if a close rapport has been established over many years, or it can be difficult for many other reasons.

Not long ago I treated a patient admitted to the pediatric intensive care unit for diabetic ketoacidosis, but was not familiar with him as he was followed elsewhere for his routine outpatient diabetes care. I looked at the long list of visits that filled his hospital chart and was appalled – in the 4 years since he had been diagnosed with Type 1 Diabetes he had been admitted a handful of times for DKA and had over 10 documented hypoglycemic seizures. There were notes about his ongoing refusal to partake in treatment with psychology or psychiatry despite his family’s pleas and how he would become combative and strong-arm his way out of the hospital. He could not legally sign himself out of the hospital, but his parents were always left with little choice but to sign the discharge papers against medical advice. His relationship with them was so strained over his poorly controlled diabetes that he often lived with friends for weeks on end instead of coming home.

I waited until he was alone in the hospital room to sit down and talk with him. I pointed out the number of admissions he had in 2013 alone, and he corrected me. “It’s actually way more than that, they just haven’t all been at this hospital. I’ve had over 20 hypoglycemic seizures and over 10 admissions for DKA. I feel like I’ve been in the hospital longer than I’ve been out.”

I asked him if he had thoughts of suicide, because his erratic insulin administration (skipping shots and then ultimately overdosing) could very well kill him. He denied suicidality, but his actions spoke louder.

“I just don’t care,” he said as he looked at me. His face was as indifferent as his words.

Looking back down at his chart, I realized he was only a few weeks away from turning 18. This was significant, because in a few short weeks he would have the legal power to refuse all treatment for himself at his will. If he kept going down his current path, he would surely meet a premature death. Our endocrine team discussed the situation with his own endocrinologist and the ICU team. We all agreed that something drastic had to be done while we still had any power over him -- while he was still a minor.

His parents were approached with the idea to admit him to a medical-psychiatric unit and carry through with it even if he fought and argued and refused. They worried about his potential reaction, but knew that his health was dangerously at stake. His parents, desperate for any intervention that would help their son, agreed.

When the patient heard about the plan involving inpatient med-psych treatment, he said no.
When we did not accept that answer, he ripped his IV lines out and headed for the door.
When security blocked him, he tried to fight them off.
When he continued to fight, we had to give him a sedative and transfer him to a unit that rested behind a double set of locking doors.

It felt like a harsh way to handle a person who is almost an adult. But he wasn’t an adult – not yet. After that day, the time leading up to his 18th birthday may have ticked by very slowly for him. But it is our job to ensure that his time keeps ticking at all.

Wednesday, September 11, 2013

Attachment

Every once in a while, the tables turn and your own life experiences stare back at you. It is an odd feeling, to view things from the other side.

I have been going to the ophthalmologist each week, like a good patient, to patiently sit while he burns my retina. The lasering itself is only slightly uncomfortable (probably more anxiety-driven discomfort than anything else) and is relatively short. Every week my mother calls me on my way to the appointment to wish me well and express her distress over her being so far away from me. Her calls are like a warm hug and ease my pre-appointment jitters. And she is always the first person I call after I’m out, though the conversation is always the same. She expresses her pride that I am doing what I need to do to stay healthy, and then offers to fly up to be with me for the next appointment. It is sweet, but silly.

She did finally fly up to visit with my father, though not because of my eyes. We had long planned a visit over Labor Day weekend with a short stop-over in New York to attend the U.S. Open tennis tournament. It was a wonderful weekend, and I didn’t think about my eyes and the damaged retinas inside of them as they followed those tennis balls back and forth across the tennis court. Things were good.

But over breakfast the next morning I could tell something was wrong - though not with me. My mother looked like she hadn’t slept at all. She told me that throughout the previous day she had seen “floaters” in her right eye and before bed she saw a series of “lightning-like” flashes in her right eye. We only briefly covered common eye problems in medical school, but I remembered enough to be concerned that she was possibly experiencing a retinal detachment.

I quickly called my ophthalmologist and explained, but the doctors were in the operating room that day. The nurse recommended an optometrist that the office trusts, and thanks to some amazing luck he was able and willing to squeeze my mother into his schedule for an urgent dilated eye exam.

As we drove to the appointment, I felt my mother’s stress build the same way mine does before my eye appointments. I held her hand as we walked toward a scenario I thought was only ever going to pertain to me.

I took a seat near my mother’s exam chair and, in an effort to lighten things up, chatted up the optometrist. I joked about how I had been spending so much time with eye doctors lately given my recent diabetic retinopathy. His own eyes widened, and he shared that he has had Type 1 Diabetes for 20 years as well, and that he too is on a pump. Even though it had no bearing on his examination skills, our common bond somehow put me at ease. And he was wonderful with my extremely nervous mother, speaking softly and answering her questions clearly.

Her retina had not detached, but her posterior vitreous had. He explained to her that the gel in the eye shrinks with age, and the vast majority of older people experience this. The shrinking gel causes some pull on the retina, causing the flashes and floaters. She is at risk of retinal detachment as it shrinks further, but the risk is small and it will be caught early if it does happen. It just needs to be watched.

As we walked out of the office, again hand in hand, I better understood why she always wishes she was there with me during my own appointments. Health scares are scary for the whole family, not just the patient.

The tables may have turned on us that day, but I am so grateful I was able to sit right next to her.