Tuesday, May 26, 2009

Justice Sotomayor

BREAKING NEWS, it says everywhere. President Obama is going to nominate Judge Sonia Sotomayor of the United States Court of Appeals for the Second Circuit to serve on the United States Supreme Court. This is a marvelous choice -- not because she's a woman, and not only because she's Latina, but because of other aspects of who she is.

Judge Sotomayor grew up very poor in the Bronx. She has had diabetes since age 8, and was raised alone by her mother from age 9 on. She grew up to excel her way through Princeton and Yale Law School, and she has served on the Second Circuit with distinction. Although I have not had the privilege of arguing before her, she is, by reputation, a solid jurist, and her written opinions are intelligent and fair.

I could be excited at the prospect of a second woman on the Court, and the first Latina. But I'm more excited by the facts that she has battled chronic illness, and that she knows what it's like to have to fight for everything you achieve. President Obama said he wanted to choose someone with empathy. Coming from rough and tumble beginnings creates either a fierce temper or empathy (or maybe a little of both). A Justice who did not get where she is based solely on grades she earned in school -- a Justice who has overcome obstacles like poverty and illness, along with the need to excel in school and work -- will have empathy. Or so I hope.

I have been watching President Obama from a place of hope. I have hoped he would manage our economic crisis. I have hoped that he would get us out of Iraq and close Guantanamo. I have hoped that he would lead us to meaningful health care reform. The nomination of Sonia Sotomayor to the United States Supreme Court helps me to believe that my hope was not misplaced. Jennifer


I should be feeling better today. I had a whole three days off, and I did nothing at all. Well, I watched Frost/Nixon, which was good but not great, and Australia, which was awful, and disc 1 of the 50th Anniversary of Perry Mason -- how could it not be great?! -- but I did nothing physical at all. I left the house only to go to the grocery store. Other than that, Emily and I snuggled and slept and lazed around.

So why don't I feel better today?

The truth is that I'm not sleepy tired; I'm sick tired. I don't know how to describe it if you don't know what I'm talking about. Chronic illness tired is a fatigue that can't be slept away. The only relief I get with a day off is that it's a day when I don't have to push myself. There is no amount of sleep that makes it go away.

On work days, I push myself to get going, but once I'm going, I manage okay for the most part. Days when I have to go out are very hard for me. It's not just that I can't eat when I'm out of the house. It's also that the energy it takes to propel myself out the door is so massive, and I have to sustain that energy level until I get home. It's very hard.

I make no week-end plans. I don't go out in the evening. I don't do much that can't be done from home. And I don't feel bored or alone. I just feel exhausted.

I would like to know what it's like to have some energy, to be able to choose to go to a movie rather than watching one in bed, to be able to see friends rather than hanging with just my best friend Emily (the cat). I would like to know what it's like to look forward to anything. I dread everything because just thinking about doing things makes me tired.

I've figured out that, when I'm really depressed, it's usually that I'm really tired. I can predict that this will happen after I travel or after a particularly hard week. But there are times like now when I can't shake it even when I take time to rest. I don't know if it's still hang-over from my trip to Seattle or from the c-diff. I gave myself a B-12 shot recently, so it's not that. My gut is far from anything even I would consider normal, but the frequency is not so bad that I should feel this exhausted. But my friend Denise asked me to meet her on Saturday, and my friend Elaine is trying to schedule a time to get together, and my only thought is that I'm so frigging tired that I don't want to go anywhere, see anybody, do anything.

I'll never be diagnosed with chronic fatigue syndrome. CFS is a diagnosis of exclusion, so since I have Crohn's disease and gastroparesis, I'll never be diagnosed with CFS. And my blood work is pretty good lately. So there's no reason on paper that I should be this tired. But my knees are absolutely agonizing, and my hands aren't a whole lot better, so there's some Crohn's arthritis going on, along with my stool being abnormal (even for me). I guess I should assume that the fatigue is related to my Crohn's. But I don't like that answer because there's nothing I can do about it.

Well, there's an email in my Inbox, a patient looking for help. So I'd better go tend to it. From the neck up, I don't feel too bad. So hopefully, I can fake my way through the day on brains, without regard for the rest of me.

It's just really hard. Jennifer

Wednesday, May 20, 2009


This is a really hard subject for me, but if I'm going to be brave and put myself out there for all the world to see and critique, I might as well talk about the obvious, my weight. It's bad. I am out of breath when I walk up stairs. My knees hurt -- partly from Crohn's-related arthritis, but partly because of my weight. I have no stamina. Part of that is from being sick, but part of that is about my weight.

I'm not very good at moderation. I can not eat at all for extended periods of time without problem, or I can eat whatever I want. I'm not good at the in between. Because of the gastroparesis and accompanying nausea, I never feel hungry -- until I start eating, and then I realize how hungry I am and I scarf down whatever I can get my hands on. In the past year, since I was diagnosed with gastroparesis, I have allowed myself to eat anything that looks or sounds good because there's so much I can't eat any more. The one thing I can digest easily is sweets -- candy, soft cookies and cake, frozen yogurt. So I've gained weight.

Why am I talking about this here? Obesity is a huge health issue. I don't know why I don't have diabetes, but it would be really good if I didn't develop it. I have what's called fatty liver that resulted from a weird drug reaction, but it's exacerbated by obesity. Bottom line? I am not doing all I can to manage my illnesses as long as I don't address my weight.

I'm the sort of person who has to mull things over for awhile before they really take hold. So I think I'm working up to going on a serious diet. Not so much a diet as eating more healthily. It's hard. I can't eat fresh fruits, fresh veggies, meat, milk products, whole grains, nuts, or beans. That sort of leaves . . . not much other than sugar. I can eat eggs, potatoes, pasta, rice, soup without too much solid stuff in it, and pureed stuff like apple sauce and baby food veggies, which I've tried and just can't handle.

I start my day fine -- a chai soy latte gives me protein from soy milk, and although it's sugary, a certain amount of that is okay, and since that's all I eat all day, it's okay. And what I eat for dinner is okay -- soup or lactaid cottage cheese or scrambled eggs or macaroni. It's what I eat after dinner that has to go.

If I'm going to be the poster child for the proposition that patients can and should manage their own illnesses to a large extent, I think I have to bite this bullet. It's sort of how I used to think about my brother when he was way overweight and a doctor whose job entailed telling people with vascular disease that they need to lose weight. It's hard to be taken seriously when you don't follow your own advice.

So I'm working up to this. My current plan is to finish up the "bad" stuff I have in the house and not buy any more. That gives me a chance to ease into it, which is just the way I operate -- it takes me time to embrace new ideas, but once I do, I'm totally committed. If I cut out desert and keep swimming every day, I should be able to drop a good amount of weight pretty quickly.

And writing this here makes it real and sort of forces me to follow through. So you readers get to help be my conscience and hold my feet to the fire. This is something I need to do, I'm going to do. I will. Jennifer

Friday, May 15, 2009

Heatlh Care Reform that Works

This week, the Senate Finance Committee issued its proposals for reforming our health care system, and invited comments. I read the entire 63 page document looking for a section on chronic disease management. I finally found it -- sort of. If you call smoking cessation and teaching people to take an aspirin a day chronic disease management. Since I don't, I submitted the following comments:

The Honorable Max Baucus
Chair, Senate Finance Committee
219 Dirksen Senate Office Building
Washington, DC 20510
Fax: (202) 224-9412

The Honorable Charles Grassley
Ranking Member, Senate Finance Committee
135 Hart Senate Office Building
Washington, DC 20510
Fax: (202) 224-6020

Dear Chairman Baucus and Senator Grassley:

Thank you for this opportunity to comment on your recent paper, “Transforming the Health Care Delivery System: Proposals to Improve Patient Care and Reduce Health Care Costs.”

Advocacy for Patients with Chronic Illness, Inc. provides free information, advice, and advocacy services to patients with chronic illnesses nationwide in areas including health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. Having provided assistance to thousands of chronically ill patients, we have a unique perspective on the needs of the chronically ill and the obstacles they must surmount in attempting to meet those needs. It is from this perspective that we reviewed the Committee’s proposals.

We very much appreciate the care and thought that went into the formulation of your proposals. Eliminating pre-existing condition exclusions and lifetime maximums is a huge step forward for the chronically ill. We also support a personal responsibility requirement that will enable Americans to share the costs of treating the chronically ill, just as we share the cost of Medicare and Social Security. We do, however, have some thoughts on ways that we feel your proposals could be improved as applied to the chronically ill.

First, you note that cost sharing reduces utilization, so that seniors with Medicare supplemental insurance are more likely to get annual mammograms, for example, than those without Medigap coverage. Thus, we are concerned about your emphasis on Medicare as a model because it does require 20 percent coinsurance, which is impossible to afford for many individuals. The burden of coinsurance is greater on the chronically ill because of their heightened utilization of the health care system.

In addition, currently, there are states in which it is nearly impossible for young people who are disabled to purchase Medigap policies at all, even if they can afford one. This should be eradicated; Medigap plans should be available on a guaranteed issue basis without pre-existing condition exclusions for everyone, regardless of age.

We also have serious misgivings about using Medicare Part D as a model for a prescription drug benefit. Medicare Part D has spawned some very burdensome unintended results, both in the Medicare system and in the context of commercial insurance, which often follows Medicare. For example, Medicare Part D is limited statutorily for paying only for FDA-approved uses. This makes sense, of course, for medications that are not tried and tested. However, there are medications that have been used off-label for more than 25 years – for example, 6-mercaptopurine is FDA approved as a chemotherapy drug, but it has been used to treat Crohn’s disease for more than 25 years – and because of this limitation in Medicare Part D, insurers that routinely paid for this medication in the past have now begun to deny coverage. To the extent that Medicare – and Part D in particular – has provided insurers with reasons to deny coverage of medically necessary, proven therapies, it should not be the model.

This point leads to perhaps the largest gap in the Finance Committee proposals, and that is the role of utilization review and management. Patients are afraid that we will not get the care we need under any public option. We are concerned that cost cutting means cutting treatment. It is not the case that patients want more care than they need; indeed, most patients with chronic illness would be very pleased to take fewer medications, see doctors less often, and undergo fewer tests and treatments. However, our experience is that we have to fight for the care that we need. Advocacy for Patients writes approximately 500 insurance appeals per year, and we have a roughly an 85 percent rate of success. If insurers were denying coverage only where appropriate, we should not be winning so many of our appeals.

This is probably the most vexing problem facing the chronically ill in the context of insurance, and this entire area is not addressed in most discussions of health care reform, including the Committee’s proposals. We hear “comparative effectiveness research,” and it translates into our experience of having to fight for what our doctors say we need. We hear “cost control,” and to us, it means that we will have to fight even harder than we already do now.

We know that treatment of chronic conditions saves money by ensuring that our conditions do not rage out of control, requiring more expensive hospitalizations, surgeries, and other treatments. Controlling cost cannot mean depriving us of the care we need to keep our illnesses in check. Yet, it is difficult for us to see how else the cost of chronic illness will be minimized not only by the Committee’s proposals, but by most of the proposals that are circulating.

The Committee rightly emphasizes prevention and wellness. On a prospective basis, preventing chronic illness is the most efficient and effective means of curbing cost. However, smoking cessation or taking aspirin will not cure my Crohn’s disease or my friend’s lupus or my colleague’s multiple sclerosis.

In our view, the only way to effectively control the cost of chronic illness is to involve patients in their own care management. Patients are a wasted resource in our health care system. They can learn to manage their care with just a little guidance. Patients who manage their own care are more compliant with doctor’s orders and, thus, they achieve better health outcomes, thereby reducing cost. That is how to control the cost of chronic illness. A cost-effective system of patient education with minimal assistance from patient navigators would save millions of dollars every year. We know. We do it every day.

With that said, we very much appreciate what the Committee has done. You have tackled very difficult issues and taken creative, thoughtful approaches. Many of the advances contained in your proposal will improve the lives of the chronically ill. We know that no plan is perfect, and that solutions will have to be tested and evaluated over time. We simply ask that you ensure that patients have what they need – no more and no less.

Thank you.

Jennifer C. Jaff

Monday, May 11, 2009

The Loss of All Losses

I turn over and look at the clock. 8:30 am on Saturday. Who's calling me now?

Hello, I say groggily.

Hi, Jennifer? This is John Doe's wife.

Why are you calling me at 8:30 on a Saturday morning? I ask gruffly.

I was calling to tell you that John committed suicide.

NO. Oh, god, oh, god, no. Oh my god.

I came across one of your letters to him and I wanted to tell you how much he appreciated everything you did for him.

But I did nothing. I lost his disability appeal. Maybe if I had done a better job. Maybe if I ....

No, Jennifer, you were wonderful. We know you did all you could and then some. I just wanted to thank you.

No, thank you for calling me and telling me. Oh, god. I'm so, so sorry. You have my deepest sympathies.

Thank you, Jennifer, for everything. Good-bye.

Take care.

Yes, I've lost patients before. You're bound to lose people if your business is illness. But this is so different.

I know what to say to myself. It wasn't my fault. I couldn't win his appeal -- he never went to the doctor, so there were no medical records, and he refused to let me get any psych records if they even existed -- a fact he never confirmed. I know I haven't spoken with him in close to a year. I know this wasn't my fault. Heck -- he was going to little league games with his son.

But truthfully, I didn't understand how he could be disabled and going to little league games. I confess -- even I doubted him. I did file four appeals, but I doubted him. How dare I judge another? Aren't I supposed to know better? Dammit, how could I have doubted him? How dare I make such a judgment?

And what if I had won that appeal? Can any of us say with certainty that it wouldn't have made a difference in his outlook?

Most of all, who's going to go to little league games with his son now?

I've thought about suicide and talked about it here. I always figured the people I would leave behind would be few, and would get over it. But I may have been wrong. It will be a long time before I forget about John Doe. Part of me wants to never do another disability appeal again. Part of me wants to blow up the insurance company (not really, of course -- maybe just send them a nasty letter so they know the consequences of their actions). And part of me is just numb.

How can it be? I didn't know. I didn't know at all.

I'm sorry I didn't know, John. I'm so so sorry. I had no idea that you were in such pain. I knew about your medical condition. I knew you didn't like to talk on the phone so it was almost all email. I knew you didn't go see the doctor often enough. I knew you went to little league games. But over all the times we worked together trying to make up for the lack of medical records, I never knew you were so sad and feeling so alone and hopeless. I never knew.

I'm so sorry. I hope now you can rest in peace, John. It will be a long time before I feel peaceful again. Jennifer

Wednesday, May 6, 2009


I had the week-end to end all week-ends, and then some.

I left Hartford at 6:30 am and flew to Chicago. I attended a conference of PSC Partners Seeking a Cure, a group dedicated to support and education about primary sclerosing cholangitis, a liver disease. I gave an overview of disabilities law to the whole group, and also had lunch with a bunch of families with kids with PSC, so I had a chance to listen and learn about what an inspiring, supportive group this is. I was thoroughly energized by them.

Which was good, because I needed energy!

At 4 pm, I sprinted to the airport and flew on to Seattle. I landed there at about 8:15 pm Pacific Time (already 11:15 pm according to my body), dropped my suitcase at the hotel, and went to a benefit concert Pearl Jam's Mike McCready played for CCFA Camp Oasis and Advocacy for Patients. Camp Oasis is for kids with IBD, so they can go to camp with other kids who "get it" rather than having to worry about how "healthy" kids would respond to their illness. In addition to the concert, Pearl Jam fan-based nonprofit Wishlist Foundation did a pre-show party and auction, as well as a raffle of some great swag, including a chance to play onstage with Mike -- someone's dream of a lifetime (go Jeremy!). And Mike's friend Chris Adams worked with everybody to make sure everything went well (love ya, Chris).

I arrived at the concert just after Mike's Hendrix cover band, Shadow '86, had started playing, and had my first chance to hear Mike sing -- something he's been working hard on for awhile -- and he was GREAT!!! I was so impressed. He ended with a Hendix-inspired Star Spangled Banner -- practice for when he plays it at the Mariner's game later this week!

The second band was Loaded, fronted by Guns 'n Roses Duff McKagan. They played an awesome set. I strongly recommend these guys if they come to your town.

Finally, Mike played a long, wonderful set with his old band, Flight to Mars. They were really great, and it was such a fun set. Jeremy, who had won the right to play onstage, did a great job, and there were some surprise back-up singers who lent good sound to Skynnard's Tuesday's Gone with the Wind. Very cool.

Then we cleared all our stuff out of there and Mike dropped me off at my hotel for the night. It was a 26 hour day, two plane flights, a speech, and a long rock concert, and I'm no spring chicken!

It was also really nice that friends from the IBD Quilt Project and Get Your Guts in Gear came to see me and hear the great music, as did our newest Advocacy for Patients board member, Kris McFalls, the patient advocate for IG Living Magazine. I was so happy to see everyone, even though the volume of the music made it pretty impossible to talk -- or, I should say, to hear!

Anyway, we all slept in on Sunday. I hooked up with Laura and Eric from Wishlist for more hugs before they left for the airport, and then I had an early dinner with Mike and family -- wonderfully kind and generous people.

Monday was spent traveling home -- all day! The woman on the plane next to me from Seattle to Chicago decided she needed a banana, and that turned my stomach. I will spare you the details. Suffice it to say that my esophagus is still burning from all the puking. But I made it home by 8:30 pm on Monday night, and then spent most of yesterday recovering, although somehow I got caught up on emails and phone messages. And today, I'm back to the grind, although another day in bed wouldn't be a bad thing, considering how I'm feeling.

If I'd thought about how hard this was going to be to pull off, I never would have gone. But once in awhile, even I have to act without thinking first, and this is a great example of why. I would have hated to miss this fun. It was truly wonderful, and I'm not sorry I went in the least bit.

Sometimes you just have to go for the WOW in life. And this week-end definitely was a WOW!!! Jennifer