Monday, June 29, 2009

Vacation Anyone?

I think I should take a vacation. And not to have surgery, which is my usual excuse. I went away for my 50th birthday and it was a disaster -- I got so sick I couldn't wait to get home. But I don't really have a home to myself any more, at least during the week. Celeste, my assistant, and her assistant (actually, her almost 6 month old daughter) Amieta, and my fabulous law student intern Dan work here full time. How can I take days off during the week and actually enjoy them with two other people working here, the phone ringing, and over 100 emails a day coming in?

Except for this week. I could have taken time off. I thought I would be having hernia surgery this week, but the surgeon in NY still hasn't read the CT scan, so the verdict is still out on that whole thing. And Celeste is out on vacation this week. And I talked Dan into taking the whole week for the law review write-on competition, which could have a big impact on his future. So there would be nobody here to cover for me.

I knew it would be a quiet week, but I didn't expect quite this much quiet. The phone's been still much of the day (I know, I'm jinxing myself). The mail was pretty thin. I'm waiting for medical records, but they haven't come in, so I can't work with them. So I have nothing pressing. Sure, there's always something to do, but nothing pressing.

I wish I were the kind of person who could just spontaneously take the day off when it's slow. Instead, I've worked pretty much all day. I've written a lot. I wrote July's newsletter, but you'll have to wait for that until next week, when at least some people will be back from vacation. Figured out some websites I've been meaning to take the time to figure out. Actually managed to post an announcement on Facebook -- a miracle since I find it so hard to navigate. I've been posting information about our chronic illness survey all over the internet. And the White House has a health reform briefing on the web at 5 pm, so I'll listen to that. It's good to have a catch-up day once in awhile.

But vacation. It eludes me. I don't want to go anywhere. I love my house, and then there's Emily, my feline buddy. I hate being gone from her. But it's a Catch-22 -- I can't take vacation when people are working here and it's busy because I couldn't possibly relax. And I can't take vacation when nobody's here because there would be nobody to cover for me. Haven't I just talked myself out of taking vacation EVER?

I say stupid things -- when the economy corrects, we'll move to real offices so I can have my house back. Or I'll just take a day and drive out to the part of Connecticut that I love the most, the hills of Litchfield County -- but we know I won't really do that.

So then the only time I can take vacation is when I have surgery?

Let's see -- do I have an appointment with my shrink this week? I need to make one. Jennifer

Tuesday, June 23, 2009

The Consequences of our Decisions

In today's New York Times, columnist David Brooks says health benefits should be taxed because otherwise, patients get a free ride and don't appreciate the "consequences of [our] decisions." This is so outrageous I could scream!

We have health insurance through a small plan that is appended to the state employee plan, an innovation designed by our wonderful state Comptroller, Nancy Wyman. It costs $996 per month. Yes, it has the lowest deductibles and copays that are offered. We choose that because higher deductibles and copays would actually cost more than the difference in the health insurance premium between our plan and the less generous option.

But don't think for a second that I don't appreciate the consequences. I can't hire another employee because I can't afford to offer them this expensive health insurance. When I go out of network, I pay a ridiculous amount out of pocket because my insurer thinks what's usual and customary is about half of what my doctor charges. Even my monthly drug copays and the cost of things that are not covered, like probiotics, remind me of the consequences of my decisions.

I choose to get the best health care I can find. That keeps me working and productive. Would David Brooks prefer it if I went on disability, lost my health insurance, spent my savings down in a couple of years, and then filed for bankruptcy when my bills mount up? Does he think that would be a better outcome? Jennifer

Monday, June 22, 2009

More on What's Wrong with the Healthcare System

I talk about my illness here because I think I'm a really good example of how even the most knowledgeable patients can be jerked around by the system. I know the gastroenterologist in New York has lost her mind. I know she definitely didn't need to repeat all the blood work and stool cultures that were just done on June 5. I didn't need a flexible sigmoidoscopy for $800 -- I've never had disease in the procto-sigmoid region. Why didn't I argue with her? Why did I let her waste my (and my insurance company's, to the extent they decide to cover any of it) money?

I was wrong, and it won't happen again. I am a smart patient. Yes, I feel desperate for some relief. I am going to the bathroom too often and I am in too much pain. My fatigue level is over the moon. So yes, I felt desperate, willing to let her do anything she wanted to do if it would make me feel better. Except I'm also smart enough to know that all that messing around will not make me feel better at all. If anything, now I'm just depressed and angry on top of feeling sick.

We don't fire our doctors often enough -- perhaps no more often than they "fire" us. But as I said yesterday, unless it turns out that this doctor is the sole genius who saw something on the CT scan that nobody else saw -- highly unlikely -- she's going to get fired, and I am going to find someone who recognizes my symptoms for what they are and actually treats them.

But even more -- way bigger than my individual circumstances -- is the fact that we are wasting money on health care. Two sets of labs in under 2 weeks is a complete waste. An $800 sigmoidoscopy is a waste. Spending over $2500 in one visit at least, by the time all the labs are paid for, is obscene. How can we have health care reform as long as we operate this way? We can't.

Health care reform is stalled because health care costs too much. The pharmaceutical companies made a concession over the week-end for those on Medicare Part D, but my friend Karen, whose 25% of her multiple sclerosis medicine costs about $600 per month, meaning she's going without medication even though she's on Medicare Part D -- what about her?

Health care reform is going to take reform on everyone's part. We patients will give something up -- what else is new? But everyone else, including doctors, are going to have to give something up, as well. No more business as usual. No more duplicating labs. No more unnecessary tests. No more should the best doctors be permitted to simply opt out of all insurance, including Medicare, so they can keep practicing as if cost is not a factor.

If we need to curb costs so that everyone can have health care, then we need to control both the consumer side of the equation and the provider side of the equation. I'm convinced that consumers don't ask for more than they need, but I take responsibility for allowing my doctor to abuse my pocketbook and my insurance company's, too. But my doctor has to take responsibility, as well. It made really good sense to do stool cultures with my symptoms. But it made no sense to do them twice.

I wish so much more than I can say that I did not have to interact with the health care system, cost so much money, and require so much care. I also wish my doctors would think before writing orders -- especially the fancy New York doctors who take no insurance no matter what. Controlling the consumer side of the equation is only part of the answer. Jennifer

Sunday, June 21, 2009

Update on Me

I really appreciate those of you who read my blog and then send messages of concern about my health. Thank you.

Since so many people get news of my health from my blog, I need to update you.

I saw the surgeon in Connecticut on Wednesday and was all ready to schedule hernia surgery. But then I saw the Crohn's expert in New York. As my primary care provider put it, she's either a genius or she's lost her mind.

She sees no hernia. (This from a doctor who one year ago told me she doesn't know how to read a CT scan). She thinks she sees inflammation in the abdominal wall that is "transmigrating" -- I swear, I couldn't make this up -- to the bowel, perhaps causing my diarrhea. So she says no surgery because it might just cause a proliferation of this infection. Instead, I'm on antibiotics yet again, until I see the New York surgeon on July 6, when he's back from vacation. And if I were to have surgery, she thinks the problem is so close to the surface and so close to the hernia mesh that's already there, so there is a huge risk of infection, which leads her to prefer that I have surgery near her.

And all that cost $1200, and that's before I get billed from the out-of-network labs and stool samples that were done on June 5, and that now are being re-done. All a really good example of the wastefulness in our current health care system. Here you have a doctor who takes no insurance at all, so she does whatever she wants, and I spend down my savings.

I'm not upset as much as I'm angry. My primary care physician said "transmigrating" definitely is not a medical term. And I know there was no reason to repeat blood and stool tests that were done 10 days earlier. And as best I can tell from researching the internet, there's no infection that inflames the abdominal wall other than peritonitis, and she definitely did not say that. Myositis -- the word she did use -- is marked by an ABSENCE of symptoms like diarrhea. So that's not what I have.

So yeah, I'm angry. I don't like spending my savings at the whim of a doctor who's making stuff up as she goes along. So unless the surgeon I see on July 6 tells me this doctor is brilliant and diagnosed something that nobody else on earth has ever documented, I'll be looking for a new Crohn's expert.

After all, if you have a patient with a 35 year history of Crohn's disease who has spiked a SED rate and c-reactive protein, diarrhea, joint pain, sweats and chills, fatigue, and abdominal pain, why are you looking so hard for anything BUT Crohn's disease?

Me? I'm mad as hell. And sick. And left without a treatment plan. For $1200. Yeah, I'm mad as hell. Jennifer

Wednesday, June 17, 2009

Fixing a Hole

All of us who care about health care have been thinking hard about how to control costs. Reform won't work unless we spend less money on health care. Medicare and Medicaid are bankrupting the country, and private health care costs are bankrupting families across America. There's talk about raising tax revenue to finance health care for the uninsured, and there's starting to be some talk about moving from fee-for-service to -- what? Managed care????? (The President's new word -- "bundling" -- doesn't make me feel warm and fuzzy, either.)

The President seems to feel a need to convince us that we will be able to hang onto the status quo if we're happy with our doctors and our insurance. Of course, he can't guarantee that insurers will continue to offer us our current plans -- but I digress.

The talk about cost control has focused a lot on patients -- getting them to be compliant with medication regimens, getting them to engage in prevention and healthy lifestyles. Indeed, last week, the Partnership to Fight Chronic Disease here in Connecticut asked its "members" to write letters to the editors about how important it is to make patients -- you know, those irresponsible patients who ignore their doctors simply because they're irresponsible and not because they're broke -- follow doctors' orders. (I suspect they have removed me from their email distribution list after I led a revolt!!!). And then there are people who think that patients overuse health care. Really, what patient wants more interaction with the health care system than he or she needs? Nobody I know. There's nothing fun about being a consumer of health care. I don't buy the claim that we can fix the system by controlling the consumption side of the equation.

But here's what I do think -- and what nobody will say out loud because it's not politically possible to do so. In order to control the cost of health care -- the black hole, as it were -- people in the health care industry have to earn less money. Period. Doctors, hospitals, labs, pharmaceutical companies, insurance companies -- with the exception of doctors who work at clinics for lousy money -- have to dial it back. Tighten those belts. Hold your conferences in Indianapolis rather than Hawaii. Give up the vacation home. Drive a car that costs less than the average annual income in the United States. Send your kids to public school. Deal with reality like the rest of us.

It's really very simple. The reason we spend more on health care in the United States is because the health care industry in the United States is very rich and very powerful. They easily can make the difference between a member of Congress getting elected or not. They killed health care reform under Clinton using scare tactics, and the American Medical Association and other industry insiders are enabling the Republicans to try to do the same now. And truly, if President Obama came out and said that the only way to fix health care is to pay doctors a reasonable salary, allow drug manufacturers a reasonable profit, and force hospitals and insurers to return to being non-profits, that would be the end of health care reform.

Still, someone has to say it because really, it's the only way this is going to work. The Congressional Budget Office (CBO) has come out with scary estimates of what the Obama plan will cost even before the Obama plan is on paper. $1.6 trillion or so. And it won't cover everybody. And that's before we factor in the cost of a public option (assuming we will have a public option, and assuming the public option costs money before it saves money down the road by fostering competition, which theoretically will drive insurance costs down). There seems to be the expectation that President Obama has to figure out where all that money is going to come from WITHOUT TOUCHING THE COST OF HEALTH CARE. That simply can't happen.

Atul Gawande's now-seminal New Yorker article laid it out very well. Where health care costs arethrough the roof, the one thing that drives those costs is over-use of medical care. Doctors ordering more tests than are necessary, more medication, more doctor visits, more, more, more. Not because patients want it. Trust me -- if I could get through a year without seeing a doctor or taking medication, I would be overjoyed. It's not patients driving this; it's the medical establishment -- doctors, hospitals, labs, radiology factories, pharmaceutical and device manufacturers, and insurance companies. Even during a serious recession, have you heard about hospitals going out of business? Or health insurers? I wonder what the rate of foreclosures is among doctors and health care executives.

You can't control cost without controlling cost. DUH. If you told me to control the costs of my food consumption, I'd spend less money at the grocery store by buying what's on sale. If you told me to control the costs of travel, I'd compare prices at gas stations and go to the least expensive one since the gas I get is the same no matter where I buy it. So if you want me to control the costs of health care, I need to spend less money on health care. That means I only get the care I need -- in my case, I'm quite certain that's already the case -- and the care I need has to be purchased at a reasonable price.

It's time for the health care establishment to get with the program. They can't keep getting rich at the expense of the entire United States. Either they get with the program and find a way to live on $200,000 per year rather than $1 million (with bonuses, of course), or we can't fix this -- period. Too much money is being taken out of the system, and that money goes to salaries and bonuses. It has to stop. Now.

The black hole of medicine.

A doctor goes to work for a pharmaceutical company and part of his deal is stock options. He works for 10 years and retires at age 45 with $15 million.

A hospital collects funds from the federal government to cover the cost of charity care, but instead of using that money to finance charity care, the hospital chases its poor patients through collection lawyers (who get a percentage of what they collect), which drives the family to bankruptcy -- all while the hospital is sitting on the millions it got from the government.

How much is the insurance industry, the AMA, the American Hospital Association -- the health care establishment -- spending on opposing universal health care? TV commercials, lobbyists -- what do you suppose that costs?

You and I are paying for this, folks. And it's not going to change until costs are cut. If you focus your cost cutting on what patients can do without, you will have patients who are under-treated and who get sicker as a result. Without treatment, chronic illness spins out of control and it costs much more to treat at that point. We know this. We can't control the cost of health care on the consumer end of things. That's not where the waste is. No consumer decides how much health care he or she needs. Doctors decide that. And doctors need to be re-trained to think differently. The "system" needs reform. The practice of medicine needs reform.

Let's pay everybody in the system a very nice, reasonable wage -- $150,000-$200,000 per year for doctors, maybe a little more for executives (maybe). But let's stop the multi-million dollar bonuses, the fancy cars, vacation homes, private schools -- it's obscene to allow that on the backs of patients who are in bankruptcy. If we're going to stop the costs of providing health care from spiraling even further out of control, we need to stop spending so much on health care. If you're like me, and you know that the problem isn't that patients demand more care than they need -- again, they can't get what they "demand" without a doctor facilitating it -- then the only other place to go is to control price. And the only way to lower the price of health care is to pay those who work in health care less.

Somebody more important than I had better start saying this or reform will not really mean change. It will fail, as it is failing in Massachusetts. You can't just insure everyone and make no other changes and call it reform. It won't work.

It really comes down to this. The places that Atul Gawande and others tout as examples of cost control are places like Geisinger and Mayo and Kaiser -- places where doctors are paid a salary, and gain nothing from ordering more tests or providing more care. Use in-house labs, in-house radiology, in-house pharmacies, so none of it is about earning as much money as possible. Maybe this is what President Obama has in mind when he talks about moving away from fee-for-service to "bundling." Pay doctors a salary that has no relation to volume. Pay other health care providers -- labs, radiology facilities, home health agencies -- cost plus 25% (or whatever percentage is right after careful analysis). Same with pharmaceuticals -- pay cost plus a flat percentage mark-up, and make it easier to develop and market generics.

The current system is fraught with inflated prices that go to paying big bonuses for care people didn't need in the first place, while others can't get care because they can't pay.

I'm not saying that there aren't other problems. I see insurance companies denying coverage for a surgery despite the fact that the surgery would cost less than the alternatives. So there's also a degree of irrationality in the system that has to go.

But I know that, if the health care establishment were focused on providing care rather than making many millions of dollars every year, THAT would be real reform, and THAT would shrink health care costs dramatically.

Sadly, through expensive advertising and lobbyists, the health care establishment can stop that from happening. Indeed, they already are doing so. Jennifer

Thursday, June 11, 2009

More on What's Wrong with the System

Well, the doctor who ordered the CT scan and told her nurse to tell me I have a hernia finally called to tell me that I should have surgery as quickly as possible. This was after I told my primary care physician that I hadn't heard from her, and also after I faxed her a letter with a status report on my discussions with my IBD expert in New York. And after her nurse said she would call me -- four days ago.

She complained because the gastroenterologist in New York isn't returning her calls. I explained (again) that I've been in touch with the New York doctor, and that she's started me on a new medication. I think she was annoyed that the New York doctor responded to me rather than to her, and that I seemed to have better information than she does. So I said "I do my own care coordination." She said "quite effectively, too!"

Why is this annoying to a doctor? Shouldn't she be glad that I take the load off of her shoulders and make sure all of my doctors are on the same page? She complains that the doctor in New York doesn't get back to her, but also complains that I've gotten through to the doctor myself? What would be the right thing for me to do? I guess just sit patiently and wait and do as I'm told when I'm told?

I really don't understand this approach to practicing medicine, an approach that involves a passive patient who does what she is told and nothing more. When was this doctor planning to tell me that, in her opinion, I need to have the hernia repair done quickly? If she's all that worried that bowel will get stuck in the hernia (which is really a hole in the abdominal wall) and I will need emergency surgery, why didn't she or her nurse tell me that on Monday?

Well, I'm not ever going to be the passive patient she wants me to be. I don't do passive. It's my body, my problem, my pain, my hernia.

Anyway, now I have an appointment to see the surgeon on July 6. I have to go to Nashville on August 8, so I can't have surgery before that, but I suspect it will get scheduled shortly after that.

And for those of you who were with me for my last surgery, I will blog it all again -- every detail -- so you can see how many times the system messes up, whether it be my insurance or an infection or anything else that can go wrong.

I think perhaps my annoyance is a way for me to deal with the sadness. I don't want to have surgery again. It's barely been a year since the last one. The whole thing stinks.

I think I'll go have a good cry. Jennifer

Wednesday, June 10, 2009

Senate Health Education Labor and Pension Committee Proposal

Yesterday, Senators Kennedy and Dodd released a remarkable health care reform proposal that would end pre-existing condition exclusions, eliminate lifetime maximums, and require everyone to have insurance. Of course, we focused our review on those provisions that will impact chronic illness, and sent the following comments:

Senator Edward M. Kennedy
317 Russell Senate Building
Washington D.C. 20510
(202) 224-2417

Senator Christopher J. Dodd
448 Russell Building
Washington D.C., 20510
(202) 224-1083

Dear Senators Kennedy and Dodd:

Thank you for your truly impressive work drafting the HELP Committee’s health reform proposal and the Section by Section Narrative with Options. I am writing to provide you with some feedback from our unique perspective.

Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide, in areas including health and disability insurance, Social Security disability, employment and school-based accommodations, family and medical leave, and resource location. As such, we have had the opportunity to develop a well informed understanding of what it is like to live with chronic illness. We write to you today using our considerable experience with chronic illness to inform our viewpoint.

First, we applaud you for undertaking a daunting role with optimism and compassion. The thought that we might soon live in a country in which we no longer are barred from purchasing insurance because of a pre-existing condition, in which there are no lifetime or annual limits, in which we can afford good coverage, and in which everybody shares the cost of chronic illness by mandating that everyone be insured, is nothing short of thrilling.

However, because we are so intimately involved with the chronically ill, we see potential pitfalls and missed opportunities where others without our experience may not. We will comment on two areas: chronic disease management and Medicare for all as a public option.

I. Involving Patients In Managing Their Own Care

We fully support the creation of medical homes, and the involvement of interdisciplinary “health teams” that will provide and coordinate care for the chronically ill. However, there are two aspects in which we would expand the chronic care management model in ways that would be cost-saving.

First, the least expensive, most often squandered resource in our health care system is the patient herself. We know that patients who participate in their own care will be more compliant with doctor’s orders and, thus, achieve better health outcomes, thereby saving money. So our first suggestion is that you make the patient a member of the care management “team.” This would go beyond the patient decision aids discussed in section 217. The patient should be present for discussions among medical professionals about her care and care management and have a meaningful role in managing her care, as, of course, is necessary at least in between visits with medical providers. The patient should help weigh options and make decisions as a full partner, as suggested in section 217 and beyond. The patient also should be taught to be responsible for navigating the system by ensuring that prescription refills are obtained in a timely manner and that annual screenings be performed on time, and by providing reminders to the “team” when conferences are required.

By including the patient as a member of the treatment “team,” the patient will gain respect from medical professionals, who will begin to see patients as partners rather than subjects. By insuring that the patient participates in treatment decisions, the patient will understand her treatment plan and will be more likely to comply with it. And with the patient performing some of the non-medical aspects of care management without it costing the system a dime, we will save money. Failing to employ patients as a resource is a missed opportunity, at best.

Second – although not entirely separately – chronic illness extends beyond the limits of the medical office to school, work, and home. Patients will need assistance not only in learning to manage their own care, but also to learn to navigate all aspects of the system that affects their health care. They need to know what the Family & Medical Leave Act provides, what the Americans with Disabilities Act does for them, what schools are required to provide to children with chronic illnesses and other health problems, and they need to learn how to communicate with employers, schools, and others about these issues.

For example, Sarah has Celiac’s disease, which means she must avoid anything with gluten in it. Her mother had to rely on her doctor to advocate for her needs – until she found Advocacy for Patients, and we now have taught Sarah’s mother how to advocate for Sarah on her own. Last week, the school produced a draft plan of accommodation for the next school year that was insufficient in the most important respect, i.e., ensuring that all desks and hands are washed after eating or working with clay or other material that contains gluten in order to avoid cross-contamination. Sarah’s mom sent me a copy of the plan, and I instinctively drafted a response for the mother to send to the school. By the time she got my draft, she already had spoken to the school and obtained the necessary concession. In a half-dozen telephone conferences over the course of a year or so, we have taught Sarah’s mother to be Sarah’s advocate – and we have done this at a very minimal cost.

If we are to be serious about controlling chronic illness and its costs, workplace and school issues have to be part of our focus. In Sarah’s case, for example, if the school lunch were not gluten-free, or if she were cross-contaminated by another child, Sarah’s illness could spiral out of control, costing the health care system in the process. Ignoring these issues would be a mistake.

Similarly, failing to provide for navigators who can train patients to become “team” members and advocates will lead to adverse outcomes. In the current system, doctors are forced to spend valuable time advocating – something they are neither paid nor trained to do. Surely, it costs less to give a group of patients training in the Americans with Disabilities Act, or to provide a copy of our Know Your Rights Handbook (or something like it) that costs less than $10 to print, than it does to pay for care that is out of control because these issues were ignored.

In sum, we must manage chronic illness in all its manifestations, and to do so, we need not only navigators to assist patients to navigate the Gateways, but also navigators to help patients navigate the system as a whole.

II. Medicare For All Disproportionately Burdens the Chronically Ill

We understand that the Committee still is considering various public options. Option A, according to the Section by Section Narrative, is Medicare for all. We ask that you consider the consequences of such an option for the chronically ill.

We recently worked with a patient named Karen who is on Social Security disability and just became eligible for Medicare. Karen has Crohn’s disease, gastroparesis, and very aggressive multiple sclerosis. She cannot afford to pay twenty percent co-insurance every time she is hospitalized; if she had to do so, she would be bankrupt within a year. Karen lives in Indiana. Because she does see non-participating providers because of the complexity of her condition, she had to find a Medigap Plan F or J. There was no Plan J available, though, to a recipient under age 55 (at which point there are AARP plans only), and only one Plan F, in which Karen enrolled.

When it came to choosing a Part D drug plan, I input all of Karen’s medications into the Plan finder on the Medicare website, and came up with a plan that will cover 84 percent of her medications – the best we could do. But because of the Part D co-insurance, even before she reaches the doughnut hole, her monthly prescription for Rebif, which she takes for her multiple sclerosis, will cost her $600 every month. And that is only one of her fourteen prescription drugs. With the doughnut hole, Karen’s prescription drugs will cost her well over $10,000 per year. But she lives on disability and cannot afford this, although her disability income and her husband’s salary together put her over income for low-income assistance. Even with a Medigap plan, Karen may well go bankrupt due to Medicare Part D’s cost sharing.

Karen’s circumstance illustrates the problem with a public option modeled on Medicare. Co-insurance rather than co-pays can bankrupt the chronically ill, and the Medicare drug plan - which is far less generous than the prescription drug plan that applies to federal employees and members of Congress – is an impossibility for us. Indeed, under a Medicare for all approach, I, myself, would deplete my retirement savings long before I reach retirement age due to Parts B and D co-insurance.

If Medicare for all is to serve as the public option, there must be two adjuncts.

First, there must be guaranteed issue, affordable Medigap-type supplemental insurance for the chronically ill of any age, regardless of pre-existing conditions, and regardless of whether they are on Social Security disability, available in every State. This would ensure that the chronically ill would have a way to insulate themselves from crippling co-insurance.

Second, the public option prescription drug coverage must not be modeled on Medicare Part D, which has proven to be disastrous for people with high medication expenses. Although one option would be to expand the low-income assistance provided to Medicare recipients now, in our view, to serve the Committee’s stated goals of (1) ensuring that all Americans have insurance that is like that afforded to federal employees, and (2) ensuring that care is affordable, a co-pay for prescription drugs rather than co-insurance, and the elimination of a doughnut hole, are critical elements of a public option.

The Committee clearly recognizes that patient access to care and compliance with medication regimens are critical to controlling chronic illnesses. This is evident in section 213, on medication therapy management for chronic illness. Ensuring affordable access medical care in general, and prescription drugs specifically, is essential to achieving these goals.

III. Conclusion

We fully recognize the complexity of the task before you. The foregoing comments are intended to assist you to achieve the crucial goal of ensuring that every American – including the chronically ill – have affordable, accessible, portable, and universal health care. Of course, if we can be of further assistance, please do not hesitate to contact me.

Thank you.


Jennifer C. Jaff

Tuesday, June 9, 2009

You Want to Know What's Wrong with the System?

Well, the verdict is in. My wonderful primary care provider was working on Sunday and saw the fax from radiology -- I have a hernia with a "knuckle" of bowel poking through. It's not yet stuck there, but since this is my third hernia, I know that everybody who's rational will tell me that I shouldn't wait until the bowel is "incarcerated" (the radiologist's word) to have it repaired. Surgery number 9.

But then it got worse. I had swollen glands yesterday morning -- not normal for me at all. So I went to the primary care provider's office. My wonderful doctor was off, but I told the doctor who was filling in for him that I'd had blood drawn and stool samples taken last Thursday, and perhaps that would be useful for him in deciding whether or not I have an infection. So he got the test results. It's not c-difficile. My SED rate and c-reactive protein -- markers of inflammation -- have spiked. That means this is an "inflammatory event" (doctor's phrase) -- in other words, it means my Crohn's disease is active. Who even cares about swollen glands?

I came home, scanned in all the test results, and emailed my surgeon and my expert Crohn's doctor in New York. How quickly do I need surgery? What are we going to do about the Crohn's considering the fact that I'm already on every medication known to humankind?

And then I waited. I kept myself busy. I got my birthday gift to myself, a GPS navigation system for my car for the ride this week-end to the closing ceremonies of the Get Your Guts in Gear New York ride in Saratoga Springs, so I figured out how that works. And then I was on the radio -- the wonderful and, in Connecticut, very popular Faith Middleton show -- so that was exciting to hear, and it was followed by several phone calls and emails from people -- my Dad, my aunt, and some patients needing help. So I was pretty tied up until about 7:15 pm.

Before that, I got a call from the local (Connecticut) gastroenterologist's nurse telling me I have a hernia. I responded, "But there's a knuckle of bowel stuck through the hernia. Do I need surgery? What about the blood and stool test results?" "Oh," said she, "did we order those?" Uh, yeah. "I'll have the doctor call you." Great. We expect patients with chronic illnesses to help manage their own care, but you don't anticipate that a patient will ask how this newly discovered hernia would be treated? Come on, now.

So by the time I finished working after 7 pm last night and hadn't heard from any doctors -- the surgeon's office had told me that yesterday was his last day before vacation, so I'll give him a pass, but neither the Connecticut GI doctor or the New York really expensive hot shot GI doctor had been in touch at all -- so I called the doctor in New York on her cell phone.

"Jennifer, what can I do for you?"
"I have a hernia."
"Yes, I know that."
"Have you seen the blood test results yet?"
"No. What do they say?"
" My SED rate went from 17 in April to 48 now. My c-reactive protein went from 0.9 in April to 1.37 now."
A moment of silence.
"Those are higher than we would like."
"Yes, and the c-diff and other stool samples are negative."
"So it sounds like we have an inflammatory event."
"Yes, I know."
"What do you want to do?" That was the doctor asking me.
"Well, for starters, I made an appointment to come see you next Thursday."
"Was that because of my schedule or yours?"
"Some of each," I said. "I didn't want to come see you on my birthday and that was the only other choice."
"I don't want you to wait that long," she said. I thought I was gonna cry tears of relief -- I finally got someone's attention. Someone who knows that my SED rate never goes much higher than this. Someone who knows I'm already on every medication. Someone who is taking this seriously.
"How much Colazal and Pentasa are you taking?"
"One Pentasa because I get headaches from it, and four Colazal because we cut it back."
"Okay, let's increase the Colazal to six, stop the Pentasa, and I'm going to start you on a new 5-ASA called Apriso."
Since there are no Crohn's drugs I don't know about, I know that this is a new longer-acting, time-released version of mesalamine -- the same drug as in Pentasa, Colazal, Asacol, etc. Some doctors say Colazal is released in the colon and Pentasa -- and apparently Apriso -- is released in the small intestine, so that's why you'd take two. Other doctors say this is bunk and has been disproven. But I'm going with the woman who saved my life.
"Email me the pharmacy phone number and I will call it in," she promised.
Frankly, I'm afraid to call the pharmacy. I don't want to hear that she didn't follow through.

Had I not had swollen glands yesterday, and had my PCP not called me on Sunday, I would know only one thing: I have a hernia. I wouldn't know there was bowel poking through. I wouldn't know whether anybody thinks I should have surgery (this, I still don't know). I wouldn't have the blood and stool test results. I wouldn't have made an appointment to see the doctor in New York. I wouldn't have gotten my doctor on her cell phone last night. I wouldn't have gotten new medication instructions. I'd just be sitting here waiting, not knowing what's wrong and what to do.

WHAT'S WRONG WITH THIS PICTURE????????????????????????

A doctor has a nurse call to say "you have a hernia," without anticipating that the patient -- especially this patient -- will ask if it requires surgery? And the doctor who ordered the blood and stool tests doesn't look to see if the results are in before she has the nurse call with the radiology results? And the doctors in New York apparently don't check their email?

If there is ANY patient reading this who would not have asked what it means to have a hernia, please hear me -- clearly, it's up to us to ask. Otherwise, you wait until you have an obstruction one day and need emergency surgery.

If there is ANY patient reading this who would not have asked about labs when the nurse called to report the discovery of the hernia, please hear me -- if you don't ask, they don't look, and you stay sick a few days longer.

If there is ANY patient reading this who would send an email to a doctor and just wait, without following up by phone, please hear me -- you try EVERY avenue to get their attention.

But most of all, if there is anybody reading this who wants to know what's wrong with our health care system today, please hear me -- this is what's wrong. Doctors are overwhelmed. Due to negotiated prices and reduced rates, doctors are seeing too many patients. They don't focus on you, even when you're really sick, until you're so sick that they don't have a choice but to deal with you. And by then, you've paid a horrible price.

Patients MUST -- MUST -- help manage their own care. We have only one patient to keep track of, while they have thousands. But in order to manage our own care, we have to be aggressive, pushy -- and really well educated. Would you have known what it meant when the doctor said the bowel could become incarcerated? Would you have known what it means when the doctor said Apriso was a different delivery system of the mesalamine that's in these other drugs? Indeed, would you have known how to spell Apriso?

The doctor in Connecticut who still hasn't called me? Well, she's why I have an expert in New York. I cannot tolerate a doctor who would have a nurse call and tell me I have a hernia. You patients, you don't have to accept this. You doctors -- you should be ashamed. I don't care what pressures are on you -- you don't leave patients undiagnosed and untreated. And if you give a patient your email address, your patient is going to assume you actually read your email. If you don't want that expectation, then don't give out your email address -- very simple.

But mostly, I want the politicians to know this. This is what it's like to be a patient. I just got several really important pieces of information that thank goodness I can interpret on my own, but most patients can't. Do you know what an elevated SED rate and c-reactive protein mean? Do you know why you'd take Colazal and Apriso even though they're both mesalamine? Would you know to ask how long you can wait before having a hernia repair? And most of all, would you know how long to wait for your doctor to return your call or email before you try another approach? I had to navigate that whole scenario myself. If I had done nothing, who knows how long it would be until I got my copy of the blood test results in the mail? By then, I'd be sick for another week, another week untreated, another chance for this frigging disease to spiral out of control and make me sicker, make it harder to get it back under control, and ultimately cost the health care system way more money.

And that's really my point here. If we want to control the cost of chronic illnesses, we must use the one free, capable resource that is currently under-utilized -- PATIENTS. Patients should read everything about their disease. They should know about new meds. They should know what having a hernia means. They should know about SED rates and c-reactive protein. But they don't just learn all that by osmosis -- they need to be taught. It's different for me -- this is my business. I know the new meds because somebody's insurance company wouldn't pay for them. For the average patient, doctors are going to have to do a little educating.

Oh -- and I just called my pharmacy. Nothing was called in for me last night. I guess I'll send another email, wait a few hours, and then call the office and see if someone else will call it in. Thank goodness at least I know what it's supposed to be.

Because if I don't, who will?

And THAT is not the way things should be AT ALL. Jennifer

Thursday, June 4, 2009

Why Chronic Illness Sucks

Okay, well, all illness sucks, so we can just get that out of the way. But chronic illness sucks in its own way.

I've been feeling crappy for months. It was a bacterial infection, c-difficile. It was antibiotics making me nauseated and even more tired. The pain was scar tissue. I just tough it out.

I went to the doctor this morning because, although I thought the c-diff was gone, I've never quite gotten back to my pre-c-diff condition. While I was there, I told her about the pain. And she poked and prodded until she found a MUCH worse pain that isn't there unless you poke, but boy oh boy, does it ever hurt. She thinks I may still have c-diff. Or fat in my stool. Or something else. And maybe I have a hernia or some adhesions (scar tissue) or even a partial blockage. And that new pain -- it's right-sided pain, classic Crohn's disease.

So if I didn't already feel like crap, now I've been poked and prodded, had blood drawn after several tries at finding a vein, given stool samples, and been scheduled for a CT scan tomorrow. Of course, nobody has told me how I'm supposed to get and keep down the CT scan contrast despite pretty remarkable nausea, or whether I should drink it earlier because my stomach doesn't empty on a normal time frame.

And here I am again, in the grips of the medical vortex that will wear me out and wear me down before allowing me to continue on my way, feeling crappy and in pain because, as generally is the case, there's just not a whole lot anybody can do. Indeed, every time I push my doctors to figure out why I feel like crap, I end up feeling worse, not better. And exhaustion doesn't begin to describe how I feel.

I have done this dance with the medical profession for over thirty years. It's always the same. I live with my symptoms for as long as I can. Then I go to a doctor and it starts. Tests. Medicine. Surgery. More tests. More medicine. Until I give up for awhile and just hide from my doctors until I can't stand it any more, and then it starts all over again.

That is chronic illness. It never ends, and always starts all over again. And it sucks.

Is it my fault for wanting to feel better? I mean, if I'm going to the bathroom 10 times a day, shouldn't I tell some doctor? And if I'm in pain, should I just ignore it? What if it's something important -- g-d forbid a tumor or something that could be treated if caught early?

Still, it seems like, if I never went to the doctor, I might be better off. Because I really don't want to do this dance any more.

I thought about walking out of the doctor's office this morning when she was late and I was afraid of what was going to happen. I've thought about cancelling the CT scan several times today -- after all, I do pretty well know that they're going to see nothing, which means the pain is from scar tissue, which can only be remedied with surgery. I'm sort of surprised and a little concerned about the pain on the right that I didn't know I had until the doctor prodded, but I'm already on every single medication there is for Crohn's disease that I can take safely, so what would we do anyway? In the end, don't I end up having to suck it up?

I honestly don't know. I know I'm the one who's supposed to know -- after all, I talk to patients all day every day and try to help them participate in their own care management. If I talked to a patient who described my symptoms, I'd tell her to go to the doctor and push for answers. But then again, if I talked to a really experienced patient who said she's felt all this before, I'd probably recognize that her experience may be more valid than anything any doctor has to say.

Meanwhile, I'm in the clutches of the medical establishment once again. I will extricate myself as quickly as possible, but with the knowledge that this will not be the last time I do this dance. There will never be a last time until the last dance, and I'm not there yet.

I guess that's good.

But boy oh boy, does chronic illness suck or what? Jennifer