Thursday, July 30, 2009

I'm Worried About Health Insurance Reform

I'm not worried very much about what the Congress is going to pass. Sure, I care whether it includes a public alternative as one option that people can choose instead of private, commercial insurance. And there will be a big difference if there are subsidies for people earning 300 percent of the federal poverty level (FPL) or 400 percent of FPL. But there appears to be consensus about several core items:

1. There will be insurance regulations that prevent insurers from excluding people with pre-existing conditions, and health status and even gender will not be the basis for calculating premiums.
2. There will be annual caps on out-of-pocket costs, such as co-pays and coinsurance.
3. Insurance regulations will ban lifetime maximums.
4. There will be some type of mandate -- individuals who aren't exempt will have to have insurance, and at least some employers who aren't exempt will have to provide coverage or pay a fee or fine. But there will be exemptions.
5. Insurance companies will not be allowed to drop someone simply because of their health issues.
6. Preventive care will be covered 100 percent, with no copays or coinsurance, including but not limited to routine mammograms and colonoscopies.
7. There will be some sort of marketplace where consumers can go -- probably on the internet -- to review the plans that are available to them and compare them and make informed decisions.

For most of us, if we just got that much, it would be a huge improvement over the status quo. So I'm not all that worried about what they're actually going to pass. It's going to be better than the horribly broken system we have today. Once the new law takes effect, I will never have to explain to another person with a chronic illness why there is no insurance for them, even if they can afford to pay.

But we all read in our morning papers today that a new poll shows Americans are apprehensive about health insurance reform -- and most of the reasons they are worried are just plain false.

THIS is what worries me about health insurance reform. Those who are against it are willing to lie about it, and people believe them.

There's the absurd notion that someone from the federal government is going to require everyone on Medicare to make end of life decisions. Now, having a living will is a smart thing, and everyone should have one, but I've read every page of every draft of health insurance reform legislation and I swear on a stack of Bibles that there's absolutely nothing in any of them that would lead to such an Orwellian result.

There's the idea that our taxes are going to increase. For most of us -- for those of us who earn less than $250,000 per year AT LEAST -- this is false. Right now, we are paying for people who don't have insurance and can't afford health care to be seen for free at emergency rooms and hospitals. Once people have insurance, we should be able to decrease the amounts that we are paying to hospitals for "uncompensated care" dramatically. This will result in a huge savings to the federal government.

And having a public option will not result in our taxes going up. It won't be free for people who can afford to pay. Indeed, the Commonwealth Fund has issued a report that says that we will save $200 billion over ten years with a public alternative.

So yes, there will be increased Medicaid costs as we cover people whose income is so low that they can't afford to pay an insurance premium, even with a subsidy. And there will be the costs of the subsidy itself. But these costs will be largely off-set by the savings that will accrue.

Then there's the claim that the federal government will force you to change doctors or change insurance. Poppycock! First of all, right now, if you have insurance, you are forced to choose doctors who are in your insurer's network or to pay a higher copay if you don't (if you have a plan that allows out-of-network coverage). Nothing will change. Second of all, right now, if you have insurance through an employer, the employer can change your insurance. Nothing will change.

There is NO plan on the table for government-run health care -- period. Did you get that? Although some of us are in favor of a single-payer system of government run health care such as exists in the United Kingdom, IT IS NOT EVEN ON THE TABLE. I don't know how many ways I can say this. I swear it's true.

The government isn't going to ration healthcare any more than insurance companies already do so by telling us what they will pay for and what they won't. The legislation may well contain an outline of the basic benefits that have to be provided by any insurance -- but many states already do that. And if there's a public option as an alternative to private, commercial insurance, that public option probably will make decisions about what they will and won't cover, just like private insurance, and just like Medicare.

And while we're on the topic of Medicare, no, this legislation is not going to cut your benefits. In fact, it's entirely likely that it will expand your prescription drug benefit, especially when you are in the "doughnut hole" coverage gap that already exists.

Yes, there are other cost-cutting proposals out there that might make a difference. The White House supports comparative effectiveness research, so scientists will decide whether a more expensive therapy really will result in a better health outcome. They also support an outside panel of doctors who will propose changes to Medicare that will take effect if Congress doesn't act. But if you think these things wouldn't be happening if we weren't looking at insurance reform, think again. The Medicare trust account will run out of money in our lifetimes if there aren't savings. So yes, there will be changes -- small changes that will affect small numbers of people with specific health care needs. And we won't like them all. But these changes are going to happen even if we don't make other reforms to the system. Indeed, if we don't make other reforms, a whole lot more is going to change.

It's simply no longer economically feasible for employers to pay premiums that double every four years or so, as ours have, and still give us salary increases and make investments in the future. We cannot sustain the cost of caring for the uninsured. And waste in Medicare -- such as inflated fees paid to private insurance companies that are called Medicare Advantage Plans -- has to end if Medicare is to continue to exist. As the President has said over and over again, the status quo simply is not an option.

So yes, I'm worried. I'm worried about what happens when all of these lies about the reforms that are proposed scare people to the point at which they become opposed to reform. I'm worried about how members of Congress will react if that happens. I'm worried that we will throw away the really important consensus that has been reached because people who oppose reform are fear-mongers. I'm worried that not enough people are speaking the truth, not enough people KNOW the truth, and I can't really suggest that you all read the thousands of pages of draft legislation.

So I guess I have to hope that you will consider the sources of the information you rely on -- and if you have a question, write me at Jennifer

Tuesday, July 28, 2009

Today in the Senate

Today, Chris Dodd used one of the stories from It's Too Hard To Be Sick In America, our book of stories of chronic illness, in talking about health care reform on the Floor of the United States Senate.

Don't you think you ought to read it now? It's free, after all. Jennifer

Lies About Reform

I'm offended and worried at the lies being told about the health care reform proposals being debated in Washington. I've read the bills. If you have individual insurance, you can keep what you have -- it will be grandfathered in. If you have group insurance, your employer gets to make the decision, just like they do now. Under the House and Senate HELP committee versions, employers have to provide health insurance. The Senate Finance committee gang of 6 (3 moderate Dems and 3 Republicans) are talking about eliminating the mandate but having employers pay the subsidy for any employees that end up without insurance. This is just plain dumb; employers will stop carrying insurance immediately, and they will only have to cover employees who qualify for subsidies. Everybody else will be on their own. Rather than protecting business, how about protecting the little guys?!

I read something this morning that said that you won't get to keep your doctors. Again, this is exactly the same as what we have now -- insurers have networks, and if you want to stay in network, you have to go to their doctors. No change at all.

Fortune/CNN says today that the government would control what your insurance covers. Um, excuse me, but most states already have laws that require that certain things be covered. Another red herring.

Fortune/CNN also says you would lose the ability to have a high deductible plan that covers less and costs less. This is true. In order to force insurers to cover people with pre-existing conditions, and to take away their freedom to charge sick people more, everybody has to have insurance, and young, healthy people can't have crappy coverage. It's all about pooling. We shift costs around so healthy people pay a little more so sick people have affordable insurance. Why is this good for healthy people? You're already paying the costs of the uninsured and underinsured in taxes. For example, hospitals get tons of federal money to pay for charity care for people who don't have insurance. So once everybody has insurance, we shouldn't need to pay hospitals for this. So pay it in the form of an insurance premium rather than as tax.

And when you're reading the negatives about health care reform, ask if there's an ulterior motive the writer may have to skew the story one way or another. I promise you -- if there were something bad for patients, I'd be screaming about it. But reform is what we need. Jennifer

Thursday, July 23, 2009

Choose Optimism

The fight for health care reform on the federal level is getting tough. The gloves are off. Republicans have talked about "breaking" President Obama, and "killing" reform. Democrats are split, with fiscally conservative Democrats working to scale back reform efforts, undermining efforts to get Bills out of the five Congressional committees with jurisdiction over the issue before the August recess. The timing is critical because, during the August recess, reform will lose momentum, and the monied interests -- insurance companies, pharmaceutical companies, employer groups -- will step up their practice of running attack ads, scaring the public, who will express their fears to members of Congress, who may start to feel that the public really doesn't want reform.

But the public really does want reform. And there is enough consensus on several important issues that it would be a shame to lose it. There seems to be agreement on elimination of pre-existing condition exclusions and limitations; elimination of lifetime caps; the need for some cap on out-of-pocket costs; the need for some subsidies for the middle-class and/or small business. If we got just this, it would be better than nothing -- but not good enough to cause us to celebrate.

The President's press conference last evening was not as effective as he needed it to be. He's a great speaker, but far more energizing when speaking to a crowd of regular folk than when talking to the press. The public -- not reporters -- need that "Yes We Can" kind of speech that reminds us why we felt so incredibly optimistic on January 20, 2009 as we watched President Obama take the oath of office.

And the truth is that we absolutely can. Plenty of other countries do it at an acceptable cost, providing good care. You hear horror stories about Canada and the UK, but not about France, Germany, the Netherlands. Since a lot of Americans want to keep their private health insurance, we can't enact a single payer plan here -- at least not now, not yet. So we won't have the most efficient government-run health care.

But instead, we ought to have at least a public option that keeps insurers from raising premiums without concern for competition or affordability. Yesterday, the Commonwealth Fund issued a report that found that a public option would save us $200 billion dollars over 10 years. DO NOT LET YOURSELF BE FOOLED -- a public option SAVES money by keeping private insurers at competitive rates, and by covering the uninsured for the least possible cost, reducing the amount of money the federal government ends up giving hospitals to cover the cost of emergency room (and other) care for the uninsured. The insurance industry is running ads trying to scare us about "government run" health care. That's NOT what we're talking about. All we're advocating is a CHOICE of a public plan that would compete with the private plans. How else do you think we are going to get the private insurers to reduce premiums so that insurance is affordable for all? Unless you can answer that question, you ought to favor a private option.

All of the hand-wringing about how we're going to pay for health care reform is a red herring. A public option SAVES money. Reducing payments to overpriced Medicare Advantage plans -- private insurers who run Medicare for more money than it costs the federal government to run the same program -- will SAVE money.

And yes, it's time to reign in some of our doctors. The last time I saw my gastroenterologist in New York, she spent $3600 of my and my insurance company's money on needless tests, repeating every blood test and stool culture I'd had done only 10 days earlier. One visit, $3600. That's outrageous. When she complained to me about her fear that health care reform would make things worse, I thought to myself that her perspective is colored by her apparent belief that unnecessary procedures are entirely justifiable!!! This waste has to stop, so to the extent that there may be mechanisms in place to stop this, that's a good thing.

That's not the same thing as allowing insurance companies to continue to deny coverage of anything they want to based on the assumption that roughly 94% of people will not appeal a coverage denial. There should be a presumption in favor of the treating physician, and insurance companies should have to pay a fee or tax for every insurance appeal they lose -- and patients should get a bonus for appeals they win. That provides a disincentive to insurers to deny coverage without really good reasons, and it also provides an incentive to patients to learn to prepare insurance appeals, which really isn't all that difficult. This is an important piece of the puzzle that should be included in reform, but it has not been discussed at all.

I probably could ruminate on this all day. There's so much to say, so much that can and should be done. But more than anything else, I'm just afraid that we will sit here and watch the opportunity slip through our fingers like sand.

And that's why it's SO important that you contact your members of Congress and tell them that you want reform and you want it now. To find your Senators, go here. To find your Representative, go here. Don't let yourself be spooked by television ads paid for by the health insurance industry. Stand up and demand health care reform now. If you don't make the effort, we can't win. It's a phone call. Do it now. Jennifer

Tuesday, July 21, 2009


A big shout out to the Universal Health Care Foundation of Connecticut.

Yesterday, the Connecticut General Assembly passed SustiNet, the Foundation's universal health care plan. This came after years of grueling, non-stop, intelligent campaigning in partnership with lots of Connecticut's health care nonprofits, business leaders, and policy makers.

Our book -- It's Too Hard to be Sick in America -- was funded largely by the Foundation, and in the introduction, we explained why we are so hot on SustiNet.

SustiNet contains what I think is the best model for chronic disease management that I have ever seen. First, patients are involved -- a radical concept if you compare SustiNet to any of the other plans out there, but a no-brainer if you think about the fact that patients have to manage their own care, at least in between doctor visits, so ignoring them is a recipe for failure. Second, SustiNet recognizes that, for the chronically ill, medical life doesn't end at the door to the medical office, but extends to work, school -- every aspect of our lives.

SustiNet provides that there will be a Board of Directors comprised of political appointees from various backgrounds, and committees on each piece of SustiNet, from primary and preventive care to electronic medical records to chronic disease management. I hope I will be allowed to serve on the committee that will outline the details of the chronic disease management plan.

These committees, plus three task forces, will work with the SustiNet Board to deliver to the legislature a detailed plan for implementation of SustiNet in January 2011. SustiNet will operate as a health plan beginning in July 2012 -- sooner than the federal plans currently being debated in Congress.

The Foundation has done its homework. It has worked with an economist from MIT and experts from all over the United States. It has done a lot of listening -- and it has done a whole lot of convincing. It has the support of much of the business community, plus the health care advocacy community and, most importantly, the public.

It is an exciting day for those of us who have been fighting this fight. Although we know our work just begins here, we have a plan, we have a time line, and we have the support of the General Assembly.

At one of the rallies at the Capitol, a bunch of us sang the following to the tune of We Shall Overcome!:

We shall all have health care.
We shall all have health care.
We shall all have health care now.
Oh deep in my heart
I do believe
We shall all have health care now.

And in July 2012, we shall, indeed. Jennifer

Wednesday, July 15, 2009

Fixing Health Care Requires Patients

If chronic illness accounts for 75 cents of every dollar spent on health care in the United States, then understanding chronic illness is essential to successful health care reform. Sadly, the politicians and pundits too often fail in this regard.

Many policymakers believe they understand what it’s like to interact with the health care system because they or a family member has had an unpleasant encounter with that system in its current incarnation. However, in most cases, these stories have recounted the experience of one illness that had a beginning and an end. Unfortunately, for the chronically ill, there is no end, and that salient fact makes a world of difference.

Living with chronic illness changes one’s perspective on health care reform. We who interact with the health care system on a daily basis know that health care reform cannot be built upon the existing system. Tweaks don’t curtail disasters. Failure to appreciate how the current system disserves the chronically ill leads policymakers to the mistaken belief that prevention – an aspirin a day, smoking cessation – and an increased number of primary care providers will help to curtail the costs of chronic illness.

In fact, those of us with chronic illnesses like mine – Crohn’s disease, and others in the autoimmune family, such as type 1 diabetes, multiple sclerosis, lupus, and rheumatoid arthritis – know that nothing could have prevented our illnesses, or at least nothing that modern science has discovered yet. And although it is the case that chronic illness would be better treated by enhanced care coordination, whether that coordination is accomplished by a primary care physician or the patient herself doesn’t much matter as long as everybody’s on the same page. Responsible, educated patients can manage their own illnesses to a large extent, with a little encouragement and support. Indeed, patients must manage their illness between doctor visits, so not investing in patient education and training not only fails to capitalize on the one free resource in the system – patients – but it also leaves patients without the tools they need to reach and maintain remission.

There are those who blatantly insult the chronically ill by suggesting that health care benefits should be taxed so that patients will think twice before asking for care. Anybody who thinks consumers don’t already think about cost doesn’t know anybody with a chronic illness. My medication copays and the cost of care that is not covered by my insurance are impossible to ignore.

Still others in Congress want a “Medicare for All” arrangement, although they fail to address the glaring gaps in Medicare, especially for the chronically ill. For example, Karen has multiple sclerosis and just went on Medicare. Her prescription drug copay is 25 percent of the cost of her drugs. That’s $600 for her primary multiple sclerosis medication alone. So now she is off her medicine and having seizures on a near-daily basis. A plan that expects patients to pay for 20 percent of every health care dollar we spend, and 25 percent of our prescription drug costs, will bankrupt the chronically ill.

We know that one of the primary challenges of health care reform is to rein in the costs of chronic illness. And we know that patients who don’t get the care they need cost more in the long run, as their illness spins out of control. It is, therefore, remarkable that the debate over health care reform has focused so minimally on what it’s like to live with chronic illness, and on the need to provide support to the chronically ill, enabling them to understand their disease better, to know which medications they take for which purposes – to manage their own care.

And yet, despite the cost of chronic illness, who in Washington is at the table negotiating health care reform who really understands what life is like for the chronically ill? Surely, the pharmaceutical companies who want to sell us a lot of drugs, the insurance companies who want to dump us, and health care providers who think we are a drain on their limited resources will not speak for us. And so it is the case that none of the proposals for health care reform incorporates any serious measures to educate and train patients to navigate the system on their own.

I have had a chronic disease for thirty-four years. I have never asked a doctor to write an insurance appeal for me, write a note to an employer, or help me negotiate reasonable accommodations. As a lawyer, I have basic advocacy skills that have allowed me to perform these functions myself. And through my work with other patients, I have become convinced that many of them can advocate for themselves when armed with a little information, perhaps a sample or model letter, and a little direction. Surely, arming patients with the tools they need to manage their own care makes sense from a cost standpoint. Not only are patients a free resource, but a patient who participates in her own care will be more compliant with doctor’s orders and, thus, will reach better health outcomes, thereby curtailing costs.

Whatever reform plan we end up with will become an intimate part of the daily life of the fully one-half of Americans who suffer from a chronic health problem. Reform will not work if chronically ill patients do not buy into it, and that means giving them a seat at the negotiating table now, while also incorporating their needs and abilities into any solution. The failure to do so may well doom any effort at health care reform.

I said my piece!

In today's San Diego Union-Tribune:

Sotomayor's health is not a barrier

Re: “. . . But her health should be considered” (Letters, July 12):

I am appalled at the letter you published written by a person claiming to be a doctor who thinks Judge Sotomayor is disqualified to serve on the Supreme Court due to her health. John Bridgeman states that a person with diabetes cannot be relied upon to engage in “calm judicial deliberation” because of the side-effects of her disease.

Most chronic illnesses, including type 1 diabetes, can be managed through diligent medical and lifestyle management. Sotomayor's doctor has found that she cares very well for her disease and, thus, she is perfectly qualified to serve on the Supreme Court. Bridgeman's opinion assumes just the sort of bias that we can count on Justice Sotomayor to protect against.

The chronically ill face this sort of discrimination every day. To see it coming from a doctor makes it more reprehensible. Perhaps Bridgeman is a veterinarian? If so, I would not want to take my cat to him.

JENNIFER C. JAFF, Executive Director, Advocacy for Patients with Chronic Illness Inc., Farmington, Conn.

Monday, July 13, 2009

Just so you know . . . . re: previous post

License Number: GFE6827
Public Record Actions: NONE AVAILABLE ON WEB SITE (To find out what information is and is not available on the Web site, please click here.)
Expiration Date:

Justice Sotomayor II

Unless you are living under a rock, you know that the hearing on Judge Sotomayor's nomination to the Supreme Court began today. One of you wonderful readers sent the following letter that was actually published in the San Diego paper this morning:

The conservative opposition has so far focused on her decision in the Ricci v. DeStefano reverse discrimination case. However, as a physician, I believe that Judge Sonia Sotomayor's health is the real reason why she may be unqualified to fill a lifetime appointment on the U.S. Supreme Court. She has been a 50-year type 1 diabetic. She has already survived her actuarially predicted life span. The general prognosis includes a much higher risk for heart attack, stroke, kidney failure and dementia. These and other tendencies challenge calm judicial deliberation by a healthy mind over a lifetime.

Examine the candidate's judicial philosophy. She may satisfactorily rebuff all challenges. Do not, however, overlook the implications of her diabetic history. It is not discriminatory to fully evaluate what a 50-year history of type 1 diabetes may mean to the judicial sanctum of the Supreme Court.



A doctor, no less.

Perhaps he's a veterinarian. Then again, I wouldn't take my cat to see him!!!

But truthfully, seriously, how many calls do I get every week from someone who got fired because they missed work? Too many. In many cases, it's legal -- if you aren't covered by the Family & Medical Leave Act, or if you use up the allotted 12 weeks of leave in a 12 month period, you can be fired for absenteeism if being present is an "essential function" of your job (i.e., if you can't do your job from home). But where it isn't, it's very easy to negotiate a severance agreement because employers would pay good money to rid themselves of a chronically ill employee.

Let's hope Justice Sotomayor -- who WILL be confirmed despite the idiocy of some of her detractors like the one above -- can help make sure this never happens to any of us ever again. Jennifer

Wednesday, July 8, 2009

New Doctors

I think I am going to change doctors. This is a huge decision. You spend years nurturing a relationship of trust and mutual respect, and walking away from it is a very hard decision. But when the trust is gone and your life is at stake, it's with reluctance that you make the hard choice to make a change.

I've changed doctors because I've moved to a different state, and that's somehow easier because there's no wrestling with the decision to change doctors. I've also changed doctors because of gross malpractice and horrendous treatment, and that's really easy. But changing doctors -- leaving someone you liked and respected, but who has violated your trust by failing you medically and simply not focusing on your medical needs is really hard.

Finding a new doctor is hard, too. You sort of want to interview them, but they don't think they have to "apply" for the job of being your doctor. But how do you know if you're going to be better off with the new one than you were with the old one? How do you make such a choice? Not only is it hard to decide to leave your old doctor, but it's really hard to choose a new one.

I started by looking in Connecticut. I've been traveling to New York for years, but if I'm going to change doctors, it sure would be great to have someone in-network, who doesn't cost me hundreds of dollars, and someone who's less than an hour away instead of 2 1/2 hours. So I got on the website of every hospital in Connecticut and looked at the gastroenterologists. I found several at Yale who specialize in inflammatory bowel disease, so I focused on them.

Then I asked the local Crohn's & Colitis Foundation for names. And I asked a doctor I have so much respect for in Boston if he knew anybody. They both came back with one name in common. I noted that he trained at University of Chicago, so I emailed a doctor I know there and asked about him. He said great things. So now I was on a roll.

But still, will he be willing to take on a patient who's pushy and determined to participate in her own care? And will he be willing to deal with how complicated my case is? How do I find this out from the start, so I don't waste my time? And how do I manage it without announcing to my old doctor that I'm switching when this new guy might be worse, but I won't know it for awhile?

And so I wrote a letter. I'm reprinting it all below because I think it's a useful sample for other patients. In it, I expressed my concern about whether he will want to take me on. I faxed it to his office this morning. By the end of the day, I had an appointment to see him. It's not for a month, but still, it's a start, and I'm optimistic.

So here's my letter. Obviously, it's very personal, but I don't pull punches here, so I figured I would give it to you in full, without editing, so you could get a sense of how you might approach a new doctor of your own. I hope it's helpful.

And I REALLY hope this guy turns out to be as good as they say he is.

Dear Dr. Ginsburg:

I am writing to introduce myself and see if you would be willing to take me on as a new patient. You were recommended by Dr. Bruce and the local CCFA chapter, and then I reached out to Dr. David in Chicago since you trained there, and he spoke highly of you, as well. So I feel comfortable that you can meet my medical needs; the remaining question is whether you want to take me on. I am a somewhat difficult patient in that (1) I believe that patients should participate in their own care management as an almost equal partner; and (2) my case is complex. Let me give you some background.

I am the founder and Executive Director of Advocacy for Patients with Chronic Illness. Essentially, we do free legal and insurance work for patients with chronic illnesses (yes, I am a lawyer). We have a contract with the CCFA pursuant to which we take on all referrals involving insurance and legal questions for them. I also serve on the public policy committee of the CCFA and the IBD Advocacy committee of NASPGHAN. I’m working on a very substantial project that involves the ImproveCareNow Collaborative (pediatric IBD doctors), founded by Dick Colletti (Vermont) and Peter Margolis (Cincinnati). I have co-authored an article and a book chapter with Dr. Athos Bousvaros (pediatric IBD in Boston). So although I work with patients with any chronic illness, I do more IBD-related legal and insurance work than any lawyer in the country. As a result, I have just enough information to make me dangerous!

My medical history is long and complicated. I am a single white female, and morbidly obese (I started a diet on Monday). In a nutshell, I was diagnosed in 1977 at age 20 after being sick and being sent to a psychiatrist for several years. At the time, I had what we thought was an ulcer along with Crohn’s colitis. (We now believe that what they thought was an ulcer was Crohn’s in my duodenum, which I’ve had since then). I was treated with Azulfadine and, ultimately, prednisone. I had several obstructions and a localized anal fistula all through law school, and I was very sick, and was hospitalized to be put on TPN during breaks from school.

I had my first resection (at the cecum) in 1985 at Dartmouth, which did not improve my symptoms at all. I remained on prednisone for a long time, but also started Imuran after that first surgery, when I consulted Dr. Daniel Present. It did not improve my symptoms, but I was then living in Miami, and I started swimming and losing weight, and ultimately, I was doing better and finally got off prednisone after 12 years. After several more obstructions, I had a second resection – at the terminal ileum this time – in 1994 at Hartford Hospital (Jeff Cohen). I did really well after that, and was on only 6-MP and Asacol for about 7 years.

In April 2001, I had another obstruction and another resection at the terminal ileum. After that, I had 11 months of severe, uncontrollable fecal incontinence, which rendered me homebound. That started about 3.5 years of acute illness. I was started on Remicade, but it did not work. Colonoscopy and upper endoscopy showed severe, active Crohn’s in the stomach, duodenum, small intestine, and colon. I was seeing Dr. Ted Loewenthal, and then Dr. Michelle Smedley, at Hartford Hospital. They didn’t have a clue what to do. Ultimately, my legs swelled to the point at which the skin was starting to split. I went to Dr. Mark Peppercorn for a consult, and then I finally got really scared and asked the then-head of the CCFA national for a referral, and he sent me to Dr. Ellen S. She saved my life. I had no Vit D and calcium, and hypoalbuminemia. I saw and endocrinologist and a nephrologist. Both of them, and Dr. S, told me that my kidneys were shutting down and I was dying as a result of severe malnutrition and malabsorption. They loaded me up on Vit D and I focused on getting protein in me, and I ended up losing 23 pounds of water weight in 2 days.

I still had a lot of pain and active Crohn’s. We did a second trial of Remicade. It did seem to help, but I had a very scary adverse reaction. My ANA titers spiked and I ended up with a liver biopsy that showed fatty liver, but nothing worse. At that time, Dr. S said I could never risk trying another biologic. Since that time, I have been on Colazal, Azasan, Colestid, and Xifaxan at varying dosages (I will list my current meds at the end of this).

In November 2003, I had a lysis of adhesions for very bad pain, along with a hysterectomy for uterine fibroids (and my mom died of ovarian cancer). In March 2005, I had a hernia repair. In January 2006, I had a second hernia repair. Last July 2008, I had a second lysis of adhesions. These four surgeries were done by the miraculous Dr. Jeffrey Milsom, who was able to peel adhesions away without cutting bowel at all.

Sadly, after last year’s lysis of adhesions, I still was having trouble keeping food down. To make a long story short, I had a gastric emptying study that showed zero emptying at 90 minutes. So we have treated with Reglan and Protonix for gastroparesis, which is the only combination we have found that prevents vomiting. And I no longer eat anything that has to be chewed. I’ve gained a lot of weight in the last year because I tend to eat too much sugar because there isn’t much left in my diet that helps my energy level.

On a lot of medications, I was having roughly 5 loose stools a day – not great, but good enough so I could leave the house and have a life.

That brings me to my current flare. Last February 2009, I had a root canal that abscessed. I had to take Clindamycin. I got very bad diarrhea. Although all stool tests came back negative, Dr. S, along with a local gastroenterologist Dr. Donna Cipolla, decided that it was a false negative for c-diff and treated me with a round of Vancomycin. When that didn’t help, they did another round of Vancomycin with a slow taper. When that didn’t work, and I started to have some serious pain, I had a CT scan. It showed a small hernia below the mesh from previous hernia repairs. The radiologist said so, Dr. Jeff Cohen (surgeon in Hartford) said so – but Dr. S said there was no hernia, and that she thought I had inflammation in the abdominal wall that “transmigrated” to the bowel, causing my diarrhea. I swear that’s what she said – I have her dictation in writing. She wanted me to see Dr. Milsom (surgeon in NY). I saw him on Monday, and he said I do (of course) have a hernia, but he also sees some thickening of the walls of the colon, including the transverse colon. He couldn’t get a good enough look at the small intestine to see if there was thickening there, too. I do not have inflammation of the abdominal wall. I have known Dr. Milsom to be very expert at reading CT scans. Last year, everybody thought my CT scan was normal, but Dr. Milsom saw that a loop of bowel was stuck to a piece of hernia mesh, which was causing severe pain. When he operated, he found several loops of bowel all stuck together. So I trust his read of the CT scan. Both Dr. Cohen and Dr. Milsom believe I should get the Crohn’s under control before I have surgery to repair the hernia, which Dr. Cohen will do in Hartford Hospital when the time is right.

For several reasons, including Dr. S’s very strange “transmigration” theory and the fact that care was delayed since February (and other reasons which you don’t need to be bothered with unless you want to know – I have no secrets), I decided to see what my options were in terms of switching gastroenterologists. Obviously, if I could find someone in Connecticut with the requisite expertise with whom I get along (meaning someone who appreciates a knowledgeable patient who participates in her own care management), not only would it be easier in terms of travel, but seeing an in-network physician would help financially, as well. So I put out feelers, and that’s how I got to you.

Currently, I am having 10+ very loose, floating stools every day. On June 5, 2009, my SED rate was 48 and my c-reactive protein was 1.37. On June 18, 2009, my SED rate was 18. We’re checking it again; I should have results today. I am on the following medications:

Azasan 150 mg/day; Colazal 750 mg 6 per day; Protonix 40 mg 2/day; Colestid 4 grams/day; Xifaxan 200 mg 6 per day; Regland 2 per day; elavil 100 mg at night; Klonopin 1 mg at night; B-12 shots monthly; citraciol .25 mcg/day; drisdol 50,000 IU per week; folic acid 1 mg/day; B-6 50 mg once a week; Align and Florastor probiotics; Allegra 60 mg/day; Atenolol 50 mg.

And that’s the story. I need to be very candid. I will only bother you when I am sick, but when I am sick, I will expect you to pay attention and help me figure out what to do. I hate being on so much medication, but I’ve tried cutting things down, and with few exceptions, I have not had any luck. I was on Pentasa for awhile, but got headaches if I took more than one per day. I tried Apriso about a month ago and it added nothing. Increasing the Colestid has done the most good, but it’s not good enough. I cannot eat or drink anything if I have to leave my house. I can’t live like that forever, especially since I do have to travel for work, which typically means I don’t eat for 2 days at a time. I need a doctor who is committed to helping me have a life.

If I were to stay with Dr. S, her next step would be to scope me. I am very difficult to scope due to adhesions and strictures, and Dr. S is very expert at it, and has gotten through the anastomosis at the terminal ileum. My last scopes were September 2008. They were normal except for some spasticity and two strictures in the proximal ileum which Dr. S dilated with a balloon, but Dr. S doesn’t take pictures or anything, so all I have is her dictation, and I’ve just told you what it says. I did not want her to scope me and then change doctors and be told I needed a second round of scopes because she didn’t write a good report or take pictures. But I will tell you up front that I am difficult to scope. The conscious sedation doesn’t work very well. The last scopes I had, I had 10 mg of Versed and 125 mg of Demerol and was wide awake. The good news is I can tolerate a lot of pain.

I would like to meet with you and see if we hit it off as well as I hope we will. I have lots of my medical records and will bring you what I have that’s of any use. But all of that depends on whether you’re willing to take me on. When I’m sick, like I am now, I will need your attention. However, when I’m back to baseline, I won’t bother you at all other than for prescription refills. I am an intensely compliant patient, but the care plan has to be one that I at least understand.

Part of my job is to encourage and teach patients to participate in their own care. My belief is that patients who participate in their own care are more compliant with doctor’s orders and, thus, have better health outcomes. I believe this to be true in my case. I would have died not once, but twice, had I not taken an active role. (The second near-death experience I had was at the hands of Michelle Smedley, but it’s not important for your purposes unless you want to know).

With all of that said, would you be willing to see me and consider taking me on? I am trying to be honest up front. At times like now, when I’m sick and unhappy, I will take some of your time and attention. I need a partner to navigate the tough spots. But I do my own insurance appeals, I will never ask you to write a letter for me – I will be very sensitive to your time constraints when my needs are not pressing.

What do you say?


Jennifer C. Jaff

Wednesday, July 1, 2009

What About US?

On Monday, White House Office of Health Reform Director Nancy-Ann DeParle held a webinar on health care reform, taking questions over Facebook messaging. I asked how health care reform will curtail the cost of chronic illness. If 75% of every health care dollar in the United States goes to paying the cost of chronic illness, then for health care reform to succeed, we need to rein in those costs. The Congressional proposals have focused on prevention, but for those of us with Crohn's disease, lupus, MS, type 1 diabetes, and so many other illnesses that are not preventable, there is not even the hint of an answer. Ms. DeParle's response was no better. She pointed to the funding for electronic medical records that was contained in the stimulus package. Yup, we're going to rein in the cost of chronic illness by making sure people take their medicine on time. That's really exactly what she said.

First, how will electronic medical records make sure people take their medicine on time?

Second, do they really think that people skip their meds out of negligence? Don't they understand that the people who skip meds do so because they can't afford their medication?

She could have said that the chronically ill will be helped greatly by having affordable health care, so people who need ongoing care get it and their illnesses don't get out of control, but she didn't. She could have said that the Congressional proposals -- at least the House and Senate HELP Committee versions -- adopt a medical home approach to chronic illness, with care coordinated by a primary care physician, but she didn't. Indeed, she seemed singularly unprepared for such a question even though chronic care management is widely believed to be necessary if we are to sustain the costs of health care in the United States.

And so it goes. On a conference call earlier this Spring, I asked representatives of Families USA and the American Cancer Society the same question. They said they were focusing on encouraging doctors to specialize in primary care. Another half-response, at best.

What bothers me most about all of this is that we patients are just ignored. HELLO! I can help manage my own care. Indeed, I have to manage my own care between doctor visits, so I'm in the picture, like it or not. And my services to myself are FREE. So if we simply educated, trained patients with chronic illness to manage their own care, we would immediately save money at absolutely NO COST WHATSOEVER.

I work with a lot of patients. Some of them really need help -- they need someone to step in and file an insurance appeal for them, or negotiate severance or reasonable accommodations in work or school. Sometimes, just the fact that I'm a lawyer makes a difference when I get involved. But to a very large extent, patients are perfectly adequate advocates. As times get tougher and an increasing number of people ask for my help, I have to teach at least some of them to do what needs to be done for themselves, with a little coaching from me. It works fine. Indeed, in one case recently, the patient did better than I ever thought she could. All I did was help focus her direction.

Our Know Your Rights handbook sells for $30. If printed in a large enough volume, we could bring that cost down tremendously. It covers how to get your own medical records, how to find health insurance if you have a pre-existing condition, how to handle disputes with health and disability insurers, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. I can imagine a publication like this, and workshops by trained trainers all over the country, teaching the chronically ill to advocate for themselves. The cost of this training would be minimal compared with the savings. If doctors no longer had to write insurance appeals, or battle for patients over employment and school issues, we would save the system a tremendous amount of money. More people would be insured, and insurance would cover medical necessities. People would stay employed longer, and in school. People with chronic illnesses would be vastly better off and the cost would be minimal.

And that's just my idea. I know there are others who believe in empowering patients by giving them the tools they need to succeed in managing their own illnesses.

We know that patients who participate in their own care are more compliant with doctor's orders and, thus, achieve better health outcomes, thereby reducing cost. So why is it that nobody's talking about training patients as a means towards reducing the cost of chronic illness? It sure seems like a no-brainer to me. Jennifer