Friday Tired

Friday Tired is the name of my first book. It describes how I was feeling at that time all the time -- like every day was Friday, exhausted.

However, when I wrote that, as horribly sick as I was at that time, I don't think I really knew how tired I could be and still be alive.

I am shaking like a leaf. I can barely see my computer screen. I can't sit up without propping up my head on my hand. The thoughts in my head aren't coming out of my mouth the way I mean them to. Is this making any sense?

We've been conducting a survey with the University of Michigan Center for Managing Chronic disease on the obstacles facing the chronically ill and the strategies they find to surmount them. Over and over, the respondents talk about fatigue as their greatest challenge. And they don't have great solutions for the problem, either.

Since it's Friday, I'm going to give myself a pass on trying to figure out a solution, for myself or for all people with chronic illnesses. I'll be satisfied with just getting through the day. But it's something to think about. There has to be a way to live with chronic illness that doesn't feel so damned difficult. Jennifer

The Crisis in Primary Care

Excellent article on the crisis in primary care -- here's a link. Jennifer

NY Times Answers Questions on the CLASS Act

The NY Times article can be found here. Jennifer

Me Today

I haven't posted much lately -- oh, sure, I've tried to keep you up to date on health reform issues and all that. But I haven't talked about me too much because i haven't wanted to say out loud what is in my mind: I can't do this any more. I'm too tired. I don't know if it's because I'm really sick -- my Crohn's is pretty much silent unless you count the 15 prescription drugs I take every day. I have some bouts of nausea and vomiting from the gastroparesis, but they pass. Still, I can't talk myself into getting out of bed an hour or so earlier so I can get back to swimming. On nights when I work late, i can't figure out what to do about dinner, so I eat a cookie and some pretzels and go to bed. My sleep is never uninterrupted, either by the need to use the bathroom or thoughts that are too loud to sleep through.

Work is under control, relatively speaking. My assistant Celeste is leaving and her sister Echo, whom I have loved all her life, is taking her place. I should feel calm about it, but I don't. Celeste knows how to let my stress roll off her back; I'm afraid Echo will try to take it on, and that's a crazy burden for anybody to bear, including me.

But right now, we have enough money so I can pay someone part-time to help with the workload from a couple of grants we have. The Pearl Jam fan-based nonprofit Wishlist, with the help of Mike McCready and his wife Ashley, has just raised a lot of money for us. I think we're pretty much good through the end of the year. How crazy is it to already be worrying about next year?

I have some fun things coming up. Pearl Jam is coming East. I will spend some time with Mike before the Hartford show, and I will go to the last night of the tour at Madison Square Garden, and I'll see Ashley at some point, whenever she's free. And James Taylor and Carole King will be here for my birthday. I have a seat on the stage, first row, seat 1 -- they have a rotating stage with a bunch of these onstage seats purchased at ridiculous amounts of money with much of it going to charity. What better birthday could I ever want than to be at eye-level with James Taylor and Carole King for a few hours listening to them fill my heart?

So if everything's so good, why am I so unhappy? It feels like exhaustion more than anything else. Like I've just plain run out of steam. I know at least some things I could do that would help -- swimming, eating right, not working so late so often. And I know some things that are making me very unhappy -- one work relationship in particular -- that I could pretty much walk away from and not really suffer. Indeed, the other party to the relationship is doing nothing, so if I just stop pushing, it will just fall away.

And that's really it, at bottom. If I stop pushing, it all just falls away. That's what has me in its grip. That's what makes me unable to find the will to change course in any way. Part of it is just that I'm afraid to do anything to shift the inertia; if I stop doing anything but moving straight forward, it will all fall apart. Part of it is, indeed, pure exhaustion. Part of it is anger and resentment -- why doesn't anybody care enough to find some way to help me (I have no clue what help I need or how anybody could do it, but I angry at being alone in this struggle)?

I get calls from people who are where I am all the time. They apply for disability, fight for two years, drain their savings, then learn to live on nothing -- I don't want that life. But I don't want this one, either. And when I find myself unable to picture any life I want, I am nothing but black. (Please don't worry; I'm talking about emotional stuff. I have no intention of hurting myself or taking any steps to end my life, now or at any time in the future. I'm just talking here.) And sadly, I don't have me to call and talk to.

I know what i have to do. Once again, I have to pull myself up out of this hole, get back to swimming, figure out how to eat at least one meal including protein every day, do something about my inability to sleep -- I have to change course. It just takes so much energy. And that's the one thing I don't have.

I'll see my shrink tomorrow. I usually see her earlier in the week, so she's not used to seeing me totally shattered. I'm glad this is working out this way. She should see how I look when there is nothing left of me. I need her to see this so she can really help me out of this rut.

So there it is. Me today. For what it's worth. Just so you know there are no heroes. We all have black days. Jennifer

Small Business Owners Have Mixed Reviews on Health Law's Tax Credits

Kaiser Health News here. Jennifer

Notice of upcoming event

Do you have questions for our health experts about how the new bill will affect your healthcare, and more specifically, the insurance industry?

Check out our webchat this upcoming Friday April 30 at 2:30 P.M. ET, to learn even more about how the Affordable Care Act will hold insurance companies accountable so that the health care system works for you rather than against you.

Watch live at www.hhs.gov/live.

Send your questions to healthreform@hhs.gov and we’ll answer as many as possible during the webchat. We will also take questions live from Twitter using handle @HHSGOV.

We want you to keep you updated on how the new law will improve your health security and the health security of your loved ones.

This week’s show will be our fifth webchat in our series. Each week we will be discussing different aspects of the new health reform bill so that you, your family and friends can get your questions answered.

You can find previous webchats on www.healthreform.gov and browse the site to find all the latest information available from HHS on the new law.

Thanks for taking part in our weekly webchats and please keep watching to get your questions answered!

Jenny Backus
Acting Assistant Secretary of Public Affairs,
Moderator of the HHS Weekly Webchat

New High Risk Pools in Your State?

From Politico -- what will the states do? The article is here. Jennifer

First comments: Medical Loss Ratio

The Department of Health and Human Services has requested comments on the provision of the health reform bill that requires insurers to disclose their medical loss ratios, the percentage of premium dollars spent on health care vs. the percentage spent on administration and profit. Here are Advocacy for Patients' comments. Submit your own at www.regulations.gov.

Thank you for this opportunity to comment on sections 1001 and 10101 of the Patient Protection and Affordable Care Act (PPACA), Pub. L. 111-148, which added Section 2718 to the Public Health Service Act (PHS Act).Section 2718 requires health insurers offering individual or group coverage to submit annual reports to the Secretary on the percentages of premiums that the coverage spends on reimbursement for clinical services and activities that improve health care quality, and to provide rebates to enrollees if this spending does not meet minimum standards for a given plan year.

Advocacy for Patients with Chronic Illness is a 510(c)(3) tax exempt organization that provides free information, advice and advocacy services to patients with chronic illnesses nationwide.We serve approximately 1500 patients per year nationwide, and reach many more through publications and public speaking.At least half of our clients contact us with health insurance-related matters, i.e., they do not have coverage and have a pre-existing condition that precludes them from getting coverage, or they have insurance but their insurer has denied coverage of a treatment that their physician believes is medically necessary and appropriate.We file more than 500 insurance appeals each year on very complex coverage issues, mostly related to treatments of relatively rare disorders that insurers claim are experimental or investigational.It is from that perspective that we submit these comments.

First, section 2718 not only requires that insurers spend 80 to 85 percent of premium dollars on health care, but it conversely limits the percentage of premium dollars that can be earned as profit. That should help to bend the premium cost curve in favor of consumers. Second, requiring insurers to publicize the amount of premium dollars spent on administration will help to expose the sometimes abusive utilization review and appeal practices undertaken by insurers. Because we have handled so many insurance appeals, our experience is particularly relevant to this latter point.

Based on our experience, our strong recommendation is that the regulation requiring insurers to report the percentage of premium dollars spent on administration be broken down to show the percentage of premium dollars being spent on utilization review and the processing and defense of appeals, including the new external appeals that are created by the PPACA, so that States can evaluate whether this administrative expense is reasonable and necessary to fulfill the business needs of the insurer.

We understand and appreciate the role that utilization review plays in controlling costs. Insurers are permitted to limit coverage to treatments that are medically necessary. In addition, insurers are permitted to make educated decisions about whether an expensive treatment will be beneficial to the patient when the treatment is new and, thus, is considered experimental or investigational. If we are to control health care costs in the United States, frivolous, expensive treatments that do not hold great promise for positive health outcomes can and should be prohibited by insurers. However, in our experience, not all insurers limit denials of coverage to circumstances in which the treatment truly is experimental or investigational, or not medically necessary.

For example, we currently are handling an appeal from the denial of coverage of an occipital nerve stimulator (ONS) for occipital neuralgia (ON). This is a treatment that has been used for many years, that is supported by extraordinarily voluminous clinical research.The insurer has denied coverage on the ground that the treatment is experimental or investigational based on an assessment conducted by Hayes, Inc., an organization that performs medical technology assessments and sells them to insurers.In this particular case, the Hayes assessment says that the studies that have been conducted are not large enough to support a finding of efficacy.However, Hayes also admits that there are not enough patients with ON to conduct larger trials.Denying coverage of a treatment for a rare disorder is arbitrary and capricious when based solely on the fact that the studies that have been conducted have been small; indeed, Hayes states that larger studies are not feasible, but rejects ONS because these infeasible studies are needed anyway!That simply makes no logical sense and, thus, no reasonable insurer should be permitted to spend premium dollars denying coverage based on this sort of rationale.

Similarly, treatments are not covered despite the fact that they have FDA approval for one use but not another, and even when their use is well supported by medical literature and experience. For example, although 6-mercaptopurine and azathioprine have been used in the treatment of inflammatory bowel disease (IBD) for over thirty years, some insurers deny coverage of these drugs for IBD patients because they are FDA approved only for the treatment of cancer. This is so despite the fact that the FDA, as long ago as 1982, issued policy guidance encouraging physicians to prescribe off-label uses in appropriate circumstances as follows:

The appropriateness or the legality of prescribing approved drugs for uses not included in their official labeling is sometimes a cause of concern and confusion among practitioners. Under the Federal Food, Drug, and Cosmetic (FD&C) Act, a drug approved for marketing may be labeled, promoted, and advertised by the manufacturer only for those uses for which the drug’s safety and effectiveness have been established and which the FDA has approved. These are commonly referred to as the “approved uses.” This means that adequate and well-controlled clinical trials have documented these uses, and the results of the trials have been reviewed and approved by the FDA.

The FD&C Act does not, however, limit the manner in which a physician may use an approved drug. Once a product has been approved for marketing, a physician may prescribe it for uses or in treatment regimens or patient populations that are not included in approved labeling. Such “unapproved” or, more precisely, “unlabeled” uses may be appropriate and rational in certain circumstances, and may, in fact, reflect approaches to drug therapy that have been extensively reported in medical literature.

The term “unapproved uses” is, to some extent, misleading. It includes a variety of situations ranging from unstudied to thoroughly investigated drug uses. Valid new uses for drugs already on the market are often first discovered through serendipitous observations and therapeutic innovations, subsequently confirmed by well-planned and executed clinical investigations. Before such advances can be added to the approved labeling, however, data substantiating the effectiveness of a new use or regimen must be submitted by the manufacture to the FDA for evaluation. This may take time and, without the initiative of the drug manufacturer whose product is involved, may never occur. For that reason, accepted medical practice often includes drug use that is not reflected in approved drug labeling.

FDA Drug Bulletin re: “Use of Approved Drugs for Unlabeled Indications,” Department of Health and Human Services, Public Health Service Food and Drug Administration, April 1982, Volume 12 Number 1, Pages 4-5.Thus, while it is entirely appropriate for insurers to deny coverage of drugs for “off-label” uses when their use has no precedent and medical judgment does not support the use of the drug, when, instead, a drug has been used to treat an illness for many years, there has been ample clinical study, and the insurer’s reservation about providing coverage is based solely on the fact that the drug’s manufacturer has not gone back to the FDA to expand its labeling, the denial of coverage is inappropriate.

Again, this is especially true in the case of treatment of rare diseases as to which large clinical trials simply are impossible.We recently appealed the denial of coverage of Rituxan (rituximin) for the treatment of neuromyelitis optica (NMO) when the patient had been treated with intravenous steroids for years, and was rapidly losing her eyesight because the steroids no longer were effective.This patient had actually undergone two treatments of Rituxan that had produced her longest remission in ten years.We were able to conduct sufficient medical research to establish that the use of Rituxan to treat NMO is entirely accepted by the medical community, and the insurer ultimately relented. There simply is no excuse for the insurer not having done the research that we did; what about the patients who cannot find us and do not have vigorous advocates who are capable and willing to perform extensive medical and legal research?

This pattern of denials of coverage in situations in which the use of the treatment is well-established extends beyond drugs.For example, gastric electrical stimulation is used in the treatment of diabetic and idiopathic gastroparesis. Patients with gastroparesis suffer from constant nausea and vomiting. When drugs such as Reglan and Erythromycin do not work, when the patient has even tried Botox injections to the pylorus, and/or a drug called Domperidone which is not FDA approved or covered by any insurer, when the patient requires enteral or parenteral nutrition, and especially when a diabetic cannot control glucose levels due to the inability to control food intake, gastric electrical stimulation is the last resort. Gastric electrical stimulation has a Humanitarian Device Exemption from the FDA because it is used on fewer than 4000 patients annually in the United States.For this reason – and this reason alone – insurers deny coverage on the ground that gastric electrical stimulation is experimental or investigational. We have handled 104 cases involving gastric electrical stimulation. We win our appeals more than 95 percent of the time.Due to our efforts, UnitedHealthcare and the Coventry family of insurers have changed their policy and now cover gastric electrical stimulation routinely in cases in which all other options have been tried and failed. Yet, there are several other insurers – most notably Blue Crosses nationally – who continue to deny coverage.In each such case, we have to exhaust the insurer’s appeal process and pursue external appeals in order to prevail.That means that patients who are in ERISA plans, which are not currently subject to external appeal, and patients in the five states that do not yet have an external appeal mechanism, are lost unless we can find an attorney to pursue litigation on their behalf, which is something we cannot do ourselves based on our limited budget and staffing.

These examples are designed to illustrate the fact that, although some insurers are responsible in conducting utilization review and appeals, not all of them are, and for those who force consumers to file repeated appeals that ultimately are granted by independent reviewers – especially for those who deny coverage of treatments for rare diseases for which large clinical trials are impossible – the abusive, unprincipled use of utilization review should be discouraged in every way. This is so particularly because most consumers do not have the resources to assemble what amounts to a summary judgment motion’s worth of legal and medical research and analysis. One way to accomplish this would be to require insurers to report publicly the percentage of administrative costs that are spent on utilization review and appeals, especially in cases in which coverage ultimately is granted either by the insurer or by an external reviewer.This percentage then could be tracked, and the practices of various insurers could be compared so that States could determine whether and when an insurer may be abusing its right to conduct utilization review.This data could be used by States to evaluate the reasonableness of rates, and to engage in dialogues and with, and perhaps even take action against, insurers that are spending an unusually high percentage of premium dollars attempting to curtail coverage.

In closing, it is important to note that we are not overly skeptical of insurers due to our experience; we are, instead, realistic. In a report from the Senate Commerce Committee released on April 15, 2010, that Committee found that insurers already had “reclassified more than half a billion dollars of administrative expenses as medical expenses, and a leading industry analyst recently released a report explaining how the new law gives for-profit insurers a powerful new incentive to ‘MLR shift’ their previously identified administrative expenses.”Dan Froomkin, “Health Insurance Companies Shifting Costs to Protect Profits From New Law,” Huffington Post, April 15, 2010.If, in fact, insurers cynically attempt to disguise administrative expenses as medical expenses, one of the most obvious places to do that is in utilization review, which easily can be characterized as medical necessity review, thereby hidden from scrutiny when States review medical loss ratio data.Requiring insurers to report the percentage of costs spent on utilization review and appeals separately would block one avenue by which insurers could hide administrative costs, thereby better preserving the intent of the PPACA.

Of course, if you would like any additional information or examples, or to discuss this matter, please do not hesitate to contact me.

Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.

Coverage of Adult Children Moves Ahead

Three Health Insurers Give Many Young Adults A Break
Three of the nation's largest health insurers announced this week that young adults can remain under their parents' policies until Sept. 23, when a new federal law guarantees them coverage. UnitedHealthcare, WellPoint Inc. and Humana Inc. said they will not wait until President Obama's new healthcare reforms take effect. They include provisions allowing young adults to remain under their parents' health plans until age 26 (Los Angeles Times).

An Amazing Juxtaposition

James Taylor and Pearl Jam in the same clip? I never thought I would see this. Enjoy! Jennifer

Health Reform Unpopular

Recent polls show that President Obama's poll numbers are down, and the primary reason for this is discontent with his health insurance reform plan. I contend that the discontent is not with the plan itself, but with what people THINK is in the plan -- which appears to be vastly different from reality.

I was on a panel at the University of Connecticut Law School on health reform last night. A colleague of mine, Jill Zorn, a program officer at the Universal Healthcare Foundation of Connecticut, told a story. One of the many tales being told across the heartland is that in 2014, all newborns will have a computer chip implanted in them. If you look at the pages of the law that are cited for this ridiculous proposition, you would see that they reference CHIP -- the Children's Health Insurance Program. And that's all it takes to make up a lie.

We've had death panels, and now this. When will the message war end? Health reform detractors seem intent on saying whatever they need to say to scare people, to anger them, to try to rile them up in opposition to health reform. What I can't quite figure out still, after all this time, is what is motivating them?

Everybody agrees that the status quo is unsustainable and broken. Something needed to change. Several Republican proposals were incorporated into the final legislation, but they still oppose it. My gut tells me that this is about trying to bring down President Obama and a Democrat Congress, and that it has nothing to do with health reform at all.

As you know, 19 states are bringing lawsuits to stop the new law from taking effect. I challenged a room full of lawyers, law students, and advocates to tell me what the legal argument is. A mandate to purchase health insurance if you can afford it, or to enroll and have the government help you pay for it is you can't, violates what? At a time when states are struggling financially, bringing frivolous lawsuits that will cost millions of dollars is totally irresponsible.

The fear-mongering comes down to a basic mistrust of government, and the federal government in particular. I understand this. But the federal government already controls and administers the health care of many millions of Americans -- Medicare, Medicaid, federal employees, the military and veterans, federal prisoners, and on and on. What's happening here is not so much an expansion of federal power as it is a shift in the relationship among the federal government, states, insurers, health care providers, pharmaceuticals, and other stakeholders -- including patients.

Much of the specifics of health reform remains to be determined by regulatory process and implementation. But I promise you, there are no death panels, no computer chips implanted, nothing sinister. At bottom, although we "won" health reform, we lost the message war, and that may be the biggest task left to accomplish -- we must educate the public so that they understand the true nature of health reform. Jennifer

Justice Stevens

I promised you at the end of last week that I would have more to say about the retirement of Justice Stevens from the Supreme Court, so here goes.

I grew up watching the Supreme Court and wanting to be a judge. I went to law school wanting to be a judge. Or even Justice, because I was arrogant enough to think I might actually be smart enough (I know better now). My consciousness of the Court began as William O. Douglas was winding down. There was Thurgood Marshall, Earl Warren, and John Paul Stevens. He was one of the greats. Indeed, if you go back historically to Felix Frankfurter and Justice Brandeis, you can't help but feel that the smartest and best lawyers in the United States were on the Supreme Court - or at least that the people who were on the Supreme Court belonged there.

John Paul Stevens has had a special talent that goes far beyond book smarts; he was able to create coalitions, get that last fifth vote time after time, to forge unnatural but critical alliances. His political acumen was, then, every bit as important as his brilliance, especially in these later years, when he was the last remaining hero on the Court.

The Court has been demeaned tremendously by a string of mediocre appointments. It's not that Justices Scalia on the right and Justice Ginsberg on the left aren't really, really smart people. But they don't rise above the political fray and do the right thing; they are part of the politics of America. Instead of being the champion of the little guy -- the guy who had no voice in politics but could find a bastion of power and righteousness on the Supreme Court -- the Court has been co-opted by politics, from the coronation of George W Bush to allowing corporations to make unrestricted campaign distributions to chipping away seemingly inevitably at Roe v. Wade.

I used to read every decision the Court handed down. If nothing else, there was something to learn, there was a way of writing, oratory, unmitigated brilliance.

Justice Stevens is the last of those, the last intellectual, the last Justice who was not vetted for his politics. Indeed, as one of the last pre-Bork appointees -- the last who was not questioned about his personal politics, whose previous writings and activities were not torn apart to reveal a bias that may or may not really be there -- he may be the last to disappoint his nominator, the last liberal to be nominated by a Republican, albeit a moderate one.

Today's Court is just another court. Yes, it has the last word. Yes, it has the great potential to undo much of the good that has been done in the past fifty years for civil rights and women's rights -- indeed, it already has. But now it can do so without a conscience. There is nobody left who carries with him or her the history of Brown v. Board of Education, not to mention Roe v. Wade and its progeny. This is a shiny new Court that is likely to last for a good long time, leaving behind the struggles of the civil rights era to instead engage in struggles that may be equally important, but that rarely make us regard the Court as a Great One.

Today's Justices are smart. And Justice Ginsberg in particular is a hero of mine, although more for what she did before she was on the Court than for what she has done since. And really, they aren't all as smart as they need to be -- Clarence Thomas is exactly what we all feared he would be -- a mediocre follower. I don't see Justice Roberts as a great intellect. Justice Kennedy is so unpredictable as to make one wonder where his principles truly lie. Justices Breyer and Alito are intelligent, but they are not intellectual giants. Indeed, only Justice Scalia -- with whom I disagree about pretty much everything under the sun -- has that greatness of mind that the giants of the Court traditionally have had. But he, too, is young, and does not carry with him the history of the civil rights years. And so nobody on the Court will now remember -- not just intellectually, but in their gut -- the special place the Supreme Court has had in protecting the rights of those who could not protect themselves.

So it is with great sadness that I contemplate a court without Justice John Paul Stevens. Not only because he could form coalitions like nobody else can. Not only because he still wrote all of his own first drafts. Not only because I agree with him most of the time. But because with him goes a significant chapter in the history of America and the place of the Supreme Court.

Smarter people than I will write about this more articulately with lots of footnotes, dissecting his opinions, both majority and dissent. I say only that I am sad to see the conscience of the Court shaken by his leaving. Jennifer

An important issue -- Pre-Existing Condition Exclusions

A good article on the effect of pre-existing condition exclusions, at least until the new law takes full effect in 2014. The article can be found here. Jennifer

Extension of COBRA subsidy

From Kaiser Daily Health Policy Report -- the 65% subsidy expired March 31, but was reinstated once Congress came back from the Easter recess. "The fight comes as 33 different states have now run out of unemployment benefits money, and are borrowing cash from the feds to make up the difference" (Dupree, 4/12). The New York Times: Democrats claim that COBRA and other
jobless benefits are traditionally treated as "an emergency, and that the payments help the economy and generate new tax revenues, since the money is typically immediately applied to essential purchases. ... Republicans say the difference now is that the nation has sunk far too deep into deficit spending to continue to put the jobless benefits on the national credit card" (Hulse,
4/9).

Hillary Clinton for SCOTUS?!!!

http://www.huffingtonpost.com/2010/04/12/hillary-clinton-supreme-c_n_533704.html

What does health reform mean to me?

Here are some sources for you:

Department of Health and Human Services officials conducting weekly "Web chats" on the new health care law. The queries are part of an avalanche of questions aimed at government officials, physicians and nonprofit groups as Americans struggle to understand the complexities of the new law.

AARP’s "Health Care Reform Explained" column

"Health Reform Central," a Web-based tool created by the consumer group Families USA

Some people are sending questions to healthreform.gov, an HHS site where some answers are posted and others may be discussed during the weekly Web chats.

"If you have questions, we’ll have answers. If you aren’t sure what to believe, we’ll have the facts," HHS secretary Kathleen Sebelius said in a recent speech at the National Press Club.

The White House Web site has a feature - headlined "What will health reform mean to you?" - designed to answer frequently-asked questions.

Justice Stevens

Is retiring. I have to write something appropriately profound, but I can't get my brain to let go of all the details of our fundraiser tomorrow. So consider this a quick prelude to something that will be longer and more appropriate to the occasion.

I'm gonna miss him so. We all are. Jennifer

PARTY!!!!!!!!!!!!! Final reminder!!!

Saturday April 10, 2010 from 3 to 6 pm at the Black Bear Saloon, join us and the Pearl Jam fan-based nonprofit, the Wishlist Foundation, to celebrate the fifth birthday of Advocacy for Patients with Chronic Illness, Inc. $5 cover charge; 10% of the proceeds of all food and drink go to Advocacy for Patients, so come hungry and thirsty and ready for fun. There will be great music, a raffle, door prizes, and much, much more. Address is 187 Allyn Street, Hartford, CT 06103 (near the train station). If you have any questions, feel free to call Jennifer or Celeste at (860) 674-1370.

And yes, there will be cake!

Raffle items include movie tickets, t-shirts, Starbucks gift baskets!

Red Sox tickets for August 21 and autographed ball -- value $250!

Auction item: Pearl Jam poster signed by Mike McCready -- priceless!

The Pearl Jam fan-based Wishlist Foundation is co-sponsoring this event, as well as simulaneous events in Hawaii, Leeds (UK), Boston, Chicago, Seattle, Iowa, New Jersey , Los Angeles, and Miami. For more information on other locations, go here: http://wishlistfoundation.org/?p=244 or here: http://www.facebook.com/group.php?gid=216392006946#!/event.php?eid=264736729227&index=1.

What health reform means to you.

Click on this link to learn what health reform means for your state. Jennifer

In case you need this as much as I did

Ex drug rep comes clean

Scary, eh? Jennifer

Party On ....

Come join me...

By

Susan Campbell

on April 7, 2010 4:12 AM | Permalink | Comments (0)

...for a benefit for Advocacy for Patients with Chronic Illness, Inc., at Black Bear Saloon, starting at 3 p.m. Saturday.

The party, a project of Pearl Jam's Wishlist Foundation, includes food, drink, gift baskets, and auction items that include a guitar owned by Pearl Jam's Michael McCready, as well as Red Sox baseball tickets (and an autographed baseball).

Admission is $5, and 10 percent of all food and drink goes to Advocacy, Jennifer C. Jaff's amazing effort to get health care coverage for everyone. C'mon, drop by, and say hi.

Flickr photo

Chronicbabe Carnival

Check out Jenni Prokopy's chronicbabe carnival. For all you (male and female) chronic babes out there.

Emily

Everybody with a chronic illness should have a cat, a computer, and a book to write. I've been surprised by recent studies that say that people with disabilities are less likely to have computers. With the cost of computers coming down to where it's pretty reasonable, I'd like to think that most everybody can squirrel away a few dollars a month until they can afford one, although I talk to enough people who can't afford their medications that I know that, for some, there are no extra pennies, not to mention dollars. But I also can't imagine being without one. I could not do my job without internet access -- period. Indeed, I often get calls from patients who could have done an internet search and come up with the same information as I end up giving them. But that's okay; I'm glad to help. Still, for those of us who are mobile, it's important to remember that there are computers in every public library that we can use if we are looking for help the phone doesn't satisfy our needs.

Most of us have books in us. In some cases, it's a journal. In some cases, it's a story. But most people could write if they so chose. I guess because I love writing so much, I can't help but assume most others do, too. I spend half my life on the phone, but speaking and writing feel totally different to me. Writing -- even here, where it's intended to be read -- is private, it happens inside, it's a way to express oneself without gauging the reaction.

But unless you are allergic to cats, you really ought to get one. Emily is cow-print -- black and white -- with a pink nose and a purple collar with a bell on it that she loves. She doesn't walk; she prances. I don't know how else to describe the bouncing on her toes that she does when she feels secure. Which is most of the time -- all of the time when it's just me and her at home. She's gotten less scared of other people, although she's still not used to children. But she's getting there. I wish she liked being hugged more, but what she loves is to be scratched at either end -- head or butt. And she likes Boar's Head Virginia ham (not honey maple, mind you). And chicken is way up on her list of preferences, too.

No matter how sick I am, when I get in bed, Emily climbs on top of me -- whatever the highest point is. If I'm on my back, it's my tummy; if I'm on my side, it's my hip. She stands watch over me, facing outward, not toward me, making sure I'm safe while asleep. What more could one ask of a friend?

Conversation, you say? Emily and I have long, deep conversations. She knows when I'm up and when I'm down, and she responds accordingly.

She is, without doubt, the best friend I could ever ask for.

So if you have a chronic illness, think about getting a cat. They take very little work. These days, you can buy scoop-able little (although Emily won't use it), so you don't have to carry so much. Food is very inexpensive. And what you get back is worth it a thousand fold and then some.

I can't imagine life without Emily. I know I will get another cat when the time comes, but I know there will never be another Em. J

Happy Birthday to the Best Friend a Gal Could Ever Have

Jonathan Cohn on the Individual Mandate

Jonathan Cohn -- brilliant health writer for the New Republic and author of the book Sick -- argues in favor of the individual mandate here. Jennifer

New High Risk Pool

Described by the NY Times here. Jennifer

Coverage of Adult Children

We're starting to get some more info about the coverage of children to age 26 on their parents' policy. The provision takes effect 6 months after passage of the health reform bill, so September 23. The child has to be ineligible for insurance through work, and must be "dependent" on the parent. It's not clear what "dependent" means, although it clearly includes college students, and according to Huffington Post, children will not have to live with their parents to be considered "dependent." It's unclear whether the parent has to wait for the next open enrollment period to add a child to their policy. Jennifer

Working Through Some Stuff

I've been working through some personal stuff lately. Maybe sharing it will help me sort it out.

I was supposed to be famous or important or something. My dad says "imagine what Jenni would have done had she not been sick." So what I've done while being sick isn't enough to fulfill the expectations my parents had of me -- and the expectations I allowed myself to adopt for myself, as well. I should be Secretary of Health and Human Services at the very least. Instead, I sit in my house largely unrecognized doing worthwhile work, but not being famous or important in a big way. Why isn't it enough that I'm really important to a few hundred or even thousand people?

I've done some pretty big things -- things that seemed big at the time. I brought the first civil RICO cases for Medicaid fraud on behalf of a state, and I represented Connecticut in the only joint state-federal case against violent anti-choice demonstrators blocking access to a clinic in Bridgeport. But the Attorney General has all but forgotten my name. I've been in the NY Times a couple of times now, USA Today, Forbes, etc., etc. But I'm mostly anonymous. I have some very famous friends, but that sort of makes it worse -- when they don't respond to me like I feel they should, I feel even less, even smaller.

For example, I gave one of my famous friends a VERY expensive gift. He didn't even say thanks. But he's done a lot for me and will continue to do so, so the thank you shouldn't matter. And yet, it's killing me. Is it that I should matter more to him? Yeah, I think it is -- I should be more important, and I'm hurt when my efforts go unrecognized. But it's screwed up of me. You have to give for the sake of giving, not for the response. And he is a great friend in so many other ways. That should be enough for me. Why do I need more?

Yesterday, I also won a really big insurance appeal. The patient was near tears when I told him. He couldn't believe it. He's broke, so he can't make a donation, and I didn't expect one. Indeed, I expect nothing from the people who I do work for. Every once in awhile someone who I know has resources annoys me by taking our free work for granted, but for the most part, the people we help are incredibly grateful, and express their thanks very profusely in very lovely ways. Why doesn't that fill my heart with pride? I know the work I do is important, and I know I've touched thousands of people with it. Why isn't that good enough? Why does it matter that I'm important at all?

Grandiosity gets me in trouble. When I feel really important, that sets me up for a fall. But the lows are really hurtful, too, when I feel totally invisible and insignificant.

I don't know if any of this makes sense. All I know is that I'm killing myself -- working 15 hour days, trying to be all things to all people, spending money on other people that I could spend on myself, eating badly, not sleeping anywhere near enough, feeling so tired that I'm shaking like a leaf. And feeling like an idiot because people I don't much matter to matter so much to me, and people to whom I matter so much don't matter enough to me, so it's all screwed up. I'm at a low point. But I'm working on it. And it's a process. And my shrink was out sick this week so I lost important momentum. So I guess I just have to be glad I'm working on it and that has to be enough for right now.

I hope this makes any sense. Jennifer

Because I can

If you hate loud rock and roll, I forgive you, but this is SOOOOOOO awesome -- my friend Mike McCready (Pearl Jam) with Cheap Trick last week. I couldn't resist posting it. Jennifer