November 2011 Newsletter

In This Issue
External Appeals
The Chronicity Project
Know Your Rights Handbook
2010 handbook cover
Want to be your own advocate?  Learn how by ordering the Know Your Rights Handbook today. 
Learn about health and disability insurance, Social Security disability, employment discrimination, family and medical leave, school-based accommodations, resource location, and much more.

Click here
for more information.

Look What I Just Found! 
Okay -- one for the mind and one for the soul . . . and one just because it's really cool!

Enroll America is a nonprofit organization whose mission it is to help all Americans get and remain enrolled in health care coverage.  Enroll America is a collaborative effort of many stakeholder organizations, including consumer advocates, hospitals, doctors, insurance companies, pharmaceutical companies, employers, all joining together in support of easy, accessible and widely available enrollment processes.  Sign up for their email updates and you'll get information about available coverage and how to get and stay enrolled. 

How To Avoid Being Sad is one of the many projects of our friend Rachel Smith, who is one of the owners of Giving Tree Gallery, where I buy most of my jewelry gifts.  There are books, a killer t-shirt, and much wit and wisdom.  Rachel's goal is nothing less than to change the world -- something she and I share.  So if you need a reason to smile, go check her out.

Finally, I got an email from a wonderful woman named Sophie Lee.  She has created a really great website called IBS Tales.  It's stories of people with irritable bowel syndrome.  Sophie's also just published a book that you can read about on her site.  If you have IBS and feel alone, check this out.  You needn't ever feel alone again. 



chronic illness paper cover
Read the results of our chronic illness survey, available FREE here.
 What I'm Reading   
  This month's column should be called what I read, past tense.  On my trip to Florida, I finally had a chance to read Jon Reiner's The Man Who Couldn't Eat all the way through.  Let me tell you -- it's genius.  Jon is a wonderful writer whose ability to describe his experiences makes for a beautiful read.  And as his own journey unfolds, it almost becomes like reading a mystery novel, with suspense that makes you want to turn the page.  But most of all, it made me think about how much better those of us who not only accept our illness, but find a way to really incorporate it into our lives, like Jon has done with this book, and like I did with Advocacy for Patients, are happier and, I think, maybe even healthier for it.  If you have IBD, this is a must-read -- but really, whatever your chronic illness, Jon's book carries an essential lesson.  Our lives are made unpredictable by chronic illness. Embrace it -- or bang your head against a permanent brick wall.  What a great book.



  Handbook cover
Get Your Guts In Gear
 The 2011 rides are over, sadly.  By all accounts, they were an amazing experience for all involved.  Stay tuned for information on the 2012 rides.  In the meantime, to learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
Advocacy for Patients on the Move!  

November 6, 2011: CCFA Long Island.
November 10, 2011: Northeast Regional PALS meeting, on insurance exchanges.
November 16, 2011: Arthritis Foundation, again on insurance exchanges.
November 29, 2011: Guest speaker at University of Connecticut Business School class on health insurance.
Can we do a webinar for your organization?  Contact Jennifer and we'll be happy to accommodate your request.
It's Too Hard to Be Sick in America

2010 handbook cover

Our book,It's Too Hard to Be Sick In America,  is available FREE for your reading pleasure on our website. In it, we tell the stories of some of the patients with whom we've worked in order to show policymakers what chronic illness really looks like. Go have a read -- and the next time you talk to someone who clearly doesn't "get it," give them a copy of It's Too Hard to be Sick in America.

Advocacy for Patients with Chronic Illness

We provide FREE information, advice and advocacy services to patients with chronic illnesses in areas including health and disability insurance, Social Security disability, employment discrimination, Family & Medical Leave Act, school-based discrimination, and resource location.

Need help? 
Call (860) 674-1370
or email us

Advocacy for Patients Needs Your Help!

To keep providing these services for FREE, we need your help.

Advocacy for Patients is committed to using its funds to support the work we do on behalf of patients. Accordingly, due to the cost of registering to solicit donations in other states, we do not solicit donations outside of the states listed above. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.


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Last month's newsletter was met with great enthusiasm.  So many of you were surprised to learn that you're not the only one who hoards or is exhausted or has to juggle not one but several chronic illnesses.  There's a lot that ties the experiences all of us with chronic illnesses together. 

This month, sadly, I am overwhelmed with outrage over another aspect of the experience of people with chronic illnesses: The way too many of us are treated.

On the day I'm writing this (which -- due to my neurosis of having to do everything in advance in case I get sick -- is a couple of weeks before you're reading it), the Connecticut Supreme Court is hearing argument in a case that just disgusts me.  A woman with cerebral palsy and mental retardation was sexually assaulted.  Because she could not speak, she could not say "no."  The assailant was charged with sexual assault on someone who is "physically helpless."  He was convicted.  On appeal, the Appellate Court reversed saying she could have kicked or scratched or bitten if she couldn't speak -- or she could have groaned or screeched -- so she isn't really physically helpless.  Are you kidding me?  I can't decide whether to groan or screech upon reading that.  Would healthy women have to scratch or bite in order to prove that an assault was unwanted?  The Appellate Court said this particular statute only applied to victims who are unconscious or intoxicated.  There's a separate statute that applies to sexual assault on someone with mental retardation who is legally unable to consent.  It took a communication board -- a board with magnetic letters that can be moved around -- for the victim to report the assault afterwards.  Her ability to use a communication board, though, would have made it impossible to prove that she was legally unable to consent -- she's clearly smart!  So the state used the "physically helpless" statute to prosecute the man -- and the Appellate Court agreed with the defendant -- she wasn't physically helpless enough.  I am outraged.

I then read an article about 4 mentally disabled people who were chained to a boiler and locked in a basement, using buckets to capture their bodily waste, emaciated, cold -- I am, again, outraged.  (Notably, the FBI is looking into whether the case should be prosecuted as a hate crime under federal law).

Another story, a wheelchair-bound woman's dog was stolen from her and was held for ransom -- $1000 and her prescription meds.  Outraged.

A few days later, I got an email from a religious leader asking if I could help one of his parishioners who was being charged with murdering her baby.  The baby was born with short bowel syndrome and bruised easily due to nutritional deficits.  The state is claiming the mother caused the bruises.  I am outraged.

You think these things can't really happen -- or if they do, they're a fluke, or worse, maybe the mother really did it.  Except I've had more than a half dozen cases over the years in which a mother was accused of having Munchausen's or factitious disorder by proxy -- in other words, deliberately making her child sick.  I no longer am surprised.  I am just outraged.

Last week, I got a call from a woman whom herself is accused of factitious disorder and, thus, her ex-husband allegedly shouldn't have to pay her alimony because she isn't really sick.  Her doctors say she's sick, but so far, the court has completely ignored her doctors.  Hers is a mental illness brought on by the death of her only daughter, for whom she cared until she died.  The "system" says she should be fine to go back to work.  Never mind the fact that she gave up her career to take care of her daughter.  Never mind that she's been out of the work force for 15 years.  Never mind that she's so depressed she rarely leaves her tiny apartment.  Nobody believes her.  I am not surprised.  But I am outraged.

Shortly thereafter, I got a call from a woman with several rare diseases who, somewhere along the way, was diagnosed with bipolar disorder.  Her physical illnesses are not well treated now that she is living -- involuntarily -- in a housing community for the mentally ill where the staff tell her she's stupid, and her rent takes up most of her Social Security check, so she has no money for lawyers.  Last month, she almost got evicted (which may not have been such a bad thing considering where she's living) because she had to choose between buying food and paying her rent, and she chose food.  This woman is a registered nurse and has two college degrees and is almost finished with her Master's.  If you talked to her, you'd know she's quite educated, articulate -- indeed, she told me of her recent rape calmly, as someone who has told this story too many times before.  But she's at the mercy of people who couldn't care less about her.  I have to get her out of there -- long-distance.  Easier said than done.  I am outraged.

These cases should make you sick.  And angry.  But they also should make you scared.  How many of us with chronic illnesses have these stories to tell?  I'm afraid this is another piece of living with chronic illness that we share.  Especially women.

I was once hospitalized for my Crohn's and put on high doses of IV narcotics.  Over the week-end, my parents couldn't rouse me.  My dad hit me across the face, shook me, to no avail.  The nurses kept telling them not to worry.  Meanwhile, I was unconscious for days.  When the doctor came back after the week-end, she accused me of trying to kill myself -- suicide by IV drugs?  While unconscious?  Really?  Clearly, she just didn't want to take responsibility for overdosing me.  How on earth would a patient get access to IV drugs on her own?  And yet the mental illness label was all over my chart.  I had a sitter watching me every second.  I wasn't allowed to go to the bathroom alone.  I can never go back to that hospital again.  It is my local hospital.  I filed a complaint with the hospital.  A lot of good that did me.  The allegation that somehow I did this to myself is still in my chart.  I was scared then.  Now, I am outraged.

If you engage with the medical system often enough for long enough, at some point, your problems will be misunderstood.  You will be blamed.  And there won't be a whole lot you can do about it, especially if you try to go it alone.  That's why we have to recognize that this, too, is something we with chronic illnesses suffer.  We are not alone.  We have each other.  We have our outrage.

You read a book or hear a story that's really bizarre and you think it's just an aberration, a once-in-a-lifetime situation.  Sitting where I sit, though, I rarely think that any more.  I've heard it all, more than once.  And I've lived some of it, as well.  How many of you have been told that your illness was all in your head?  According to our chronic illness surveyover forty percent of people with chronic illnesses said they've been told by a doctor that they weren't really sick; twenty-seven percent were told by a doctor that they were mentally ill; nineteen percent said they were told that they were seeking unneeded drugs.  This isn't an occasional mistake; this is a bias in the system.  You show up at the emergency room in agony and they send you away because they believe you are drug seeking -- we must be outraged, all of us.

So if you felt relief last month when you learned that you are not alone in that many of us have fatigue, comorbidities and neuroses related to our chronic illnesses, then feel outrage now, as you learn how many of us are treated horrendously due to our illnesses.  This, too, is part of chronic illness.  This is the part you should be really angry about.

But of course, this also is a part very few of us are willing to talk about.  There are things that have happened to me that I would not put in this newsletter for fear that you might think accusations were true or that I somehow deserved how I was treated.  Yes, we share that fear, that shame, too.

But what we have to share -- we have to hold onto -- is the outrage.  We have to remind ourselves and each other that none of this is our fault.  If we cannot be here for each other, then we truly are alone.  And so I tell you stories that are hard for me to tell so that you know it's okay to tell yours.  So that you know you aren't the only one.  So that you know that this, too, is part of chronic illness, of too-frequent contact with the "system," which finds a way to take our illnesses out on us one way or another. 

We may not be able to stop these things from happening.  But we sure can know for sure that the proper response is not shame; it is outrage.  And we can be stronger if we face this together.  Jennifer 
  I spoke at the Crohn's & Colitis Foundation Florida Chapter's educational seminar on October 22.  I speak at a lot of these.  Because of that -- and because I have Crohn's disease and because we work with so many patients with Crohn's disease -- I don't usually hear a whole lot that I've never heard before.  But this was different.

Dr. Domenique Musselman of the University of Miami is a psychiatrist with a specialty in neurobiology.  She presented her work and that of her colleagues.  What she said is this:  Inflammation causes depression.  Holy crap!  She did NOT say that people with chronic illnesses battle depression because of all the sadness and loss they suffer.  She did NOT say that inflammatory bowel disease is the kind of thing that could make anybody depressed.  She said inflammation CAUSES depression.  A physical response, not a psychological one (although, of course, we may also have psychologically-based depression).

There are studies, she said, and I've looked them up -- they're there.  In heart disease.  In cancer.  There is a neurobiological event in the body.  Inflammation CAUSES depression.  Indeed, she wonders if patients with diseases marked by inflammation shouldn't be taking prophylactic doses of anti-depressants.

Never in my life have I heard any doctor EVER say that there is a physical reason why we get depressed when we flare.  It's not just that we have a psychological response to a flare.  It's a physical response, a neurobiological response.

Eureka.  Wow.  Amazing.  Now, will our doctors, families, so-called friends stop telling us it's all in our heads? 
External Appeals

External appeals are now the law.  Deadlines were delayed for certain types of plans, and for awhile, certain types of plans didn't have to tell you about the external appeal -- they had to have external appeals, but they didn't have to tell you about it.  But now all of that is cleared out, and now, unless you are in a grandfathered plan (a plan that has not changed deductible, copay, coinsurance, employee's portion a lot since March 2010), you have a right to external appeal.

External appeal is a great thing for consumers.  After you finish appealing to your insurer, you can then appeal to an Independent Review Organization (IRO) that has the authority to overturn your insurance company.  A physician with the right specialty is supposed to review the file from scratch.  When they do, they often overturn the insurance company.  So don't give up; pursue external appeal.

I am doing battle now with a large national insurer that refuses to pay for a test that costs $193 called fecal calprotectin.  It's a test that can tell if you have active inflammatory bowel disease, as opposed to bacterial overgrowth or irritable bowel syndrome.  The only substitutes are colonoscopy or CT scan or MRI -- things that are way more expensive than $193.  However, the insurance company has a totally wrong clinical policy on this test, which says it's experimental for the purpose of predicting a relapse.  Duh -- nobody's ordering it to predict a relapse.  Still, because the people who review both claims and appeals look no further than the clinical policy, it keeps getting denied.

I did one case all the way to external appeal and won.  So in the next case, I sent a copy of the external appeal decision.  But since they didn't read what I sent them -- since all they did was look at their own clinical policy -- they denied again.  So now I'm filing a second level appeal just so I can get to external appeal and win again.  Thank goodness for the external appeal, or that insurance company would just keep denying these claims forever and we'd have no recourse.  Nobody's going to court over a $193 test.  But because we have external appeal, we know that, if we are persistent, we will win.

Indeed, we won a huge case last month -- a rare treatment for a very rare illness on behalf of a young man who had no other options.  We got the case at the external appeal stage and lost that first external appeal.  The patient went and tried a couple of other things, and then came back to us and said he really needed this treatment.  This time, we filed a first level appeal -- denied.  Second level appeal -- denied.  But on external appeal, finally, we got a reviewer who understood that to deny coverage of this treatment was tantamount to denying this young man any chance at a decent life.  Finally, we won.

And that's the point.  Don't give up.  External appeal is the most important step in the process, albeit the last step.  Never give up.  File your external appeal.  At least you know someone will actually read what you send them.



The Chronicity Project

This is the space in our newsletter where we talk about health care policy affecting the chronically ill.

Here's an update on what's happening in the legislative arenas:


The deficit committee (known as the Super-Committee) is meeting, although largely in secret.  They have to come up with $1.2 trillion in debt reduction by Thanksgiving or many program cuts will take effect automatically.  It's a very scary time as we watch not only our fragile economy, but also the likelihood that there will be some changes to Medicaid and Medicare as part of the deal -- if a deal is reached.  If a deal is not reached, there are automatic cuts which include cuts to Medicaid and Medicare, as well, although mostly on the provider side of the equation. 

Meanwhile, health reform implementation proceeds.  We filed detailed comments on regulations governing the creation of Exchanges or marketplaces where people can shop for and buy insurance.  In addition, we filed detailed comments on regulations governing a new, standardized summary of benefits and coverage that health plans will have to provide to you if you're shopping, so you can choose a plan, or after you have selected a plan, so you know what your plan says.  This will be a great tool for consumers -- if they get it right.  So we're already hard at work on our comments.

Contact your members of Congress and tell them what you think.  To find your Representative, go here; to find your Senator, go here.


We remain very concerned that no consumers or consumer advocates were selected to serve on the Board of the Connecticut Health Insurance Exchange, and will be working with other organizations to try to find the best way to make sure consumers' voices are heard.  We attended a meeting with Lieutenant Governor Nancy Wyman, the Chair of the Exchange Board, to discuss ways in which consumers might have a voice in the implementation of the Exchange.  We also helped draft requests for documents and information about the people who were chosen for the Exchange Board.  I'm not sure where this is going, but stay tuned . . . .

Last year, a bill was passed to require hearings whenever a health insurance company applied for a rate increase of more than 10 percent.  The Governor vetoed that bill.  Subsequently, our wonderful Healthcare Advocate Vicki Veltri worked out an arrangement with the Insurance Commissioner, who agreed to hold hearings on rate increases over 15 percent.  Of course, that means none of the insurers has asked for that high an increase.  However, they're close, and we're working with others in the advocacy community to see what we can do in the next legislative session that might be acceptable to the Governor.
Your State

News from our friends at the Neuropathy Action Foundation.  California Gov. Jerry Brown signed SB866 which takes effect on January 1, 2012 directing the state to create a single form for prior authorizations, the form can't be more than 2 pages long, all health plans and insurers have to use this form by January 2013, and if the plan or insurer doesn't use the form or fails to respond in 2 days, prior auth is deemed approved.  YAY!  And thanks to our friends at NAF for keeping us up to date.

We know that budget cutting has been threatening to result in major cuts in every state, and that seems universally to include Medicaid.  I don't have a state-by-state analysis, but the Kaiser Family Foundation is a great resource on Medicaid.  If you have questions about your state's Medicaid program, check them out.

In the meantime, keep up the fight. First, be aware. Read your local newspapers. Find the website for your state legislature. Read. Write your state legislators about things that concern you. One tool we like is the Kaiser Health News, to which you can subscribe for free. But don't just read: ACT. Go to hearings and testify. Tell your story. Put a real face on the healthcare crisis. 
Jennifer C. Jaff, Esq.                 2010 handbook cover
Executive Director
Advocacy for Patients with Chronic Illness

Need help?  Call us at (860) 674-1370 or email us at patient_advocate@sbcglobal.net.