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Look What I Just Found!
This is not really a new find, but it is an old friend with a spiffy, new look to their website. The Center for Medicare Advocacy, founded by my friend and colleague Judith Stein, helps people understand Medicare and appeal Medicare denials. They know everything there is to know about Medicare. For the most part, their work is focused in Connecticut, but if you have a question and you're in another state, try calling their Washington, DC office for information. The Center is busily trying to rid us of the "improvement standard" -- a rule some Medicare providers say requires that a patient show improvement if they want to keep receiving services, such as at-home physical therapy. Not, so, says Judy and her team -- and they've filed a lawsuit to try to make sure they're right, so those of us with chronic illnesses have the same access to Medicare services as others. Kudos to the Center -- check them out!
Jennifer
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NEW!!!
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Read the results of our chronic illness survey, available FREE here.
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What I'm Reading
Sorry, but the truth is that I'm reading Pearl Jam 20, a chronical of the the life of one of the best rock bands in America. As you know, lead guitarist Mike McCready has Crohn's disease and is a great friend and supporter of Advocacy for Patients. I love reading about the early years, about how this collection of people came to be, and lasted 20 years -- longer than many marriages! So on its face, it has nothing to do with health care, but reading it is doing a lot for my mental health.
And, of course, the health-related book I'm reading is The Man Who Couldn't Eat by Jon Reiner. Fabulous. Jon's making the rounds to bookstores near you, so go check him out and get your copy signed.
Jennifer
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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).
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| Advocacy for Patients on the Move!
October 22, 2011 CCFA Miami (and yes, I am staying an extra day to soak up some of Mother Nature's vitamin D)
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.
Can we do a webinar for your organization? Contact Jennifer and we'll be happy to accommodate your request.!
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It's Too Hard to Be Sick in America
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.
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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.
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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.
THANK YOU!
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Some Random Thoughts about Chronic Illness
Chronic illness affects so many aspects of our lives. Since I am in a privileged position of getting to know so many people with chronic illnesses, I've been able to make some observations, some of which generalize from my own experience as a patient. They're brief and random; what ties them together is chronicity -- you know, the word I invented to stand for that which makes chronic illness different from illness that gets cured and illness that is terminal. Here are a few such observations.
Comorbidity
If you have a chronic illness, you should learn the word "comorbidity." I know literally thousands of people with chronic illnesses and very few of them have only one. I have Crohn's disease. My joint pain, gastroparesis, sleep apnea, asthma are all comorbidities - other chronic illnesses and conditions that exist side-by-side with what I consider to be my primary disability, Crohn's disease. Pretty much everybody I know with chronic fatigue syndrome also has fibromyalgia. Some also have multiple chemical sensitivity or Lyme disease. Or all of those.
The word "comorbidity" can be used in two different ways. A comorbidity may be an illness or set of symptoms that is secondary to a primary illness. In that sense, my Crohn's disease is primary and my joint pain is a secondary comorbidity. In the alternative, a comorbidity may be an illness or illnesses that exist side-by-side, so my Crohn's, gastroparesis, sleep apnea, and asthma are all comorbidities.
Either way you look at it, though, the point is the same. Many, if not most, people with chronic illnesses are juggling more than one illness, one set of symptoms, one set of medications. The more illnesses you have, the more the challenges are, not only for you, but for your physicians. If you have Crohn's disease, you have a gastroenterologist. If you have joint pain that goes along with it, you may have a rheumatologist. If you have persistent anemia, you might have a hematologist. The more illnesses, the more doctors - and the more doctors, the harder it is to coordinate care.
When I talk about chronic illnesses, I think most people assume I mean one illness per person when, in fact, I more often mean more than one. In the chronic illness survey we did with the University of Michigan Center for Managing Chronic Disease, 38 percent of respondents reported one chronic disease, 15 percent reported two conditions, 14 percent reported three conditions, 11 percent had four conditions, and 22 percent had five or more co-morbidities. That means the vast majority reported having comorbidities.
I think it's helpful to know that this is very common. And sometimes it helps to put a label on things. And so I offer you my word of the day: comorbidity.
Chronic Illness Neuroses?
Have you watched or heard about this reality TV show called Hoarders? It's what it sounds like - people who save everything until trash completely dominates their home and their life. I've never watched it, but I've caught commercials for it, and it's really gross.
I'm not that bad, but I am a hoarder. I have three or four cases of bottled water, enough kitty litter to get through several months, lots of cat food, and anything else I'm afraid I will run out of.
I wasn't always a hoarder, I don't think. But when I got desperately ill and could not go to the grocery store on my own, I started to ask people to bring essentials whenever they were coming by, so I would know I wouldn't run out. The stack of cases of bottled water was almost as tall as I am, although I backed off to some extent when the stack fell over one day. The bags of kitty litter are extreme. Everything is neat and in its place - my hoarding is well hidden and moderate enough so you might not even identify it as hoarding - but if I go to the grocery store and there's no kitty litter, I freak out until I find some to buy, even though I have plenty of it in the house. Every corner of my house is in use to store an extra roll of paper towels (or 20), enough Lean Cuisines to feed an army, bottles and bottles of shampoo and conditioner. I have more than what I need of about everything.
As best I can tell, this habit became a neurosis because I am afraid that I will get sick and won't be able to get to the store. It may be that I had a milder form of this before I got side-lined by illness, but it was never this bad until I had to rely on others to meet my needs. I hate asking for help more than I hate just about anything. I'd always managed to meet my own needs before. But when I got so sick that I couldn't drive or lift a bag of kitty litter, it got extreme.
It's not just hoarding supplies. I have to have this newsletter in the bank at least two weeks before it will go out - after all, what if I got sick and couldn't write for a couple of weeks? Although payday is on Friday, I write payroll checks on Wednesdays - what if I wasn't feeling well on Friday? I live my life under a cloud of "what ifs." And it definitely comes from being sick and the fear and aloneness that comes along with that.
It's all about creating the illusion that we have some control over our illnesses, and over our lives. But in the end, it is an illusion. Chronic illness has a mind of its own.
Chronic Illness Fatigue I recently reviewed a disability insurance denial to try to help the patient develop a strategy for how to proceed to try to get her disability. Under her disability insurance policy, she was disabled if she was unable to perform the functions of the job she was in at the time she became disabled (called "own occupation"). The patient was a researcher, a high level engineer who worked on federal contracts for military and defense. Although her job was sedentary, it required great cognitive skill, alertness, intellectual ability. The denial letter correctly recited her physical symptoms, which were moderate in severity. She could manage sedentary work, then, according to the insurer. Thus, she was not disabled. What the insurer missed - and what most people who have not had a chronic illness don't really understand - is the fatigue that comes along with chronic illness. It is not sleepiness, although we may also be sleepy. But this is bone tired. In my book, I called it Friday Tired because it's a fatigue that feels like every day is Friday. I could sleep for weeks and still be fatigued. We only call it "tired" because we don't have another word. So I - as is my wont - made up a phrase: Chronic Illness Fatigue. It doesn't get better with a nap. Or a vacation. Or even necessarily a reduction in other symptoms. It's a symptom in and of itself. I've read articles that refer to fatigue as a comorbidity - a second illness of its own, secondary to the primary chronic illness. I'm not talking about chronic fatigue syndrome, which is itself a primary illness. I'm talking about fatigue that comes with Crohn's disease or multiple sclerosis or rheumatoid arthritis. Chronic Illness Fatigue. Chronic Illness Fatigue certainly affected this patient's ability to do her job. She is so exhausted that tasks take her far longer than she used to. She may be in mid-sentence and lose her words or her train of thought. She makes mistakes. No way would she be able to perform the intensely intellectually demanding job she had when she became disabled. But how do we prove that we have Chronic Illness Fatigue? It's totally subjective. I tell my doctor I'm tired and he tells me to get some rest. Even he doesn't get that it has nothing to do with rest -- unless I'm going to stop working and rest all the time, which probably would feel like a relief, but I still would never get less tired or more energetic. If the medical profession is going to learn to do a better job at treating and controlling chronic illness, it needs to focus on Chronic Illness Fatigue. It needs to understand that it exists, and it needs to document it in specific cases so when a patient applies for disability, it won't be just her word against the world's. Chronic Illness Fatigue should be recognized as a comorbidity of most chronic illnesses. And it must be understood and documented and even treated. ~~~~ I suspect that those of you with chronic illnesses will find something familiar in at least one of these three little essays. If you do, at least you know now that you're not alone. Jennifer |
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R.A.R.E.
I was going to put this in the Look What I Just Found column this month, but I'm so excited about it that I need to say a bit more. I've posted before about Global Rare Disease Day, but I didn't fully understand the power of the folks behind that amazing project. The R.A.R.E. Project is all about people -- mostly kids -- with rare diseases. They started as the Children's Rare Disease Network and expanded from there. The R.A.R.E. Blog is full of great information about all kinds of issues affecting people with rare diseases, from doctors and also from parents, patients, caregivers, who face the obstacles those with rare diseases confront every day. And then there's the Global Genes Project -- you may have seen them on Facebook -- they have lots of events that involve no more work on your part than showing up somewhere in a pair of jeans! Their slogan: "Hope. It's in our genes!" And that it is, right?
Nicole Boice, who started all this, is a bundle of energy and enthusiasm. She tells me that there are 35 million Americans with rare diseases -- 350 million worldwide. Imagine if we all came together -- those of us who have rare diseases and those of us who care for or about someone who does. We could change the world, couldn't we? And if you look at us all together, there's more that binds us than that which distinguishes us. For example, all of the aspects of chronic illness I wrote about above are all things that people with rare diseases live with -- all things we have in common.
So, how about we help The R.A.R.E. Project and all of its parts get to their short-term goal of networking 1 million of us? Please go to any of their websites or Facebook pages TODAY and sign up to become part of their network. And keep watching. I'll be doing some blogging and partnering with them, and you'll be hearing more from me about what they're doing, too. Because together, we are stronger than we are alone. All of us. that means YOU.
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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:
Federal
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 are working on comments, to be filed later this month, 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.
Connecticut
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
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. |
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Jennifer C. Jaff, Esq.  Executive Director
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