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Chronic Illness 101: Community TV

  • Richard Cohen:

    Jennifer Jaff is executive director of advocacy for Patients With Chronic Illness.  The organization does free legal and insurance work for patients.  Jennifer has Crohn’s disease.  She also has gastroparesis, a stomach condition, so she is no stranger to chronic illness. 

    Jennifer, welcome first of all.  What motivated you to devote your professional life to advocacy for chronic illness?

  • Jennifer Jaff:

    Well, thank you so much, Richard, for having me.  I have been looking forward to our conversation.  I’ve had Crohn’s disease for about 35 years but in 2002, I got so sick that I was a trial lawyer at the time and I no longer could count on myself to get out of the house to go to court on any given day, and so I had to try to reinvent myself.  I was not ready to go on disability.  I wanted to find a way to continue to use my skills in a productive way. 

    I started looking on the Internet for resources for myself and what I found were communities of patients who were desperately in need of information and advice and assistance with health insurance, Social Security, disability, employment discrimination, school issues, and so on.  So I started answering questions and it was so very much appreciated, and I found out that actually, I got so much back from whatever I gave, that really, I couldn’t imagine not doing this work, and so it’s now become really a calling.  This is what I was meant to do in life.

  • Richard:

    That’s terrific.  Please define what a chronic illness is.

  • Jennifer:

    For me, I define a chronic illness as an illness that can go into remission and come out of remission but never gets cured and generally is not terminal, although sometimes the secondary effects of chronic illnesses are terminal.

  • Richard:

    But people are living longer with these illnesses than they used to, aren’t they?

  • Jennifer:

    Yes they are, and that’s part of the reason why the cost of chronic illness continues to skyrocket and become a major issue for the United States economy.

  • Richard:

    Well, I don’t think people understand that with all of the debate over health care and insurance, it’s not the terminal illnesses that are driving the debate.  It’s really these chronic illnesses that are breaking the system.

  • Jennifer:

    That’s absolutely right.  A terminal illness, although it may be an expensive catastrophic one year or two years of financial burden, a chronic illness is a burden every single year, and if you’re flaring, you can have catastrophic illnesses year after year.  So the best known statistic that I’ve read is that 75 cents of every dollar spent on health care in the United States is spent on chronic illness. So if we want to do something about reining in the cost of health care in the United States, we better do something about the cost of chronic illness.

  • Richard:

    Well, another way of saying it also is that four or five years ago, the CDC, the Centers for Disease Control, put the number at 90 million Americans with chronic illnesses.  The CDC says now that 137 million people have chronic illnesses.  Nobody’s really explained that, and I don’t know if you have a theory.  My theory is that we’re an aging population and the baby boomers are getting chronic illnesses as they age.  80% of people over 65 have more than one chronic illness, and I think that’s what accounts for the statistic.  What do you think?

  • Jennifer:

    I think that’s a big part of it.  I also think people are being diagnosed more often.  I think medical science has gotten better, so not only does it keep us alive longer, but it also diagnoses us more definitively, earlier on.  So I think it’s a combination of factors that drives up the numbers.  But what drives up the economic impact of chronic illness certainly is, as you say, the lengthened life expectancy of people with chronic illnesses and the toll that takes on the economy as a whole.

  • Richard:

    Right.  Now, isn’t there a minefield of quality-of-life issues that go along with extending life?

  • Jennifer:

    No question whatsoever.  I can tell you just on a very personal level that I had Crohn’s disease for about 35 years and when I got gastroparesis, which is a paralysis of the stomach muscles, the first thing I did was have my living will rewritten so that it would be clear to everyone that I do not want a feeding tube.  So we with chronic illnesses are having to make decisions about what we are and are not willing to do in terms of our quality of life.  We can prolong our lives, but at what cost?

  • Richard:

    Right.

  • Jennifer:

    And I think it’s very important for us to make our own decisions about those kinds of questions, which of course, makes it very important to have a living will.

  • Richard:

    I think it’s also very important that people in this country learn about chronic illnesses.  If you don’t have a chronic illness, somebody in your family has it, your neighbor has it, your colleague has it, your college roommate has it.  Everybody brushes up against chronic illness.  There’s no escaping it, and my experience is that chronic illnesses redefine life.

  • Jennifer:

    Since I’ve had a chronic illness for so long, it’s hard for me to imagine what life would be like without a chronic illness, but think about this, I have pain 24-7.  I am in pain when I sleep, I am in pain when I am awake, I am in tremendous pain after I eat. There is not one moment of my life that goes by without me being in pain. And I know I’m not extraordinary in that regard among the chronically ill, and when you’re in pain 24-7, when food becomes the enemy because it makes you even sicker and even worse, you don’t have insurance or you don’t have ways to pay for the health care that you need, your quality of life is changed immeasurably.  Relationships suffer, family relationships suffer. 

    I know my family keeps me at a far arm's length because they’re afraid of what I’m going to ask them to do for me, even though I very seldom do.  But I know that they worry about me becoming a burden, and I think the people I talk to with chronic illnesses express all of those kinds of issues and they come up with things. I worked with a woman who had been married to one of the most well-known lawyers in the state of Connecticut and they got divorced, and then she got sick and when she passed away, she passed away with three bags full of notices from collection agencies and billing agents, and she said to me once, I never didn’t pay a bill before in my life, I’m so ashamed.  Now, we should not be ashamed because we got sick.  All we did wrong was get sick and for the most part, we didn’t get sick in a way that could have been prevented.

  • Richard:

    Well Jennifer, talk to me a little bit, because we have talked about it in the past, about the nightmare or certainly the potential nightmare of managing a chronic illness.

  • Jennifer:

    You have to be an active participant in your own care.  That means learning how to talk medicine with your doctors, which is not easy.  It means learning how to talk to billing people in your doctor’s office, which they find to be a nuisance.  It means learning how to read an explanation of benefits that you get from your insurance company and then learning how to write an insurance appeal. It means learning how to talk to your employer about accommodations you need so that you don’t lose your job or how to ask for family and medical leave so that you don’t get fired due to absenteeism. 

    All of those things go into being a chronic illness.  It is and certainly can be a full-time job. 

  • Richard:

    You know, you’ve talked to me about how to deal with all of these people, all of these forces, all of these doctors, and keep them on your side.  What does that mean?

  • Jennifer:

    Well, that can be very difficult because you are, or we are going to demand more of our doctors than the routine patient.  When I, once a month, get my medications refilled, on average, two or three need a new prescription.  That may be from two or three different doctors.  I have to make sure those doctors get back to my pharmacy in time so that I get all of my medications when I need them.

    Now, my doctor’s offices don’t like to get those phone calls from me, nagging them about calling my pharmacy, but I have to find ways to be as kind to them as I possibly can, to do as much of the work for them as I possibly can. 

    So for example, one thing I try to encourage every patient to do is to collect their medical records as they go along the way.  I get a copy of; every time I have blood work done, I get a copy of the results of that blood work.  I then take responsibility for sending that to every single one of my doctors, so that all of my doctors have a copy of it.  I don’t make the doctors do that work.  So I take on as much of the work as I possibly can.

    When I go for a doctor appointment, I bring a nice typed list of the medications that I’m on so they don’t have to ask me and they don’t have to write it down and take the time.  It allows them to get through the appointment faster.  So it’s really about taking on as much of the work as you possibly can and acknowledging to them that you know that your demands are a little bit more than the demands that are posed by other patients and that you recognize that.  Then of course, it doesn’t hurt to send holiday cards to your doctor’s offices.  They really are appreciated. 

    My relationships with my doctors are among the most important relationships in my life and I have to treat them as if they were my best friends because I need them in my life, I need them on my side.

  • Richard:

    Well, you know Dr. Jerome **** of Harvard wrote a wonderful book on what doctors think and he argues that doctors who like their patients give better care than doctors who don’t like their patients.

  • Jennifer:

    I don’t think there’s any question about that and because of the work that I do for free for patients all over the country, I am able to say to my doctors,"Hhey, if you have a patient with an insurance problem, send it to me, your office doesn’t have to handle it, I’ll handle it for you."

  • Richard:

    Right, and you know, with managed care, appointments seem to come in shorter and shorter blocks.  You get less and less time with doctors. You really have to be your own advocate, don’t you?

  • Jennifer:

    You do, and part of that is having materials and information already set to go for your doctor appointment.  If you’ve got that list of medicine and the doctor doesn’t have to spend 10 minutes writing down the list of your meds you can bring ... I keep a three page medical history on my computer.  I add to it when I need to, I change it when I need to, but at all times, if I have to go to a new doctor, I can give them, in three pages, I can give them 35 years of history.

    Going to your doctor with a list of questions so you don’t forget something that you wanted to ask.  Those kinds of things are all tremendously important and those are things that patients can do. 

  • Richard:

    Yeah, but you know, we do it by the seat of our pants.  I mean, it’s self taught.  I mean, I’ve had MS for years, I’ve had colon cancer, nobody ever sat me down and gave me pointers on being a better patient.  It just became intuitive that the better I was at being a patient, the better the doctor was going to be or the more effective the doctor was going to be treating me.

  • Jennifer:

    I have to tell you, the thing that shocked me the most about doing this work is how hard it can be for kids with chronic illnesses to get a little bit of flexibility from their schools.  It’s heartbreaking what little kids are going through.  Little children being sent to truancy court, and I’m not exaggerating.  They get sent to truancy court because they’re absent, even if they have a doctor’s note.  I mean, this isn’t right, and patients need to have a way to navigate the system so that those kinds of things don’t happen.

  • Richard:

    Yeah, but how are we going to teach people this?

  • Jennifer:

    Well actually, it’s not hard to teach it.  It’s not hard to learn it. There are more and more tools out there.  For example, there are visit trackers being developed on some of the medical-based web sites that allow people to keep track of their medical records. 

  • Richard:

    Well, I just think that this is much larger than you or me …

  • Jennifer:

    Of course it is.

  • Richard:

    And I just feel like the average person must feel like he or she is drowning when a chronic illness comes along.

  • Jennifer:

    Right.  I mean, the people who call me are absolutely drowning and they are often in tears.  There is help out there.  There are other organizations.  There’s a patient advocacy foundation.  I would say one word of caution to your listeners, and that is there are a lot of people who are hanging out shingles, calling themselves patient advocates who don’t know any of this and actually, I’ve had several cases referred to me after someone who called themselves a patient advocate, really messed things up.

    So when you, especially if you’re going to hire a patient advocate, please make sure that they have the background to do what it is you need them to do. If they’re a nurse, good, if they’re a lawyer, good.  If they’ve never done anything else before and they haven’t had any training, boy, ask a lot of questions before you spend that money because not only are you going to have to pay for your health care, but you’re going to pay on top of that for a patient advocate who may not have the tools they need to guide you. 

    But, see Richard, I think all of this isn’t, it’s not rocket science.  It takes reading, it takes taking being a patient very seriously. 

    Computers are absolutely essential for people with chronic illnesses.  If you can’t afford to have one at home, you go to the public library and you use one.  You have to read, you have to educate yourself.  Before you go to the doctor’s office, look up your symptoms, look up medications, see what kind of side effects they have, see what you think might be a good idea, bring something new to your doctor's attention.  It may be something they haven’t thought of that they would be very happy to work with you on.  Doctors will respect you if they learn that you are taking this seriously.  That’s the way to really forge a good relationship with your doctor.

  • Richard:

    Well, what you’re really saying is take responsibility for yourself and your illness and be proactive.

  • Jennifer:

    Take responsibility, be proactive, but at the same time, don’t take blame and shame, right?  Because responsibility doesn’t mean that it’s your fault.

  • Richard:

    Right, and it’s very easy to fall into that trap.

  • Jennifer:

    Especially the more politicians talk about wellness programs and prevention, the more those of us with chronic illnesses think we must have done something wrong. Well, you know, you couldn’t have prevented your MS and I couldn’t have prevented my Crohn’s disease, at least not based on current medical technology.  So it’s not all about prevention and wellness programs.  We need to know what to do with people when they’re sick.

  • Richard:

    Well, I think there’s a mind game that is part of this process and I think we as patients have to get involved and just have to take more on ourselves and sort of guide our own destiny.

  • Jennifer:

    Absolutely, there’s no question that we have to take responsibility and be proactive, and our doctors have to let us, and that may mean investing a little bit of time in us up-front so that we’re able to keep track of our illness and assist in coordinating our own care in the long run.  I know, when you first get that diagnosed, you don’t know all the different medications, you don’t know all; I remember the day that we sat in the doctor’s office.  I sat there with my mother and my father, and the doctor said you have Crohn’s disease and he said don’t worry, we’ll give you some medicine, you’ll be fine. 

    So even if you take that one step; actually, the first two things I would tell people to do is 1. Start collecting their medical records as they go along so that they develop a full set of their medical records, and 2. Keep a list of your medications on your computer so that you can change it and keep it updated so when you go to a doctor appointment, you print that out and you take that to your doctor.  If you could do just two things, those are the first two things I would urge people to do.

  • Richard:

    Right.  Well, Jennifer, it is a journey with that and I thank you for joining us today.

  • Jennifer:

    I thank you so much for asking me.  I don’t think people in the chronic illness community could possibly have more respect than I do for you and for your struggle and for your bravery, so I feel really quite honored to be able to have this conversation with you.

  • Richard:

    Thanks.

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