Wednesday, January 28, 2009

How to Become a Patient Advocate

A commenter on my last post asked a question I've been asked several times before: How can I become a patient advocate? I understand that there are a couple of certification programs out there -- I don't know if they're any good -- and maybe I have to develop a course via book, video, maybe some live seminars to teach this. But until then, here are some of the basics.

First, you need to understand how insurance works -- self-funded versus fully-funded, how to read an explanation of benefits, how to file an appeal, how people with pre-existing conditions can get insurance, and at least a little about Medicaid and Medicare. And you have to learn about the Americans with Disabilities Act, the Family & Medical Leave Act, and the laws that apply to kids in schools (section 504 of the Rehabilitation Act and the IDEA, Individuals with Disabilities Education Act). And you have to get REALLY good at internet research so you can find resources for people.

In other words, buy my Know Your Rights Handbook, read it 12 times, memorize every word of it, and then you'll have the knowledge base you need.

That's really the hard part. The rest is something you either have or you don't, and that's compassion. I return every email and phone call the day they come in. When I don't have a good answer for someone, I take the time to explain why. I listen a lot. I let people lean on me as needed. I try very hard never to make someone feel like they're asking a stupid question. A lot of people think they have a case of discrimination when they can't possibly meet the burden of proof, or they want to know how to speed up their Social Security disability application, or they let their insurance lapse and now can't get coverage for their pre-existing condition. There are no happy answers to these sorts of questions, but they still are entitled to respect, and the better they understand why there are no answers, the more easily they will be able to leave the matter behind them and move forward.

If you're going to do this without being a lawyer, you also have to be very careful not to give legal advice. You can give information -- tell someone what the Americans with Disabilities Act says, how to invoke it, etc., but you can't give legal advice or you will be practicing law without a license and can get yourself in hot water. The distinction is between giving information and giving advice.

There are people out there who cross this line; I have had to clean up their messes several times. And that leads me to the other critical quality you need to be a good patient advocate: You have to be able to say "I don't know." You can always research. You can always refer the person to me or to one of the many organizations out there that cover specific issues. For example, I don't even try to master Medicare -- I know enough to be able to give basic advice, but if it comes to something more detailed, such as why Medicare will cover wound care if you need it every day but not if you need it only 3 days a week (a call I got from a hospital case manager yesterday), I refer to the Center for Medicare Advocacy or the Medicare Rights Center. Over time, you develop a library of referrals and you'll know which ones are responsive and responsible.

I think those are the key requisites for being good at this job: Knowledge, compassion, and humility. If you work on developing those attributes, I think you, too, can be a patient advocate. Jennifer

Monday, January 26, 2009

You'll Never Walk Alone -- I Hope

I just got off the phone with a mom who has a very sick kid. I spent close to an hour trying to reassure her and share what little I know about her child's illness with her. But really, it was about trying to show her that she's not alone.

I am a lawyer, not a therapist, but there are an awful lot of sick people out there who just plain feel alone. I am in touch with several of them on a very regular basis. There was D, who called me whenever she felt scared that her traumatic brain injury was going to cost her her autonomy, that she would end up in a nursing home. There was SB, who emailed me several times a day for a few months, mostly because he had nobody to talk to about his illness. And this mom today -- she has nobody to talk to.

I can't tell you how often I get a call from someone with Crohn's disease who didn't realize until we spoke that I have the same illness, and who says they've never talked to another person with Crohn's disease before. These aren't all newly diagnosed patients, either. These are patients who simply never talk about their disease because they don't know how others will react. This is especially common with so-called "bathroom diseases" like Crohn's disease, but it's not all that limited.

I talk, I listen, I share my experience. I leave out some of the scary parts unless they're particularly apropos, but I'm trying to reassure people, and parts of my personal journey are pretty scary. And the fact is that a big part of why I do the work I do right now is because I can do it from home. I approach my spring/summer travel season with great trepidation because I know what the travel takes out of me. Truthfully, if I weren't doing this work, I might end up on disability -- I don't know. I don't tell people in crisis all that.

But what I do know is that, in the meantime, I spend a lot of time reassuring people, propping people up. Letting them rehearse conversations they need to have with their employer, their kids' school, their doctor. Letting them tell me their fears. I'm not a particularly good "people person" -- ask anybody who knows me well enough and long enough to have had a fight with me. I'm not very good at diplomacy.

But somehow, I got good at making people feel less afraid and less alone. I'm not sure how I got good at this -- it's not something I think about a lot. I just do it. And it works. I suppose I'm good at it because it comes from the heart.

This mom had me on the phone for about an hour. It was an hour added onto my day, an hour when I should have been doing something else. But then again, what could I do that's more important than to convince a mom with a very sick kid that she's not alone?

Next week, I will make payroll out of our savings for the first time in a long time. It scares me to think of how many months I will be able to get away with that before we run out of money and I have to get a "real" job or go on disability. It scares me for me, but it also scares me a whole lot for the people I serve. Where will they go?

When will society value the time I spend helping patients solve real problems AND, in the process, helping them feel less alone, less afraid, less vulnerable?

I hope it never comes to that, because getting someone the medical care they need, helping a kid get treated with respect in school, or helping an adult stay employed despite being sick all is of great value. But perhaps the most valuable thing I do is to tell people that they'll never have to go through the darkness alone ever again. Jennifer

Tuesday, January 20, 2009

The Thrill of History in the Making

I am 51 years old.

I remember President Kennedy being elected. Caroline is almost exactly my age and I felt an affinity with her as a child. And Jackie was so stunning; I knew my mother wanted not only to look like her, but to BE her. But most of all, I could sense the national excitement this new, young President brought to the adults around me. It was infectious.

And I remember President Kennedy being shot. My mother was in the bathroom crying about a bad dye job on her hair when I told her. She didn't believe me. I wish I had been wrong.

I remember the March on Washington. I was too young to be there, and I resented that. I remember Dr. King's speech, which resonated with me even as a child. I was too young to know that the moment belonged to African-Americans. No -- this special moment belonged to us all. That was what Dr. King said, wasn't it?

And I remember Robert Kennedy being shot. And then Dr. King. I remember through the lens of a child, but I knew that hope was killed on those days.

I remember Vietnam. I remember the sit ins and shootings at Kent State. I remember Abbie Hoffman, and I remember refusing to believe that he committed suicide -- not him. I remember watching African-Americans asserting their right to vote, and I remember them being sprayed by powerful fire hoses. I remember Peter, Paul and Mary and Pete Seeger standing shoulder to shoulder with Mahalia Jackson.

I had mono the summer of the Watergate hearings and I watched every minute of them. Barbara Jordan was spectacular. She was who I wanted to be.

I watched these events through the eyes of a child. Through the miracle of television, I felt connected to John, Robert, Martin, the anti-war protesters, the free lovers, the feminists -- can it be, truly, that Gloria Steinem is now my friend? -- all of those Americans who pushed us to become more, better, smarter, and more loving to one another. I remember many dinner conversations in which I tried to convert my father from a Republican to a lefty -- and I did!

During the bad years -- the Nixon years, the Reagan years (I'm still waiting for the trickle to trickle down to me), the first Bush years, even the Carter years -- I yearned for inspirational leaders to carry us into the next century, leaders who would make my heart sing.

When Bill Clinton took office, I had real hope, and he was a very good President in many ways. But then came Monica-gate, and although he was still on the "right side" of the issues that matter most to me, I knew he could never go down in history as the great President he meant to be. His shortcomings made it impossible to feel proud of him, despite his many strengths.

Then came the second Bush, and with him a deep, eight-year despair. He has a brother with the same disease I have, but you would never know it based on his policies. He was insulated. He never heard us at all, never listened, didn't want to know. Those who disagreed with him were his enemies. There was no discourse; only discord.

I watched the war in Iraq drag on as Bin Laden got away. I watched this Republican President create a deficit that would be insurmountable even if our economy hadn't fallen apart. And then I lost over one-third of the too-small nest egg I have been nurturing in the hope that I can retire one day. I have felt powerless for so long.

And since I began my work on behalf of patients with chronic illnesses, I saw, every day, over and over, how horribly America treats its most vulnerable. Being sick in America is very difficult.

Two years ago, Barack Obama was a spoiler. I was a Hillary fan. It was time for a woman. It was time for a smart leader. It was her time.

And then it wasn't.

And I'm not sorry.

Barack Obama has more than won me over. He has shown a discipline -- "no drama Obama" -- that has been missing from politics and politicians for too long. He is brilliant. He has surrounded himself with the best and the brightest knowing that none of them is smarter than he; he is not afraid to listen to contrasting views, to allow the policy wonks to duke it out verbally so that all of the ramifications of an idea are vetted and voiced, because he knows that out of disagreement, the right answers will emerge and he will know them when he sees them. He is a stunningly brilliant man with a stunningly open heart that knows that America is at its greatest when we all -- including us sickos -- stand together, nurture each other, and celebrate our common bonds.

This young man, this African-American man, has become my hope. My heart soars at the thought of today's swearing in. The long darkness is over. There will be light now. He will lead us towards it; we need only follow. I believe in Barack Obama.

And so today I choke back tears at the thought of what his swearing in means. It means so much to African-Americans who need to know that they can be anything they want to be. But it means that for all of us, too. One needn't be African-American to know that, for Barack Obama, we all belong, we all can achieve, we are all needed, we are all wanted, we are all accepted. We are free. And we are one.

Today picks up where my childhood hope left off, as if all of the wars and discord and oppression can be set aside and we can, once again, hope.

As a child, I knew that President Kennedy inspired the adults around me, and I knew that, when he was killed, hopes were dashed and we entered nearly 40 years of mourning. We have not celebrated hope for that long.

Today I am an adult. I will watch President Obama being sworn in as an adult. And I will feel the same hope exploding in my chest as I think the adults felt when they looked at President Kennedy.

It has been too long since we've had a leader who inspired us. Thank goodness, our long national wait is over. Jennifer

Sunday, January 18, 2009

Keep Hope Alive: Righting the Greatest Injustice

The Reverend Martin Luther King, Jr., said: "Of all the forms of inequality, injustice in health care is the most shocking and inhumane."

Yet, as we watch the first African American be sworn in as President of these UNITED States, this is one inequality that has not be remedied, one injustice that has not been righted.

In this blog, I have shown you instances that illustrate the terribly injust, inequitable suffering that the chronically ill face in America. We have pre-existing conditions and cannot get health insurance. We have medical bills that bankrupt us, as if our diseases were not crippling enough. We face indignities every time an employer looks askance at us when we need to see a doctor, every time a child -- a child -- is placed on "lockdown," and not allowed to use a school bathroom. We battle not only our illnesses, but the lack of understanding, respect, and dignity that we face every single day.

But I believe our time is coming. I believe that Barack Obama means US, TOO when he says YES WE CAN! I believe that tomorrow will be a better day for the chronically ill in American, a day when we are understood, when our pain is everybody's pain, our needs are everybody's needs. For the first time in my audlt life, we are about to swear in a President who has promised to be there for us, and not just for the monied, for the powerful, for the healthy.

It may not happen today, but it is going to happen.

And so, in the words of the Reverend Jesse Jackson, I say to you, my fellow patients, their caregivers, and all who understand that there but for the grace of G-d go us all, today there is reason to Keep Hope Alive. For it is in hope that we must find our inspiration, our salvation, our reason.

For those of you who feel like your sorrows are too great, your burdens are too heavy, your pain too insufferable, I tell you that it is through HOPE that you will be find your way.

Rogers and Hammerstein wrote: "Walk on, walk on, with hope in your heart and you'll never walk alone." And that is true. Hold hope in your heart and you will NEVER be alone with your illness ever again.

Barack Obama gives me reason for HOPE. And so, let us hope together that he will help us to fulfill the DREAM of Martin Luther King and right the shocking and inhumane injustice that each of us who are chronically ill in America face.

And until that day that Dr. King's dream is as real for us as it is for African Americans as Barack Obama becomes the 44th President of the United States, we must Keep HOPE Alive. Jennifer

Tuesday, January 13, 2009

Sick Kids

I'm working with a family in Autauga County, Alabama. Their teen-aged son has Crohn's disease and misses a fair amount of school as a result. The father is in the Army, currently deployed to Iraq, leaving mom to deal with the school, which is particularly rigid in their policies.

At first, the school refused to provide any accommodations of this child's disability under section 504 of the Rehabilitation Act of 1973 on the ground that the disability does not affect the student's ability to learn. Then I got involved and pointed out that section 504 does not require a showing that the physical disability results in a learning disability, and they agreed to write a plan of accommodation. However, negotiation of the plan terms was painful and slow. Finally, though, we resolved most of the issues.

The most difficult issue to resolve was what to do when the student misses school due to illness. We were able to agree on provisions that address instances when the student misses a couple of days of school. Where we got stuck was on what to do when the student is out for a longer time -- a week or two -- and falls behind in his work.

When the family was based elsewhere, the parents would simply notify the school if the student was going to be absent for a few days, and the school would provide instruction on a daily basis. The teachers would send home outlines and assignments, and provide some tutoring, thereby allowing the student to remain current in his classwork.

The Autauga County school District's policy for "homebound instruction" says that, when a student is out for 20 or more consecutive school days, homebound instruction in the form of one hour of tutoring per week is provided. Not only is one hour per week insufficient, but requiring that the student miss a full month of school before qualifying for homebound services is a guarantee that the student will fall far behind before getting any help.

The school hired a lawyer to negotiate this point. We ended up with a plan that provides that, if the student is out for 10 consecutive days, he is eligible for homebound services. We did not make any progress on the number of hours of tutoring per week, but at least we made sure the student could get services sooner.

Then the young man broke his shoulder and was absent for 10 days. His mom didn't think much about the school issues because the absences had nothing to do with his Crohn's disease. The child went back to school after Thanksgiving for about three weeks, at which point the school called the mother in, ostensibly just to go over where the student stood in his classes.

Well, she got ambushed by the entire 504 committee, which voted to place the student on homebound instruction whether he and his parents liked it or not. This was after he had returned to school for awhile and was doing fine, and was entirely capable of attending school.

And here's the kicker. The school essentially kicked him out of school and confined him to his home, but refused to provide homebound services without a doctor's note indicating that he needed the homebound services due to his illness. The doctor refused to write such a note because the student did not need homebound services due to his illness, which was in remission. So really, they kicked him out of school but refused to provide homebound services, which is tantamount to expulsion without a hearing or any opportunity to object.

The school actually takes the position that, if the child is absent alot, it cannot provide educational services to him, so he should be on homebound instruction. Where the logic is in this, I don't know. It's not like he would get any real instruction on homebound; one hour a week surely isn't a substitute for going to school every day. And when the child is healthy, he ought to be allowed to attend school. Any other rule deprives the student of his right to a free, appropriate public education.

The school's lawyer -- bafflingly -- defends the school's position on this ground, that the school has to provide the student with an education, and it can't do so if he doesn't come to school, so therefore he should not come to school!!! That's really what she said. "[T]he District has an obligation to provide educational services to [the student], which the District is unable to do based on [the student's] numerous absences. Accordingly, as [the student's] 504 team determined, his most appropriate placement is homebound." I swear this is true. I'm not creative enough to make this up. We have to provide an education, but we can't because the student doesn't come to school regularly, so we think he should not come to school at all, sick or well. And while he's at home, we won't provide him with any services, either.

We then presented a doctor's note to the school saying that the student is medically cleared to attend school. Now, according to the District and its lawyer, we have to wait for the school to convene another 504 meeting so that the 504 committee can vote to allow the student to return to school. The student is falling behind every day, and we simply have to wait until this large group of teachers and adminstrators can clear their schedules so the child can return to school.

Since when are the civil rights statutes intended to be used to prevent a disabled student from attending school when he's feeling well enough to do so? How dare this school use its obligation to provide this young man with an education as an excuse for kicking him out of school? This perversion of the law is nothing short of insane. Yet, our recourse -- filing a complaint with the U.S. Department of Education Office of Civil Rights, which we may still do if we can not reach agreement with the District on how this will be handled in the future -- would take months, at the least, to have any positive effect. In the meantime, we have to continue to press the school to allow the student to attend classes or he will fall further behind.

We do a lot of work with schools. I find it to be shocking. Until I started Advocacy for Patients with Chronic Illness, I had no idea whatsoever that this was such a big problem. The truth is that it's huge. Sick children being reported to truancy court for being out sick, even with a doctor's note. Children with digestive diseases being place on "lockdown" so they cannot leave class to use a bathroom because the teacher thinks they do so too often -- and then being sent home when they are fecally incontinent. School nurses refusing to take medication instructions from a parent, and requiring full access to the student's doctors and medical records without limit. School that insist on teaching an 8 year old child how to manage her own diabetes, regardless of whether the parent consents. Children with food allergies and intolerances being segregated rather than simply making the other kids wash their hands with soap and water and wipe off their desks after they eat.

How dare we treat sick children this way?

Every one of you reading this should be outraged. How dare we? Jennifer

Friday, January 9, 2009

Be an Advocate; Save a Life

How many of us get to say we've saved a life? Perhaps a lot of doctors, but how many of the rest of us?

I have had a great career. I have litigated and won multi-million dollar cases. I have written legislation that made a huge different in the lives of many people. I have ensured that countless patients have had access to care. And I have written books that have meant something to people.

But boy oh boy (why not girl oh girl?), the sensation you get when you know you've saved a life.

I've been working on an insurance appeal for a very young woman with a very quickly progressing neurological disease that, in the space of only a few months, took her ability to walk unassisted, to see (and she's a writer), and to speak the words she is thinking. She was deteriorating rapidly. As the appeal sat, pending, waiting for someone to pay attention, she was fading away.

Well, today we got our decision: WE WON!!!

I don't know if she could die from what she has, but I know that she quickly was becoming disabled by it. I know that the first-line treatments failed. I know that my appeal was her best hope.

I recently wrote about how I felt when I heard one of our former clients passed away. Well, today is the antidote. THIS is why I do what I do.

You lawyers out there at big firms taking home big pay checks can have all that. I'll take saving a life -- or at least, the quality of a life -- any day. Jennifer

Tuesday, January 6, 2009

The Right Kind of Change

Those of us with chronic illnesses don't get a fresh start at the New Year, or any other time. It's one long continuum. But that doesn't mean there aren't peaks and valleys, and I choose to believe that 2009 will bring us many reasons to be glad.

First, we have a new Congress and a new President. Okay, well, the Congress isn't starting out to be that new. I read in the NY Times today that Republicans are going to hassle President-Elect Obama's choice for Attorney General, Eric Holder, just so the Democrats know they aren't going to get a free ride. Indeed, it's sort of funny to watch the posturing over the stimulus package; with substantial tax cuts included, the Republicans will have a hard time opposing it. But Harry Reid feels a need to slow us down, to tell us that it will take six weeks to write it all. The incumbents on both sides of the aisle have a hard time with change.

Still, I remain hopeful. Barack Obama continues to impress and inspire me. He pulled off one of the most stunning campaign victories in the history of American politics, so I believe he can do as he says he will. Things are going to change.

And we sure do need change. Today I got a call from a woman who's about to lose her job and, thus, health insurance for both her and her husband. Both of them have pre-existing conditions, and they can't afford to pay two COBRA premiums, or a total of $1200 per month. However, the only other option that would cover their pre-existing conditions is the state high-risk pool, which -- you guessed it -- requires that they use up their COBRA! With no other alternative, America will now have two more people who are uninsured.

When people talk about health care reform, they talk about chronic disease management because chronic disease accounts for $0.75 of every health care dollar spent in the United States. Yes, we need chronic disease management. But press them on what they mean and they will say prevention! Diet and smoking cessation. That's what they think they know about chronic illness.

That ridiculous notion will not bring about the right kind of change.

You want to control the health care spending of the chronically ill? Then let us buy affordable health insurance that covers what we need, and once we find it, let us keep it, no matter what. Remember -- you can't even try to control our utilization of health care resources unless we are in the system. If you leave us to fend for ourselves, we will keep spending taxpayer dollars on emergency room visits, and the rest of you -- who don't get what it's like to live in a body that doesn't work right, that hurts 24/7, that defies reason -- can keep complaining about how much we're costing you.

No. Enough. I'm tired of being your whipping post. I didn't ask to be chronically ill. You want to blame it on obesity and smoking? Where's the science behind your assertion that my Crohn's disease could have been prevented? There is none. Prevention is largely a myth. Diet and smoking cessation won't cure multiple sclerosis or lupus or immune deficiencies.

So let's get real and talk about what the chronically ill really need: doctors who care, a community that understands that we did not choose this and that we would prevent it if we could, a society that helps bear our health care costs because IT IS THE RIGHT THING TO DO. We all pay into Social Security to share the costs of being elderly or disabled. Why is it such a radical concept to suggest that we spread the cost of treating the chronically ill over all of society so that the cost is bearable, so patients get the health care they need, so we don't have to lose our house or our livelihood because we were unfortunate enough to get sick?

Change is going to come. But will it be the right kind of change?

If you are reading this and you have a chronic illness, please go to and tell your story to the Obama administration. Please help them learn what it's like to live with a chronic illness. Maybe if we teach them, the change we get will be the right kind of change.

If you are reading this and you know someone who has a chronic illness, or you love someone who has a chronic illness, ask them what it's like and really listen. Listen to how it affects their self-image, self-esteem, their work, their social life, their finances -- everything. Listen. Maybe if you try, you can "get it," and if enough people "get it," maybe the change that's going to come will be the right kind of change for the chronically ill.

I'm not asking for a handout. I work my ass off. I pay my extraordinarily high insurance premium. I reduce my medication when I can. I see as few doctors as I can as seldom as I can; believe me, I want no more interaction with the medical establishment than I have to have. The health care dollars I spend are the health care dollars I have to spend in order to remain productive, working, contributing to society.

So let's stop talking about managing the chronically ill and focus on managing our illnesses. Let's stop talking about how much we cost and focus on how much cost we are forced to bear. Let's stop blaming sick people for spending money and focus on how we can help sick people be less sick by spending the money they need -- no more, no less.

When we talk about change, let's talk about the right kind of change. Jennifer

Monday, January 5, 2009

All Good Things

I hate to say this, but vacation is over. I had the greatest vacation ever. I read a ton of junky mysteries -- Grisham, Sue Grafton, a guy named Michael Connolly who I hadn't read before, a Robert B. Parker -- and spent a lot of time cuddling with Emily (the cat). I feel SO much better when I don't work 15 hours a day. It makes me think about disability -- until I realize that disability would mean losing my house and my health insurance, and that ends that thought.

For those of you who were sending good thoughts for Lindsey and my brother's family, my brother is home safely, where he belongs, although he says that the trip to Israel was life-altering, and I look forward to hearing about it. Lindsey, who I think I've figured out is probably 16 by now, is doing better, but is still in the hospital and will be for a long time, I suspect. But it sounds as though she will pull through, thank goodness.

As 2009 begins, I suppose I have a lot to be thankful for. But right now, I'm just bummed. All good things come to an end. And so it is with vacation.

So I'm back and will post something more substantive once my brain is really back in action. I hope you all had wonderful holidays. Happy New Year to you all. Jennifer