We Have To Change the World

The following is from the June 2011 Advocacy for Patients newsletter. I've been getting really great feedback, so I thought you might want to read it. I hope you will.

Those of you who follow my blog and our Facebook page already know that the past month has been tough for me. Actually, several months. We lost an insurance appeal that really was about life and death, and the reasoning was so perverse and so wrong -- it was devastating and made me wonder why I'm working this hard when the people who make decisions (or at least some of them) sometimes don't even read what we send them, and often just don't care. At all. The patient in that case is a lovely young woman who deserves the chance to have a decent life, and a couple of bureaucrats who seem pretty heartless are in the way. And they win, because they can. It's just so wrong.

Add to that the increasing number of calls and emails we're getting from people who've lost jobs and houses and insurance and are desperately ill. And due to budget cuts on both the state and federal levels, there are fewer resources for people in need. Again, it's just so wrong.

And then the World Health Organization released a report stating that chronic illness is now the leading cause of death both in the US and the world. This important information was published in the LA Times, and then two days later, in the Washington Post, but it was never even carried in the rest of the mainstream media. We are suffering -- and we are invisible.

The thirteen year old boy whose school referred him to truancy court rather than providing him with accommodations for his ulcerative colitis. The thirty year old woman who's had two strokes and is having trouble navigating the Medicaid system, but we can't find anybody in her state to help her. The man with dystonia who lost his health insurance and will become totally disabled -- at taxpayers' expense -- if he can't get care.

This is the world of the chronically ill. It has to change.

My desperation to do something -- anything -- to find help for people who are broke and sick has led me to drastic thinking. I considered going on a well-publicized hunger strike for 30 days to illustrate the desperation that is felt by people with chronic illnesses who cannot access health care due to cost or unreasonable insurers or whatever other unfairness they are facing, but I realized that I'm too sick to play that kind of game with my health.

But I am desperate, and you should be, too. All of us are one job, one illness, one setback away from being the people who call here for help. The 30 year old man with chronic inflammatory demyelinating polyneuropathy who earns $200 per week, can't afford health insurance, can't afford medical care -- and will become totally disabled without that care. The 50 year old divorcee who lives in public housing that stinks, alone, without money or a car or friends or even a reliable telephone.

Indeed, if Advocacy for Patients failed -- which not only could happen, but will happen over the next couple of years if we don't discover reliable ways to fund our necessary growth -- I would have no health insurance and no job. With my pre-existing conditions, I would have one and only one insurance option, at least in Connecticut. And it's not a good option, either. I would either stop taking some of the medication that's keeping things in check, which means I would get sicker, or I would spend all of my savings on pharmaceuticals. Eventually, I would lose my house and everything I have worked for so hard. It can happen to any of us. Indeed, it does.

I talk to people who are totally isolated. Because they often don't look sick, family and friends don't "get it" and they abandon them, leaving them alone, depressed, hopeless. They are in pain; some in so much pain that they cannot get out of bed or our of their homes. The uninsured 50 year old man in a rural area living out of a motel, bleeding from his rectum, who is sent away from the ER with pain meds and only pain meds, without a diagnosis or treatment for what's making him bleed. The west coast woman whose pain management doctor simply up and left the state, leaving her not only without a doctor, but without medical records or any proof of her treatment regimen, who can't get medication because doctors think she's drug-seeking. The mom who had to leave her son behind and go to detox and then rehab after her doctor abruptly cut her off from pain meds for no reason whatsoever.

I can't stand the thought of what people have to go through when the only thing they did wrong was get sick. The thought of these folks who are alone, ashamed of being broke, who can't get medical care, can't work because they are sick, can't get disability because they don't have medical records because they couldn't afford to go to a doctor. I just can't stand it. As I write this, tears come because this is so incredibly painful.

This is not the kind of world I want to live in. We owe it to each other -- to every human being -- to care. If you aren't as upset as I am, you should be. I could be talking about you. You think that couldn't happen? Well, unless you're very wealthy (in which case I'd love to talk to you about a wonderful organization that could use your support), it could be you, and it could happen fast. Most of the people I talk to worked all their lives. They had insurance. They had friends and family. They had spouses. And then they got sick -- really sick -- and slowly but surely, they lost everything. Everything, including the spouse and friends and family, who get tired of sitting around, or of hearing the complaints, or who just don't get how hard it is to sit up in a chair when you're so tired you could cry and so in pain that you can't stand being awake.

I have this image in my head of people living in shadows, people with invisible illnesses who themselves become invisible as they fade out of the workplace and their social lives, slowly becoming hermits who never intended to be alone, afraid of losing what little piece of a real life they have left. And then they get the foreclosure notice or eviction notice, and they have nothing. Except a disease that they can't afford to treat. They do live in shadows. They are terrified. They are ashamed. And they are alone. And I know that I am one loss away from being them.

So what can we do? Well, first of all, the more we talk about our own invisible illnesses, the more we make invisible illness okay to talk about. We help people step out of the shadows to a place where they can feel free to tell their story, ask for help, maybe start over again. If we tell our stories, we make it okay for others to do the same.

I'm collecting stories, some of which I plan to include in what I hope will be another book. If you have a story you're willing to share with me, write me, call me, email me and we'll gladly add your story to the mix for possible publication (without names, of course). We also get lots of press calls looking for patients who are willing to talk about their experience with insurance and other aspects of living with chronic illness. Are you willing to go public? Let me know if you are and we'll note that on our database. You can be part of the Advocacy for Patients speakers bureau.

Second, contact your state and federal legislators and tell them the toll chronic illness has taken on your life, your child's life, your spouse's life, your friend's life. The more we educate the people who make policy, the better policy they will make. To find your state legislators, search for "[name of state] legislature" and then find yours by inputting your address. To find your federal Senator, go here. To find your federal Representative, go here.

Third, talk to your doctor about ways he or she might help by setting up a free clinic day once every three months, or agreeing to do a colonoscopy for free once a month. If he or she is willing, let me know. I will compile a referral list and I will refer patients to the right doctors.

But most of all, when you're walking around and you see people huddled in doorways, or when you're in the emergency room and you see people being sent away, speak up. Help. Even if all you can do is be supportive and sympathetic, it will make a huge difference to them. I get lots of calls and emails from people I can't help a whole lot. But taking the time to talk with them, having a heart -- it makes a huge difference. If they need free medication, send them to www.needymeds.org for instructions on how to apply. If they need a free or low cost clinic, send them here to input their address to find the clinics near them (or do it for them if they don't have a computer). If they need a small one-time cash grant, send them to our friends at Modest Needs, who may be able to help. And if you don't know the answer but they sound like they really need help, tell them how to reach us at Advocacy for Patients.

And always, always keep in mind that he or she could be you. It's more a question of luck than anything else. So be thankful that you have a job and a home and insurance and a family and friends. Never take them for granted. Those of us who are not alone in the world are very, very lucky. We owe it to ourselves to give something -- even if just some time, some conversation -- to those who are less fortunate.

Three thousand people get this newsletter. If each one of you reaches out to one person, that's a new day, new hope, to 3000 people with chronic illness. Tell me we can't change the world. Really? Because I say we can, we must -- and we will. Jennifer