I was driving Gloria Steinem to or from the nursing home where we placed her former neighbor, whose dementia had gotten the better of her, so she no longer could live on her own. I was giving one of my usual rants about the horrors of the health care system, and I said "it's too hard to be sick in America." Gloria said "that would be a good title for something." So when I decided to write a book of stories of some of Advocacy for Patients' clients, I had the title before I had anything else.
Writing It's Too Hard to Be Sick In America was equal parts easy and difficult. It was easy because the stories are so dramatic and textured that they needed little, if any, embellishment. Difficult because I was reminded of how hard things can be for the chronically ill. Indeed, telling the stories of patients who no longer are with us was heartbreaking.
I always do my best, but there are plenty of times when there's nothing I can do. I can't change the fact that the Social Security backlogs are running in the years rather than months. I can't change the fact that a teacher announced in front of a class that a child had a chronic illness and could not control his bowels. I can't change the fact that people die. But I feel all of these losses. On good days, this work is absolutely miraculous in that sometimes I actually save a life. But there are many days on which I can do no more than try to ensure that people feel like they were heard and supported, even if I have no answers.
And in this economy, I increasingly have no answers. There's no pot of money out there that people can tap into if they need a diagnostic test or surgery or something. There's no fund established by Bill Gates and Oprah Winfrey to cover the cost of health care in the United States for truly compelling cases.
By the way, if anybody wealthy is reading this, I'd be happy to administer such a fund for free, just to have a way to address this unmet need.
Yesterday, I spoke to a woman who's on Medicaid in Ohio. She and her husband are both on disability, which actually puts them over the federal poverty level, so she has Medicaid only after she spends $600 out of pocket on medical expenses (or incurs bills in that amount). But she doesn't have $600. And she gets her medication for free through the pharmaceutical company patient assistance program. Her doctor visits don't equal $600, and she hasn't needed anything major lately. But that also means that she doesn't go to the doctor as often as she should, and she doesn't take all of the medications that are prescribed for her, and she and her husband take in about $2500 per month for two people to live on, with rent taking up nearly half of that. $600 per month is one-quarter of their income. It's nuts -- but I have no answer.
Anyway, I hope you will check out It's Too Hard to Be Sick In America. It's a FREE download. You may find your story in there (with the names changed, of course). And Pearl Jam's Mike McCready wrote the foreword, so you don't want to miss that. We haven't picked our best outcomes, nor did we pick our worst cases. We simply chose those that were burned into my memory, that I will never forget, for better or worse.
Next time you run into someone who doesn't "get" chronic illness, send them to read It's Too Hard to Be Sick In America. After all, that's the best reason for us to have written it -- so everybody out there will know what it's like to live with the obstacles we face every day. Jennifer
Did you get permission to tell these stories? How is this ethical behavior on your part? Isn't there a presumed confidentiality between attorney and client and HIPAA?
ReplyDeleteI haven't used names or even said what state the patient is in. There's no breach of confidentiality as long as all patient identifying information is protected, and I took great pains to do that.
ReplyDeleteIt would seem that this is a problematic thing to have published in such a public way, as health issues for patients are often not wanted to be released. Did you get the patients' permission? If you did not, you have opened yourself up for some problems. Many patients don't want their stories to be told in a public manner. Proper protocol is to have a signed agreement that indicates that it is OK to have those stories published in an open forum or at all. Do you have this? Patients can still identify themselves and may not feel comfortable.
ReplyDeleteI guess I just disagree with you that this is problematic. There is no way that anybody whose story is told in this book can be identified -- other than me, because I told my own story and acknowledged that it was me. There actually was one patient who expressly asked me to use her real name (I had asked her if she would like to choose a pseudonym), so I did. I have told stories in my previous book, Friday Tired. I was thanked for this. I have used sample insurance appeals and other letters without patient identifying information in the Know Your Rights Handbook, which has sold thousands of copies, and never gotten a single complaint. I tell stories in speeches all the time. I am very careful not only to use fictitious names, but also not to say what state the patient lives in. It's pretty common for doctors to tell stories about patients. They don't get the patient's permission to talk about them anonymously. And it's pretty common for lawyers to talk and write about previous cases without using names or other identifiers and not get permission -- it happens every day. I disagree with your view of "proper protocol."
ReplyDeleteBut don't worry, Dana. I didn't use your story.
ReplyDeleteWho is Dana?
ReplyDeleteWhy are you pinpointing someone? Who is Dana? Is this appropriate behavior for an attorney?
ReplyDeleteThe point of these stories is: "It's Too Hard to Be Sick In America." The point is not HIPAA and "who is whom"; the point is: "It's Too Hard to Be Sick In America."
ReplyDeleteRead the stories...get angry...refer your elected representatives and your physicians to the stories...tell the local press about the stories...DO SOMETHING!
While it IS too hard to be sick in America, it is problematic that an "attorney" is naming names and sharing information for which a waiver of information was not executed and kept on file. Further, while folks should be angry at the state of healthcare in the US, a problem exists when folks are being named and their stories are told without their consent. If I were the subject of one of these stories, I would be very upset that my confidentiality and trials and tribulations associated with my health care battles had been compromised. That's all I'm saying.
ReplyDeleteBut NO "FOLKS ARE BEING NAMED." You don't seem to want to hear that everybody's identity is fully protected.
ReplyDeleteAnd that's all I'm saying.
I skimmed it just now. I seem to have lost the ability to read during the last seven years since I got sick. It's interesting to read your perspective.
ReplyDeleteDon't you think it's just American to fight when it's 'unfair' rather than just folks dx'd with IBD or other chronic illness?
I feel lucky after reading what parts I did read. A lot of people have it really bad.
Debbie~
I wish you would concentrate on the main issue Anonymous. It's easy to get bogged down in side issues which are really not the point here. Jennifer has that issue covered. The major issue is that 47 million Americans do not have any health insurance coverage. Tens of millions more do not have adequate coverage. Hundreds of thousands of them are not getting adequate treatment because of it. Please write to your legislators and engage with the AMA and AARP and a host of other organizations to help bring the U.S.A into the twenty-first century in relation to health care for its citizens. We are the only industrialized democracy that does not cover its citizens and our health outcomes show that lack of care despite spending more money than any of them.
ReplyDeleteThere's one in every crowd, isn't there? Roll your eyes and move on...
ReplyDelete