Friday, April 29, 2011

The Hunger Strike That Wasn't

I have had a very serious conversation with my doctor about whether I can fast for 30 days. He's strongly advised me against it. He feels that what I read, which makes it sound pretty safe if you fast for only 30 days and you drink water and take salt really applies to healthy people. He's concerned about even taking all of my medicine without any food in my stomach and the harm that might cause. Of course, this is why he's a doctor and I'm not.

I want you to understand where my desperation comes from, though, because it's important. A few months ago, I lost an insurance appeal for a 20 year old girl with complex regional pain syndrome. She's been all over the world for treatments -- German, Austria, Mexico -- and tried everything, including some pretty crazy things. She finally found a doctor in Philadelphia who tried IVIg and it worked. This young girl all of a sudden had a life. She could go to college. She could do crafts. She could have something of a life. But her insurance company wouldn't pay for IVIg for CRPS. We did an external appeal to a 3 doctor panel. This was the most monumental insurance appeal I've ever filed. There were over 1000 pages of medical records and lots and lots of medical research, and a 23 page appeal letter. One of the three doctors said of course, since she's tried everything else, and since we know this works, she should get the IVIg. But the other two said there was insufficient evidence to show that IVIg was better than the standard options. I swear, that's what they said. There were 1000 pages of evidence that IVIg worked and nothing else did. There are no standard options, and whatever options there are were tried. Losing that appeal devastated me. If I can't win that case for that young girl, what am I really doing?

Fast forward to this week. We got an email from a man with chronic inflammatory demyelinating polyneuropathy. He works and earns $200 per week -- too much for Medicaid. He has no health insurance. He's in terrible pain, and at times, he can't speak. He needs medical care. We spent a day and a half making phone calls and finally found a clinic that would get him in quickly, although it's an insufficient solution since he can't get to a specialist and he can't get the drug he needs, for which there is no patient assistance program. He lives in the shadows, and we're the first people who've even tried to help him. And our help is far less than he deserves.

When the World Health Organization came out with its statement yesterday that chronic illness is now the leading cause of death in the world and most major papers -- NY Times, Wall St. Journal, USA Today -- didn't even cover it, I went into a sort of panic mode. These people are desperate. They need medical care. Yet, budgets are being cut, and the safety net is eroding quickly. Everything bad that happens in the health care world is blamed on health reform, which everybody knows is only a first step, and since it's not even fully implemented yet, it's wrong to give up on it and declare it a failure because health care costs continue to rise. Yes, we need to do more. But we need people to get covered now, as quickly as possible. Health reform implementation is 2.5 years away, but we have to hang onto it because, with Medicaid expansion and subsidies, the man with CIDP will have coverage. It's still a long way off, but I understand that implementation of any major change would take time, and so we have to hang in. But I'm so scared that our society -- fueled by a bunch of radicals on the right who have no concern for facts -- will give up on it before it even takes full effect.

And then there's health reform implementation and the gains the insurance industry is making as they pressure the feds to do less than is needed. I'm particularly involved in the appeals regulations. It's killing me -- it's causing physical pain -- to listen to the Department of Labor say that self-funded plans don't want to have to do external appeals, and to actually buy into some of their ridiculously petty concerns.

And even when health reform is fully implemented, I will still lose insurance appeals that never should be lost. Whatever was in the minds of those two doctors when they said there was no evidence that IVIg was better than standard therapies is just perverse -- but it's also pervasive.

People are quietly dying. They have invisible illnesses, so they face disbelief and a lack of support and understanding. They are addicted to pain meds, and then the feds crack down on prescribing pain meds, and doctors just abandon them. Family and friends abandon them. Heck -- I don't have any social life because just leaving the house is so difficult for me, and since so few people get it, people don't come to see me -- they want me to meet them for dinner, which is something I just can't do. But they don't believe me. They don't get it.

This is a heck of a life and there are millions of us suffering like this. I see it. I feel it intensely. And I don't know how to change it. I don't know what it's going to take. Must we have sick people dying alone in sparse apartments where they've been warehoused without care or attention? Must we just let that happen, as it does every day, invisibly? How do we make the invisible visible? How do I get people to care?

If I figure out an answer, I will let you know. Until I do, I am in agony over the treatment of sick people, some of whom get less attention and caring than our family pets. If you have ideas, please tell me. Maybe, if enough of us came together, we could make a difference.

Can all of you please help me to make some noise, to tell this story, to make the invisible visible? Can you tell me how I can do more, do better?

We are collectively very powerful. Together, we can lift people up out of the darkness and demand that, if nothing else, Americans see the consequences of the choices they have made to ignore people with invisible chronic illnesses. Please, please help me. Jennifer


  1. My heart aches Jennifer. For you, for them, for us. xox

  2. I don't think people get it until it hits home--either to themselves or to a close friend or relative. There are--what?--50M Americans without health insurance, and still we have the highest per capita health care costs and rank 40th or 50th in outcomes such as infant mortality and life expectancy. As the economy deteriorates and more people lose their insurance or get kicked off their existing insurance policy, it will affect more and more people. But by then we'll be broke and only the wealthy 1% or 10% will be able to afford any kind of care.

  3. Great thoughts, and I too feel the pain for the chronically ill. - SAS

  4. My husband has Crohns Disease as well as a few other chronic illnesses. On Tuesday night he was in such a flare that he could not make it to the toilet. It is heart breaking to see him so sick.
    It took us over a year and 4 Dr.s to get him approved for his double dose of Cimzia. They finally approved it in February. His health insurance company is now giving him the run around for his next prescription.
    He has been on every other available medication and at this time there is nothing left.
    The insurance companies (health and disability) make us feel as if we are hostages to their constant antics.
    These illnesses are real. What is wrong with our society that we do not take care of the ill?

  5. The thing is - our brightest and best Advocate was about to embark on a HUNGER STRIKE to do something HUGE to get some awareness. We are preaching to the choir with each other. Jennifer cannot take a radical stance like a hunger strike or it will kill her faster than her illnesses will. IDEAS for LARGE NEON GONZO ON ALL NEWS RADAR is what she needs our help with. Money to sustain her organization more than she herself can continue to do. She is fried on fund-raising and running a business, while giving LOVE, mad skills and energy to a case load that would keep a 10 person law partnership busy. She is running on FUMES, folks. IDEAS to MAKE BOLD BIG PR STATEMENTS TO HIGHLIGHT THE PLIGHT OF THE CHRONIC PATIENTS required NOW! We are sick, but we are smart and from all walks of life. Generate ideas we can build a buzz upon so Jennifer does not have to resort to a Hunger Strike. Or ... someone healthy can surrogate her idea and live to tell our stories. A Mike Moore type documentary of the Chronically Ill Battle for Health Care that makes it into all the theaters would be really cool.