Friday, March 27, 2009


I sure am glad it's Friday. I'm exhausted. It's been a busy week -- no busier than the norm, really, but busy.

I have c-difficile, a bacterial infection in my intestines. It really sucks. I had a root canal that abscessed, so they gave me massive antibiotics which, in turn, caused c-diff. So now I'm on more antibiotics to treat the c-diff. They're making me tired and even more nauseated -- no fun.

So excuse me for being scarce. I have no deep words of wisdom today. I'm just really glad it's Friday. Jennifer

Tuesday, March 24, 2009

Working for Free

It never occurred to me to charge patients who need my help. If I had a sliding scale fee, I would have to collect financial information and go through a whole process that would just add to my work. And the truth is that most of the people who come to me can't afford to pay me; most of them are in crisis.

But there's a consequence of working for free. The patient doesn't invest in you, and throws you over the side of the boat on a whim.

I had one client for whom I did a tremendous amount of research, found a litigation attorney when the other side wouldn't budge -- and the client then accused me of not doing anything for him after he decided he didn't want to litigate!

I had a client for whom I wrote a first level appeal, and while I was working on the second level appeal, she went shopping for another attorney -- whom she paid -- and never even told me, so all that work was for nothing.

And most recently, there's the client who doesn't believe I'm really working for free. She has a very messy and complex health insurance coverage issue that I've been working hard on. If we lose, she's on the hook for literally hundreds of thousands of dollars. She's convinced that the only reason I'm helping her is because I am being paid by the doctor's office to make sure they get their money from her insurance company. Never in my life have I done a collection matter for a doctor, and I never would.

My sense is that, while there are some people who are incredibly grateful for what I do, there also are people who take it for granted because it's free. Somehow, the fact that it's free makes it less valuable to them. And while some people make a charitable donation after I conclude my work with them, others just walk away. Recently, I won an insurance appeal for a surgery that costs about $50,000. The patient got a letter saying we won and scheduled the surgery and everything -- he just didn't bother telling me that we won, nor did he thank me. A charitable contribution was the furthest thing from his mind.

I guess when you work for free, you have to really mean it -- no strings attached -- and not expect anything in return, whether it be a thank-you or a donation or just a sense of appreciation. If you expect even a thank-you, it's not really free, is it?

On the other hand, a thank-you would be nice. Jennifer

P.S. -- And then I read the comment to my previous post. And now I remember why I do this.

Wednesday, March 18, 2009

Hemophilia and Me

I was very fortunate to be invited to be the keynote speaker at last week-end's Hemophilia Federation of America annual symposium in Indianapolis. I gave my favorite speech -- why chronic illness is a civil rights issue. I've given different versions of this speech before, but never has it been received with such enthusiasm. I was interrupted several times with applause, and a whole line of people wanted to speak with me afterwards. It was very gratifying.

But what's most important is that there are patients out there who want to hear this message, who want to be more activist, who support the ideas of universal health care and redefining the notion of "disability" so it's clear that invisible chronic illnesses "count" under the law. It truly was exciting.

Before I went to the symposium, I did a lot of reading about hemophilia. I had no idea that there were so many kinds of bleeding disorders, that they affect mostly men (although women are carriers of the gene), and that HALF of the hemophiliacs in America were infected with HIV in the 1980s because the blood supply was tainted. Many have hepatitis C, as well.

In addition, factor that is needed to stop hemophiliacs from bleeding out costs about $250,000 per year. Imagine having an insurance policy that has a $1 million lifetime cap when your health care costs $250,000 per year! What do people do? Change jobs every four years so they can get new insurance? Here's yet another really good reason why we need universal health care that would not have a lifetime cap.

I'm not sure why the patients at the HFA symposium were so exceptionally interested in righting the wrongs that are built into our current system. When I speak to other patient groups -- for example, patients with Crohn's disease and ulcerative colitis -- I don't get the same sort of enthusiasm for changing the world. Perhaps one reason is that hemophiliacs know what their disease comes from and how to treat it, and paying for it is their major concern, whereas Crohn's and colitis patients want a cure and are less concerned with civil rights? I honestly don't know. All I can say is that it was an awful lot of fun to speak from the heart to a group of patients who was so hungry for this message.

I suppose the challenge, then, is to get other patients more enthused, as well. We need to fix our broken health care system. We can't have people skipping their medications because of irrational limitations and funding restrictions. Patients who don't get treated just get sicker, ending up in emergency rooms that cost the taxpayers way more money than it would cost to provide these patients with the treatment they need in the first place. The road-blocks to care have to be cleared out of the way.

For example, I am working with a patient who is on Medicaid in New York. She just found out the hard way that she's limited to 40 dispensings a year from her pharmacy. There are similar limits on labs and doctor visits. These arbitrary limits can be waived, but the doctor has to fill out a form that is not available to anybody other than doctors, and only to doctors if they call and ask for a blank form, which can only be mailed, not faxed. Then the doctor fills out the form and has to mail it back -- again, the State won't accept a fax. And then it takes 3-4 weeks before the request for an exception is acted upon. So all in all, it can take at least a month before the arbitrary limit on services is waived -- and that process has to be done for pharmacy, doctor visits, labs -- every segment of the health care provider community. In the meantime, we have had to beg with the pharmacy to go through the steps for getting an override. Why on earth do these limits exist, especially when the limits are set without any concern for the patient's needs? This particular patient sees 8 doctors and has at least four chronic illnesses. Of course, she will fill more than 40 prescriptions in a year!

These sorts of hurdles are oppressive, and when we saddle people who are too sick to navigate such complexities with these sorts of obstacles, they tend to recoil and give up. We can't let that happen.

Instead of getting depressed, we have to get patients angry. Perhaps that's the answer -- hemophiliacs deal with so many insurmountable obstacles that they are angry; patients with Crohn's and ulcerative colitis have obstacles sort of sneak up on them as they lose a job or a child ages out of her parent's health insurance or their doctor prescribes a medication their insurance won't cover. The calls I get from Crohn's and colitis patients are riddled with fear and anxiety, but not yet anger. As insurers have cut back on coverage, as the price of insurance has sky-rocketed, Crohn's and colitis patients are just starting to get how all of this affects them. Indeed, the median income of hemophiliacs is far lower than that of patients with Crohn's and colitis. So it may just be that Crohn's and colitis patients haven't been as deeply affected as hemophiliacs -- yet.

But the time is coming, surely, when everybody with a chronic illness sees how the current system is failing them. A very smart person once told me that depression is anger turned inwards. So maybe the key for those of us who want to mobilize the patient community is to find ways to turn that anger outwards, where it can do some good. I do speak with many patients every day who are so depressed. Maybe I have to work harder to convert their depression to anger, which then will mobilize them to do whatever they can to work to change the system.

I surely don't have all of the answers, but with more patients like the ones I met this past week-end, I'm convinced that we can and will force the system to change. I just hope we do it soon. Jennifer

Wednesday, March 11, 2009


Yesterday, my dad got a pacemaker. Theoretically, it's no big deal, but everything's potentially a big deal when you think about infections and all that. Anyway, it was interesting because I was in the caregiver role for once. I'm not sure I like it at all, although I think I'm better at it because I'm such a pro at being a patient.

We got to the hospital at about 6:30 am. They moved us very quickly because my dad was the first case of the day. He changed into a hospital gown, and we secured his belongings and left them for the day -- he brought a month's worth of clothes and books in a suitcase and it was too much for me to carry around all day, so we left it with the day surgery folks to be delivered to his room later.

The surgery went really well. The doctor came and spoke to me when it was over. It was very fast -- faster than they had told me it would be.

Then I was herded into a new family lounge where a nice guy named Pedro was taking care of all the family members of patients who were having surgery yesterday. I saw my GI surgeon twice, as he came to talk to families, and even my mom's old shrink (a whole other story).

Anyway, Pedro was great about keeping everybody up to date -- when the surgery was over, when the patient was in recovery, when the room became ready, when the patient was moved into the room -- the whole deal. Because my dad's room wasn't ready right away, Pedro took me up to the recovery room to visit with him for an hour. My dad was doing really well -- no pain, no problems. After an hour, I had to go back to the lounge and wait until the room was ready.

Once the room was ready, I went there and waited for my dad. He somehow got lucky and ended up in a private room, which is really nice. They did all kinds of testing to make sure the pacemaker was in place, where it belonged, and functioning well.

It was about 2 pm when my dad started wanting things that were in his suitcase. So rather than wait until they brought it to him, I went back down to the day surgery floor and carried it all up to my dad's room and got him organized. They took him off the IV so he could get out of bed and to the bathroom without a tether. He isn't allowed to use his left hand, but he kept forgetting, so I convinced him to use the sling they gave him -- I know that's the only way I would remember not to use one of my arms.

Anyway, I made sure he had everything he needed or wanted. His friend came at about 3 pm and I came back here to get some work done. I'm about to go now and help get him ready to come home. I will get him settled at home, make sure there's food in the house and everything, and that will be that.

Were I not a patient, I don't know that I'd have been proactive about going and finding his suitcase rather than waiting until who knows when for it to be delivered. And I helped him ask questions and make sure he felt he understood what life with a pacemaker will be like. My brother the doctor visited last night -- he's really in charge of the medical end of things, whereas my role is caregiver.

For better or worse, I'll be traveling the next few days, so I won't be around to check on him daily and bring him food, but he has a lot of friends who will, so I'm not worried.

It was a strange feeling, though, being the one to wait, not knowing what's happening or when, wondering what my dad's needs will be. And it was interesting -- being on the cardiac floor is very different from a GI floor or general surgery in that cardiac patients aren't walking laps around the hallways like patients in general surgery are told to do.

As much as I hate being sick, I honestly think I'd rather be the patient than the caregiver. Caregivers have even less control of things -- and being a control freak, that's what ends up mattering most to me. But this experience also helped me to understand better what it's like to be a caregiver. It's definitely no fun, but it makes all the difference in the world to the patient. You caregivers out there should know how important you are. Jennifer

Thursday, March 5, 2009

Happy Birthday to US!

Today marks the fourth anniversary of the day I started Advocacy for Patients with Chronic Illness. In that time, we have worked with over 3000 patients, providing them with free information, advice, and advocacy services -- and, when we could not help, we listened and provided support. In addition, we have published 3 editions of our Know Your Rights handbook, updating it each time. We have testified on many pieces of state and federal legislation affecting the chronically ill, and have commented on proposed federal regulations. All day, every day, we trumpet the cause of the chronically ill.

Half of all Americans have a chronic health condition. Imagine what we could do if we all banded together. We might be the largest voting block in the United States. We could have universal health care. We could eliminate pre-existing condition exclusions. We could stop the armed services from excluding people with chronic illnesses from serving their country. We could provide incentives to encourage employers to hire the chronically ill and let them work from home. There is no end to what we could do if we did it together.

So say happy birthday to Advocacy for Patients -- and join us in the fight to protect and promote the rights of the chronically ill. Jennifer