1: A Case of Lupus - Mass General Hospital Perspective

I would propose that the true mafia is run by doctors or even somebody telling the doctors what to do. Only doctors are worse than the mafia because, even if you buy insurance, they may very well target you for further medical abuse in the name of science as well as monetary rewards.

Our story, that of me and my daughters, goes so much deeper than the surface.The story could go back to our youth, my daughters' youths or mine for that matter, but the most clear case of medical abuse begins where somebody decided my daughter Pam should become the next guinea pig for a new class of drugs designed to make the pharmaceutical companies richer than ever.

The diagnosis? Lupus. The drug? Rituxan. We live in Boston; I am not talking some po-dunk town whose doctor wishes to see his name splashed across the news for developing a cure for LUPUS. So far doctors from six different hospitals have been implicated in her medical abuse: Massachusetts General Hospital, Brockton Hospital, St. Elizabeth's, Morton, Newton-Wellesley and The Lahey Clinic.

Five years ago my daughter Pam was doing FANTASTIC. She was in control of her life, her weight was down, and her employees as well as management seemed to think the world of her. She had just lost fifty pounds over the course of a year and she did so by eating only healthy foods and going to a personal trainer, working out often. At a time that everything was going great, suddenly everything came crashing down on her. The first symptom she noticed was that her joints were hurting, but she simply attributed this to all of her working out. The next two symptoms occurred at about the same time: she had gone to a tanning salon and her face looked ROASTED so she attributed her burned look to the tanning salon, and then a few days later, while she was walking from the shower to her bedroom she collapsed in the kitchen floor and could not get up. It took her ten minutes to regain enough energy to crawl to her bedroom. She was fine after that but being her mother, I insisted she go to a doctor.

I went with Pam the day she went to Massachusetts General Hospital. All of the doctors there were confounded as to what was wrong with her. She had started with the Internal Medicine doctor who had referred her immediately to a dermatologist because her rash was still so bad. That doctor was clueless as to what was wrong with Pam. Almost immediately she was seeing several doctors at MGH. Within the next appointment or two, all of the doctors knew with a certainty what was wrong with Pam: Lupus. It was like one person made the diagnosis and then EVERYONE jumped on the bandwagon.

Pam's dermatologist said he was writing a book and he wanted to use her picture in it. Apparently hers was the worst case he had ever seen. Her 'rash' was so severe that it looked like chemical burns and it covered her face and her chest as well as a good portion of her back around the neckline of her clothes. When she moved and her skin crinkled, she cried out in pain. She learned to hold a small pillow to her chest as she sat up in order to keep her skin from crinkling and hurting so bad. I was not going to her appointments with her at this point. After all, she was 22 years old, but I listened to what she had to say and I followed her care vicariously.

Pam had agreed her dermatologist could take her picture, but suddenly she found herself being photographed every time she went in. We have a Mayo Clinic Medical Dictionary at home, and I can tell you with an absolute certainty, the dermatology section is NOT where you want to see your picture... especially a picture of your face! During one appointment he even had her hold her arm next to her face because there was some psoriasis (another form of rash) on her arm and he wanted that in with the picture of the butterfly rash on her face. She did not like it, but she was timid. However, I certainly was not. I decided to go with her to her next appointment with the dermatologist. When the doctor came in and I had a chance to speak with him, I asked him to show consideration towards Pam, that this was her face and what we knew based on the Mayo Clinic book and how it was not someplace you want to see your FACE posted. I asked him to remember that this (my daughter) was a young lady who had feelings. He seemed to have forgotten that she was a person with feelings. The physician's assistant hung around after the doctor left and she said I worded my case 'very eloquently'. Thankfully Pam's doctor did not take any more pictures of her after that.

There was another doctor at MGH, Dr. Ellman, who was a hematologist. He was the first one to suggest to Pam that she be treated with Rituxan. He did not say that it was in clinical trials, yet he wanted to charge her the full price for the treatment, almost $20,000. I researched Rituxan and learned that not only had it not been approved for lupus, it had not been approved for rheumatoid arthritis where it had been in testing for even longer. When Pam told Dr. Ellman this, he lied and said that it had been approved and that he had used it on a hundred cases of people with lupus. Ummm, 100 x 200,000 = $20,000,000. This was 2004 yet Rituxan failed the clinical trials as a treatment for lupus in 2009! I was not there so maybe he was playing on semantics, because the only use Rituxan had been approved for is CANCER at the time. Rituxan is a form of chemotherapy. Whatever he said, he definitely conveyed the message to Pam that Rituxan had been approved specifically for lupus and that I was wrong when I said it had not been.

Oh, by the way? Rituxan was developed by Biogen who had an office in Cambridge right across the bridge from MGH. As a matter of fact, one of their offices was in the same building that I was working in. That kind of close proximity would make it really handy for Biogen to review the details of the case subjects for Rituxan. According to the doctors, Rituxan targets the very specific B-cell that is responsible for the lupus flareups. From a pharmaceutical standpoint, Rituxan is a whole new class of drug in that it only provides relief for six to nine months.

It is the chemotherapy that keeps giving, every six to nine months for the rest of that person's life, to the tune of anywhere from $18,000 to $20,000 a pop!

I have been doing computer support for over thirteen years. If you alter the code in a program, for example, to fix a display problem, you have to test EVERYTHING in the program over again because that tiny change could affect something as different as how the program does calculations. The point is, these doctors were acting as though they could say with an absolute certainty that it would do this one thing and only this one thing. When I asked a later doctor if he could guarantee that it would not affect anything else, he said 'no'. Hmmm, interesting. Not that it was a surprise to me. At any rate, I convinced Pam to forego the Rituxan at the time and she muddled through with a couple of lupus flareups.

NEXT POST