Pam ended up in the hospital for one of her flareups but this time it was closer to me, the Brockton Hospital. There I met a doctor that seemed very intelligent and explained things in a way that made sense, a rheumatologist by the name of Dr. Raphael Kieval. I convinced Pam to change her primary care physician to be Dr. Kieval and to leave MGH. Well, during her first two appointments with Dr. Kieval in his office, he coincidentally received phone calls and had to leave us to take them. It's funny how often doctors get phone calls or pages in my presence. Suddenly this doctor who had seemed so honest and forthright and had never failed to shake my hand when I saw him in the hospital did not want to shake my hand as we left. For whatever reason, Dr. Kieval was never the same doctor I met for those first visits in the hospital. This really disappointed me. I thought I had finally found someone we could trust.

Pam stayed on lots of meds through a couple more flareups. Every single time her lupus flared up, something was going on that was making her vomit where she was not keeping her meds down. Every single time. Yet every time she has a flareup, I had to remind Dr. Kieval of this fact. You would think he would have realized that at some point. It is an important fact. Other than that, her lupus was under control. After a while Dr. Kieval started pushing for... guess what? Rituxan. He said New England Medical Center was conducting a clinical trial for Rituxan on lupus patients and that she would qualify. Suddenly this treatment that MGH wanted to charge her $20,000 for was being made available for free as part of a clinical trial. (Wait! Didn't Dr. Ellman say it had already been approved by the FDA three years before?) Regardless of the monetary cost of Rituxan, this is my daughter and I am more concerned with the potential health consequences of being treated with Rituxan. Dr. Kieval was the same person who could not guarantee that the Rituxan would not affect any other aspect of Pam's health. When I mentioned how a drug used to treat women with morning sickness in the 60's actually caused birth defects, raphael told me how Thalidomide (that same drug) is one of the drugs sometimes used to treat lupus. See Thalidomide: An Old Drug with New Tricks.

As if that was not scary enough, I had already personally seen how side effects could irreparably change a person's life forever. My cousin had chemotherapy for breast cancer. You gotta remember, chemotherapy is not just one specific drug. It could be any one of many. Before they treated her with her cocktail, the doctor told her she could have some numbness or tingling in her legs as a result of the chemotherapy. Okkkaayyyyy. Well, he did not warn her that she could develop severe enough nerve damage that years later she still wakes up crying from the pain in her legs as a result of the chemotherapy! And this is something she is going to have to live with for the rest of her life??!! She will readily tell you that she wishes they had warned her of the possible severity of the side effects.

So back to Pam's story...

Nobody could guarantee that there would not be worse side effects from the Rituxan. The only thing we knew for certain is that this had the potential to make the pharmaceutical companies richer than their wildest dreams! As I said, the treatment they proposed is only good for six to nine months, one of those things they tell you in the equivalent of tiny print... hardly mentioned and quickly glossed over. Raphael gave Pam the name of the doctor who was in charge of the clinical trial for Rituxan at New England Medical Center, Dr. Elena M. Massarotti, but when Pam failed to contact her, apparently Dr. Kieval gave her Pam's phone number because Pam received an unsolicited call from Dr. Massarotti. Isn't it WRONG for Dr. Kieval to give out Pam's cell phone number to someone that Pam never even agreed he give it to? I do not even give out phone numbers for my employees to other people... and I would categorize that as so much worse as well as being extremely pushy.

Pam eventually met with Dr. Massarotti but did not qualify for the clinical trial because she was doing so well. Dr. Massarotti actually suggested reducing Pam's steroids to see if she could then qualify. Ummm, you want to REDUCE her meds so that it brings on a flareup and then she qualifies to be part of the clinical trial? Isn't that unethical to even suggest? Just where do these people draw the line anyway?

A year after Pam was diagnosed with lupus, during one of my visits with Pam to see Dr. Kieval (Raphael), I asked him about the possibility of my other daughter Sara having lupus. While we were talking, he commented on the red rash across my cheeks, very reminiscent of Pam's rash only lighter, so he had a blood test done on me to see if I had the ANA antibodies which would indicate the possibility that I had lupus as well. The test came back negative. However, I had the same butterfly rash, only they call mine rosacea, and I have problems with my joints as well. Sara had the antibody test not long after I did, and she was diagnosed with having lupus. Sara's diagnosis came within year of Pam's diagnosis. Hers was more like the arthritis variation in that it affected her joints and she has never had the butterfly rash.

Oddly enough, none of the three of us have the typical things that would predispose one to develop lupus... well, not presumably. However, lupus can be be drug-induced. I even read of one case where a woman developed Lupus after receiving Rituxan for something else. At any rate, the literature indicates that lupus can be caused by exposure to certain drugs, including sulfa and penicillin antibiotics, as well as exposure to certain other diseases and infections. Only 10% have a family member with lupus.

But wait! Do we not have a government, led by people with a significant interest in the pharmaceutical industry, that has enacted laws under the Patriot Act which make it legal to enter your home without your knowledge? And what about the other minor detail where apparently our government's ethical board has determined that it is acceptable to use our own people for medical experimentation during times of war without their consent or even knowledge?

The fact that we are all potential guinea pigs during times of war became clear to me while reading "Undue Risk: Secret State Experiments on Humans" by Jonathan D. Moreno. He was a senior researcher under Clinton's special commission to study claims that secret plutonium experiments were conducted on American citizens without their knowledge. Many records beyond those pertaining to plutonium experiments were made available to him during the course of his research. Moreno's book details what he learned on a wide array of medical experimentation cases and is scary indeed. How these doctors got around the fact that they were violating the Helsinki Accord was not so clear. But one of teh poiunts he made was that our government has decided it is acceptable to perform experiments on American citizens without their knowledge during times of war, because they consider it a matter of national security. When are we NOT involved in some stupid war?

All I know is that Pam, Sara nor I have the factors which would predispose one to lupus, yet Pam and Sara have been diagnosed with lupus and I totally believe I have whatever they have, just not as severely. A rose by any other name... If you think what I have said so far sounds unrealistic, first off, it can all be researched. What if someone had chemically induced lupus intentionally for all three of us? Someone certainly wanted to use Pam as part of the Clinical Trials for Rituxan and they have the pictures from the dermatologist at MGH if they want to show the before and after pictures. Some members of our government DO believe it is acceptable that people be used for medical experiments without telling us. It IS legal for our government representatives to enter a home without permission or without telling us they were here. These same governmental agencies, especially the CIA, have admitted that they have entered homes without ever obtaining search warrants and they refuse to say exactly where they have been or for what purpose. If it was all legitimate, why do they not want to tell the other judicial branches what they did and why they did it after the fact at the very least?

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