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Egret Publishing Inc. August
2002
In a submission to the Romanow Commission (http://www.cpso.on.ca/Whats_New/romanow%20commission.htm), Dr. Bienenstock, President of College of Physicians and Surgeons of Ontario, mentioned a new social contract to empower patients to be active participants and decision makers, with trade-offs required, because of the limited powers of medicine. I am, as a patient, willing to accept my share of the collective responsibilities. I need OHIP to provide the doctors with the necessary expertises. There may be problems regarding demarcations among doctors (the infectious disease specialist, I saw, said I did not have peripheral nerve damage and told me not to see him again). I wrote to Dr. Bienenstock again on August 8, 2002.
Ching-Chee Chan, PhD
August 17, 2002
Here below is a copy of the letter.
bienenstock20808
August 8, 2002
Dr.
Dody Bienenstock
President
The
College of physicians & Surgeons of Ontario
80
College Street, Toronto ON
M5G
2E2
Dear
Dr. Bienenstock,
I
hope that you have received my letter of May 31, 2002, copies of two booklets
and other publications.
Recently
I have found some papers, indicating that most paucibacillary cases, such as
tuberculoid type of Hansen’s disease were diagnosed by means of clinical and
histopathologic methods. Most of these patients tested negative for Hansen’s
bacterium by means of PCR methods (see publications enclosed herewith). Before
the advent of PCR methods, detection of Hansen’s bacterium in paucibacillary
patients was almost impossible. The link with Hansen’s bacterium must have been
established by some indirect methods. If ALS is caused by overreaction of the
immune system due to the antigens of Hansen’s bacterium, detection of Hansen’s
bacterium in ALS patients may be very difficult at the present stage of
development of detection techniques. The link with Hansen’s bacterium could be
done by correlation of symptoms of ALS and Hansen’s disease, and results of
treatments with antibiotics (see also publications enclosed herewith).
I
agree with you on empowering patients to be active participants and decision
makers, and the trade-offs required (your Submission to the Romanow
Commission). Innovation is the best way to improve the quality of health care,
turning the incurable into curable. There are many problems without answers.
Solving problems by stepping into the unknown involves risks, which can be
minimized by careful monitoring.
I
need a specialist capable of and willing to carry out the treatment and counter
the various reactions, such as ENL, Reversal Reaction and Lucio Reaction. My
health problem started in 1999. I feel time is running out. I hope you can help
me. Please reply soon.
If
this is not within your purview, in whose purview does it fall?
Sincerely
yours
Ching-Chee
Chan, PhD
Someone in the College of physicians and Surgeons of
Ontario replied my letter on behalf of Dr. Bienenstock, stating that the
College does not recommend specialists. This means I have to find one who is
willing and able to carry out the task.
Doctors have all the power. Now they admit they do
not know what to do sometimes and will share power with patients. I have ideas
and it is my life at stake but I need doctors’ expertises and practical
experiences. I cannot go abroad for treatment because it will bankrupt me.
All I have now is the new social contract, which is
not a sure thing at the moment. Does it outweigh demarcations among doctors? If
it does not it is back to square one: infectious disease specialists will still
be worrying about possible conflicts with neurologists. Can participation of a
neurologist in my treatment or as a consultant resolve the conflict?
It might be too late to send any submission to the
Romanow Commission but I sent one anyway.
Ching-Chee Chan, PhD
September 7, 2002
Here below is a copy of the submission.
September 4, 2002
Commission
on the Future of Health Care
P.O.
Box 160, Station Main, Saskatoon
SK
Canada S7K 3K4
Sir/Madam,
Increase
in funding may not be necessary.
The
bulk of the cost of health-care is due to the chronic incurable debilitating
diseases, such as Alzheimer’s disease, Parkinson’s disease, ALS/MND, asthma,
arthritis, osteoporosis, muscle pain, Crohn’s disease, diabetes, lymphoma,
cancer (skin, breast and testicular) . . . etc. These diseases may be caused by
Hansen’s bacterium, which can be treated with antibiotics. For theoretical arguments,
please see my publications enclosed herewith.
There
is a problem of detection. The bacterium cannot be detected by methods
(including PCR) available now, if it is present in small number. For detail,
please see publications.
I
am suffering from a disease with symptoms similar to those of ALS/MND but I was
tested negative for Hansen’s bacterium by means of a PCR method. If I am
treated with appropriate antibiotics and get well, it will prove my point. I am
unable to get the required treatment because I was tested negative for Hansen’s
bacterium. I begged the Provincial and the Federal Ministers of Health for help
but none of them replied. I am stuck in this bureaucratic jungle.
Ching-Chee
Chan, PhD
Section
Three: a Breakthrough?
My family
doctor knew my view very well. Anyway I presented him a copy of the paper,
describing a PCR method in actual practice. This paper indicated most
tuberculoid cases of Hansen’s disease tested negative for Hansen’s bacterium by
means of the PCR method. The patients were diagnosed by histopathologic or
clinical method. job If ALS or other diseases were caused by
Hansen’s bacterium present in small number and could not be detected by methods
available now, the only way was to treat the patients with appropriate
antibiotics and observe the results. He commented that was empirical. I
concurred. Most paucibacillary cases of Hansen’s disease were diagnosed based
on evidences gained by empirical methods. Invoking the new social contract,
empowering the patients as full participants and decision makers with required
trade-offs, I accepted my share of the collected responsibilities. He said yes
and would try to find a Hansen’s disease specialist able and willing to carry
the treatment required. It might be necessary to go south of the border because
there were very few of this kind of specialists in Canada.
I
could not believe my ears. During the past two years, I had so many setbacks
and almost gave up. Now it is possible.
I hope I do not have to leave town for treatment. If I have to, I may have problems posting my progress on the Internet. Here are my apologies to the readers for any interruption.
Ching-Chee
Chan, PhD
September
21, 2002
job. Job CK, Jayakumar J, Williams DL and Gillis TP. Role of polymerase chain reaction in the diagnosis of early leprosy. Int J Lepr 1997; 65(4): 461-464.
san.
Sane SB and Mehta JM. Malignant transformation in trophic ulcers in leprosy: a
study of 12 cases. Ind J Lepr 1988; 60(1): 93-99.
Readers
are welcome to e-mail me to discuss
relevant problems.
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