Continues from part 7

My Personal Problems: Part 8

All rights Reserved

Egret Publishing Inc. August 2002

 

Section One: Dr. Bienenstock’s Submission

 

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

 

 

 

Section Two: the New Social Contract

 

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.

 

Section Four: the System

 

I hope for the best and prepare for the worst, considering my experience of the system, which used to function like a prison to people who happened to be sick. Has it really changed? Alternative medicine is no alternative to me. No-treatment treatment, as advocated by some spiritual-healing organizations, is not acceptable to me. After a delay of two years, I hope this is a real breakthrough, better late than never. Infection of Hansen’s bacterium may create predisposing conditions for malignant transformation.  san   Perhaps it is too late if malignant transformation has already occurred. In spite of all the problems, the system is still the only viable “thing” I can count on.

 

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

 

 

References

 

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.

 

Back to Egret Directory

 

 

Continues in part 9