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Appeals : Confirmed Referee Decisions : #82 - March 10, 2003

D E C I S I O N

A. Introduction

[1] The Claimant, 22 years of age at the time of the hearing, applied for and was awarded certain compensation as a Primarily-Infected Hemophiliac pursuant to the Hemophiliac HCV Plan (the "Hemo Plan").

[2] However, the issue in this appeal relates to the Claimant's application for reimbursement in respect of certain chiropractic treatments (more specifically delivered by way of a device known as an "Activator", about which more will be said shortly) and nutritional supplements. These treatments and supplements have been provided initially solely by Dr. Lynes, of Stettler, Alberta, when the Claimant's family lived closer to him. More recently, in addition to Dr. Lynes, the Claimant has obtained similar services and supplements from Dr. Powers, of Medicine Hat, Alberta, because the Claimant's family has since moved and now lives closer to Dr. Powers than to Dr. Lynes.

[3] By letter of January 29, 2002, the Administrator advised the Claimant as follows:

We have received your out of pocket claims for the items listed below:

1. All expenses associated with Chiropractic treatments ($31,949.14)
2. Nutrition expenses relating to alternative treatments ($15,912.34)
3. [Claimant's] Lost Wages for 1995, 1996, 1997 ($24,320.00)
4. [Claimant's] Student Loans ($15,125.11)

As per the Standard Operating Procedure (<<SOP>>) relating to processing Uninsured Medical Expenses (TRAN and HEMO Plans ss. 4.06), uninsured Medical Expenses are defined as recommended/prescribed by a <<HCV Medical Specialist>> and must be generally accepted by the medical community. Your claims for treatments as recommended by Dr. Lynes and Dr. Powers do not meet the aforementioned definition. In light of this fact, your claim for these expenses must be rejected.

The 1986-1990 Hepatitis C Settlement Agreement defines "out of pocket expenses" to include: (i) expenses for travel, hotels, meals, telephone and other similar expenses attributable to seeking medical advice or generally accepted medication or treatment due to his or her HCV >>. In accordance with the Settlement Agreement your claim to recover Lost Wages and Student Loans must be rejected, as these are not attributable to travel, hotels, meals, telephone expenses attributable to seeking medical advice. In light of this fact, your claim for these expenses must be rejected.

Please be advised that the HCV infected Person is entitled to claim any lost income if he or she has been approved at disease level 4 or higher. In cases where the HCV Infected Person was approved at disease level 3 and he or she is 80% disabled due to the HCV infection, a claim for lost income may also be made. Lost wages for close family members are not recoverable.


[4] By way of Request for Review dated January 12, 2002, the Claimant requested that a Referee review the denial of this aspect of his claim by the Administrator. Attached was a letter from the Claimant's father dated January 10, 2002 , outlining the Claimant's arguments in support of the claim for reimbursement for the costs of certain "holistic" treatments. Some of these arguments were as follows:
[Claimant], a severe hemophiliac was diagnosed with Hepatitis C, continues to go to school on a limited basis but cannot work due to chronic tiredness, ill health and chronic joint problems. Because of this he suffers from anxiety, nervousness, as well as stomach problems, etc. This in turn keeps him from being able to work to support himself and the vicious cycle goes around. He gets some financial relief from HRDC, but only as long as he is a student. The rest comes from his family.

The Review Board continues to base (the denial of) our claim on the fact a specialist (some months ago it was only a M.D. and before that it was any doctor {when he had [Claimant's] chiropractor ~ who is a Dr. of Chiropractic and a specialist in his field}), has to recommend any treatment that would fall under "other expenses".

~ Activator Chiropractic and special vitamins and nutrition has made a difference in [Claimant's] life…

~ We believe Activator Chiropractic has preserved his life and it is not our fault this is not available in Saskatchewan ~ the only jurisdiction in North America it is not. Thus our expenses to Alberta.

~ We continue to be amazed that [Claimant's] only treatment of cryoprecipitate after 1986 came because his mother's blood was refused by a MEDICAL SPECIALIST a HEMATOLOGIST. Now this same group of specialists are going to have final say whether or not we get compensated for a potentially life threatening decision that their profession made.

You will not find a Doctor … because they do not understand the process and procedure.

We believe that discrimination is entering into this picture ~ I am told other provinces have Hepatitis C clients who are being paid (treatment) for holistic services.

We realize that our case is anecdotal but please realize that it has given us some relief and hope which the medical profession stole from us in their arrogant denial of using [Claimant's] mother's blood resulting in the Hepatitis C.

Further, you say that you will only pay from the time he was diagnosed in '95. This is also ironic because he never had any cryo since 1988, when he received it from the Royal University Hospital in Saskatoon. And in 1990 the system was pronounced safe, making it impossible for him to contract Hepatitis C.
These criteria and rules that you have put into place and, if I might add - changed as we went along, were never explained to us or we would have gone on our own…

We are not confrontive or irrational people, but feel you have put us in a corner where we are unable to fall under your criteria and are being punished and discriminated against because we used something other than a medical approach to a problem they created.


[5] The claimant indicated that he wished to have the matter decided by way of Reference rather than Arbitration and requested an in-person hearing before the Referee.

[6] A hearing date was therefore set for May 9, 2002 in Saskatoon. Both parties provided written submissions and viva voce evidence was lead by both parties. The Claimant attended the hearing along with his parents. The Claimant's father testified on the Claimant's behalf. The Claimant's Chiropractor, Dr. Lynes, testified by way speakerphone. Carol Miller, Appeals Coordinator of the Hepatitis C January 1, 1986 - July 1, 1990 Claims Centre (the "Claims Centre"), testified on behalf of the Administrator. In the result, the matter will indeed be adjudicated upon based on the written materials, testimony provided by the parties and post-hearing documentation, as set out below.


B. Issues

[7] Fund Counsel, representing the Administrator, advised the Referee that to date there have been no decided cases by either Referee or Arbitrator that have interpreted or applied the "uninsured treatment and medication" provisions of Articles 4.06 and 4.07, which are identical in both the Transfused HCV Plan and the Hemo Plan. These articles provides:

4.06 Compensation for Uninsured Treatment and Medication

An Approved HCV Infected Person who delivers to the Administrator evidence satisfactory to the Administrator that he or she has incurred or will incur costs for generally accepted treatment and medication due to his or her HCV infection which are not recoverable by or on behalf of the claimant under any public or private health care plan is entitled to be reimbursed for all reasonable past, present or future costs so incurred, to the extent that such costs are not costs of care or compensation for loss of services in the home, provided:

(a) the costs were incurred on the recommendation of the claimant's treating physician; and

(b) if the costs are incurred outside of Canada, the amount of compensation cannot exceed the lesser of the amount of compensation payable if the costs had been incurred in the Province or Territory where the claimant resides or is deemed to reside and the actual costs.

4.07 Compensation for Out-of-Pocket Expenses

An approved HCV Infected Person who delivers to the Administrator evidence satisfactory to the Administrator that he or she has incurred or will incur out-of-pocket expenses due to his or her HCV infection that are not recoverable by or on behalf of the claimant under any public or private health care plan is entitled to be reimbursed for all reasonable costs so incurred provided:

(a) out-of-pocket expenses will include (i) expenses for travel, hotels, meals, telephone and other similar expenses attributable to seeking medical advice or generally accepted medication or treatment due to his or her HCV infection and (ii) medical expenses incurred in establishing a Claim; and

(b) the amount of the expenses cannot exceed the amount therefore in the guidelines in the Regulations issued under the Financial Administration Act (Canada) from time to time.

[emphasis added]

[8] The interpretation to be applied to the emphasized portions of Articles 4.06 and 4.07 presents the most serious obstacle in the path of the Claimant's position in this matter. The issue is of obvious importance to both parties - to the Claimant because of the significant costs incurred by his family and the view of the Claimant, his family and evidently his health professionals, that the treatment and nutritional supplements in question have resulted in dramatic amelioration of the Claimant's condition - to the Administrator given the necessity to correctly apply the provisions of the Plan in order to preserve the financial sufficiency of the Fund for the benefit of all claimants.

[9] The matter is further complicated by the Claimant's underlying hemophilia condition. While the Hemo Plan was clearly designed to address the very situation of an individual afflicted with both hemophilia and HCV, the Plan only provides compensation for the HCV aspects of the Claimant's condition. This case therefore further squarely raises for the first time under consideration by a Referee or Arbitrator, the difficulties associated with pinpointing with scientific precision, those aspects of treatment of the Claimant's dual condition that are related to HCV, as opposed to such treatment that would have been required or beneficial in any case for the treatment and management of Hemophilia.


C. Facts, Summary of Evidence

[10] The Claims Center file, consisting of 152 pages, was entered in evidence as Exhibit 1 at the hearing. In Section A, Box 1 of the Claimant's General Claimant Information Form (HEMO 1) dated October 15, 2000, the Claimant checked off the box indicating:

I have been diagnosed with Hemophilia (or with Thalassemia Major). I received or took Blood (or a Blood transfusion) in the period January 1, 1986 to July 1, 1990 in Canada and I contracted the Hepatitis C virus.

[11] In the accompanying Declaration (HEMO 3) dated June 27, 2000, the Claimant's father stated that to the best of his knowledge, information and belief, the Claimant:

Box 4 - has never used non-prescription intravenous drugs.

Box 5 - resided in Saskatchewan at the time of his application

Box 6 - resided in Saskatchewan at the time he first received or took blood in Canada during the period January 1, 1986 to July 1, 1990 ("the Class Period")

Box 7 -first received or took Blood during the Class Period in Saskatoon, in April 1988

[12] Ultimately, on October 6, 1997, there was written confirmation that the Claimant had received 54 units of Cryoprecipitate (Cryo) in April 1988 at Royal University Hospital (RUH) in Saskatoon. By letter of May 17, 1995, The Canadian Red Cross Society confirmed that their investigation revealed that the Cryo received by the Claimant at RUH in April 1988 was from a donor who had been determined to be HCV positive. PCR test results dated September 9, 2000, confirmed that the Claimant tested positive for the HCV antibody with the RIBA test. The Treating Physician Form ("HEMO 2"), confirming that the Claimant was at Disease Level 2, was completed by the Claimant's physician on June 12, 2000. This form indicated that the physician knew and treated the Claimant for a period of 8 years, between 1987 and 1995 (the years during which the Claimant and his family resided in the same Saskatchewan community as the Claimant's then physician). The Claimant was first medically diagnosed (Dr. Lynes appears to have done so earlier) as being infected with the HCV in 1995.

[13] Carol Miller testified at the hearing. She indicated that she was personally involved in the assessment of this claim. She described the procedure, whereby once the Claimant has signed a "Full and Final Release" in respect of any further rights to litigate over the matter of contracting the HCV from blood, which is accepted by the Centre, the Centre can then send out money to the Claimant, in this case, shortly after October 20, 2000, being the following payments, including indexation for the year 2000:

Level 1: CDN $10,156.83
Level 2: CDN $20,313.65 ($5,078.41 of which was initially held
back pending receipt of a PCR Test report)

[14] The Joint Committee, defined in the Settlement Agreement to mean "a committee of four persons comprised of one Class Action Counsel from each of the Transfused Class Actions and one Class Action Counsel from the Hemophiliac Class Actions", provided the Administrator with guidelines as to how to administer the Plans including Articles 4.06 and 4.07 thereof, as part of the Standard Operating Procedures (SOPs). Some benefits can be paid out almost immediately. First the Claimant needs to establish that he is in the Class. Then the Claimant must show what level he is at. The Joint Committee approved the form GEN 3, Compensation for Uninsured Treatment/Medication and Out of Pocket Expenses. The Joint Committee does not make decisions on what constitutes accepted medical practices. They merely flag issues and attempt to provide advice and guidelines. The Joint Committee provided advice to the Centre to the effect that a general practitioner's opinion would not suffice and that a specialist's opinion was necessary. While Article 4.06 does not specifically spell out the requirement of support from a specialist, its application has been interpreted by the Joint Committee in such a manner. The Administrator bases such decisions on medical evidence, in this case, from Hepatitis C Specialists.

[15] There is a 3-step analysis, which proceeds as follows:

Step 1 - Is the proposed treatment/medication generally accepted? While this is a generic question, it is the Administrator's belief that this requires a specialist to support the conclusion.

Step 2 - If the Claimant gets past Step 1, the next question is: "is the proposed treatment/medication reasonable?"

Step 3 - If the proposed treatment is both generally accepted and reasonable, did the Claimant receive it on the recommendation of his treating physician?


[16] There is also a requirement that there must be a relationship between the disease level and the treatment. Level III is the level that requires treatment. The connection between the support of specialists and the coverage for such treatment is clear, since only gastroenterologists, hepatologists or internists can prescribe Interferon and other such medications. In this case, two managers, including the CEO and an RN who is second in charge, reviewed the Claimant's application for benefits. They have also invited Dr. Garber, an Ottawa Infectious Disease Specialist who heads a team of virologists and hepatologists that are treating over 400 patients with HCV, to review the matter. Dr. Garber has advised that the activator is not generally accepted treatment for HCV. For all of these reasons, Ms. Miller testified that the Centre had no option but to deny the Claimant's application for coverage with respect to this form of unconventional treatment.

[17] Dr. E.L. Lynes, of Stettler, Alberta, testified by speaker-phone on behalf of the Claimant. Dr. Lynes graduated as a Doctor of Chiropractic in 1971 and has practiced continuously since. His first 6 years of practice were spent in Montreal. He has participated in years of post-graduate work and has taken at least 27 courses, many relating to the use of the Activator, others relating to nutrition and radiology. He has kept abreast of issues of concern to osteopaths and natural issues. He has taken courses related to Hepatitis A, B and C so has a fairly broad knowledge in this area. He describes having taken 12-hour courses, at least once a year and has taken probably 3 or 4 of such courses dealing specifically with HCV.

[18] When the Claimant first attended on him, Dr. Lynes identified certain "structural problems" in his back that were hemophilia-related. He believes that the Claimant had certain structural problems from birth at T5-6. He did not feel that the Claimant had "classic" hemophilia at the outset, which afflicts roughly 99% of the hemophilia population and which results in many victims being in a wheelchair by age 8 with a short life expectancy. Rather, he was then and remains now of the view that the Claimant suffers from a much more rare "spontaneous" variety of hemophilia.

[19] Dr. Lynes performed certain "isolation tests" with the benefit of the Activator, a hand-held instrument. The Activator enables Dr. Lynes to identify and locate the problem areas, and later to treat them. The Activator delivers a force of approximately 23 pounds with a speed of not more than 300 miles per hour, onto a very focused area of the spine, between ¼" and 5/16ths" movement and in a safe, controlled manner. The Activator Technique was pioneered by Arland Firth in Phoenix, Arizona. The Activator Method is instructed in most Colleges in the U.S, including Davenport Iowa, the Palmer College of Chiropractic. He believes that Canadian Colleges are now teaching the Activator Method as well. The Activator can tell you if L5 is rotated, and if so, to the left or the right. L5 and L6 are closest to the level that controls the nerve supply and circulation to the liver and stomach.

[20] In assessing the Claimant, Dr. Lynes applied his wide background in Applied Kineseology ("A.K.") to perform various muscle-testing which permits a trained practitioner to isolate organs that are not working properly. A.K. involves muscle testing for organs or areas to see if they are functioning properly or not. In and of itself, this does not accomplish a diagnosis, but does identify the problem area, from which point one can work more readily towards diagnosis. One can then use lab tests to pinpoint the problem, or progress in remedying it. If, however, you cannot identify the location of the problem, you are not likely to be able to diagnose it medically.

[21] In the Claimant's case, Dr. Lynes found thoracic involvement. While the trapezius muscle is the best for relating liver problems, the sartorius, hamstring or deltoid muscles also have application. If the trapezius muscle is strong, this would normally indicate a healthy liver. If this muscle is weaker to the touch, this is suggestive of liver problems. With the assistance of the Activator, he was able to determine that the Claimant's liver was not working properly, as a consequence of all the joint and muscle problems. He adjusted the Claimant in order to open up the nerve supply to the affected areas, in particular the liver. A leg check, whereby from a lying down position the patient's feet are lifted and the length of the legs is measured, should show if the spine is out of balance. Leg length is measured and charted separately with each area tested. If a differential length is identified, this demonstrates circulation and nerve blocking problems. In this manner, each segment of the spine can be checked. Applying force to the facet jars it into place. Vertebrae can be adjusted with the Activator. Opening up the nerve supply and circulation allows the autonomic nerve system to repair itself. In the case of a blockage in the T5 and T6 area, the Activator can supplement principles of Applied Kineseology to permit the diagnostician to isolate, locate and adjust, so as to restore nerve supply and circulation to the liver and gall bladder, in order to permit the immune system to essentially "heal itself".

[22] In 1983, through the application of A.K. and the Activator, Dr. Lynes determined that the Claimant had a liver problem. By 1988, Dr. Lynes suspected Hepatitis, although HCV was not then known as such, as the Claimant's eyes were yellow and he was a "living banana". It was determined that he would be treated for liver conditions. By 1988, Dr. Kobrynsky, the Claimant's physician from RUH, knew that the Claimant was attending on Dr. Lynes and actually sent blood-clotting product to Dr. Lynes' office, as he wanted Dr. Lynes to recommend this to the Claimant. Between 1983 and 1988 the Claimant was slowly coming off of the use of coagulants. They found weakness in the immune system, which was treated with desiccated liver, bovine extract, a natural product, which biologically and safely causes the organ to begin to repair itself. This is a freeze-dried product in tablet format. The Claimant also began to use Pentacal, which contains 6 different kinds of Calcium, for hemophilia. It is non-bonded so does not accumulate. In short, the Claimant was taking:

1. ISB - Immune System Builder
2. Calcium
3. Desiccated liver
4. Adrenal - which assists with autoimmune deficiencies - this allows the body to repair itself - if you do not correct such problems, the liver develops cirrhosis.

[23] Manual chiropractic care, involving considerable force with manipulation, is not suited to the care of hemophiliacs - if the patient was a bleeder, it would cause him to have a bleed. The Activator does not cause bleeds. By 1988, Dr. Lynes felt that there had been significant improvement. He felt that 75% to80% of the Claimant's problems had been corrected and he was by that time essentially starting on a maintenance program, whereby he required treatments only once every 3 months, versus once a week during the active treatment phase. The Claimant's condition improved to the point that Dr. Lynes is not convinced that he is still a hemophiliac, or if he is, the Claimant is at worst a minimal hemophiliac. When he started treating the Claimant, Dr. Lynes noted that every time there was blood testing done before the Claimant received Cryo, towels were required. The Claimant has not taken Cryo since 1988 and had not had a bleed since 1988. However, by October 1989 there were definite problems with the joints. Dr. Kobrynsky wanted the Claimant do take Cryo for bleeding in the elbow. Dr. Kobrynsky said that if what Dr. Lynes was doing worked, then use it prophylactically. Dr. Lynes has treated other structural hemophiliacs, many of whom can live without coagulation treatment, with early and active care. He would usually arrange for liver function tests prior to seeing the Claimant. He last saw the Claimant a couple of months prior to the hearing and felt that he was in good shape. The last blood tests showed liver function slightly above normal. Dr. Lynes felt that he could be of greater assistance in treating spontaneous Hemo than the classic Hemo. He felt that the medical profession generally loved the Activator because there is no risk and it is very effective.

[24] The Claimant's father testified. He testified as to the day in April 1988 that they were in RUH in Saskatoon, at which time the physicians wanted to supply blood products to his son. The Claimant's parents said that when they advised the physicians that they wanted RUH to take blood from the Claimant's mother, they were told that the chances were less than one in a million that their son would contract the HIV virus from blood and they were threatened that their son would be taken into the care of the Department of Social Services if they refused to follow medical advice.

[25] Before they started taking the Claimant to see Dr. Lynes, a small paper cut on the Claimant's lip as an infant would cause severe enough bleeding such that he would need Cryo. Dr. Lynes treatments, together with those of Dr. Powers when they moved closer to Dr. Powers' clinic than to Dr. Lynes', have been a lifesaver for the Claimant. They would not have signed onto the settlement if they had been told that holistic treatments would not be covered. 20 of 24 severe hemophiliacs in Saskatchewan are dead. He feels that his son would have been among them were it not for Dr. Lynes. Dr. Lynes gave them hope. They now take the Claimant to see Dr. Powers as he also uses the Activator Technique and nutritional supplements and is much closer to where the Claimant presently resides than is Dr. Lynes. The Claimant's last bleed was in 1988. He feels that the Hemo issues were very minimal by the time the Claimant had been treated by Dr. Lynes for some time and that most of his present problems relate to the HCV and not the Hemo. Even with both Hemo and HCV, now the Claimant is okay 75% of the time, due in large part to the treatments from Dr. Lynes and Dr. Powers. The steady improvement and progression in the Claimant's health was quite impressive but was interrupted and complicated by the transmission of infection from HCV in 1988.

[26] A summary of health professionals seen by the Claimant, in addition to Drs. Lynes and Powers, was provided and is as follows:

1980 Dr. D. (along with Dr. W.) reported the diagnosis of the Claimant as hemophiliac. When he learned that the Claimant was being treated by Dr. Lynes, Dr. D. initially would not endorse such treatment and "tore a strip off" the Claimant's parents, but eventually said that they should go ahead and do it.

1987-95 Dr. H. - While he did not specifically approve of the treatment that the Claimant was obtaining with Dr. Lynes, he did say, "if it works - keep on doing it. I've never seen you look so good." In 1995 Dr. H. assisted in confirming the HCV diagnosis, when the Claimant was taken to see him as yellow as a banana. After the diagnosis he knew that the Claimant was continuing to attend on Dr. Lynes with good results and did nothing to discourage this.

1988 - Dr. Kobrinsky recognized Dr. Lynes as the Claimant's primary caregiver. While he was initially concerned that the Claimant was seeing a Chiropractor, he cooled down after speaking with Dr. Lynes and told the Claimant's father that Dr. Lynes appeared to be as knowledgeable as a medical doctor. Dr. Kobrinsky said that "if what Dr. Lynes was doing was working, then use it prophylactically." He did not treat the Claimant after the HCV diagnosis was made.

1999 (July) Dr. Kariya, an OBGN in Stettler, whose main area is surgery, was on call at Stettler Hospital when Dr. Lynes sent the Claimant to hospital due to severe pain. Dr. Kariya worked with Dr. Lynes on the Claimant's behalf and was well aware of the treatment regimen undertaken by Dr. Lynes.

1994 - 1995 Dr. McSheffery - RUH - the Claimant was sent by Dr. H. to him after being diagnosed with HCV. He remarked that the Claimant was doing really well with what he was doing, although it was anecdotal.

1994 - 1995 Claimant's parents spoke with a Dr. Mulder, a well-respected physician who was the team doctor for the Montreal Canadiens and who was familiar with Dr. Lynes and who advised them to continue with him if it was working for the Claimant. He said that he had treated patients with Hepatitis B and that sometimes the cure (Interferon) is worse than the disease (HCV).

1996 - 1997 Dr. Buchinsky, a neurosurgeon at the Plains Hospital in Regina, advised them to proceed with chiropractic and suggested various B vitamins, but invited the Claimant's parents not to tell anyone.

2000 - 2001 Dr. G., a physician in the community to which the Claimant's family had moved, reported as follows in a letter dated September 21, 2001:
(Claimant) is a 22-year-old gentleman who is a hemophiliac. As a result of a cryoprecipitate treatment several years ago, he contracted hepatitis C. Initially, apparently, he did have some jaundice but has recovered quite nicely from that. He apparently has received chiropractic treatments for several years because of joint pains, fatigue, and (illegible) probably secondary to the hepatitis C. He is also on vitamin supplements which, his parents feel, is beneficial to him. He apparently received good benefit from a chiropractic device called an Activator that is not licensed for use in the province of Saskatchewan and, therefore, has had to travel to Alberta to receive his chiropractic treatments. Although I have seen him for a few of these problems in the past, I cannot make any comment on the efficacy of his treatment…" [emphasis added]

[27] The Claimant also tendered a letter from Dr. Nathan Kobrinsky, Professor, Section of Haematology, Department of Pediatrics, RUH, dated October 3, 1989 to Dr. Lynes, with attached clinic note of the same date, which were received into evidence as Exhibit 2. Extracts from this letter, which with the benefit of hindsight must be bitterly ironic for the Claimant, are as follows:

As discussed, I was somewhat concerned by the progressive haemophilic arthropathy demonstrated in young (Claimant), a boy with severe factor deficiency. In discussion with (Claimant's) mother, it is clear that his lack of factor replacement therapy at least in part relates to fear on her part that he may contract the human immunodeficiency virus (HIV) from blood product exposure. In view of modern methods of preparation, this should not be a present day concern.

For acute bleeding episodes including a present bleed into the left elbow, I would recommend treatment with 800 units of factor VIII concentrate … daily until the bleed has resolved completely by clinical examination and then 1 day further… Arrangements will be made to have appropriate supply of wet heat treated factor VIII concentrate sent to your hospital for (Claimant's) use.

The cornerstone of prevention is early treatment. I, therefore, would strongly recommend that (Claimant) be treated whenever he develops any signs of a musculo-skeletal complaint - even something as apparently minor as a barely detectable limp… Haemophiliacs often feel the bleed coming on and should be encouraged to approach their parents or caregivers for early intervention in order to prevent progressive joint damage. It is true that (Claimant) has not had any obvious severe bleeds in the last year. However, the minor repeated bleeds that have been untreated have had their toll… we could work towards (Claimant) going on a Home Care Program whereby he would be given a supply of factor VIII with needles etc. to take home and where he could with the help of his mother treat in the home setting.

I feel that the family needs considerable amount of education. This should not be a problem since I note that when all is said and done, they are very concerned for their boy and their resistance to treatment up to this time has been apparently well intentioned.

I would welcome any discussion concerning any acute problem that (Claimant) may encounter with regard to his haemophilia… I enclose for your information a review on bleeding problems in children… The section of haemophilia …. may be helpful with regard to (Claimant's) management.

c Dr. H.

Under Clinical Notes of same date:

Comment: … The reticence to treat is based on genuine concern by the parents that (Claimant) may contract the HIV. None the less, in view of the availability of safer blood products at the present time, appropriate factor replacement therapy needs to be encouraged…

Plan: I have discussed the situation at length with (Claimant's) mother. She was very suspicious and reluctant to treat (Claimant) for his bleed now, however, after discussion with Dr. Lynes, she has agreed to treatment as outlined. (Claimant) has previously had the hepatitis B vaccine…

[emphasis added]

[28] At the conclusion of the in-person hearing, it was agreed that certain additional information would be requisitioned with a view to providing further assistance to the Referee in understanding the medical/scientific basis for the position of both parties. It was agreed that Dr. Lynes would provide portions of his clinical record dealing with dates of the Claimant's attendances on him, together with certain information in respect of some of the nutritional supplements he had recommended for the Claimant. It was also agreed that the Referee would request a copy of Dr. Powers' clinical record for the Claimant in order to ascertain the dates, nature and frequency of such treatments. Finally, the Centre would supply a letter from Dr. Garber with respect to his views relating to the possible efficacy of the Activator Technique and nutritional supplements in respect of someone with the Claimant's conditions(s) and health background, once the further materials from Drs. Lynes and Powers were received. As will be seen from the progression of events described below, it took a considerable period of time to gather all of the records and literature and then have them reviewed by Dr. Garber.

[29] The Centre supplied an unsigned letter from the distinguished Dr. Gary Garber, Professor and Head, Division of Infectious Diseases, University of Ottawa/The Ottawa Hospital, on behalf of the Ottawa Hospital Hepatitis Clinic. Dr. Garber's Curriculum Vitae was received in evidence as Exhibit 3 and his letter of May 3, 2002, once signed by Dr. Garber (received in late May, 2002) was entered in evidence as Exhibit 4. This letter states:

I have had the opportunity to review at (sic) list of alternatives and complimentary therapies as provided by the Hepatitis C Program along with members of our Hepatitis clinical team.

We are unanimous that there is no objective evidence to justify the role of "Activator Methods Chiropractic Technique" in the management and care of patients with hepatitis C (i.e., it is not a generally accepted treatment for HCV). As such, we do not support its use and agree that it not be included as part of a standard patient care regimen.

[30] Dr. Lynes did supply, under cover of a letter dated May 13, 2002, copies of his clinic's computer records for the Claimant covering the period November 26, 1993 through to March 18, 2002, and the manual clinic notes covering the period of time before then, dating back to July 3, 1986. These documents have been received in evidence as if they had been tendered at the hearing, as Exhibit 5. Dr. Lynes further supplied certain literature in relation to the efficacy of correcting misalignments of the vertebrae in relation to the structures, organs and functions affected. In particular, these documents confirmed his viva voce evidence to the effect that a misaligned 5th thoracic vertebra may affect the liver, solar plexus and blood. These materials state that if there is a spinal misalignment in this area, the resultant nerve pressure and irritation may cause pain between shoulders, chest and rib pains, problems with the liver and ducts, problems with the gall bladder, shingles, etc. Correction of such misalignments will release the impinged nerves allowing them to heal. Once these nerves have healed, the organs will return to normal function. Dr. Lynes further supplied a "Primary Reflex Points" chart, indicating the liver and showing Total Liver D-Tox as being of assistance in that area. He supplied product information sheets for Core Level Liver and Total Liver D-Tox (the latter authored by Dr. John Brimhall), received in evidence collectively as Exhibit 6. These materials require careful consideration. Rather than oversimplifying the substance of this literature, for the sake of completeness, these are appended collectively in their entirety. Copies were supplied to Fund Counsel and the Claimant.

[31] Upon obtaining the Claimant's consent to the release of such information, the Referee also wrote to Dr. Powers to request a copy of his office chart and clinical record with respect to the Claimant. By letter of May 29, 2002, Fund Counsel indicated that she wished to ask Dr. Garber to review and provide his opinion on the issue of nutritional supplements. She noted that the only product about which information had been supplied was "total liver D-Tox". Before forwarding materials to Dr. Garber, she wished to ensure that the Claimant had supplied all the literature in relation to nutritional supplements that he intended to supply. Under cover of letter dated June 4, 2002, Dr. Powers supplied the records as requested, and these records have been received in evidence as Exhibit 7. The chart documents 40 attendances between April 8, 1993 and July 30, 1999. Dr. Powers practices in the Activator Method and appears to subscribe substantially to the holistic approach followed by Dr. Lynes, recommending and supplying many of the same nutritional supplements as those recommended and supplied by Dr. Lynes. Copies of his chart were supplied to the Claimant and Fund Counsel on June 11, 2002.

[32] The Referee wrote to Dr. Lynes again on August 14, 2002, stating:

Thank you very much for your letter of May 13, 2002, with enclosed clinical notes and related materials. I am presently considering issues with respect to nutritional supplements that have been supplied from your clinic to (Claimant). As I recall from your testimony, the products that have been supplied to (Claimant) in that regard include:

1. ISB - Immune System Builder
2. Calcium
3. Desiccated liver
4. Adrenal

You were kind enough to send certain literature relating to "Core Level Liver" and "Total Liver D-Tox." In that regard, I would appreciate receiving clarification as to whether these are the same or different products and whether one or both of these include the desiccated liver that you referred to. Further, if I recall correctly, you were of the view that the calcium is attributable specifically to the hemophilia and not to HCV. If I have misunderstood your evidence in that regard, please advise. Finally, if you are of the view that any of the other products listed above are required for [Claimant's] HCV condition (again versus hemophilia), I would very much appreciate receiving any literature you have on those products that supports their use relative to HCV. I am attempting to determine the extent, if any, to which any of these supplements may be considered to be attributable specifically to HCV issues, as opposed to issues associated with hemophilia or other conditions, and as to whether such products would be considered to be part of generally accepted treatment due to an HCV infection.

While I am not in a position to requisition a medical-legal report from you in this regard, if you happen to have any such literature, for example product information that accompanies these products, that may assist me in this effort, I would very much appreciate receiving copies of same at your earliest opportunity and, if at all possible, by the end of August.

I look forward to hearing from you and will be pleased to cover your reasonable expenses for providing this information to me. Thank you once again for your kind co-operation in this matter.


[33] A similar letter had been sent to Dr. Powers on August 8, 2002. No response was received from Dr. Powers. However, on September 18, 2002, in response to the above request, Dr. Lynes did supply (in addition to the product information he had supplied earlier in relation to Total Liver D-Tox) literature/product information relative to "Total Multimune for Enhancing Immune System Strength" (Dr. Lynes advises that this is the same as "ISB - Immune System Builder"), "Total Calcium" and "Adreno-Lyph Plus". This additional literature has been received into evidence as Exhibit 8,

[34] The Referee wrote the following letter to Claimant and Fund Counsel on September 18, 2002:
I received today a copy of my letter to Dr. Lynes of August 14, 2002, together with certain literature that he supplied to me, copies of which are attached. I am also enclosing for Ms. Horkins' benefit a copy of [Claimant's father's] fax to me of September 11, 2002 with attachment.

I understand that this now concludes the information to be supplied by the (Claimant) in support of his position. Therefore, I assume that this will now permit Ms. Horkins to arrange for Dr. Garber to review and provide an opinion on the efficacy of such products in the management of HCV, particularly for an individual who also has hemophilia of the specific variety that [Claimant] has (it was described as a structural variety of spontaneous hemophilia, which Dr. Lynes testified accounted for less than 1% of the population with hemophilia). I am also wondering if this information would make any difference with respect to Dr. Garber's opinion relative to the efficacy of the Activator method. It would also be of assistance to me if Dr. Garber would be in a position to comment on whether or not there is any evidence that nutritional supplements such as those taken by [Claimant], given his history and the apparent improvement in his condition which is attributable to such treatment, either in isolation or in combination with the Activator method, may serve to minimize the effects of the HCV or prevent or delay the possible progression of HCV in a patient such as [Claimant] from Disease Level 2 to Disease Level 3. Alternatively, are there any medical approaches that are considered successful or beneficial in accomplishing this?

Finally, while this perhaps would not come from Dr. Garber, I would find it useful to have some statistical or other information as to the extent, if any, to which "alternative" or "holistic" methods or treatments have been approved under the Plan for other individuals, and if so under what circumstances.

Would Ms. Horkins please advise as soon as possible as to when she expects to be in a position to provide this material, and if she prefers to provide such information in documentary format, or to perhaps reconvene the hearing, perhaps by conference call, in order to deal with any additional evidence she may wish to tender.

Thank you.

[emphasis added]


[35] By letter dated October 15, 2002, Fund Counsel wrote to the Referee, with a copy to the Claimant, advising that she would request Dr. Garber to consider the specific nutritional supplements claimed for, in addition to the activator method of chiropractic treatment, including the materials provided by Drs. Lynes and Powers. She went on to state:

We will ask Dr. Garber the following questions which are relevant to this appeal. As provided by section 4.06 of the Hemo Plan, have the following requirements been met:

(1) That the uninsured treatment is "generally accepted treatment";
(2) That the uninsured treatment is due to the claimant's HCV infection; and
(3) That the uninsured treatment is not recoverable under any public or private health care plan.

We acknowledge that Mr. Shapiro has requested that we pose certain questions to Dr. Garber which are not reflected in what we have stated above. However, it is important that we direct our attention to the wording of the settlement agreement and have Dr. Garber specifically address the requirements set out in the Plan.

With respect to Mr. Shapiro's request for statistical … or other information as to the extent, if any, to which alternative or holistic methods of treatment have been approved under the Plan for other individuals, we will request the Administrator to advise if there are any … (such) methods that have been recognized by the Administrator pursuant to the protocol.

If we have not accurately stated the treatment and products which are the subject matter of this appeal, please advise us immediately.

[emphasis added]

[36] Dr. Garber wrote to Ms. Horkins on November 26, 2002, responding to the specific questions posed to him by Ms. Horkins identified above. In his opinion, which was received on December 16, 2002, and entered into evidence as Exhibit 9, he stated:

Immune system builder is apparently a combination product and the literature attached is copyrighted to the author. Clearly this has not passed a peer review process. As well, unless the product has been approved by Health Canada, the quality, reliability and content cannot be assured.

Replacement with desiccated organs (in this case adrenal and liver) have been approaches used going back many years. Again the organ may or may not contain the hormone or ingredients reported. More importantly, the substance may or may not be digested in the gastrointestinal tract thus eliminating its possible activity and if by chance it is absorbed, it may not necessary (sic) be in an active (biologically useful) form. The use of calcium supplementation could have a use in a patient who was difficulty eating calcium laden foods. Milk and milk products in youth/adolescents would be the prescribed approach unless contraindicated.

In summary, this approach to care is certainly not standard in the case of hepatitis C patients whether hemophiliacs or otherwise. Homeopathic therapies are used by many patients despite a lack of clinical evidence and often used on the basis of internet recommendations. Nevertheless, their efficacy is not known, rarely tested and in fact have been associated with drug interactions and adverse effects.


[37] Dr. Garber did not respond to the questions raised by the referee with respect to the specific circumstances of the Claimant, as he was not asked to do so by Fund Counsel.

D. ANALYSIS AND DISCUSSION

[38] While it would have been helpful to have had received answers to the other issues that Fund Counsel was invited to pass on to Dr. Garber and to the Administrator, the issues raised will be addressed on the basis of the evidence tendered by both parties. Articles 4.06 and 4.07 of the Hemo Plan have yet to be considered by a Referee or Arbitrator. We are therefore in uncharted waters. While these provisions are identical to articles 4.06 and 4.07 of the Transfused Blood HCV Plan, their application in the context of the Hemo Plan creates additional challenges. However, rather than purporting to be a blanket statement that is applicable to all claims under either Plan, the comments and conclusions that follow are intended to apply specifically to the facts before this Reference. The various applicable component criteria of 4.06 and 4.07 will be dealt with separately.

[39] The Claimant's father testified that they had understood that the Settlement Agreement allowed for compensation for alternative treatments. They would not have signed the release on October 27, 2000 had this not been the case, as indeed this treatment philosophy had been central to the management of the Claimant's condition for many years. Such an understanding would have been simply reconfirmed based on a review of the web-site. If one goes to Annex A, Disease Based Compensation Schedule for HCV Infected Persons, under "Compensation Payable" for Disease Level 2, under the columns for both "Reimbursement for Uninsured Treatment and Medication Costs" and "Reimbursement for Out-of-Pocket Expenses", the answer is "Yes". There is nothing to suggest that holistic or alternative treatments would not be recognized. Conversely, there the answer is "No" under the column for "Loss of Income or Compensation for Loss of Home Services" in relation to Disease Level 2.

[40] The definitions section of the Hemo Plan does not include "generally accepted treatment and medication". At page 13 of the Centre's file , it was noted on May 15, 2001 that the issue of coverage for chiropractic visits was under review by the Joint Committee. On August 23, 2001, the notes indicate that the Centre advised the Claimant's father that the Centre required "a letter from a physician who will agree with holistic approach, before we can approve". On September 21, 2001, a letter was provided by Dr. G., the Claimant's physician from his then community, the contents of which are as set out at the end of paragraph 25 of this decision. The Centre's interpretation of this letter was such that the "physician doesn't seem to endorse treatments". [I read this report somewhat differently]. A case summary was provided to the Supervisor to submit to the medical team for second opinion. By October 15, 2001, the Claimant's father was advised that the Joint Committee was reviewing the SOPs (Standard Operating Procedures) for alternative medicines. By December 3, 2001, the Claimant's father was informed that according to the Joint Committee's new SOP, alternative medicine requires a specialist referral. Therefore the claim does not meet the SOP requirements. This SOP, available on the web-site, is set out in its entirety below:

Standard Operating Procedure
SOP on Uninsured Medical Expenses and Out of Pocket Expenses (Plans ss. 4.06, 4.07)

Medical Expenses

1. In consultation with a gastroenterologist or any of the other specialties of physician which appears on Tran 2/Hemo 2 ("HCV Medical Specialist") the Administrator shall compile a list of medications/treatments which are recommended/prescribed for persons who have HCV and for conditions due to infection with HCV or treatment of HCV and which are generally accepted by the medical community (the "HCV Medication List"). This list shall be periodically updated at the Administrator's discretion.

2. The Administrator may accept a completed Gen 3 accompanied by receipts as proof of medical expenses incurred for any of the items on the HCV Medication List, except where:

(a) the total claimed on any one application exceeds $500 excluding the costs of HCV Compensable Therapy;

(b) the level of medical expenses claimed is inconsistent with the HCV Infected Person's overall application or disease level (eg: a person who is at Level 1 and has a negative PCR test claiming for significant medical expenses); or

(c) for any other reason the Administrator suspects the claim is not valid and wants the backup of a physician confirming the medications were prescribed or recommended as generally accepted treatment or medication due to HCV.

3. Where reimbursement is claimed for items which are not on the HCV Medication List, where one of the exceptions described above applies, or where there are items for which a claim is made but no receipts are available, the Administrator shall:
(a) require the HCV Infected Person to supply a form completed by a treating physician confirming that he or she recommended the claimed items; and
(b) consult a HCV medical specialist (if the treating physician is not an HCV medical specialist) to advise whether the items are generally accepted by the medical community for the treatment of HCV.

Out of Pocket Expenses

4. The Administrator may accept a completed Gen 3 accompanied by receipts (for those items which should be the subject of a receipt) as proof of out of pocket expenses due to HCV infection, except where:

(a) the total claimed on any one application exceeds $500;

(b) the level of expenses claimed is inconsistent with the HCV Infected Persons overall application or disease level (eg: a person who lives in a major centre claiming travel costs to doctors appointments or a person who is at Level 1 and has a negative PCR test claiming for frequent appointments with doctors); or

(c) for any other reason the Administrator suspects the claim is not valid and wants the backup of a physician confirming the expenses were incurred.

The maximum paid for expenses which are covered by the Treasury Board of Canada Secretariat Travel Directive shall be the amounts stipulated in the Treasury Board of Canada Secretariat Travel Directive, and

5. Where one of the exceptions described above applies or where there are items claimed for which the HCV Infected Person does not have receipts but should have a receipt, the Administrator shall:

(b) in the event that item for which reimbursement claimed is such that it is not amenable to confirmation by the treating physician, seek such additional evidence as the Administrator considers appropriate; and

(c) consult a HCV medical specialist (if the treating physician is not a medical specialist) to advise whether the treatment or medication to which the expenses relate are generally accepted by the medical community for the treatment of HCV.
[emphasis added]

[41] In determining what if any limits the SOP may create on the ability of a Referee to award compensation in respect of the costs of treatment, medication and expenses thereby incurred, it is important to consider the mechanism and legal framework by which SOPs come into being and to compare this process to that applicable to Court Approved Protocols. In this respect, the Settlement Agreement provides as follows:

ARTICLE ONE
INTERPRETATION


1.01 Definitions

… "Joint Committee" means a committee of four persons comprised of one Class Action Counsel from each of the Transfused Class Actions and one Class Action Counsel from the Hemophiliac Class Actions."

ARTICLE NINE
JOINT COMMITTEE

9.01 Appointment of Joint Committee

The Courts will appoint a Joint Committee with such powers, rights, duties and responsibilities as the Courts direct.

9.02 Joint Committee's Duties

Without limiting the generality of the foregoing, the duties and responsibilities of the Joint Committee will include:

… (b) establishing protocols, which must be approved by the Courts, for the Administrator, Trustee, Referees and Arbitrators for the administration of this Agreement and for the processing and payment of Claims, and rescinding or amending any of such protocols with the approval of the Courts; … [emphasis added]


ARTICLE TEN
SUPERVISION BY THE COURTS

10.01 Supervising Role of the Courts

(1) The Courts will issue judgments or orders in such form as is necessary to implement and enforce the provisions of this Agreement and will supervise the ongoing performance of this Agreement including the Plans and the Funding Agreement. Without limiting the generality of the foregoing, the Courts will:

… (h) approve, rescind or amend the protocols submitted by the Joint Committee…

(i) on application of any Party (defined earlier to include the governments and the plaintiff groups) or the Joint Committee … assess the financial sufficiency of the Trust Fund and determine, among other things: (A) whether the restrictions on payments of amounts in full in the Plans should be varied or removed in whole or in part; and (B) whether the terms of the Plans should be amended due to a financial insufficiency or anticipated financial insufficiency of the Trust Fund; …

(2) All matters to be determined by the Courts pursuant to Section 10.01(1) will take effect only upon the date when the last judgment or order of the Courts becomes final without any material differences in the three judgments or orders.

[emphasis added]

[42] Fund Counsel has confirmed that the SOP in question has not been approved by the Court. It is submitted by Fund Counsel that the SOP nevertheless falls within the purview of the Administrator under the Settlement Agreement. In this regard, the Settlement Agreement provides:

ARTICLE FIVE
THE ADMINISTRATOR


5.01 Appointment of Administrator
The Courts will appoint an Administrator to administer the Plans with such powers, rights, duties and responsibilities as are determined by the Joint Committee and approved by the Courts.

5.02 Administrator's Duties
Subject to obtaining the approval of the Courts, the Administrator's duties and responsibilities will include the following:
… (b) developing, installing and implementing systems and procedures for receiving, processing, evaluating and making decisions respecting Claims including making all necessary inquiries (including consulting medical personnel) to determine the validity of any Claim…

[43] It is clear that the Administrator was facing a difficult decision in determining how to administer the Plan in this area and adopted a process on Uninsured Medical and Out of Pocket Expenses that was no doubt well intended. The requirement of a specialist's recommendation for treatment at the Level III level is clear since, as Ms. Miller testified, only gastroenterologists, hepatologists and internists can prescribe Interferon and related medications. However, for those who are not at Level III, while there is no requirement that a specialist determine treatment and medications, the Administrator has nevertheless imposed such a requirement. Further, if one were to apply the facts of this case to the SOP, it would be evident that the Claimant has to date not, to paraphrase the requirements of the SOP, "supplied a form completed by a treating physician confirming that he or she recommended the claimed items". Finally, after its consultation with the HCV medical specialist (Dr. Garber), the Administrator did not obtain advice that the expenses claimed are "generally accepted by the medical community for the treatment of HCV". Therefore, on the specific factual background of this case, if the SOP was found to be binding and intra vires the authority of the Administrator to enact, a Referee would be left with no alternative but to conclude that as of this time, the Claimant has been unable to bring himself within the parameters of the Plan insofar as the expenses in question are concerned.

[44] It must be observed that "protocols", such as the Court Approved Protocol for Medical Evidence for Sections 4.01(1) and 40.1(2) of Article 4 (which involve claims for fixed payments and loss of income) are, unlike SOPs, court approved. That is, if the SOP in question had instead risen to the status of a court approved protocol, there could be (subject to a determination as to the timing of its applicability) no question as to its vires, applicability and binding authority on Referees.

[45] However, a careful analysis of the interaction of the foregoing provisions of the Settlement Agreement leads to the conclusion that the SOP must be characterized as subordinate to the Settlement Agreement. Therefore, I find that to the extent that the SOP purports to place a more onerous burden on Claimants than the already onerous hurdles set out in the Settlement Agreement and Plan, these more onerous burdens are ultra vires the authority of the Administrator under the Settlement Agreement and Plan and therefore not binding on a Referee.

[46] While the Administrator is given wide latitude in the methods it chooses to adopt in the administration of the Plan, it is not given the authority to develop SOPs that may have the effect of substantially narrowing or altering the application, spirit and intent of the Plan, at least without court approval to do so. One cannot infer into the Settlement Agreement or Plan an authority in the Administrator to create a result that albeit inadvertently has the effect of working an injustice to claimants.

[47] Moreover, the present language of the SOP puts in my view an inappropriate concentration of power into the hands of a tiny number of specialists. Given the tendency of the medical profession to guard its own turf and distrust holistic or alternative treatments advocated by other professions, it is safe to assume that it is highly unlikely that any such alternative treatments will be approved by HCV specialists. While it is not necessary to do so, it may be reasonable to draw an inference that if I were mistaken, and HCV specialists had in fact approved the costs of holistic or alternative methods for reimbursement under the Plan, I would have been advised of this by Fund Counsel, in response to my request for information in that respect.

[48] I sincerely doubt that this narrow approach is what either the litigants or the courts had in mind when developing the Settlement Agreement. It is difficult to infer that the framers ever intended a "one-size fits all" or "cookie-cutter" treatment regimen. One can only assume that the circumstances of the claimant were intended to be considered on the basis of all of the circumstances of that person - "the whole person". While these circumstances will vary from person to person, in this case the circumstances that merit consideration include the Claimant's medical history (including the rarity of his form of Hemophilia, that afflicts roughly 1% of the Hemophilia population), response to treatment, evidence of tolerance of such treatments by the medical community (if not outright enthusiasm in recommending it) and the claimant's performance when compared to statistical norms and other circumstances. While clearly expenses cannot and should not be approved based on a whim, impulse, craze or fantasy, at the same time, to apply a blanket policy to all claimants in this way can only work an injustice to some. In this case, the Claimant is the unwitting victim of this injustice. Particularly in a case such as this, where there is very strong evidence of favorable results of such treatment, to deny a Claimant simply because of the intransigence of the medical profession, is not conducive to achieving either justice for the Claimant or the objectives of the Plan. It is in the interests of the Plan and the Claimant that reasonable steps be taken to promote the Claimant's health and hopefully allay the progression of the virus to more advanced levels. From time to time, this may involve steps that HCV specialists would not endorse.

[49] While a Referee has no jurisdiction to enlarge the scope of coverage of the Plan, at the same time, having had the benefit of reviewing the evidence of this case, I urgently recommend that the Joint Committee review and reconsider the SOP in question. The Joint Committee is in the best position to decide what changes may be required, subject to court approval, bearing in mind the sufficiency of the fund, the objective of not overlooking the beneficial nature of such treatments on an individualized basis, as well as other criteria deemed relevant by the Committee.

[50] The Settlement Agreement creates Plans which are subject to evolution as the administration of the Plans unfolds. The Agreement itself contemplates changes. Hopefully, the Plan funding will allow sufficient flexibility to allow for a meaningful reconsideration of the SOP in question. If funds are available, a more generous, individualized and claimant-centred approach would be far more appropriate than the narrow parameters that are presently recognized by the SOP.

[51] In summary, where there is an irreconcilable conflict between the SOP on Uninsured Medical Expenses and Out of Pocket Expenses (Articles 4.06 and 4.07) and the Settlement Agreement and Plan Text, I conclude that the latter must prevail.

[52] Therefore, having concluded that the SOP in question is not determinative of the issues, it is now necessary to resolve them by the application of the Hemo Plan text itself to the evidence.

[53] Unlike the SOP, Article 4.06 does not require approval of an HCV medical specialist. Nor does Article 4.06 limit reimbursement of expenses to "medical treatment", as the SOP may arguably be interpreted to be restricted to. While still difficult to meet, the less onerous threshold requirements of 4.06 require only that the costs were incurred on the recommendation of the claimant's treating physician and that such treatment or medication were generally accepted due to his HCV infection. Again, the Plan does not specifically define either "treatment" or "medication".

4.06 Compensation for Uninsured Treatment and Medication

(i) On the facts of this case, did the Activator method treatments and nutritional supplements constitute "generally accepted treatment and medication due to the Claimant's HCV infection?"


[54] There are two issues that arise here. Firstly, were such treatments and nutritional supplements "generally accepted"? Secondly, if they were, were they "due to the Claimant's HCV infection"?

[55] Dealing firstly with the issue of whether or not such treatments were generally accepted, the Claimant's evidence in this respect is summarized at paragraphs 22, 25, 26 and 29. The Administrator's evidence is summarized at paragraphs 28 and 35. Further, Dr. Lynes testified that he was of the view that the Activator method was "generally loved" (accepted) by the medical profession because it has no risk and it works. As the Plan text does not define "generally accepted treatment and medication due to the Claimant's HCV infection", assuming the SOP to be ultra vires, I am satisfied that there is no requirement that this involves general acceptance by the small community of HCV specialists. The Claimant's Hemo condition, which Dr. Lynes characterized as being of the spontaneous variety, afflicts only 1% of the Hemo population. It is therefore not surprising that there is no widely applied methodology of treatment for all patients with a combination of this rare form of Hemo as well as HCV. On the unique facts of this case, although some of the summaries of positions taken by physicians are anecdotal or hearsay, there is an overwhelming indication that, while no doubt less than wholeheartedly endorsing such methods in writing, many physicians involved in the treatment and care of the Claimant were aware of and at least tacitly approved of or acquiesced in such treatment. While none of these medical doctors appeared to want to be explicitly on record as recommending such methods, clearly one can infer that they were impressed by the results they saw in terms of the Claimant's overall state of health. While Dr. Garber does not support the use of the Activator Method and agrees that it should not be included as part of a "standard patient care regimen," he was not asked to, nor did he conclude, that the Activator Method would not be appropriate or recommended in the individual circumstances of the Claimant, bearing in mind his unique medical condition, history, presentation and other circumstances. Dr. Garber's evidence on this point, presented as it was, is of limited assistance.

[56] Given that there is no definition of "generally accepted treatment and medication due to the Claimant's HCV infection" it is necessary to arrive at an operational definition, at least for the purposes of this claim. The inclusion of the word "Claimant" lends support to the conclusion that there must be some recognition of the Claimant's individual circumstances, as opposed to the HCV population generally. It is also appropriate to consider the response of all of the Claimant's health care providers as to the merits of such treatment for the Claimant.

[57] Fanciful or imaginary treatment and medication would not be open for consideration. At the same time, the Plan does not contain any requirement of unanimity among health professionals, or the medical profession, nor does it contain a requirement that peer review take place or clinical trials be conducted and approved with respect to all such treatments or medications in relation to the specific conditions under consideration.

[58] I do not wish to be interpreted to suggest that I have concluded that the Activator Method is a generally accepted treatment for all claimants who suffer from both HCV and Hemo. The issue of treatment and medication must be considered on a case by case basis. However, considering the Claimant's "spontaneous" Hemo and the range of physicians that have been aware of this treatment for this Claimant and who were evidently impressed with its efficacy for this particular Claimant, coupled with the compelling logic advanced by Dr. Lynes, all support the finding that such treatments fell broadly within the meaning of "generally accepted treatment and medication due to the Claimant's HCV condition" on the facts of this particular case. There was no evidence of any potential for harm caused by the Activator Method and a good deal of evidence as to the physiological basis and principles of Applied Kinesiology as to why it can be and in fact has been helpful to this Claimant. To ignore these highly beneficial results in these circumstances would require willful blindness to the facts. Activator treatments are not available in Saskatchewan as a result of a highly controversial and extensively litigated decision on that issue by the Chiropractors' Association of Saskatchewan. Saskatchewan is the only jurisdiction in North America where the Activator Method is not available. The evidence showed that the Claimant's family has undergone considerable financial expense and indeed significant hardship as a result of attending with the Claimant for Activator treatments in Alberta. They did not pursue such treatments and continue with them out of an irrational desire to travel long distances, disrupt the Claimant and the family and spend large amounts of money in the process. The Claimant's parents are reasonable and rational people who left no stone unturned in ensuring that if there was a reasonable method available that would be proven to assist the Claimant, it would be provided, even if it meant significant hardship.

[59] In short, subject to various other issues that still require consideration relative to the costs of the Activator treatments, on the facts of this case, I find that such treatments and some of the nutritional supplements are "generally accepted treatment due to the Claimant's HCV condition". I also find that they are "reasonable".

[60] In coming to this conclusion, I have carefully considered the submission of Fund Counsel to the effect that because the Claimant was receiving Activator treatments and nutritional supplements for his Hemo condition, long before he was diagnosed as being infected with HCV, this prevents the recovery of such costs. It is argued that these costs would have been incurred one way or the other and that the Plan is only intended to cover costs related solely to the HCV. On the facts of this case, I must reject this argument. The Hemo Plan by its very existence contemplates the co-existence of these two conditions. The evidence clearly showed that the Claimant was receiving treatment prior to being infected with HCV. However, Dr. Lynes testified that the Claimant's Hemo condition was well controlled and either minimal or perhaps non-existent by the time he was infected with the HCV and that the Claimant was by then essentially on a maintenance program. Thus, while the infection created a whole new set of problems, it also complicated and exacerbated the existing Hemo problems. Therefore, to deny compensation to a Claimant based on the difficulty in conceptually segregating the benefits of treatment as between the Hemo and HCV aspects of the Claimant's condition would be to ignore one of the primary purposes of the Plan. This is not to say that all costs incurred for prior Hemo treatments become costs related to HCV. This case must be decided on its own facts. The devastation the Claimant has undergone did not segregate the Hemo from the HCV in a mathematical manner. The whole picture must be considered.

[61] With respect to the issue of natural medications, the absence of clinical trials or peer review does not in my view preclude their consideration. However, unlike the evidence with respect to the Activator method, there was evidence from Dr. Garber indicating potential associated with these products for drug interactions and adverse affects. Unfortunately, Dr. Garber did not elaborate on the nature and frequency of such adverse affects or which of these particular products may have been so associated. Dr. Garber did not have the benefit of hearing the evidence from Dr. Lynes and the evidence tendered on behalf of the Claimant and was relying on more general principles. Further, there was nothing from either the evidence of Dr. Lynes or the evidence introduced by the Claimant to suggest that the Claimant had either suffered or was at risk to suffer any adverse reactions from these products. I have carefully reviewed the product information contained in Exhibit 688. Also, I note that there does not appear to be any evidence from Dr. Lynes that suggests that Calcium is indicated in particular for an individual suffering from HCV. The evidence with respect to the alleged benefits of Adrenal specifically in relation to HCV was sketchy. As to Calcium, it is not necessary for me to decide whether this product is "generally accepted medication", because the evidence did not support a finding that it was necessitated "due to the Claimant's HCV condition". In the result, I must therefore reject the claim for reimbursement with respect to Calcium in this case. However, subject to further consideration based on the issues of segregating the requirements for HCV (which are compensable) from those for Hemo (which are not), the claims for desiccated liver and ISB and Adrenal may in part be eligible for consideration.

(ii) On the facts of this case, were the costs "incurred on the recommendation of the Claimant's Treating Physician"?

[62] Again, there was a significant amount of anecdotal evidence lead at the hearing, which counsel for the Administrator did not object to. This is summarized at paragraphs 22, 25 and 29. This evidence amounts to a recommendation from one of the Claimant's treating physicians, including Dr. G. If I am wrong in this, I also rely on the letter from Dr. Nathan Kobrinsky, Professor, Section of Haematology, Department of Pediatrics, RUH, dated October 3, 1989 to Dr. Lynes, being Exhibit 2. This indicates that for all reasonable intents and purposes, Dr. Kobrinsky recognized Dr. Lynes as the treating physician of the Claimant and to an extent appears to have delegated this task to Dr. Lynes. On the specific facts of this case, while not a medical doctor, Dr. Lynes was in this respect acting either as a surrogate for or delegate of Dr. Kobrinsky or alternatively as the Claimant's Treating Physician. There is no question that of all of the Claimant's health professionals, Dr. Lynes is the one with the most history, experience with, hands-on and familiarity with the Claimant's condition. While I do not wish to be interpreted to suggest that this rationale would apply in other cases, on these unique facts I conclude that these costs were incurred on the recommendation of the Claimant's treating physician.

(iii) Over what period of time may the costs be claimed for?

[63] In relation to the period of time over which such expenses may be claimed, Fund Counsel argued that the Claimant was not diagnosed as being infected with the HCV until May 17, 1995, when the Red Cross provided confirmation that the Claimant had received Cryo that was tainted with the HCV. Fund counsel argues that the Claimant is not entitled to claim for pre-diagnosis expenses. I agree with Fund Counsel that no reimbursement can be made for expenses incurred prior to diagnosis. However, the issue of when the diagnosis was made in this case requires consideration. The Claimant's father, who acted as the Claimant's advocate throughout, argued that while it was not known then as HCV, Dr. Lynes did diagnose the Claimant as suffering from a hepatitic condition dating back to 1988, long before 1995. Dr. Lynes described the Claimant as a "living banana" when he saw him shortly after he had received Cryo in April 1988. Dr. Lynes confirmed that he did in fact treat the Claimant for liver issues that he associated with such a condition. Under the circumstances, the Claimant need only establish that the diagnosis was probably made earlier than the Red Cross documentation confirmed. While Dr. Lynes' suspicions were evident shortly after the receipt of Cryo and an exact diagnosis date was not provided, it would be safe to assume that by January 1, 1989, Dr. Lynes had probably made the diagnosis. The Claimant is therefore eligible for compensation from this point forward.

(iv) What costs may be eligible for compensation?

[64] The Plan does not recognize compensation for lost wages based on the Claimant's present disease level, nor are such wages included in the definition of "expenses". Therefore, this claim, in the sum of $24,320.00, together with the Student Loans claim, in the sum of $15,125.11 must be rejected. This leaves the matter of expenses associated with Chiropractic Treatment ($31,949.14) and nutrition expenses ($15,912.34) to be considered.

[65] Dr. Lynes' chart indicates that the Claimant attended on him 30 times between July 3, 1986 and December 23, 1997, or an average of 1.7 visits a month. Significantly, there were no treatments after December 23, 1987 until after the Claimant received Cryo, the following treatment having taken place on May 5, 1988. This further supports Dr. Lynes' testimony to the effect that the Claimant's Hemo condition was either minimal or non-existent until the Claimant was infected with HCV. From that point forward there was an increase in the number and frequency of visits. For the roughly 8 month period from May 5, 1988 until the end of 1988, the Claimant attended 24 times, or an average of 3 times per month. Over the following years, there were the following attendances:

 
Dr. Lynes
Dr. Powers
1989:
26
 
1990:
33
 
1991:
12
 
1992:
21
 
1993:
13
4
1994:
13
14
1995:
4
3
1996:
3
3
1997:
2
2
1998:
2
 
1999:
8
8
2000:
2
 
2001:
0
 
2002:
3 (to March, 2002)
 
Totals:
142
34 = Total of 176 visits

[66] It is impossible to state with precision which of the attendances were Hemo related and which were HCV related. At times, the Claimant would stay overnight and have at least 2 adjustments when he attended at Stettler and Medicine Hat. I do find that at least 50% of the treatment costs from 1989 forward were HCV related. Also, I note that the Claimant's father's insurance plan provided for reimbursement of the cost of the chiropractic treatment itself, but not for the travel and accommodation costs incurred. The Claimant started treatments with Dr. Powers in April, 1993, so it is safe to infer that the Claimant's family had moved to its present community by then. Prior to then, the return distance between their community and Stettler was roughly 700 kilometers. After that time the return distance between their community and Stettler was roughly 1360 kilometers. The return distance between their new community and Medicine Hat is roughly 760 kilometers. While I can totally appreciate the reason why the Claimant's family continues to occasionally travel as far as Settler to see Dr. Lynes, and while it is reasonable that should they choose to do so, the Plan would only be responsible for the costs for them to attend as far as Medicine Hat, where such treatment is also available. There were 100 trips to Stettler to the end of 1993. There were 55 trips to Medicine Hat or Stettler after the Claimant's family moved to their present residence. For lack of a more imaginative method of dealing with these expenses, I conclude that there were 100 trips at 700 kilometers per trip and 55 trips at a deemed amount of 750 kilometers. I conclude that a total of 111,250 kilometers were incurred to seek Activator treatments. Out of those, I conclude that 50% or 55,625 kilometers were attributable to the Claimant's HCV condition. While mileage rates have increased steadily over this period of time, an average rate of $.20/kilometer would be appropriate. This amounts to $11,125.00. Further, taking an average hotel bill of $50 per night (although these have increased in recent years) for 155 trips amounts to a further sum of $7,750. I conclude that it is fair that ½ of that cost be considered to be HCV related, or $3,875. In total, I award $15,000.00 for mileage and accommodation costs incurred to obtain chiropractic treatments due to the Claimant's HCV infection, to March, 2002.

[67] The same difficulties are present when attempting to be mathematically precise in determining which of the supplements may be considered to be HCV related. Bearing in mind the finding that some of these items have not been proven to date to be HCV related at all (e.g. calcium) the evidence on Adrenal was sketchy and the others are not broken down with precision between Hemo and HCV, I find that it would be appropriate to conclude that something less than 25% of the total costs claimed would be appropriate. I conclude that $4,000.00 is fair.

D. Decision

[68] Upon careful consideration of the Settlement Agreement, Plan, Court orders and the viva voce and documentary evidence tendered, I find that the Administrator's decision to deny the Claims for lost income and student loan costs was justified and correct. The Appeal in respect to those areas of the claim must be dismissed.

[69] The Claimant's appeal is allowed in respect of the costs to obtain Activator treatments and nutritional supplements to the extent that the Administrator is directed to provide the Claimant with the following amounts, covering the period of time up to today's date:

Mileage to obtain Activator treatment:
$11,125.00
Motel costs to obtain Activator treatment:
$ 3,875.00
HCV related nutritional supplements:
$ 4,000.00
Legal report (Dr. Lynes):
$ 107.00
Total:
$19,107.00



[70] I must stress that I have no ability to deal in this decision with how future claims of this nature for this Claimant should be addressed. My decision on the issues of physician's referral and generally accepted treatment apply to the expenses claimed to date. The Administrator will have to consider any further claims for similar expenses based on the evidence that exists at the time of any further applications and consideration thereof. There may be further guidelines developed for the Plan, particularly with court approval, to clarify or perhaps limit what items can be claimed for and what levels of proof may be required. At the same time, the Claimant may find that gradually, physician support for the Activator Method of treatment and nutritional supplements with respect to his condition, in his circumstances, will be more explicitly forthcoming than it has been to date.

[71] I would like to thank and commend the Claimant and his representative as well as Fund Counsel for their capable assistance, courtesy and patience throughout.

Dated at Saskatoon, Saskatchewan, this 10th day of March 2003.

________________________________
DANIEL SHAPIRO, Q.C.
Referee

 

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