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
|