One of our 1994 initiatives was spectacularly successful and extended well
beyond Parkinson's. The cost of medications is a major social problem that,
ironically, becomes more serious with each major discovery by the
pharmaceutical industry. As the technology for discovery becomes more
expensive, so do the drugs. Consequently, without a good drug insurance
programme or government assistance programme, the financial implications of
chronic illnesses to individuals and families can be catastrophic.
 In Ontario at this time, the Drug Benefit Plan, one of the cornerstones of
the Provincial Health Plan, was essentially a list, known as the Formulary,
of drugs which could be provided free of charge to Seniors and to people on
Social Assistance. Although the Ontario Drug Benefit Plan, as it existed,
did provide coverage for a wide range of medicines, it did not provide
secure coverage for people who had chronic diseases, and it gave no help to
people of limited means. Poorer families were having to go on social
assistance in order to be funded for the necessary medications for long-term
diseases and medical conditions - everything from AIDS to renal failure. And
they were losing their dignity in the process. The inequity was tremendous,
because the cost of drug therapy varied so much for different conditions.
For some medical conditions, the cost of regular drugs was crippling even
for people in the highest tax bracket.
 For Parkinsonian's, the important medications are controlled release (CR)
and sustained release (SR) drugs some of which were on the Formulary. One of
them, Sinemet CR (which I used) was not on the Formulary as it was a fairly
new adaption of an existing drug. Seniors and those on welfare could get
Sinement CR for free, but only after having obtained special permission from
the Ministry of Health. This was routinely granted, but only after a lengthy
and frustrating process.  At a meeting of the Foundation Board, we heard
that the Ministry of Health was now considering removing Controlled Release
and Sustained Release medications altogether. Some had already been taken
off the list on the grounds that they were inefficacious. Frank Roth, the
bubbling, witty entertainment lawyer who was President of the Foundation,
had read my Does Toronto Have a Soul speech. He came to me and in his
comical, mock Man From Uncle voice said "Your assignment, should you accept
is to devise a drug plan which will cover all Parkinsonians."
 I accepted with alacrity and with no realisation of what a huge task it
was. In approaching the problem, we had to recognize that, with the
province's huge financial deficit, the Minister of Health had the unenviable
task of having to bake a smaller pie and then carve it up amongst the
ministry's many supplicant.s  For the first time the health budget was being
reduced. It was also obvious that the problem of drug costs was not just
limited to Parkinsonians.
 Our goal was to devise a practical proposal for a drug plan for chronic
illnesses which we could put to the government. It was ambitious, but the
need was great. We had to do more than bewail the problem. We knew that it
was unrealistic as well as perhaps undesirable to demand free access to all
drugs on demand. We were looking for a formula that combined private
co-payment with government funding.
  We involved the Toronto Chapter's very capable Executive Director Maggie
Wheelock and the whole Executive Committee. Most importantly, in order to
make sure we stayed on the rails and came up with a practical proposal we
could put to the government, we established a review committee was formed
made up of tax, medical, and health care experts. It included Dr. Anthony
Graham, Chief of Cardiology, The Wellesley Hospital; Dr. Anthony Lang,
Director, Movement Disorders, The Toronto Hospital; Robert Lindsay, Senior
Tax Partner, Osler Hoskin Harcourt; Thomas McDonnell, Executive Director,
The Canadian Tax Foundation; and Trevor Williams, then the Chief Executive
Officer, The Parkinson Foundaton of Canada. The key member of the committee
was Michael Decter, former Deputy Minister of Health for Ontario. The Review
Committee was essential in ensuring the practicality of our proposal: many
of its suggestions were incorporated in the final document.
 We had to face an important issue at a meeting of the Review Committee in
September. The AIDS Committee of Toronto was the only other group which had
seriously addressed the issue of long-term drug costs. We had invited
representatives of the AIDS Committee to join although we knew that they
were philosophically opposed to the notion of co-payment. The AIDS
representatives were of the view that everyone has as of right access to
needed medications free of charge. We clashed at the meeting, but it was a
polite disagreement.
 The challenge was to devise a plan that is universal, i.e. available as a
right to all residents of Ontario, while at the same time being progressive,
i.e. the private co-payment would increase relative to the individual's
income. After many drafts we arrived at a plan that satisfied the Review
Committee. Here is a simplified example of the proposal:

Net Income, family of 3:  $20,000 $40,000 $60,000
Annual prescription cost: $5000 $5000 $5000
Prescription cost as % of
 income:    25%  12.5% 8.3%
Proposed co-payment:   $350  $1,239 $2,139
Co-payment as % of income: 1.8%  3.1%  3.6%

  We decided to present it at the Annual Meeting of The Foundation in
Montreal in September, 1994. I made the presentation with the title
"Restoring Dignity".
 After I finished, I was walked back to my seat and wondered why people were
standing up. Frank Roth, the President, said "Bill, they are giving you a
standing ovation. This has never happened before."
 Why the standing ovation? Our presentation gave Parkinsonians hope, hope
that the Foundation was looking out for their interests. I then moved,
seconded by David Black, a past president, that my speech become Foundation
policy.
 A day later, through Michael Decter's good offices, I was invited to
participate in a consultation meeting to consider our proposal which was
sponsored by the National Pharmaceutical Strategy Directorate of Health
Canada. It was a great success, but we were not optimistic about its chances
of being adopted by the Ontario government in the near term.
 To the astonishment of most of us, only a couple of months later, on
December 1, 1994, the Premier of Ontario, Bob Rae, announced the
government's Trillium Drug Plan, which was modelled in all important
respects on "Restoring Dignity."
 At a press conference in Toronto, the Minister of Health, Ruth Grier,
announced the plan in detail, including the size of the co-payment. I was
invited to make a statement at a the conference. After the questions were
over, Mrs. Grier publicly thanked me for the impact I had on the plan's
design, and joked, "it's not very often that a lifelong Tory like you is the
author of an NDP program."
  The Trillium Drug Programme as introduced by Premier Rae's NDP government
still had a problem in that the deductible structure or the co-payment
provisions, were not progressive enough. The break points at which the level
of co-payment changed were only three and kicked in at lower rather than
higher incomes.
 We urged the new Conservative government of Mike Harris to make the plan
more equitable so that the primary beneficiaries will be those with low
incomes by using break points which would result in lower co-payments for
low income levels and higher co-payments for those with higher incomes.
These recommendations were accepted by the Government.

Our experience with the Trillium Drug Plan really began the Chapter and
Foundation leadership in advocacy matters on issues that concern all
Parkinsonians. The process taught us a valuable lesson. In dealing with
government, the approach should not be prescriptive, telling the government
in no uncertain terms what to do. You are more likely to get a favourable
hearing and to be successful if your proposal is descriptive of the problem,
offering alternative solutions, allowing the government to take its own
initiative.
 For me, the experience of working on the Trillium plan and other Foundation
activities has been a tremendous opportunity. I have become virtually a
professional Parkinsonian, putting my experience of my years with
Parkinson's in combination with my business skills. My goal in this work is
to make the Parkinsonian experience easier for those who will come after. It
has been part of the process of learning and of intellectual and spiritual
freedom that I have called my adventure with Parkinson's.