>     THERAPY ACCESS:
> A MULTI-FACETED, MULTI-SECTOR PROBLEM
>
> Simply put, the therapy access problem arises whenever a patient, for
> whatever reason, is denied access in a timely and convenient manner to a
> therapy which has been proven efficacious and effective. There are a number
> of ways that access may be denied:
>
> . location . physician . regulatory
> . institutional   . staff shortage . community standards
>
> LOCATION Access to a therapy may be denied because he area in which the
> patient lives does not have the necessary health care professionals to
> administer the therapy. The 'missing' professional could range from a
> registered nurse to a vascular surgeon. The problem is typically solved by
> arranging for transportation to a venue that has the necessary personnel.
>
> PHYSICIAN A physician may deny a patient access to a therapy for a variety
> of reasons, ranging from his belief that a therapy is totally inappropriate
> to his belief that the therapy is wrong for that articular patient at time.
> This problem is usually resolved by 'doc-shopping', i.e., the patient shops
> around for a doctor who will prescribe/administer the therapy.
>
> REGULATORY This can be the most vexing source of access denial. Once a
> therapy enters the regulatory process, it can take years for it to be
> approved for human use. The reasons for this range from bureaucratic
> inertia to the therapy provider not having provided adequate data and
> information. There should be incentives, or more properly disincentives for
> therapy providers whose submissions have sloppy data, inadequate
> explanations or incomplete explanations. The bureaucracy could be made less
> inert through the judicious use of writs of mandamus and certiorari to move
> the process along.
>
> Often, when one regulatory hurdle is cleared, another is put up which
> raises the bar even further. For example, when a drug is approved by the
> Health Protection Branch in Ottawa, the therapy does not automatically go on
> the formulary, as the list of drugs approved for reimbursement is known.
> This may be denied in a number of ways;
>
> simple refusal
> one on, one off., i.e., to secure a new listing, a manufacturer must
> withdraw a listing
> there may be a freeze on new listings
> the manufacturer may not have made a complete submission
> there maybe a cap on formulary expenditure
>
> Whatever the ostensible reason may be, there is no doubt that therapy
> access is being denied. Reie may be sought through he courts using writs,
> or through the political process. The political process has been used to
> great advantage by the AIDS and breast cancer groups.
>
>      INSTITUTIONAL The institutional barriers to therapy access are bound up
> in a potent cocktail of competition, prejudice and money. Hospital
> administrations and boards have their own biases which are difficult to
> dislodge. For instance, if a hospital C.E.O. is a physician his institution
> is likely to reflect his specialty - if he has one - and the treatment
> preferences he had while in active practice. He may not have had the time
> to keep up with practice developments. Certain service heads may be
> particularly effective/ineffective in putting forward their case for funding
> or O.R. time and/or funding.
>
> STAFF SHORTAGE We live in an imperfect world, without Adam Smith's invisible
> hand to guide us. Thus, a shortage of neurosurgeons will take years to
> rectify itself. Certain procedures may take a long time to perform and not
> carry a fee that adequately compensates the surgeon; consequently, they are
> infrequently performed, regardless of the relief that would result from a
> successful procedure.
>
> COMMUNITY STANDARDS The issue of sexually transmitted diseases and the bias
> against them in the early 1980s is a good example, not only of therapy
> access denied, but of barriers to the development of new therapies. When
> all the fallacious arguments are stripped away, the simple fact is that
> HIV+/AIDS is a disease that affects relatively few people in North America.
> For example only +/-43,000 have tested HIV+ in Canada, while there are
> +/-100,000 Parkinsonians. Hence the therapies are very expensive because R
> & D costs must be spread over a relatively small base.
>
> A SOLUTION TO THE PROBLEM When therapy access is denied, the consequence is
> pain and suffering. The public, and the medicrats and politicians must be
> made aware of and sensitized to the unnecessary agony that patients undergo
> when access to therapy is withheld.
>
> The HIV+/AIDS model is the one most likely to succeed. Adapting it to
> Parkinson's Disease will not be as difficult as it might seem. Thanks to
> MJF, Parkinson's is viewed with genuine sympathy by the public.
>
> ACTION PLAN
> 1. ANY AND ALL WHO ARE INTERESTED E-MAIL ME AT "[log in to unmask]"
>
> 2. Develop a communication strategy
>
> 3. Support groups welcome as participants in
>
> 4. Therapy
> Access for
> Parkinsonians
>
> LET'S GET THE BALL ROLLING!
>
> Bill Harshaw
>