PARKINSON ACTION NETWORK
Action Advisory
THE 1997 LEGISLATIVE CAMPAIGN: WHERE WE ARE AND HOW YOU CAN HELP
As you know, the Udall bill to expand Parkinson's research funding (S. 684
and H.R. 1462) passed the Senate unanimously on September 26, 1996, but
failed to reach the House floor for a vote. As we head into the new year,
here's an update on efforts to introduce the Udall bill in the upcoming 105th
Congress. Here also are actions that you can be doing now and into 1997 to
enhance our chances for prompt consideration and passage.
What Are We Doing Now?
In preparation for introducing the Udall Parkinson's Research Act in the
105th Congress, we are working in consultation with local, regional and
national Parkinson's groups to coordinate the most effective possible
strategy to ensure the bill's passage. Several important steps of this
process are currently underway.
The Search for Lead Sponsors:
The first step is identifying which Members will introduce the legislation in
the House and Senate, Since the election, Members of Congress have primarily
been focused on internal matters: electing their leaders and determining
committee assignments for the upcoming session. Now that process is almost
complete, and
they are starting to focus on the 1997 agenda.
On the House side,
the lead bipartisan sponsors from the 104th Congress - Congressman Fred Upton
(R-MI) and Henry Waxman (D-CA)
- are both returning to the House Commerce Committee, and are ready and
willing to reintroduce the bill. Since the Senate has lost Udall bill author
Mark 0. Hatfield (R-OR) to retirement, a new Republican is being sought
rejoin with returning Democrat champion Paul Wellstone (D-MN). Senior
Members of the Senate Labor and Human Resources Committee are obvious
candidates for this role, but any Senator combining respect of colleagues and
the passion and ability to lead this important charge would be an asset, and
discussions are, ongoing with several possible candidates. (See below for
your role in this process.)
Finalizing the Udall bill's Language:
While the main purpose and structure of the Udall bill will remain the same -
authorization for the NIH to fund $100 million in direct Parkinson's research
- the bill's exact language needs to be revised in some instances to
eliminate outdated language, and to streamline and clarify the intent. We
are working on this with the bill's primary sponsors.
Preparing a timetable for introduction:
Once the lead sponsors and the language of the bill are finalized, the date
of introduction can be set, with time provided beforehand to sign up as many
Members as possible as "original co-sponsors." Our Congressional leaders will
send a "Dear Colleague" letter out to the entire Congress announcing the
planned introduction of the bill and requesting that Members sign on as
co-sponsors. At that point, our community can greatly influence the size of
the original co-sponsor list by contacts with Members urging them to sign
on.(More on this below!)
When Will It Happen?
Although we do not control the Congressional timetable, and it will be
subject to other changing events, we are pushing for the earliest possible
introduction. We hope to have the lead sponsors and bill language determined
by early January. If so, we will push for the following timeline:
Early January: Dear Colleague letter from lead Udall sponsors to all Senate
and House Members announcing introduction of the bill and seeking
co-sponsors.
Late January/February: Introduction of the bill, with a press conference and
other media efforts to attract attention and support.
What Can You Be Doing Now?
There are many things you can do before the Udall bill's introduction and
thereafter to enable us to "hit the ground
running" and enhance prospects for rapid action. We are coordinating efforts
with national Parkinson's foundations - the APDA, NPF, PDF, PI and UPF - and
many regional groups. Whether you are working alone or with a support group,
or you are a Parkinson's physician/scientist, here are some of the ways you
can help the "push to passage":
Review your State's Congressional delegation.
Identify, new Members and determine whether returning Members were Udall
co-sponsors in the 104th Congress. (PAN can provide you with this
information.) Then plan a strategy for signing on as many cosponsors as
possible.
Make exploratory contact (or renew old contacts) with your Senators and
Representatives to determine if they will co-sponsor. If so, find out if they
will play a larger leadership role. You can play a pivotal role in pushing
them
to do as much as they can. Any Member, however senior, whatever his/her
committee status, can help.
You can develop a relationship with your legislators through several means:
Meet with your Senator/Congressman, or in-state regional staff at field
offices, town-hall meetings or other public events.
Arrange to see him/her at field offices, town hall meetings or other public
events.
Invite them to your support group, clinic or research facility.
Contact their Washington health staff by phone or letter.
Urge supportive Democratic Members to work on the Clinton
Administration.
If your legislators are Democrats and already supporters of the bill
encourage them to contact President Clinton and other Administration
officials to push for immediate Congressional consideration.
Plan a local and/or regional action agenda. You might consider a local or
regional meeting to bring together
scientists and Parkinson's advocates and coordinate a focused effort. (For
example, the APDA 's Arizona Chapter
and Arizona Parkinson's Advocates recently held such an event, using a
blue-ribbon scientific panel and local and
national advocates. For more information about this event, contact Bob
Dolezal at (520) 299-1030 or email him at
[log in to unmask] You can also call APDA Information and Referral Center
Coordinator, Cynthia Holmes, Ph.D., at (520) 326-5400.)
Contact local neurologists and Packinson's researchers.
Explore ways for them to assist your advocacy efforts.
Determine the advocacy materials you and your group need and plan how to
raise the money to pay for them.
(For example, in 1996, 84,000 of the "This is for you, Mo " postcards were
printed and distributed to individuals and support groups across the
country.)
Think creatively about education and advocacy tools.
Anyone can initiate great ideas like the Mo Udall postcards. Coordinate your
efforts with your support group or call us for help.
Plan to attend the 1997 Washington, DC Public Policy Forum which is scheduled
for late May. Talk to your support group about raising money to sponsor your
trip.
Think about your own lobbying trip to Washington, DC.
If you can get there, we will provide someone knowledgeable about our
strategy to accompany you or your group to meet with your Senators and
Representatives.
Think about ways you can get Parkinson's in the news.
Read Bob Dolezal's Arizona Star column in the December Action Reporter as a
print example; or interest a local TV, radio or print reporter in your
personal story and the Udall bill.
Provide data on the cost of Parkinson's. See below for ways you can
participate in the "Cost of Parkinson's" initiative
As soon as further information on sponsors and timing of Udall bill
introduction is available, we will let you know. If you have questions,
comments or useful information, please do not hesitate to contact us at
(800)850-4726, or email us at [log in to unmask]
Remember:
The new Congress is already highly supportive of expanded Parkinson's
research funding, they need to be reminded, and pushed to make it a priority!
- 55 out of 100 Senators are returning co-sponsors.-
205 out of 435 Representatives are returning co-sponsors.
Parkinson's Action Network
800-850-4726
Headquarters:
818 College Ave., Suite C
Santa Rosa, CA 95404
phone 707-544-1994
fax 707-544-2363
email: [log in to unmask]
Washington, DC office
601 13th St. NW., Suite 310
Washington, DC 20005
phone 202-628-2079
fax 202-628-2077
Brad Udall, Chair
Joan I. Samuelson, President
John L. Dodge, Treasurer
Bonnie K. Mioduchoski, Administrator
Michael Claeys, Community Coordinator
The Action Reporter is a free publication of the Parkinson's Action Network,
a non-profit charitable foundation for a cure for Parkinson's. Use of this
material in other publications is welcomed. We ask that the Network be
identified as the source of the material, and notified how, when and where
the material is used. Simply call 800-850-4726
