Recently, the New York State Senate and Assembly passed a kidney donor reimbursement law stemming from an advocacy campaign begun about six years ago by my nonprofit Waitlist Zero . Some press coverage/op-eds about the campaign here, here, here, and here. Abie Rohrig wrote a brief EA Forum post about it here. (Thanks to all NYers who wrote their legislators!)
A couple people had suggested I post a brief narrative of the campaign for the forum as potentially of interest to people doing legislative advocacy. I sadly haven't had time to write that up (but hope to do so in the future), but a few years ago I wrote up a fairly comprehensive playbook for state-level legislative advocacy for kidney donation (including links to a large number of sample documents and emails) that I think may be useful background for legislative campaigns in other areas. Here it is.
I have copied the exec summary below for reference, though the formatting in the original is much better. I'm happy to answer questions from people who find this resource useful for an advocacy campaign they're developing.
The transplant field has long hoped to relieve donors of the burden of spending money
to save a life. Unfortunately, progress has been slow at best. State legislation could fix
this problem by reimbursing donor expenses and improving transplant education. But
advocacy can be daunting because most of us lack lobbying experience. This step-bystep
guide makes passing a bill easier and provides sample materials based off a
campaign in New York.
Phase 1 (October to January)
1. Organize Supporters: Convene transplant, donation, and patient stakeholders
who will support the campaign by: (a) endorsing the bill; (b) asking their members to
contact legislators; and (c) meeting with lawmakers and public officials in a formal
capacity. These supporters may also support the campaign financially.
2. Recruit Legislative Champions: Identify past supporters of transplant
legislation and chairs of key committees like Health or Ways and Means. Meet with
them to discuss the legislation and gauge their interest in championing it. Make sure
to pick a legislator in the majority in each house to introduce and champion the bill.
3. Draft the Legislation and Supporting Materials: Put together the final text of
the bill. Write up supporting materials to explain the bill to representatives,
constituents, and media outlets. Gather endorsements for a letter of support.
(Models of each of these documents are included here.)
Phase 2 (January to April)
4. Persuade Legislators to Co-Sponsor: Once your bill has been introduced,
recruit other legislators to register public support of your bill as co-sponsors. Put
together a “Lobby Day” of meetings with senior legislators or members of key
committees to ask for their support. Have your legislative champions circulate letters
requesting their colleagues sign on as co-sponsors of the bill. Ask your stakeholders
to contact legislators whose communities they serve.
5. Mobilize Your Constituents: Representatives try to do what their constituents
tell them. Ask the people who work at and are served by your stakeholder
organizations to ask their legislators to support the bill.
6. Contact Press: Public attention is critical. Issue press releases and contact local
and state-wide news to secure positive coverage for the legislation.
Phase 3 (April to June)
7. Meet with Key Officials: Identify the obstacles blocking your bill. Does the
Governor’s office or Department of Health need to sign off? Is it stuck in committee?
Set meetings with the key decision-makers. If a meeting’s hard to get, have your
stakeholders, legislative champions, or co-sponsors support your request.
8. Follow Through: Persistence pays off. After your first time running through the
steps above, you’ll be in a stronger position to recruit more legislators and get more
press coverage. Each supporter you recruit can help build support among others.
9. Assess Progress and Renew Efforts: Most bills take more than one year to pass.
When the session’s over, see where you are and what needs to be done next year.
Repeat the process as necessary.