Lymphedema Advocacy Group State Team Handbook (Last Updated 2/13/2014) www.lymphedematreatmentact.org. info@lymphedematreatmentact.org 1
Table of Contents General Information I. About the Lymphedema Advocacy Group (pg 3) II. What is the Role of our State Teams? (pg 3) III. Who May Join our State Teams? (pg 3) IV. How Are the State Teams Organized? (pg 4) V. How Should I Use This Handbook? (pg 5) Advocacy Guidelines VI. Grow Your State Team (pg 6) VII. Raise Awareness (pg 7) VIII. Write, then Call your Members of Congress (pg 8) IX. Scheduling Meetings at District Offices (pgs 9-11) X. Advocacy Trips to Washington DC (pg 12) 2
About the Lymphedema Advocacy Group The Lymphedema Advocacy Group (LAG), founded in 2010 by Heather Ferguson, is an all-volunteer organization made up of patients, caregivers, healthcare professionals and industry partners. Our mission is to advance lymphedema care in the United States by advocating for improved insurance coverage for the diagnosis and treatment of the disease. For this purpose we work to increase awareness of and education about lymphedema among lawmakers, insurance providers and other relevant entities. We support attempts to improve insurance coverage at both the state and federal levels and encourage all members of the lymphedema community to become active participants in this process. Current board member biographies can be read on the Advocacy Team page of our website. What is the Role of our State Teams? The overarching goal for each team is to secure all members of Congress in that state as cosponsors of the Lymphedema Treatment Act (LTA). This is a grassroots effort and our ability to effect change lies in the hands of ordinary citizens like you. Our aim is to empower state team members by providing necessary guidance, ideas and support, while also giving teams the freedom to self-direct and work toward this goal in the manner that suits their members and geographic circumstances best. Who May Join our State Teams? Anyone who cares about advocating for lymphedema patients and wants to support our efforts is eligible to join. We have state team members from all walks of life, ranging from teenagers to senior citizens. Whether your life has been touched by lymphedema as a patient, family member, friend, doctor, therapist, fitter, etc., you can be an effective advocate for this cause. No experience is required and the time commitment can depend on your interests and availability. 3
How Are the State Teams Organized? When you join your state s team you will give us some basic contact information. We will use that to introduce you, via group email, to your teammates. That introductory email will include an attached contact sheet (name, email, phone and address) for all current state team members. New team members should ask their fellow members about the teams current distribution of responsibilities, and if you are interested in serving in one of the below capacities please make that known. We suggest teams organize regular conference calls amongst their members as a way of working together across distances. There is a free service available at https://www.freeconferencecall.com. This is the same conference call service that the LAG board uses, and anyone can set up an account very easily. Because each state team is unique, we encourage your teams to find what division of responsibilities works best for you, taking into consideration the size and complexity of your state. We ask you to tap each of your members individual strengths, and find how you can most efficiently and effectively work together. Please keep before you this unified vision: Each state team must garner the support of your state's members of Congress in order for the LTA to be passed. Below are the two functional leadership roles your team needs to incorporate into your structure in whatever way you judge best. Communication This individual will be referred to as the team s Liaison. He or she will help with the following: communication and coordination of advocacy efforts among members; tracking which Congressional districts are sufficiently represented by team members, and which districts are not, in order to determine which geographic areas need the team s focused recruiting effort. Strategy This individual will be referred to as the team s Strategist. He or she will familiarize himself or herself with each US Congressional district in the state, using a map such as this one to get oriented (https://www.govtrack.us/congress/members/map), and each corresponding member of Congress, by looking at their websites. This awareness will help lead the team in their efforts to win the co-sponsorship of every member of Congress representing their state, giving first priority to Key Members of Congress in leadership or who sit on a committee that will hold a hearing on our bill. These Key Member districts are denoted in red on your team s contact sheet. 4
Depending on the size of your state, it is conceivable that one person could fill both roles. On the contrary, in more populous states, it might be necessary for multiple people to handle each function, either by forming a committee to share the responsibility, or by dividing the state into regions or by Congressional Districts. Teams may also appoint other positions within their team as they see fit, and/or expand on the responsibilities described above. Anyone who has a designated responsibility should notify us of such by emailing us at info@lymphedematreatmentact.org. Keeping us informed of your teams division of responsibilities will enable us to best support and assist you. How Should I Use This Handbook? There is no one-size-fits all approach, but the intent of this handbook is to provide individuals, and teams as a whole, a resource from which they can draw inspiration and direction to launch their grassroots advocacy efforts. This document will be updated continually, and should not be considered an all-inclusive list. The LAG board will convey to team members, via email communications, what the priorities are at any given time. Team members should make every reasonable effort to participate in whatever the current project/priority is. However, simultaneously, or in between these LAG-directed tasks, team members should be self-directed and working on other advocacy efforts as their schedule permits, using the collection of Best Practices to follow. As a member of your state s team you will be helping us to step up our ground game, extend our reach for the Lymphedema Treatment Act and help the millions of Americans with lymphedema. We are grateful for your participation! 5
Lymphedema Advocacy Group State Team Best Practices Grow Your State Team The goal for team membership is to have at least one person on your team from each Congressional district in the state. Ideal sources for locating new members include: support groups, lymphedema therapists, hospitals and clinics with lymphedema departments, garment fitters and providers, local cancer support groups, oncology groups, etc. While every new team member is valuable, constituents living in the districts of certain key members of Congress are particularly important. These Key Member districts are denoted in red on your team s contact sheet. Refer those who might be interested to the State Teams page of our website, at http://lymphedematreatmentact.org/join-an-advocacy-team-in-your-state/, where they can access more information, including this Handbook. Remind potential members that the time commitment and level of responsibility is variable, so even if they can only do some of the tasks outlined in this handbook we still welcome their help in whatever capacity they can participate. New team members must join by completing the sign-up form accessible via the State Teams page of our website; they cannot simply verbally join the team. Please remind them that they must sign up to be in our database and receive state team communications. Anyone without Internet and/or email access can contact us to discuss alternative means of staying connected. If a prospective member has a question to which you do not know the answer, direct them to the Contact Us form on our website, or have them email us at info@lymphedematreatmentact.org. 6
Raise Awareness about the Lymphedema Treatment Act Word of mouth - talking to your family, friends, colleagues, etc. Use the Tell-A-Friend form on our website - http://www.capwiz.com/lymphedematreatmentact/taf/. Social media - Twitter (https://twitter.com/lymphedemaact1) and Facebook (https://www.facebook.com/pages/lymphedema-treatment- Act/186268221410801?created). Print and distribute our one-page facts sheet, which can be downloaded from this page of our website - http://lymphedematreatmentact.org/spread-the-worddistribute-this-flier-2/. Deliver our information cards to locations such as those listed below, asking that they distribute them to their patients/colleagues/customers. This card can be seen using the link in the above bullet point. Alternatively, we can ship cards directly to a location once you verify their wish to distribute the cards. Orders for these free information cards can be placed online at https://docs.google.com/forms/d/13lux2oghqrwdh8_n77zy_po7zwng52vc7 K1jYi3FNXM/viewform. o Top priorities for distribution of information cards: lymphedema therapists, doctors and treatment centers; lymphedema support groups; suppliers and fitters of compression garments; mastectomy boutiques; cancer treatment centers. o Sources for identifying these locations around your state: National Lymphedema Network Provider Directory - http://www.lymphnet.org/resourceguide/findtreatment.htm National Lymphedema Network Support Group Directory - http://www.lymphnet.org/patients/supportgroups.htm Lymphology Association of North America Therapist Directory - http://www.clt-lana.org/search/therapists/ Hanger Prosthetics & Orthotics (nationwide, many locations fit garments) - http://www.hanger.com/locations/pages/default.aspx National Directory for Prosthetics, Orthotics and DME Suppliers (call first because only some locations fit garments) - http://www.bocusa.org/how-choose-practitioner 7
Write, then Call your Members Of Congress The first priority for all individuals is to send a letter* through the submission form on our website - http://www.capwiz.com/lymphedematreatmentact/home/. Then, make a huge difference by following up with a phone call shortly after. Congressional offices receive hundreds, even thousands of emails each day, but far fewer follow-up phone calls. So when a constituent calls it is a powerful thing! CALLING INSTRUCTIONS: Find your Representative s DC number at www.house.gov/representatives/find. Ask to speak to the aide in charge of health legislation. It is likely that you will be transferred to voicemail, so have a concise, pre-planned message ready. Be sure to ask for a return call and leave your number. Here is a sample script for your message: My name is (your name) and I am calling regarding HR 3877, the Lymphedema Treatment Act. I have written your office about this legislation, asking if Representative (name) would sign on as a cosponsor, and have not yet received an answer. This bill is very important to me and I would like to talk with your office about the merits of this bill. I would appreciate a call back at (your number). When speaking to the health aide, remember that the most important thing to convey is why passage of this legislation is so important to you, and how it would improve your quality of life (or that of your patients, loved one, etc.). Your personal stories are the most important and persuasive tools we have! Be brief and to the point, showing why the legislation is needed. Add that Medicare automatically denies coverage for doctor-prescribed compression supplies because they do not fit under a benefit category. Thus, many patients suffer from disease progression and painful, costly infections. This bill will enable compression supplies to be covered under the DME (Durable Medical Equipment) benefit category. Conclude by asking when and how you can expect to hear from them regarding your Member s decision to cosponsor. *A NOTE REGARDING THE LIKELY RESPONSE TO YOUR LETTER: Several weeks after submitting your letter you will probably receive a polite form letter response. Most read as follows. It will name the bill, then the committees it was referred to. It will go on to tell you a bit about lymphedema and about what the bill would do. And it will say something to the effect of keeping your thoughts in mind should the bill come to the floor for a vote. Do not be satisfied with this. Keeping the constituent's thoughts in mind if the bill were to reach the floor for a vote will not matter if it never gets to the floor. To someday get to the floor we need more cosponsors. Therefore, the only meaningful support a member of Congress can give at this stage is to cosponsor. Persistence is the key! 8
Scheduling Meetings at District Offices THERE ARE TWO PRIMARY REASONS TO SCHEDULE A MEETING: 1.) If you ve written and called the DC office and your Representative still hasn t cosponsored the bill. 2.) If your Representative has cosponsored but you d like to ensure he or she is doing everything possible to support our efforts and the bill s passage. (You can encourage them to speak to other members of their state delegation, or the committees and caucuses they serve on, and help to persuade these members to also cosponsor the bill.) In either case the process of scheduling the meeting will be the same, and your preparation will be similar. However, the rest of this section will focus on meeting with offices who have not yet cosponsored. Remember, we are here to help you prepare for these meetings! After you have reviewed the information below, if you would like to speak with us further to ask questions, get additional pointers or just get more comfortable, we would be happy to hear from you. Just contact us via email at info@lymphedematreatmentact.org. INSTRUCTIONS FOR SCHEDULING DISTRICT MEETINGS: To locate your Representative, and the phone number to his/her closest district office, go to www.house.gov/representatives/find. When you call, say that you would like to request a meeting with your Representative one of the next times he or she is in the district, to discuss a bill that is very important to you, HR 3877, the Lymphedema Treatment Act. You will often be told that your Representative will not have time to meet with you for many months. In that case, ask if you could be put on a waiting list to meet with your Representative (and periodically follow up to check on and update your request). Then, ask if, while you wait, you could first meet with a member of his or her staff who works on health legislation, to explain more about the LTA. 9
PREPARING FOR A DISTRICT MEETING: Study the member of Congress website. Identify the issues that are important to them. Look for ways in which you can relate why he or she should support the Lymphedema Treatment Act to the ideals and issues that they value. Frame your reasoning so that he or she can relate to it on a personal level (as a mother, a doctor, a businessman, member of a health caucus, etc.) If possible, take with you a carefully selected group of people to the meeting. They can be team members and/or non-team members, and should include a few constituents living in the Representative s congressional district. The constituent(s) are there to represent the voters of the district and to open the door for the rest of the team to be able to be there at all. So if these members are not confident to speak up, that can be all right. It is very important that a core group of attendees be able to speak clearly and with confidence. Ideally this core group will include a therapist and some patients. It is important that each can present a part of your total message so you have a cohesive and persuasive presentation that comes from knowledge and from the heart. After these goals are met, try for diversity among the attendees, such as primary/secondary and lower/upper extremity patients, therapists, caregivers, men and women, etc. Meeting attendees must coordinate with one another in advance of the meeting. Plan who will talk about what, and in what order you will speak. You will not have time for redundancy, so you want to pack as much punch as possible into your finite amount of time. It s unlikely your meeting will unfold exactly as planned, but this preparation will serve you well. Be prepared to provide the following information in advance of the meeting: o A list of who will attend, with their contact information and one sentence stating their relationship to the issue. (List constituents first then others.) o Identify yourselves as being local patient advocates working with the Lymphedema Advocacy Group to support passage of HR 3877, the Lymphedema Treatment Act. o Briefly but clearly state that your goal is for them to cosponsor this bill. o The two-page facts sheet that we have prepared specifically for meetings with members of Congress and their staff. There is a link to download this near the bottom of the About the Bill page on our website (http://lymphedematreatmentact.org/about-the-bill/). 10
Bring the following materials with you: o More copies of the two-page facts sheet that you sent in advance. o Any personal materials you may wish to have with you to help illustrate your message photos, garments, bandages, nighttime compression devices, etc. WHAT TO EXPECT IN YOUR MEETING: You will probably be told you have a finite amount of time. Expect anything from 10-30 minutes and plan accordingly. Relax they do not expect you to be an expert. Just be yourself. Your personal story is a very persuasive tool. It can illustrate the important points your team has prepared to make. If they are not familiar with lymphedema then you may need to give a brief explanation of what it is, how it should be treated, and what happens when it is not properly treated, so that they can put your personal story in context. Remember that it s easy to lose track of time and forget details once you begin talking. This is why your preparation is important. Do let the meeting unfold naturally, responding to questions as they are asked, but try to keep in mind what each person was planning to talk about, and in what order. Make sure your personal story serves the reason you are there. They don t need to know your complete medical history. They do need to know why it is essential for patients to have compression, and what detrimental personal and medical consequences ensue if patients do not have access to these supplies. Cost is at the forefront of every member of Congress mind. You will likely be asked what your compression supplies cost you (or your patients). Remember that you will be more persuasive by stressing not what the compression supplies cost, but on how much human suffering could be avoided and how many overall health care dollars could be saved by properly treating and managing this disease. Coverage for compression is the most conservative and cost-effective approach to managing lymphedema. It will reduce the incidence of disease progression, complications and disability, thereby reducing the financial burden on the health care system. Near the close of the meeting be direct about expressing your wish that he or she become a cosponsor of the Lymphedema Treatment Act, and ask when and how you should expect to hear of their decision. 11
Advocacy Trips to Washington DC We organize at least one advocacy trip to Washington DC during each two-year cycle of Congress. No experience is required! We arrange for a group rate at an area hotel and provide you with all the materials and guidance you will need. See the dates of the next trip, and other information, on the Lymphedema Lobby Days page of our website - http://lymphedematreatmentact.org/join-us-in-dc-2011-lymphedema-lobby-days/. The details of the trip itself are not covered in this handbook, however, regardless of whether or not you yourself represent your state in DC, all team members play a role in the preparation for these trips. Our hope is to have every state represented, ideally by two or more individuals. Attendees will meet with as many members of Congress from their state as possible. In order to achieve this a constituent has to request each meeting. Those individuals do not all have to come to DC. When scheduling the meeting, those who cannot attend will simply write to or call their Representative s DC office, state their inability to come to DC, and ask that others from their state be allowed to meet with his or her office on their behalf. The number of meetings you are able to get and the ease with which you can get them will depend on how robust your team is. Your overall efforts to spread awareness and build your team will really pay off when it comes time to prepare for lobbying in DC. If you have never been on an advocacy trip to DC, we are not exaggerating when we say it will be an awe-inspiring experience! We hope to see you in DC! 12