Lymphedema is an incredibly complex medical condition in that not only do we as patients have to educate the medical community, but we, ourselves, must be our own advocates. Insurance coverage for lymphedema is minimal at best and patients often go through a nightmare maze appealing, getting referrals, authorizations and even medications.
We must learn to be more agressively prroactive on our behalf. Primary lymphedema patients absolutely must join hands with secondary lymphedema patients in a community wide effort to get treatment legislation passed.
All the lymphedema groups and organizations must learn to work together and support each others advocacy efforts.
For too long, the lymphedema world has been torn with dissent, disagreement and turf wars. This must cease and the focus must be on the patient and their well being.
After all, it is our lives that are at stake here, not organizations, groups or even individuals. This is truely a situation where the needs of the many outweigh the needs on the one.
For a resource list of being an advocate, how to lobby - including media, who to contact and where, all officials of the U.S., see our new page:
Lobbying can easily be defined as the fine art of causing or persuading another to undertake a course of action on behalf of and in support of an issue of concern to you.
Lobbying is hard work that often requires many hours of preparation and research.
Lobbying is not a show you put on to become a star or the center of attention. If you are lobbying for lymphedema, you must stay focused on that specific topic. If you allow yourself to wander and ramble you will loose your audience's attention.
Remember, whether in writing or speaking stay focused.
Since most doctors know little about lymphedema, we can safely conclude that the group we are lobbying to is unfamiliar with it as well. Therefore, we must first educate them about the condition.
You must be educated on the condition as well. You must present facts that are verifiable and that is based on solid evidence. If you do not know your facts or if you half-facts or non-facts, you will never gain credibility. I can not stress enough how important credibility is in lobbying.
So, you must do your homework diligently.
The second pillar is making your info go from the brain to the heart.
If you are not able to bring your point to your audience's heart all your education becomes simply an academic exercise. Remember, change rarely, if ever takes place simply because of facts. Your audience must be able to feel your pain and to identify with you in it and in your struggle.
These two go hand in hand, and in a well thought out synthesis they bring amazing results.
This may seem redundant to some, but there are a few points to speaking to a group.
1. Do not simply read a script from a paper.
2. Know and memorize your speech well enough that all you have to use is an outline.
3. Make and keep eye contact with your audience Nothing keeps a person's attention like causing them to feel you are speaking directly to them.
4. Make sure you have studied your topic well enough so that if there is a question and answer period following, you do not falter or give simplistic glib answers to serious questions.
These are some good steps for when we see articles on Lymphedema, especially those who are misinformative.
Letters to the editor offer an effective vehicle for responding to news articles, op-eds and editorials in newspapers and magazines. A few things to bear in mind:
Letters must be timely. Allowing a week, or even a few days to pass before responding to an article will greatly diminish the likelihood of your letter seeing print.
Write in response to a particular news item, editorial or op-ed. Newspapers and magazines are not interested in letters that do not address a story or issue discussed in their pages. In your letter, make specific reference to the story's headline and the date it appeared.
Be brief and address a specific issue. Newspapers generally will not publish lengthy diatribes that go into the entire history or background of an issue. Many only accept letters of 250 words or less. Be succinct, brief and as “to the point” as possible. Review the publication's instructions for submitting a letter to the editor.
Be civil. Do not personally attack the writer. Your salutation should be addressed “To the Editor.” If responding to an opinion column or op-ed, you may refer in your letter to the writer by name, indicate that you disagree with his or her point of view, and explain why.
Be sure to include your name, address and a daytime telephone number. Most newspapers will not accept anonymous letters; most will not publish a letter without first attempting to check the identity of the author.
Send your letter by e-mail or fax. When using e-mail, direct the letter to the appropriate address for letters. Do use multiple addresses, or copy others. This will diminish your chances of being published.
Many newspapers and some Internet news sites have a designated ombudsman or “reader's advocate” – a staff member whose job is to address specific grievances of readers. If you feel strongly that a certain writer or columnist continues to unfairly portray the issues or facts with regard to an issue, a letter to the ombudsman can be another effective route.
The television and radio networks have various outlets for news. Generally, there are two forms of news generated by major networks such as ABC, CBS, CNN, Fox News, NPR, MSNBC and NBC – traditional news reports and commentary reported on a television or radio broadcast, and written news stories posted on network Web sites.
Some Internet news sites provide a forum for readers to respond to news articles. Several of the network-owned Internet news sites have recently assigned staff members to deal specifically with reader and viewer complaints.
If there is a television or radio broadcast that you feel is inaccurate or unfair, make a note of the report, including the date, time and channel of the broadcast. You should attempt to bring yourm concerns to the attention of the local news affiliate who aired thembroadcast or, when appropriate, the network responsible for the inaccurate or unbalanced report. Writing a letter to the news manager or producer, then following up with a phone call, is a good approach.
There are 101 excuses for not writing or calling the media when you see unfair, biased or inaccurate news coverage: “I don't know enough”; “I'm too busy”; “My computer crashed.”
Communicating with journalists makes a difference. It does not have to be perfect; not all letters to journalists need to be for publication. Even a one-sentence, handwritten note to a reporter can be helpful. If you take the time to type a substantive letter, send copies of it to two or three places within the media outlet-perhaps to the reporter, his or her editor, as well as to the letters-to-the-editor department.
If media outlets get letters from a dozen people raising the same issue, they will most likely publish one or two of them. So even if your letter doesn't get into print, it may help another one with a similar point of view get published. Surveys of newspaper readers show that the letters page is among the most closely read parts of the paper. It's also the page policy-makers look to as a barometer of public opinion.
When you write to journalists, be factual, not rhetorical. Do not personally attack them; that's more likely to convince them that they're in the right. Address them in the language that most journalists are trained to understand: Call on them to be responsible, professional, balanced and inclusive of diverse sources and viewpoints.
Letters that are intended for publication should usually be drafted more carefully. Here are some tips to keep in mind:
Make one point (or at most two) in your letter or fax. State the point clearly, ideally in the first sentence.
Make your letter timely. If you are not addressing a specific article, editorial or letter that recently appeared in the paper you are writing to, then try to tie the issue you want to write about to a recent event.
Familiarize yourself with the coverage and editorial position of the paper to which you are writing. Refute or support specific statements, address relevant facts that are ignored, but do avoid blanket attacks on the media in general or the newspaper in particular.
Check the letter specifications of the newspaper to which you are writing. Length and format requirements vary from paper to paper. (Generally, roughly two short paragraphs are ideal.) You also must include your name, signature, address and phone number.
Look at the letters that appear in your paper. Is a certain type of letter usually printed?
Support your facts. If the topic you address is controversial, consider sending documentation along with your letter. But don't overload the editors with too much info.
Keep your letter brief. Type it whenever possible.
Find others to write letters when possible. This will show that other individuals in the community are concerned about the issue. If your letter doesn't get published, perhaps someone else's on the same topic will.
Monitor the paper for your letter. If your letter has not appeared within a week or two, follow up with a call to the editorial department of the newspaper.
Write to different sections of the paper when appropriate. Sometimes the issue you want to address is relevant to the lifestyle, book review or other section of the paper.
An increasing number of broadcast news programs (60 Minutes, All Things Considered, etc.) also solicit and broadcast “letters to the editor.” Don't forget these outlets.
Please sign your letters as an individual or representative of a community group, not as a member of FAIR.
Please send us a copy of your letters (published and unpublished) to FAIR. Address them to the attention of the activist co-ordinator
Here is a sample letter you might use when approaching a local television medical news reporter for lymphedema:
(person's name) Medical News Reporter WGAB
I would like to thank you for your excellent news articles regarding health issues we all face and need important information regarding.
Because of your compassion and interest in helping the public, I wanted to share a little about a serious medical condition that actually afflicts at least
an estimated 100 million people throughout the world. Despite the number of individuals struggling with this debilitating condition, it remain one of the world's most misunderstood, misdiagnosed and untreated medical conditions.
It is called lymphedema. In this condition, your lymphatic system is damaged, impaired or just plain missing. As a result you have enormous swelling of the afflicted area, generally in the arms and legs. Complications include life-threatening infections, blood clots, amputation of the limb and even can include death from side affects.
In this country the condition is most often linked to cancer and lymph node removal. However, you can also be born with it, and anyone can become a victim as a result of serious infection, trauma, obesity, or injury to the lymph system or nodes.
You would be doing a tremendous service if you would consider doing a presentation on lymphedema and would be helping more people than you can realize.
Thank you so much for taking the time to read this and I will be contacting you shortly with anticipation of discussing this further.
you may also want to provide a website for add'l info they can refer to - of course you know which one I'll use
Op-eds are longer than letters to the editor, and there is more competition for space. You may want to call the paper for length requirements (usually 600-800 words).
Try to write on a controversial issue being covered at that time. If you can use a professional title that suggests authority, do so. If you work for an organization, get permission to sign the op-ed as a representative of that organization.
Feel free to send it to papers far from where you live, but avoid sending it to two newspapers in the same “market.” (Sending to the San Francisco Examiner and the Seattle Times is OK, but not to the Examiner and the San Francisco Chronicle.) “National” newspapers like the New York Times, Los Angeles Times, Washington Post, Christian Science Monitor and USA Today generally do not accept op-eds that are also being offered to other papers. But you can easily submit the same piece to five or ten local dailies in different regions—greatly increasing your chances of being published.
Assure the op-ed editor in your cover letter that the piece has not been submitted to any other paper in their market. If, on the other hand, you sent it to only one paper, let that paper know you are offering them an exclusive.
In writing op-eds, avoid excessive rhetoric. State the subject under controversy clearly. You are trying to persuade a middle-of-the-road readership. If you rely on facts not commonly found in mainstream media, cite your sourcesÑhopefully as “respectable” as possible.
Try to think of a catchy title. If you don't, the paper will be more likely to run its own—which may not emphasize your central message. (Even if you do write your own headline, don't be surprised if it appears under a different one.)
Be prepared to shorten and re-submit your article as a letter to the editor in case it does not get accepted as an op-ed.
If the coverage you object to is part of an overall pattern of bias, you might want to go beyond communicating with individual journalists. The next step is often an attempt to set up a meeting with management at the news outlet.
Gather evidence of bias
Clip offending newspaper articles. Jot down inaccurate, misleading or offensive comments in television news coverage. Record the political perspectives presented on talkshows. (See “How to Detect Bias in News Media” above.)
Document the pattern of bias
Be prepared to explain how this is bad journalism (gives people an inaccurate or misleading impression of the issue or community, does not provide a balanced range of sources, etc.). Accuracy is of the utmost importance here.
Build a coalition
Pull together several people who represent various constituencies in your community, heads of various organizations or coalitions who can speak for the broadest possible constituency. You might want to let media representatives know how many people you represent. Media outlets are businesses; the number of media consumers you represent is part of your power. Whether you are requesting that a station air a particular program to provide balance, or demanding that a newspaper use more neutral terminology, the key is demonstrating community support for your position.
Set up the meeting
Write your local media outlet and ask for a meeting. If your complaint is about news, explain that you represent a broad constituency of people concerned with the issue and would like to meet with the editor/producer/news director. If you want a newspaper to take a particular editorial stand on an issue, contact the editorial board. A week or so later, follow up the letter with a phone call. Keep calling until you get through. Usually someone will meet with you.
Plan your presentation
You will probably want to meet or strategize ahead of time to go over who will say what, what not to say, what statistics or documentation you would like to provide, who will provide them, etc. First impressions are key. What do you want to communicate in the first minute?
Present your case
Be clear about what your goals are before you go into the meeting. Be polite but firm. Be persistent but do not lose your temper. Stick to what you can prove. Conclude your meeting with specific requests for improvements in coverage, the inclusion of views that are being excluded to provide balance, providing context or history on a specific issue, terminology changes, etc.
Send a letter outlining agreements reached to everyone who attended the meeting. If you see good coverage that might be a response to your concerns, promptly contact the highest level media representative present at the meeting and acknowledge the effort to respond to your concerns. If you see continued poor coverage, write or call to object. Unless you make it clear you are monitoring coverage on an ongoing basis, you will not be unlikely to influence news media.
The letters to the editor section of your local paper presents an ideal forum for getting your message to its readers, be they local citizens, members of congress or university administrators. More people read the letters to the editor section than almost any other part of the paper. It is one of the first pages many elected officials turn to. Letters to the editor show that an issue is of concern to the community and are excellent tools for education. Here are a few guidelines for getting your letter to the editor printed.
Keep your letter short and to the point — 250 words maximum.
Think about what your objective is when writing a letter to the editor. Writing on behalf of a state, local or campus organization will give your letter more weight. Writing as an individual citizen will show impression of citizen support for or opposition to an issue.
Your letter should carry its most important message in the first paragraph.
Include your name, address and daytime phone number. Editors like to call to confirm that the letter was actually written by the person whose name appears on the letter.
Avoid rambling sentences and big words.
Type the letter — double spaced, one page maximum.
Limit the number of points you make, and stay on the same subject.
Be as factual as possible without being dull.
Localize your letter — explain how the issue will affect your area or personalize the letter by mentioning people in your own life or community who will be affected.
Accentuate the positive. When you criticize, also propose a solution to the problem or a better alternative, if possible.
Don't be disappointed if your letter does not get printed. Newspapers get many letters every day and can't print all of them. Most papers won't print the same writers over and over again. Therefore, if you have had a letter published recently, try to get a friend or member of your group to sign the next one. Have a number of activists submit a letter on the same topic at the same time. Editors are more likely to print letters on 'popular' issues.
Make the letter timely. Your letter stands the best chance of getting printed when it responds to something recently printed in the that newspaper — such as a news story, column, editorial, advertisement, or another letter. You can use the reference to that item as a springboard for stating your case.
Your letter can support and expand on something already in the news, make a point that was omitted, or disagree with and correct misinformation in whatever form it appeared. You can also use events like Pride or National Coming Out Day as a hook.
Don't be afraid to ask for action — tell readers what you want them to do. This includes your elected representatives; you can be sure they read the letters to the editor. By putting their names in the letter and asking for action, such as a vote, co-sponsorship of a bill, an explanation, you get their attention fast.
…and Other Ways to Generate Media on Poverty
Make Poverty an Issue This Election Year
To the Editor:
Some may say the increase of a few tenths of a percentage point in the U.S.’s poverty numbers is unsubstantial—not enough of a jump to be cause for alarm.
How many people are we willing to let live in poverty before we begin to be alarmed? There are now almost 35 million Americans living in poverty, according to the most recent U.S. Census Bureau numbers. That is 12 percent of the population. Even more shameful, 17.2 percent of children now live in poverty. The official poverty rate for a family of four in 2002 was $18,392. A single person is considered poor at $9,183.
As a Unitarian Universalist, I believe, as stated in my Association’s 1964 Poverty General Resolution, that “poverty, in the midst of plenty, [is] intolerable to the religious conscience and incompatible with our principles of economic justice.” I am writing to urge Members of Congress, other elected officials, and both Presidential candidates to make the eradication of poverty a priority this election year. Poverty only exists because we allow it to exist.
To the Editor:
There are now almost 35 million Americans living in poverty, according to the most recent U.S. Census Bureau numbers. That is 12 percent of the population. Alarmingly, 17.2 percent of children now live in poverty.
As a person of faith, I urge my elected officials to lift up a vision of justice for these issues this year. To me, such a vision would allow everyone to have the tools to meet their basic needs regardless of income, geography, citizenship, or other condition. Basic needs include access to nutritious food, comprehensive and affordable health care, high quality education at every stage of life, and accessible and affordable housing. A vision of justice would allow the opportunity for everyone to work, be compensated fairly, earn enough to meet their basic needs, and be treated with dignity. In this vision, families will be given respect and support for their care-giving responsibilities and will have access to child care and improved family and sick leave policies.
As candidates for office continue their campaigns, I urge them to remember this vision and respond to the needs of the tens of millions living in and near poverty. We have a collective responsibility to care for one another.
–from the Presbyterian USA Washington Office
Media Hooks The following are examples of “media hooks” you could use to write your own letter to the editor of your local newspaper. Add to these “hooks” personal stories and reactions, which are always more compelling than hard facts and statistics. Try to pull in stories or data from your local area or state, or speak as a person of faith.
The number of people who live in extreme poverty–subsisting on less than half the income defined as the poverty line–stands at 15.3 million people, which is higher than at any time since the Census Bureau began collecting data 28 years ago. This fact highlights the lack of an adequate social safety net to provide for families and individuals who are out of work and unable to access current government programs, such as welfare (TANF). See a Washington Post Editorial on extreme poverty, here.
The Census Bureau found that in 2003 we had the highest number of uninsured Americans ever reported.
Substantial racial/ethnic disparities in health insurance persist. According to the latest Census numbers, 32.7 percent of Latinos lacked health coverage in 2003, about one in three. African-Americans and Asian-Americans are also at greater risk of being uninsured; 19.5 percent of African-Americans and 18.7 of Asian-Americans were uninsured. In comparison, the percentage of non-Hispanic white Americans who were uninsured in 2003 was 11.1 percent, a slight increase from the 10.7 percent uninsured in 2002.
In response to the loss of private health insurance and the increase in the number of low-income people, enrollment in Medicaid and the State Children’s Health Insurance Program (SCHIP) increased to cover 2.4 million more low income children and adults in 2003. For children, the growth in Medicaid and SCHIP coverage was sufficient to offset the loss of private coverage–meaning the percentage of uninsured children remained almost constant between 2002 and 2003, while the overall number of Americans without health insurance rose dramatically. SCHIP and Medicaid are examples of successful government programs that should be fully supported and funded well into the future.
Example for lymphedema Treatment legislation
Dear [Senator or Congressman’s Name],
I would like to discuss the following proposal with you or one of your staffers. I am prepared to meet in Washington or at your home office at my own expense to discuss these items. They are urgently needed changes to current legislation as well as suggestions for new legislation.
Some of these suggestions are simple, such as the fixing of a three-year old WHCRA that is clearly faulty. Some are suggestions that might help CMS to do their job in a professional manner. Others are suggestions for an epidemiology study, a necessary cost-effectiveness study, simple changes to the SSA to enable compliance with the WHCRA of 1998, and suggestions for a new law to help the millions of lymphedema sufferers and SAVE MONEY in the process.
I feel strongly that many breast cancer survivors who suffer from lymphedema have not benefited from the Women's Health and Cancer Rights Act of 1998 because CMS has not seen fit to properly implement the lymphedema treatment provision according to current standards of medical treatment. Nor have the errors in wording of that three-year old Act been corrected to apply the lymphedema provisions to men, and to men and women who have not chosen reconstructive surgery. These technical corrections should be easily fixable as a first step in any lymphedema legislative program.
Sample letter to your U.S. Representative or U.S. Senators
Honorable (Name of Your Representative or Each of Your Sentors) (Address) (Address)
Dear (Representative or Senator) (Name):
I am writing to express my shock that President Bush’s proposed Fiscal Year 2003 budget eliminates funding for the national mental health Consumer and Consumer/Supporter Technical Assistance Centers, currently funded by the Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration (SAMHSA).
These five centers provide information and technical assistance to people who have mental illnesses. This attack in the budget is part of a strategy to disempower not only individuals but the mental health consumer movement as a whole.
The Congressional Justification for the proposed budget reads: “In FY 2002 and FY 2003, several programs that have been a part of the Center’s portfolio will be terminated early or funded for their last year. These include the Consumer and Consumer/supporter Technical Assistance Centers (not funded in FY 2002 and 2003) . . . Community Action Grants (no new in FY 2003), and Mental Health Treatment in Non-Mental Health Settings (not funded in FY 2003). New programs in FY 2003 are considered a priority for the reinvestment of funds.” (Emphasis added.)
The Bush administration is ignoring a growing body of evidence indicating the critical importance of supporting mental health consumer-run self-help services. The value of self-help and peer support was recognized by both the Surgeon General in the 1999 report Mental Health: A Report of the Surgeon General, and in a report published by the Center for Mental Health Services, entitled Consumer/Survivor-Operated Self-Help Programs: A Technical Report.
I urge you to contact Secretary Tommy G. Thompson (Department of Health and Human Services) and ask him to remove the damaging language, quoted above, from the Congressional Justification of the President’s proposed budget.
Later in the year, when Congress begins to deliberate on its budget for HHS and related agencies, we will ask for your help in restoring the funding for these services and the accompanying report language recognizing the importance of the work they do. Thank you very much for your assistance.
(Your Name) (Your Address) (Your Phone Number)
Dear Congressman, I need your help and assistance. I have been diagnosed with the Hepatitis C Virus (HCV). The virus attacks and destroys liver cells, and I am told it may shorten my life span greatly. There are one (1) million people infected with HIV in America today, and at least four (4) million persons infected with this Hepatitis C virus. I understand that there may be from 150 to 200 millions persons infected world-wide with HCV. Why has there been little, or no, money budgeted for this crisis? How could this occur? What will your office and the House of Representatives do to remedy this? This Hepatitis C virus (HCV) has been studied by our government for 25 to 50 years. Many of the infected persons are honorable veterans of these United States Armed Forces. Many veterans have received HCV from the Veterans Administration (VA), itself, over the years when they were given blood transfusions. The Veterans Administration has been following this HCV virus for years. Are you aware of that? Many persons infected with this virus find out after 15, to 20 years, that progressive damage has been done to their livers. The leading cause for liver transplants in America last year was due to the Hepatitis C virus (HCV). Studies done by Dr. Gary Roselle of the VA show that nearly 30% of all veterans tested at VA facilities during 1999 tested positive for HCV. Of that amount, nearly 63% are Vietnam Era Veterans.
Health care professionals know very little about this virus and how to care for patients diagnosed with it. Many educated persons have never even heard of HCV. How could this be Congressman? Why are millions sick and the government has reverted to “lifestyles and behaviors” as a defense of its own shortcomings concerning this public health crisis? Why has the “behavior” of the government not been responsible in this matter? What “lifestyles” do you expect middle class family and community people with HCV to be living, other than struggling for the American dream? What will be done?
This is a matter of life and death to me and many others like me in our Congressional District. What funding levels will you look to budget for in the coming years? Four to five times the budget for AIDS? What treatment options will be offered to persons like me with the Hepatitis C virus? Will you demand a full “lookback” into the blood supply to ensure that all infected persons are notified, and are not left to finding out on their own - after it is too late? Will you at least ensure that the VA will contact all those veterans that it has infected over the years? What about grant monies for community awareness and educational programs, like are needed here in our Congressional District?
I realize the entire House of Representatives, and one third of the Senate, is up for re-election this November. I plan on being very involved with following your position on HCV and our other leaders in the Congress and this government- concerning this life and death matter to me, and many other constituents from this Congressional District.
Sincerely, (YOUR NAME HERE) Registered Voter!
Dear Governor, I am writing to ask for your assistance. I have been diagnosed with the Hepatitis C Virus (HCV) and have recently found out that at least 4-5 million other Americans are also infected with this virus. I am advised that there is no cure and very little information available to person's infected with this disease. The only possible treatments are experimental and very costly. The virus attacks and will eventually destroy my liver. The leading cause of liver transplants last year was because of HCV. There are one million HIV persons in America today, there are almost five times that number of Hepatitis C suffers. There are 100-200 million persons infected world-wide with this virus. Many live here in our state. What is the State going to do about this? What is the State doing to assist infected persons like me? Many of these infected persons are veterans of the U.S. Armed Forces. What will the state do to help these veterans? Veterans that number in the ten-of-thousands in our state alone? Recently, the Veterans Administration (VA) changed their policy for HCV veterans. Will the State do the same?
What information will be provided to the public and what resources will be committed to fight this ever growing health care problem?
What will be done to ensure that the Doctors that are licensed to practice medicine in this State are educated on this disease properly? Presently, very few Doctors know anything about this. Some Doctors are even advising people not to worry and come back in six months. That could be a death sentence to some. What precautions will you ensure are taken to assist in the education of health care professionals from this time forward?
I realize that there are no easy answers to difficult questions like these, however, if you can not answer these questions, who can?
I eagerly wait for your reply, there is not much time left before election day.
Sincerely, (YOUR NAME HERE) Registered Voter!
Know What You Want
Know Who To Ask
Know What You're Talking About
Be Polite, Personal, Thoughtful, and Rational
Pick a Method of Communication that Works for You and Your Message
Know When to Ask
Don't Underestimate the Value of Staff
Understand the Limitations of the System
Additional information on all points on link below:
Contact the American Medical Association
AMA Contact Us
AMA in Washington
National House Call
Health Plan Complaint Form
Join us as we work for lymphedema patients everywhere!
Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.
Lymphedema People / Advocates for Lymphedema
Updated Nov. 22, 2011