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Legislative Advocacy
HHT: A National Health Problem
Hereditary Hemorrhagic Telangiectasia (HHT) is a long neglected national health problem that affects approximately 50,000-70,000 Americans or 1 in 5,000 people. HHT research has so far been funded solely by private contributions. HHT has never received any federal research funding while several less prevalent disorders have received significant amounts of federal research money.
The HHT Foundation began pursuing the Federal Government for recognition and funding in 2004. In 2006, the HHT Foundation was successful in securing federal recognition of HHT as an important health issue for the first time in history. The “Congressional Language” we fought for can be found in the Labor, Health, and Pension Appropriations bill.
Benefits from HHT Language in the bill:
• HHT is recognized as a national health problem by our United States Government
• HHT is working hand in hand with the Center for Disease Control and Prevention (CDC) and received a $32,000 grant for a HHT/CDC Conference held in March 2008. This conference was attended by the top medical leaders in various specialties, such as emergency medicine, pediatrics, dentists, school nurses, neurologists, radiologists, vascular medicine, gastroenterology, and otolaryngology, for the purpose of:
1) developing a roadmap for HHT treatment and research
2) to implement clinical guidelines and effectively disseminate information to primary care providers to aid in identifying undiagnosed individuals
3) database development to establish methods for data collection relating to screening, treatment, and outcomes of medical interventions.
4) implement screening programs in schools to identify at risk children develop national education initiatives for family practitioners and specialists to increase screening and treatment referrals
• The National Institute of Health (NIH) has HHT on their radar and as a result more funds are being awarded to research grants for HHT related research.
HHT Legislative Actions Plan FY2009 and forward…
Current Status for Federal Funding for Research for FY2009:President Bush released his FY 2009 Federal Budget on February 4, 2008. Under his proposal, the NIH would be flat-funded at $29.2 billion, which would cause further cuts at the agency because of failure to keep pace with inflation. The President recommended $5.9 billion for CDC’s core programs, a 7.5% decrease from FY 2008 appropriations passed by Congress.
Congress has begun work on funding for research to improve health in FY 2009. The House and Senate both passed budget resolutions greater than the President’s recommendation.
Plans for HHT Legislative Initiative for FY2009:
HHT Board of Directors Commitment
The Board of Directors understands how important the pursuit of federal funding is for the HHT Foundation and the achievement of its mission. Fully acknowledging the very challenging political climate, the Board remains fully committed to our continued pursuit
of federal funding and has appointed a highly experienced Legislative Committee to develop and implement an HHT Legislative Advocacy Plan for FY2009 and beyond.
The Legislative Committee
The HHT Foundation is very fortunate to have several new Board Members that have extensive legislative background serving on this committee. The Legislative Committee held a full day strategic planning meeting in November 2007 and had several follow-up planning conferences resulting in our HHT Legislative Initiative for Fiscal Year 2009.
HHT Legislative Initiative for FY2009
In previous years, our focus has been on the appropriations process. This approach was recommended by high ranking Members of Congress that supported HHT. The appropriations process had been successful in past years for similar disorders and it is usually the most expedient means of obtaining initial funding.
With this single approach, the HHT Foundation was successful in obtaining important Report Language in both the House and Senate recognizing HHT and asking the CDC and NIH to work with HHT. Unfortunately, with the growing anti-earmark sentiment and the difficult political climate, this single approach has not been successful in obtaining funding.
Starting with FY2009, the Legislative Committee has developed a three pronged approach to our legislative plan which includes strategies in the following areas:
• Executive Branch
• Appropriation
• Authorization
Executive Branch
Our goal in working with the Executive Branch is to have HHT funding added to the President’s budget by working through the Deparment of Health and Human Services. The Department of Health and Human Services (HHS) is the United States government’s principal agency for protecting the health of all Americans and providing essential human services. HHS represents almost a quarter of all federal outlays and it administers more grant dollars than all other federal agencies combined. Both the NIH and CDC are U.S. Public Health Service Agencies that fall under HHS.
National Institutes of Health (NIH) — NIH is the world’s premier medical research organization, supporting over 38,000 research projects nationwide in diseases. It includes 27 separate health institutes and centers. Their FY2008 budget was $29.2 billion.
Centers for Disease Control and Prevention (CDC) — Working with states and other partners, CDC provides a system of health surveillance to monitor and prevent disease outbreaks, implement disease prevention strategies, and maintain national health statistics. Their FY2008 budget was $6.0 billion.
Objective: To create medical and scientific support for increases in HHT funding for surveillance, research and treatment within the scientific community in the various HHS health agencies. This objective will seek to build on the results/conclusions of the HHT/CDC Educational Conference, “HHT Health Initiatives for the 21st” Century”, held in Atlanta in March of 2008. The HHT Foundation, in conjunction with key HHT Center Directors and key Members of Congress that support HHT, are currently working to schedule a meeting with the office of Mike Leavitt, Secretary of the HHS.
Appropriation
Congress has a whole vocabulary all to itself. Appropriation is defined as the provision of funds, through an annual appropriations act or a permanent law, for federal agencies to make payments out of the Treasury for specified purposes. The formal federal spending process consists of two sequential steps: authorization and then appropriation. The Appropriation Committees basically provide funds and wield some latitude over policy. The two committees are:
• Senate Labor, HHS & Education
• House Labor, HHS & Education
Objective: To secure the inclusion of an HHT earmark in both the House and Senate versions of the Labor/HHS appropriations bill. While earmarks are still under scrutiny, the fiscal year 2008 spending bills still included $18.3 billion worth of earmarks. The justification for an HHT earmark to obtain federal funding in the LHHS appropriation bill is extremely sound. HHT has been recognized by the federal government as a national health problem and our request is not specific to one state or one congressional district. Our earmark request is not “pork”.A champion in both the Senate and House has been identify and has agreed to put the HHT appropriations request into their respective houses of Congress.
Authorization
Authorization is defined as - A statutory provision that obligates funding for a program or agency. An authorization may be effective for one year, a fixed number of years, or an indefinite period. An authorization may be for a definite amount of money or for “such sums as may be necessary.” The formal federal spending process consists of two sequential steps: authorization and then appropriation. The Authorizing Committees set overall policy, program framework, and continuing oversight. The two Authorizing Committees are:
• Senate Health, Education, Labor & Pension (HELP)
• House Energy & Commerce
Objective: Launch major advocacy initiative to enact statutory language authorizing a federally funded national program to combat the health and financial consequences of HHT.
The HHT Foundation has drafted authorization language and policy rationale in order to move the process forward. Key members of both the House and Senate have been identified as potential primary sponsors of our authorization language and we are in the process of scheduling meetings with those members of Congress to confirm their sponsorship. The next step in this process would be to work with the sponsor’s staff to prepare a “Dear Colleague” letter to go to all members of the Senate and House asking them to be co-sponsors of the respective bills, by number.
The HHT Foundation will time the release of “Dear Colleague” letters to coincide with a major publicity campaign to our members requesting YOU write to your Senators and Members of Congress asking them to support the HHT bills.
HHT Impact on the
The HHT Foundation has prepared a brief presentation on how HHT has impacted the
Of those Americans that have HHT, 9 out of 10 of them do not know they have it due to lack of physician awareness. If we could diagnosis these individuals and treat them over $6.6 billion could be saved in health care cost. See the presentation for more information.
http://www.hht.org/docs/HHT_Impact_on_US.pdf
HHT Impact on your State
To view the statistics on your state please view the following link. When you customize your letter, I highly suggest adding your state statistics to your letter.
For example: I am a constituent from the state of
http://www.hht.org/docs/HHT_Impact_on_States.pdf
ADVOCACY 101
General Instructions on contacting Your Members of Congress
Who are your Senators and Representatives?
Congress.org is an excellent resource for finding out the identity of your Senators and House Representatives as well as their contact and background information. To access this information, click on the link below. When it opens to the home page, click on “Congress” on the left navigation bar.
Communicating with Members of Congress
As a general rule, Members of Congress are far more likely to heed your message if you are one of their constituents. The following tips aim to improve the effectiveness of your correspondence, regardless of the means you choose to deliver your message.
Email vs. “Snail Mail”
Heightened security measures have dramatically increased the time it takes for a letter sent by post to reach the offices of federal or state legislators. More and more, citizens are using emails and faxes to communicate their concerns because elected officials’ offices prefer electronic communications for constituent contact.
Addressing Your Correspondence to a Senator:
The Honorable (First Name, Last Name)
___(Room Number)___ (Name of)
Dear Senator (Last Name):
Addressing Your Correspondence to a Representative:
The Honorable (First Name, Last Name)
___(Room Number)___ (Name of)
Dear Representative (Last Name):
Tips for Phoning Congress
Telephone calls are usually taken by staff members, not the member of Congress. You should ask to speak with the staffer who handles legislation related to health issues. In many cases, you will be referred to individuals with the following titles: “Legislative Director”, “Senior Legislative Assistant” or “Legislative Coordinator”.
After identifying yourself as a constituent, tell the aide you would like to ask for a few moments of their time to share with them how HHT, a common but “rare” blood vessel disorder, has affected you and your family and ask for their support for our HHT Legislative Initiative.
See other talking points as listed below.
Appointments
A face to face meeting with a member of Congress or a congressional staffer is by far the most effective means of gaining that member’s support for HHT.
Phone for the Appointment:
As explained above, telephone calls are usually taken by staff members, not the member of Congress. You will ask to speak with the staffer who handles legislation related to health issues. This may be the person you actually end up meeting, as well. Rest assured that meeting with the staffer is very useful. These individuals are responsible for listening to your position and reporting it back to their Member of Congress.
If you are attempting to meet with the actual Member of Congress, it is usually best to contact the Appointment Secretary/Scheduler. Explain your purpose and who you represent. It is easier for congressional staff to arrange a meeting if they know what you wish to discuss.
The Member of Congress’ home office is a great place to arrange an appointment. Typically, the home offices are a little more relaxed than the DC offices. Additionally, you may be able to get more of our family, friends and fellow HHT members to join you in these visits. Below is a link to the House and Senate Recess Schedule so you know when Members plan to be in their home offices.
http://www.hht.org/docs/Congressional_Schedule_2008.doc
When it is time to meet with your Senator, Representative, or one of their staffers, be punctual and be patient. It is not uncommon for a Congressperson to be late, or to have a meeting interrupted, due to the member’s packed schedule. If interruptions do occur, be flexible. When the opportunity presents itself, continue your meeting with a member’s staff.
Be Prepared:
This is your chance to succinctly educate your member of Congress about HHT, share your personal story in order to demonstrate the human aspects of the issue, and ask for their support of our Legislative Initiative. Whenever possible, bring to the meeting information and materials supporting our position. Your aim is to gain their support and arm them with facts regarding the benefits associated with our initiative so that they can convince other legislators of the value of our cause.
Talking Points Regarding HHT
Whether on the phone or in person, you want to point out the following information early in the conversation:
I am a constituent from (State or District)
I would like to have a few moments of your time to share how HHT has affected me and my family and ask for your support for our HHT Legislative Initiative.
Below is a list of key impact statements you can choose from when talking about HHT during your call or visit:
- A long neglected national health problem.
- Common “rare” disorder affects 50,000 to 70,000 Americans, or 1 in 5000 people, regardless of race or ethnicity.
- 20% of patients, regardless of age, suffer sudden death or disability.
- 50% of children of a parent with HHT will inherit the gene.
- Multi-system vascular disorder which produces blood vessel malformations in the brain and lung which can result in stroke, hemorrhage, heart failure and death.
- Blood vessel malformation in the nose and gastro-intestinal tract lead to chronic anemia and frequent blood transfusions.
- Blood vessel malformations in the liver affect 70% of HHT patients (only 5% are symptomatic) and cardiac failure is the most common complication.
- It is estimated that 20%-40% of premature death/disability from stroke, hemorrhage, and heart failure usually can be prevented with proper diagnosis and treatment.
- Due to widespread lack of knowledge of the disorder by medical professionals, approximately 9 out of 10 people that have HHT are not yet diagnosed and are at risk of death or disability due to sudden rupture of the blood vessels in major organs in the body.
- HHT has been solely funded by its members with no federal funding at all while other less common disorders have received millions over the years. HHT has been too long neglected.
Advocacy is the same Sales
Joseph Gagen is a professional grassroots trainer with more than 30 years experience in politics. “Advocacy is the same as sales”, Gagen said. “You basically are selling something, and you have to make sense to the buyer. You have to find out what’s important to the buyer, not focus on what’s important to the seller.” He has a several top vote influencing factors he has developed and stresses the art of developing relationships with a congressional leader.
- your vote
- facts
- their personal beliefs
- their campaign volunteers
- personal experience
- voter interest/passion
- media
- their staff
Relationship Development and the ‘Rule of Seven’
Gagen’s Rule of Seven pertains to the amount of time an advocate should contact a congressional leader’s office after a visit. “After a certain point, a congressman will trust you and your opinions.” Gagen states. “Trust takes multiple contacts, and seven contacts will help the ‘customer’ remember who you are”.
To follow are some ideas of various reasons for these follow-up contacts:
- Thank you letter
- Sending additional information
- Responding to a question they ask in your meeting
- Have your picture taken with Congressional member, have it published in a paper, and send back to Congressional member with note
- Send other HHT Media Event (newspaper articles, magazine, television etc.)
- Publish a story in HHT Newsletter about your visit or your personal story and send to Congressional Member
- Update with new information about HHT or our HHT initiative
- Report other Congressional Supporter to Congress person as HHT distributes expanding list to you
General Advocacy Tools and Sample Letters:
How to Determine who your Congressional Members are and Contact Information http://www.congress.org
Members of the Appropriations and LHHS Subcommittee
http://www.congressmerge.com
HHT Impact on the
http://www.hht.org/docs/HHT_Impact_on_US.pdf
HHT Impact on your State
http://www.hht.org/docs/HHT_Impact_on_States.pdf
House and Senate Recess Schedule
http://www.hht.org/docs/Congressional_Schedule_2008.doc
Sample Request for Appointment Letter http://www.hht.org/docs/Sample_Request_Appointment_Mar07.doc
Sample Thank You Letter
http://www.hht.org/docs/Sample_Thank_You_Mar07.doc
HHT Fact Sheet
http://www.hht.org/docs/hht_fact_sheet.pdf
How a Bill Becomes a Law
http://www.hht.org/docs/How_a_Bill_Becomes_a_Law.doc
Glossary of Congressional and Legislative Terms - Glossary of congressional terms, from TheCapitol.Net. Non-partisan training and publications that show how
http://www.thecapitol.net/glossary/
REPORTING
Please make sure you send an email with your progress to me at the HHT Foundation Office so I can track all our legislative activity. It is so important to keep track of everyone’s results so that we can report to Congress the names of all the Senators and House Representatives that support us. This is the information I will need:
*Your name
*Individuals you have contacted
*Senator or Representative Name
*Staffer’s Name
*Title
*Email Address
*Brief Summary of Discussion: How did it go? What did you ask for? Did they agree to any action?
As you gain your Congressional Members support, please ask them if you have their permission to use their name as a supporter of the HHT Legislative Language and Funding Request. If they have sent a Support Letter on HHT behalf, make sure you ask them for a signed copy. In either case, please communicate this information to the HHT office so we can keep this list up to date for all to see.
Please feel free to contact our office at any time with questions or if you need any information. We are here to support you.
HHT Foundation
1-800-448-6389
sharon.williams@hht.org
