This is SO important that I am using my Blog to help the ICA spread the word and encourage everyone to contact their Congressional Representative to sign on to this letter. Since Rep. Schneider IS my Congressman, I Tweeted him thanking him for leading the charge on this issue; he actually "Favorited" my Tweet back! Don't just talk about the need for research and funding; DO SOMETHING!
ACTION ALERT
Representative Brad Schneider (D-IL-10) is asking his colleagues in the House of Representatives to sign on to a letter addressed to Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention (CDC). This letter encourages Dr. Frieden to support programs and activities that help those with interstitial cystitis (IC), including the IC Education and Awareness Program. The CDC IC Program promotes public awareness of IC through education for healthcare providers and the general public. It also develops enhanced communication channels for information sharing among patients and their families, healthcare providers, researchers and public health scientists. The deadline for legislators to sign on is June 28, 2013.Help Rep. Schneider encourage House legislators to sign on to the IC letter before the deadline on June 28, 2013
Action: Contact your Representative at their DC office by phone and/or email, ask for the staff member that works on health care issues, and relay the message below. To determine your Representative, visit www.house.gov, enter your zip code in the box in the upper right-hand corner, and follow the instructions. You can find your Representative’s DC office phone number on their website.
Sample Message:
Note: If a Representative is interested in signing on to the letter, they can do so by contacting Cara Toman in Rep. Brad Schneider’s office at cara.toman@mail.house.gov or (202) 225-4835
- PLEASE SIGN ON TO THE LETTER LED BY REPRESENTATIVE BRAD SCHNEIDER TO CDC REGARDING INTERSTITIAL CYSTITIS (IC) (Click here to view the letter)
- [BRIEFLY DESCRIBE YOUR EXPERIENCE WITH IC]
- THERE IS NO CURE FOR IC AND TREATMENTS ARE LIMITED
- IC IS PREVALENT BUT NOT MUCH IS KNOWN ABOUT THE DISEASE. CDC’S WORK TO PROMOTE IC EDUCATION AND AWARENESS IS CRITICAL TO FACILITATING INFORMATION SHARING AND IMPROVING TIME TO DIAGNOSIS
- TO SIGN ON TO THE LETTER, CONTACT:
- CARA TOMAN IN REP. SCHNEIDER’S OFFICE AT CARA.TOMAN@MAIL.HOUSE.GOV OR
(202) 225-4835- PLEASE KEEP ME INFORMED OF YOUR ACTIONS. THE DEADLINE TO SIGN ON IS JUNE 28.
Please contact us to let us know if you have taken action.
CONTACT YOUR SENATORS TODAY!
The Senate is considering the budget resolution for fiscal year 2014 (FY14) this week, a non-binding blueprint for Senate appropriators. Part of the discussion is an amendment proposed by Senator Jerry Moran (R-KS) that would call for Congress to increase NIH funding by $1.4 billion in the FY14 appropriations bill to keep up with the rate of biomedical inflation. Contact your Senators TODAY and Friday, March 22, to ask them to support the Moran amendment (Senate Amendment 137) to the Senate FY14 budget resolution.Only through steady, sustainable, and predictable funding can the NIH sustain the highest quality biomedical research to help improve the health of all Americans. In addition, the NIH plays a critical role as an economic engine, supporting approximately half a million jobs nationwide. Our commitment to the NIH will remain an important factor in saving and improving lives, bolstering the nation’s economy and driving US global competitiveness.
You can identify your Senators by going to www.senate.gov and selecting your state in the “Find Your Senators” box in the upper right hand corner of the webpage. Select the “GO” button and the name and contact information of your Senators will appear. Phone calls work best, however, please feel free to email your representative this important information.
Tips for communicating with congressional offices:
- Identify yourself as a constituent and ask to speak with the legislator’s Healthcare Legislative Assistant
- Tell the aide that you are a member of the Interstitial Cystitis Association
- Ask that the legislator support the Moran amendment (Senate Amendment 137) to the Senate FY14 budget resolution that would call for Congress to increase funding for NIH
- Briefly explain why these issues are important to you
- Give the aide your contact information and ask to be informed about the actions the legislator takes in response to your request
ACTION ALERT!
TELL YOUR MEMBERS OF CONGRESS TO APPLY A BALANCED APPROACH TO DEFICIT REDUCTION TO ENSURE OUR NATION IS PROPERLY FUNDING PUBLIC HEALTH AGENCIES
The Office of Management and Budget (OMB) has estimated that sequestration—significant across-the-board cuts to programs in the federal budget—will immediately cut $2.4 billion from the NIH, FDA and CDC in Fiscal Year 2013. What do these public health agencies do for IC patients?- The NIH is the principal source for medical discovery that lays the path for private sector innovation. The ICA Pilot Research Program provides IC researchers with the initial grant monies needed to get their projects literally "off the ground". However, for discoveries to go from bench-side to bed-side, we need the NIH to fund larger studies.
- The FDA ensures that medical treatments and devices, including those for IC, are safe and effective.
- The CDC conducts and supports the public health research and programs needed to contain disease outbreaks, promote wellness, and provide basic support for a safe and healthy society. This includes bringing public awareness to IC.
Reducing funding for these important health programs would disrupt critical IC research and result in fewer outreach efforts to educate the public, patients, and healthcare providers about IC. However, there is hope! Please join us in these efforts by taking the following steps:
- Call (202) 225-3121 to get the phone numbers of your legislators (two Senators and one House Representative). Alternatively, you may go online at congress.org to get their phone numbers.
- Identify yourself as a constituent, and ask to speak with the Health Care Legislative Assistant.
- Tell the aide that you are a member of the ICA.
- Urge the legislator to apply a balanced approach to deficit reduction that does not sacrifice funding for public health, medical research and training.
- Explain why public funding of IC awareness, education and research is important to you.
- Ask that they keep you informed of their actions.
- Give the aide your contact information, and ask to be informed about the actions the legislator takes in response to your request. Feel free to follow up with the aide at a later date.
ACTION ALERT!!
FISCAL YEAR 2013 APPROPRIATIONS
CONTACT YOUR MEMBER OF CONGRESS TODAY!
BackgroundCongress continues to debate fiscal year 2013 (FY13) funding levels for the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and other public health-related agencies. In this difficult time, all federal programs face possible funding reductions. Reducing funding for these important health programs and agencies would disrupt critical research and result in fewer outreach efforts to educate the public, patients, and healthcare providers about IC.
The Issue
Your House representative must hear from you to ensure that the CDC Interstitial Cystitis Education and Awareness Program and IC research at NIH continue to be funded in FY13. Funding for these programs depends upon the decisions that are being made now. Lawmakers will only demonstrate support for these programs if they hear from you, their constituents.
Take Action
Contact your member of Congress by July 17th and encourage them to support the CDC IC Program and NIH research. You can identify your representative by going to www.house.gov and entering your zip code in upper right hand corner. Select the “GO” button and the name of your representative will appear. Click on a legislator’s name to be directed to their website and find their contact information.
When calling your legislators:
- Identify yourself as a constituent and ask to speak with the legislator’s health care legislative assistant. If you receive the voicemail recording of a health staffer, please leave a message, including the priorities listed below and your contact information.
- Tell the aide that you are affiliated with the Interstitial Cystitis Association.
- Ask that the congressman support the following appropriations priorities in the Labor, Health and Human Services, Education, and Related Agencies Appropriations bill:
- $660,000 for the Interstitial Cystitis Education and Awareness Program at the Centers for Disease Control and Prevention
- $32 billion for the National Institutes of Health
- Briefly explain why this is important to you.
- Give the aide your contact information and ask to be informed about the actions the legislator takes in response to your request.
- Phone calls work best, however, please feel free to email your congressman this important information.
- Contact your legislators and encourage them to support funding that helps the IC community. Funding for these programs depends upon the decisions that are being made now. Lawmakers will only demonstrate support for these programs if they hear from you, their constituents.
- Ask that they ensure that the CDC Interstitial Cystitis Education and Awareness Program continues to be funded.
- Encourage them to ensure that IC research at NIH continues to be funded in FY13.
- Go to www.congress.org and enter your zip code in the box on the right side of the page.
- Select the “GO” button and the names of your senators and representative will appear.
- Click on a legislator’s name and then select the “contact” tab to find contact information for the office.
- Review more tips about contacting your legislators.
Ask your Senators to help all IC patients be winners by funding IC research and awareness:
Read tips for communicating with Senate offices.
- $660,000 for the IC Education and Awareness program at the Centers for Disease Control and Prevention.
- $35 billion for the National Institutes of Health, including increased investment in interstitial cystitis research.
The National Institutes of Health (NIH) Common Fund supports exceptionally innovative programs that are inherently high-risk but have the potential for high-payoff by catalyzing research across all of NIH and in the biomedical research community. New ideas for Common Fund programs are identified annually by internal and external scientists and stakeholders. NIH is asking for your input on these ideas to help them shape new programs for 2013. They want to know which ideas you think have the potential to fundamentally change how they think about, support, or do research in a specific field, or to create a new field all together. Provide your input today: http://commonfund.nih.gov/strategicplanning. The feedback period is open until Wednesday, September 14, 2011. For more information about the NIH Common Fund: http://commonfund.nih.gov.
Contact your member of the House of Representatives TODAY!
Congress is currently negotiating the federal government’s budget for fiscal year 2012! This summer, House of Representatives’ subcommittee is scheduled to review the budget which funds the National Institutes of Health (NIH) and Centers for Disease Control (CDC). The subcommittee is expected to produce a bill that spends significantly less on these programs. Please contact your representative this week and encourage him/her to support the needs of IC patients in this bill.
- Don’t know who your representative is? Go to www.house.gov and enter your zip code.
- Calling works best—and phone numbers for all Congressional offices are also listed on www.house.gov.
- If you prefer to communicate via e-mail, you can do so through www.house.gov.
However, for so many IC patients, the pain and urinary symptoms do not take a holiday. NAY!
Embrace this fourth by taking an opportunity to let your Congressional leaders know that you need their help in declaring freedom from IC:
- Go to www.congress.org
- Send a note to your representative and senators
- Tell them your IC story
- Ask them to do three things for you:
- Ensure IC research studies continue to be funded at the National Institutes of Health. These are essential to move us closer to a cure and better treatments for interstitial cystitis.
- Keep awareness activities conducted by the Center for Disease Control funded. This ensures healthcare providers and the public understand the special needs of people with disabling conditions like IC.
- Ask that IC be included in the group of conditions studied in the Department of Defense Peer-Reviewed Medical Research Program
- Let us know you sent a letter—send a copy to takingaction@ichelp.org. We’ll stop by your representatives’ office in Washington and follow up.
Help ICA keep IC advocacy activities going in Washington. Donate today.
Send your letter NOW! |
| The Senate votes this week and in coming weeks on bills that impact IC programs. Go to www.congress.org |
Act now—share your IC story. Tell your Senators to maintain health funding in FY2011:
- Research studies funded at the National Institutes of Health are essential to move us closer to a cure and better treatments for interstitial cystitis.
- Awareness activities conducted by the Center for Disease Control ensure healthcare providers and the public understand the special needs of people with disabling conditions like IC.
Go to www.congress.org and send your letter today.
Learn more about how to communicate with Congressional offices—check out the ICA Advocacy Toolkit. Thank you for all you're doing to help Stamp Out IC! Keep us in the loop by emailing the ICA at takingaction@ichelp.org.
The Senate will begin consideration of the FY11 funding package the week of February 28th. Please take a minute to call your local district office and share your IC story. Let them know we need a cure—explain to them how important it is that we fund dedicated IC research and awareness programs.
Keep us in the loop by emailing the ICA at takingaction@ichelp.org.
Federal funds for IC research and awareness are in danger!
The cuts in the House version of the current year Fiscal Year 2011 appropriations bill are not backed up by any rational analysis and go way beyond any reasonable deficit reduction plan. They are so deep that they will cripple medical research and public health programs, including those for IC, and training of health professionals.
In January 2011, the 112th Congress took the reins and with this comes lots of new legislators to educate. Please join us for visits with members of Congress and their staff. Our goal is to meet with these new leaders and help them understand the special needs of IC patients. Your stories will help them better understand how their decisions affect IC patients, healthcare providers, and scientists.
Read More
Tell the Institute of Medicine NOW what it's like to live with IC pain! Act now and share your individual experiences with pain and how it affects your life, including:
- Barriers that have prevented you from receiving effective pain care.
- Stigmas you have endured as someone struggling with pain.
- Experiences (positive and negative) you have had when seeking treatment.
Providers are also asked to submit information on:
- Groups that may be inadequately treated for pain.
- Clinical experiences in providing pain care, particularly in the primary care setting.
Please submit your comments by February 8, 2011 to the committee here.
Next, share this email with your family members, friends, colleagues and health care providers and ask them to respond. Don’t forget to post this on your Facebook wall or send a tweet to your followers on Twitter.
Thank you for your help — together we continue to conquer pain!
The Senate has not taken-up the House-passed CR. Instead, Senate Democrats yesterday released an “omnibus” appropriations package for FY11. This legislation contains all 12 unfinished appropriations bills for FY11, including the bill that funds the NIH. The omnibus package contains a $750 million increase for the NIH over FY10, including $50 million for the Cures Acceleration Network, a new NIH program established to speed the translation of basic biomedical research findings into better clinical treatments and cures.
In the next few days, Democratic leaders will attempt to pass the omnibus bill on the Senate floor. It is unclear at this time if they will have the votes to secure passage. If the bill fails to advance, then the Senate will likely approve the House-passed CR, which would result in level funding for the NIH in FY11. If the Senate does pass the omnibus bill, then it will go to the House for consideration. Passage of the omnibus bill is a preferable outcome for the interstitial cystitis community as it provides a $750 million increase in funding for much needed biomedical research.
ACTION REQUESTED
Please contact your two senators today and ask them to support an increase of $750 million for the NIH as called for in the Senate omnibus appropriations bill. Call the Capitol Switchboard at (202) 224-3121 and they can connect you to the appropriate office. Tips for calling senate offices:
- Be prepared to leave a brief (60-90 second) voicemail explaining that you are calling in support of increased funding for the National Institutes of Health in FY11.
- Identify yourself as a constituent and a member of the Interstitial Cystitis Association and ask to speak with the senator’s healthcare legislative assistant.
- When connected to the health aide (or his/her voicemail), explain that hope for a better future for patients and families living with IC rests heavily on biomedical research support by the NIH.
- Ask that the senator to support an increase of $750 million (2.4%) for the NIH in FY11 as called for in the Senate omnibus appropriations bill.
- Give the aide your contact information and ask to be kept informed of the senator’s action on this important issue.
- Calling works best, but if you would prefer, you may also e-mail senate offices.
We need to continually remind Congress and the leadership of the National Institutes of Health (NIH) about how debilitating IC can be. If IC got in the way of your summer plans, tell your story to Congress and the NIH director. Take a few minutes and write down how IC affected your life. Email your story to your Washington representatives and the leadership of the NIH. Remind them that we need to find answers for people with IC today: We need to find better treatments and a cure, we need doctors and healthcare providers who understand the special needs of IC patients. We need their commitment to help people with IC. Join the movement - take action - send your emails today:
- Find emails for your representatives online:
- Email NIH: NIH-Listens@NIH.gov
If you want to share a copy of your emails with the ICA, please send them to takingaction@ichelp.org. Thanks for being an IC advocate!
Continued funding is in serious jeopardy. The U.S. Senate is set to mark up its fiscal year 2011 spending bill. This bill funds NIH research studies and the CDC IC Education and Awareness Program.
Read More
- Overall Investment in NIH: The ICA supports aggressive overall funding for NIH at a level of $35 billion for FY11. This funding level will help preserve the initial investment in healthcare innovation and biomedical careers established in the American Recovery and Reinvestment Act of 2009 (ARRA). Strengthening and preserving our nation’s biomedical research enterprise through NIH fosters economic growth and sustains the innovations that enhance all of our health and well-being.
- IC Education and Awareness Program: The ICA urges Congress to restore funding for the continuation of the IC Education and Awareness program at the CDC at $660,000 for FY11. The FY11 President’s budget request recommends elimination of this program. The IC program at the CDC promotes public awareness of IC through education for health care providers and the general public. Although IC affects at least one in every 77 Americans, many healthcare providers are not familiar with its symptoms or presentation. As a diagnosis of exclusion, physicians must be aware of IC in order for patients to receive timely and accurate diagnosis.
The ICA is working closely with many partners to ensure that federal regulations allow adequate access for pain patients. We are grateful to all of those in the IC community who helped officials understand the vital need for access to these medicines by submitting comments to the FDA last spring. You were not alone-2,170 comments were received by the FDA about the need for less restrictive guidelines.
The FDA continues to seek input from patients, healthcare providers, pharmacists, and industry stakeholders about this proposed regulation. The comment period runs through October 19, 2010.
Read a great summary of the draft plan
Download all 374 pages!
Learn how to submit a comment
For the past 5 years, Congress has provided funding to the Centers for Disease Control and Prevention (CDC) for an IC Education and Awareness Program. This unique program promotes public awareness of IC through education for health care providers and the general public. The program focuses on providing targeted information about IC research, diagnosis, treatment, and self-help strategies through podcasts, print materials, and website content, as well as social networking, new and traditional media. By increasing communication between patients and their families, IC advocates, and healthcare providers including physicians, researchers, and public health specialists, the program develops enhanced communication channels for information sharing. It also promotes continued partnership between government agencies, voluntary patient organizations and non-profits, and other strategic partners.
Healthcare provider and patient education about IC is essential to ensure patients receive accurate and timely diagnosis and treatment. Unfortunately, continued funding for this program is in serious jeopardy, as President Obama’s fiscal year 2011 budget request recommends its elimination. Although the President’s budget request puts the IC Education and Awareness program in danger, Congress will ultimately decide whether or not to continue funding the program. The Interstitial Cystitis Association (ICA) urges all IC advocates to take action today by contacting your representative and senators to encourage them to fully fund the IC Education and Awareness program at the CDC!!!
Please send this message to your representative and two senators:
You can find your representative and senators by going to www.Congress.org and entering your zip code Dear ______________: As a constituent and patient living with interstitial cystitis (IC), I am writing to urge you to restore federal funding for a critical IC program in the FY11 Labor-HHS-Education Appropriations Bill. IC is a painful condition that consists of recurring pressure or discomfort in the bladder and pelvic region, and is often associated with urinary frequency and urgency. The cause of IC is unknown. Diagnosis is made only after excluding other urinary/bladder conditions, which causes one or more years delay between onset of symptoms and treatment. When healthcare providers are not properly educated about IC, patients may suffer for years before receiving an accurate diagnosis and appropriate treatment. For the past 5 years, Congress has provided funding to the Centers for Disease Control and Prevention (CDC) to promote IC education and awareness. The CDC program supports much-needed healthcare provider and patient education, as well as information sharing between patients, healthcare providers, and researchers. Healthcare provider and patient education is essential to ensure that patients receive accurate and timely diagnosis and treatment. Unfortunately, President Obama’s FY11 budget request recommends the elimination of this program. I urge you to support me and other IC patients by asking the Labor-HHS-Appropriations Subcommittee to provide $660,000 for IC Education and Awareness Program in their FY11 bill (level funded from FY11). Your assistance is greatly needed!
Thank you for your consideration of this request. Please advise me of your actions at your earliest convenience.
Sincerely,
Your Name
Your Address
The ICA Capitol Hill Walk is rapidly approaching and even if you can’t travel to Washington for the event, you can still be involved and help to educate Congress about IC! On Thursday, March 25 fill up the inboxes of your Congressional representatives with messages about IC! Tell them what IC is, how it has affected you, and urge them to ensure that the CDC continues to receive funding to raise awareness about IC. Visit the “How to be an Advocate” section of the website to learn how to contact your representatives, download a sample letter, and review statistics about the number of people in your state with IC. Together we will Conquer IC and Change Lives!
Raise awareness for IC this week by sharing your positive firsthand experience with the ICA on Greatnonprofits.org! Greatnonprofits.org lets potential donors learn more about an organization before they donate. The ICA relies on donations to help cover the cost of advocacy, research funding, and education programs. Tell them and others about the ICA Update, www.ichelp.org, the ICA e-Newswire, patient support and information through ICAmail@ichelp.org, and all of our other programs.
Go to www.greatnonprofits.org, search on Interstitial Cystitis Association, click on the ICA name in the results and, when the ICA's page opens, click on the “Write a Review” button on the left. If you’d like help with writing or posting your review, contact the ICA at ICAmail@ichelp.org. You have until October 19, 2010 to submit comments to the FDA: Title: “Risk Evaluation and Mitigation Strategies for Certain Opioid Drugs; Notice of Public Meeting; Reopening of Comment Period.” Docket ID#: FDA-2009-N-0143.
Submit written comments to: Division of Dockets Management (HFA-305); Food and Drug Administration; 5630 Fishers Lane, rm. 1061; Rockville, MD 20852.
Submit electronic comments by going to regulations.gov and clicking on the “Submit Comment” tab.
For further information call 301-796-3448; or e-mail: OpioidREMS@fda.hhs.gov.
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