Last week, Senate Majority Leader Mitch McConnell (R-KY) released the Senate version of health reform legislation entitled The Better Care Reconciliation Act (BCRA). The bill was slated for a vote this week but, after fierce opposition from the public health community, the vote has been postponed until after the July 4^th recess. The bill is expected to undergo some changes in order to gain the support of Senators that have thus far withheld support of the measure.

The bill, while seeking to reduce insurance premiums and provide coverage options to individuals with high healthcare costs, harms patients in the following ways:

• Allows insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on essential health benefits. While insurers will still be required to cover individuals with pre-existing conditions, these individuals may not have all their treatments and services covered.
• Allows states that seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps.
• Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage.
• Allows insurers to charge older Americans five times more than younger Americans for the same coverage.
• Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care.

The Congressional Budget Office (CBO) has stated that the BCRA would cause:

• 15 million more people to be uninsured next year.
• In ten years, that number would grow to 22 million people uninsured.
• Patient out-of-pocket expenditures to rise dramatically, especially for people in states that opt for Essential Health Benefits waivers.
• The prohibitions on annual and lifetime benefit caps could be eliminated in states that opt for Essential Health Benefits waivers.

Now is the time to weigh in with your Senators and make sure they oppose the BCRA as currently proposed and make sure they go back to the drawing board and work together to find ways to protect patients with chronic and costly medical conditions.

Take Action:

• Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner.
• Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.
• Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.
• If you would like to do more, you can request a brief meeting with the staff at your Senators’ local offices (the location office information is on their websites).

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for interstitial cystitis patients. I write to urge you to Vote No on the Senate’s Healthcare Bill.

The Senate Healthcare Bill would:

• Jeopardize patient access to quality, affordable & available coverage
• Cut-off health coverage for millions of Americans
• Bring back annual and lifetime caps on coverage
• Price people with pre-existing conditions out of the insurance market

I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform. It is my hope that you and your colleagues in the Senate will preserve key patient protections and respect the circumstances of those combatting chronic and costly illnesses.

Specifically, please ensure any Senate proposal:

• maintains essential health benefits
• prohibits pre-existing condition discrimination
• prohibits lifetime and annual caps on benefits
• limits out-of-pocket costs for patients in a meaningful way
• allows young adults to stay on family coverage until they are 26

[Add a paragraph of brief information about interstitial cystitis. Tell your story.]

Patients need a transparent, bipartisan effort to stabilize the insurance market, bring down premiums, and retain the patient protections that are so critical to patients, consumers and their families. We urge the Senate to go back to the drawing board, and work together to find ways to protect patients with serious illness.

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

Sincerely,

[Name]

[Address]

Contact the office of your Senator serving on the Defense Appropriations Subcommittee and ask that they support “interstitial cystitis (IC)” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2018 appropriations process

Background

Early each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by constituents.

Senators are currently working on the FY 2018 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. At this critical juncture, if your Senator is listed below as a member of the Senate Defense Appropriations Subcommittee please reach out to their office and ask that they “support the inclusion of interstitial cystitis (IC) in the DoD PRMRP’s eligible conditions list in FY 2018.”

Take Action

• Please consult the list below and see if one of the Senators from your state serves on the Defense Appropriations Subcommittee.
• E-mail ICA’s Washington Representative, Philip Goglas II, at Goglas@hmcw.org and let him know that you would like to reach out to your Senator in this regard. Please include the state you live in in your e-mail as Phil will use this information to identify your Senator and their appropriate staffer.
• Phil will provide you with the e-mail address for your Senator’s health staffer (in addition to their name) and a brief message like the one below.

The Honorable _______

________ Senate Office Building

Dear Senator_______,

Thank you for your work on behalf of the community of individuals affected by serious chronic inflammatory conditions. I am contacting you today to ask that your office supports the inclusion of “interstitial cystitis (IC)” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) during the Fiscal Year 2018 appropriations process. I also wanted to thank you for your past support, which helped ensure that interstitial cystitis remained eligible for study through the PRMRP and IC being currently listed on the draft list for eligible conditions for FY 2017.

IC is becoming increasingly prevalent among active personnel and veterans and is associated with post-traumatic stress disorder. DOD supports important research on medical conditions that impact military personnel, their families and veterans through the Peer-Reviewed Medical Research Program. Congress has historically included IC in the list of eligible conditions for research under this program and IC researchers compete successfully each year.

I hope you will work with your colleagues in support of keeping interstitial cystitis in the current draft list of eligible conditions for study as you finalize the current FY17 appropriations and once again list interstitial cystitis in FY 2018 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY18 bill.

On behalf of all interstitial cystitis (IC)-affected constituents, thank you for your consideration of my request.

Sincerely,
[Name]
[Address]

Senate Defense Appropriations Subcommittee Members:

Richard Shelby, Alabama
Lisa Murkowski, Alaska
Diane Feinstein, California
Brian Schatz, Hawaii
Dick Durbin, Illinois
Jerry Moran, Kansas
Mitch McConnell, Kentucky
Susan Collins, Maine
Thad Cochran, Mississippi
Roy Blunt, Missouri
John Tester, Montana
Steve Daines, Montana
Tom Udall, New Mexico
Jack Reed, Rhode Island
Lindsay Graham, South Carolina
Lamar Alexander, Tennessee
Patrick Leahy, Vermont
Patty Murray, Washington
Tammy Baldwin, Wisconsin

Background

Congress is currently debating significant changes to the healthcare system, including modifications that will impact private insurance expenses and accessibility. This debate has the potential to create many negative outcomes for individuals and families affected by chronic or costly medical conditions. If federal patient protections are ultimately removed or weakened, then many patients could be exposed to increased costs, medical bankruptcy, and lack of access to needed care or therapies.

Members of Congress need to understand that their constituents expect them to maintain and strengthen patient protections in the healthcare system. The best way to educate your two Senators and your House Representative about your needs and earn their support for patient protections is to connect with their offices and make your voice heard.

Take Action

• Inform ICA of your interest by contacting our Washington Representative Philip Goglas II at Goglas@hmcw.org. At this time, please provide Phil with your address and zip code so ICA can identify your legislators.

• Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.

• Politely and occasionally follow up on the request. You should have an expectation that the office will respond to your specific concerns.

• If you would like to do more, you can request a brief meeting with the staff at your members’ local offices (the location information is on their websites).

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the community of individuals impacted by interstitial cystitis. Interstitial cystitis is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). IC may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain.

As you and your colleagues consider healthcare reforms, please make sure any proposal maintains crucial patient protections that promote access and prevent financial hardships. Specifically, please continue to:

• prohibit pre-existing condition discrimination
• allow young adults to stay on family coverage until they are 26
• limit out-of-pocket costs for patients
• restrict lifetime and annual caps on benefits

[Add a paragraph of brief information about how interstitial cystitis has affected you. Tell your story.]

Thank you for your time and your consideration of this letter. I look forward to hearing from you in regards to these important protections.

Sincerely,
[Name]
[Address]

You can be an ICA Advocate and meet with the local offices of your members of Congress who will be in their districts from Monday, August 1^st until Friday, September 2^nd. Legislators use this time away from Capitol Hill to meet with their constituents and learn about the issues impacting the people they represent. Advocates for ICA can use this opportunity to educate their legislators about interstitial cystitis (IC) and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. ICA will equip you with the rest. There’s POWER in your story – give it a voice through ICA advocacy!

The Issues:
Each year, ICA outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare for the millions of people living with IC. In order for members of Congress to understand and take appropriate action on these issues, their offices need to be properly educated by constituents – one of which is YOU. And you don’t have to be politically minded to participate. You just need to tell YOUR story.

Taking Action is Easy:

• Inform ICA of your interest in making a local congressional visit by contacting our Washington Representative Philip Goglas II at Goglas@hmcw.org. Please provide Phil with your address and zip code so ICA can identify your legislators.

• Consider making a local visit as a group, either with colleagues or other affected individuals from your area that you know.

• ICA’s Washington Representative will send you the contact information for the local congressional office near you. Please call this office and work to schedule a recess meeting at a time that is convenient for you or your group’s schedule.

• ICA’s Washington Representative will send you branded advocacy materials to provide to the office(s) that you meet with. These materials include comprehensive information that can assist you with discussing the issues.

• ICA’s Washington Representative is available to advise and assist you with making an effective local visit. Please let ICA know if you would like any training and we will connect you with the appropriate folks so they can support your efforts and answer any questions you might have.

• Meet with your local congressional office, tell your story, ask them for their assistance on key issues, provide them with the branded advocacy materials, and then report back to ICA with a brief summary of your discussion and whether you believe any follow up is needed. Reports should be submitted to ICA’s Washington Representative Philip Goglas II at Goglas@hmcw.org.

Signing the petition is a two-step process. After signing, check the email account you used to sign the petition. The White House will send an email asking you to confirm your signature. Please share the link to the petition with your friends and family.

Contact your legislators on Tuesday, April 19 and join IC advocates from across the country who will be on Capitol Hill asking Members of Congress to:

• Ensure the National Pain Strategy is carried out by calling for an implementation plan and corresponding budget;
• Provide $34.5 billion for the National Institutes of Health (NIH) in FY 2017. NIH should have the resources they need to advance critical research projects on an annual basis, including those on IC.
• Include Interstitial Cystitis in the Department of Defense (DOD) Peer-Reviewed Medical Research Program.
• Provide $1 million for CDC’s IC program in FY 2017.

Call and email your legislators on Tuesday, April 19, or participate via social media by tweeting or posting on their Facebook pages.

To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and the phone number of your House office will appear. You may need to enter your full address if more than one Representative is listed.

To determine your Two Senators: Visit www.senate.gov and select your state in the drop-down list in the top-right corner of the webpage. Click ‘go’ and the phone numbers of your Senators will appear.

Call-in Instructions:

1. Call your legislator’s offices
2. Tell the person that answers the phone that you are a constituent.
3. Ask to speak with the health staffer and deliver the message below. If you can’t reach the health staffer, it is OK to deliver the message to someone else or to a voicemail.
4. Recommended message – [brackets] indicate where to insert specific information:
   • I am a constituent
   • I am contacting you to ask you to ensure the National Pain Strategy is carried out, provide $34.5 billion for the NIH in FY 2017, include interstitial cystitis in the DOD Peer-Reviewed Medical Research Program, and provide $1 million for CDC’s interstitial cystitis program in FY 2017.
   • Interstitial Cystitis is a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency.
   • [Briefly describe how having IC and IC pain have affected your life]
   • Please keep me posted on the actions you take.
   • You can reach me at [phone and/or email].

Social Media Instructions – for Facebook or Twitter:

Like your legislators Facebook pages and post a status on Facebook and Twitter asking your legislators to ensure the National Pain Strategy is carried out, provide $34.5 billion for the NIH in FY 2017, include interstitial cystitis in the DOD Peer-Reviewed Medical Research Program, and provide $1 million for CDC’s interstitial cystitis program in FY 2017. Here are some examples of what you can post:

“@(put the name of the legislator you are trying to reach) ensure the National Pain Strategy is carried out #icawareness @ichelp”

“@(put the name of the legislator you are trying to reach) provide $34.5 billion for the NIH in FY 2017 #icawareness @ichelp”

“@(put the name of the legislator you are trying to reach) include interstitial cystitis in the DOD Peer-Reviewed Medical Research Program #icawareness @ichelp”

“@(put the name of the legislator you are trying to reach) provide $1 million for CDC’s interstitial cystitis program in FY 2017 #icawareness @ichelp”