congress - IPPF

You may be aware of the IPPF’s advocacy efforts. Now, we need you to advocate, too. Your story is important and shows that rare disease not only affects Americans, but Americans in your district. Your story proves to congressional members that their decisions have a great impact on human life and well-being. The IPPF encourages you to participate in bringing awareness of issues and legislation that affect the rare disease community to your state and federal representatives.

This may seem like a daunting process, but the IPPF is here to help. We have tools to support you as you prepare to speak with legislative members. One of the most important things to remember is that legislators are people, too. Look for common ground—they are parents, brothers, sisters, and friends. Statistically, they almost certainly know someone with a rare or autoimmune disease.

The following suggestions can help you to successfully become an advocate:

Contact the IPPF at advocacy@pemphigus.org to express interest in advocating at a local and/or national level. We can explain issues and legislation that the IPPF currently supports.
Identify your federal lawmakers by using the online tools at senate.gov (US Senate) and www.house.gov (US House of Representatives).
Monitor the congressional calendar. District work periods are the best time for lawmakers to meet with local constituents. Take advantage of the August recess. This is a busy time when many lawmakers hope to meet with their constituents to learn about issues affecting them and what they can do to help.
Schedule an appointment by sending a formal invitation to the lawmaker’s scheduler at least three to four weeks in advance of the proposed meeting date. Check your lawmaker’s website, as they may have a formal process for submitting meeting requests.

SAMPLE EMAIL TEMPLATE

Dear [Name],

I am writing to request a district meeting with (insert elected official here). As legislators increasingly play a role in shaping health care policy that impacts my access to quality and affordable care, I welcome the opportunity to discuss with you some of my challenges and opportunities patients face when caring for themselves.

I am available to meet with you on (suggest a few dates that work for you). If those dates do not work for you, I am happy to discuss other options with your staff. I can be reached at (insert phone number) or at (insert email).

Sincerely,

[Your Name]
[Your address]

About a week later follow up with a phone call.

PHONE CALL TALKING POINTS TEMPLATE

Hello, my name is [Your Name].

I’m a patient with pemphigus/pemphigoid in [Your City, State].

I’m following up on a written invitation I sent to [Name of Elected Official] wishing to speak with him/her to discuss issues facing patients like me when trying to obtain quality and affordable healthcare and prescriptions.

I would like to schedule an opportunity for [Name of Elected Official] to visit their office in the next three to four weeks. Do you have any availability?

(If they need time to check on the schedule, give them your name, email, and phone number. Be flexible. If they are unable to meet on the date(s) you suggested, discuss other options with them.)

Ask them if there is any required paperwork you need to submit prior to the meeting.

Thank you for your time, and I look forward to meeting [Name of Elected Official] at their district office.

THE VISIT:

Understand the issues you are about to discuss. This is your story and it is important to use your experiences as compelling evidence of the issues at hand.
Share your concerns with your elected official. If available, use the handouts that the IPPF provides on the policy or regulatory issue.
Get to the point. Don’t take too long to make your pitch. Tell them who you are, the community you represent, the number of patients with our disease, what your primary concerns are, and how and why these concerns are related to a certain piece of legislation or regulatory requirement.
- This should be conveyed in about 10 minutes.
- If they ask a question and you are unsure of the answer, please say so and let them know you will find out and get back to them. The IPPF is happy to help you find the information.
Double-check your facts and figures. Make sure that you are presenting accurate information.
Thank your elected official for specific votes and efforts where they have supported legislation that helps our community.
Take a photo with the elected official and their staff. Please share it with the IPPF. We love to post photos of our community participating in advocacy efforts.

Follow up by thanking your elected official for the visit.

THANK YOU NOTE TEMPLATE

Send by email or regular mail.

Dear [Name],

Thank you for taking the time to meet with me on [insert date].

As a constituent, I appreciate the opportunity to tell you about my disease and to share my story with you to see the impact healthcare policy has on patient access to care. It was an honor to meet you.

[Insert main points from the meeting as a way to reiterate your position.]

Please do not hesitate to contact me at [your phone or email address] if you have any further questions regarding [insert legislation or regulation name]. I welcome the opportunity to serve as a resource for you on these important issues.

Sincerely,

[Your Name]

Follow up with IPPF staff. Share any action items resulting from the meeting with the IPPF advocacy team by phone or email.

We hope this helpful guide encourages you to get you involved in advocating for our community and for those who cannot advocate for themselves. We are always looking for new ways to advocate for the IPPF community and would appreciate any feedback.

On March 2nd, 2016, six of my fellow pemphigus and pemphigoid (P/P) advocates and I visited my Congressional members to ask them to co-sponsor legislation that would make it easier for Medicare patients to have IVIg infusions done at home. IVIg therapy is a treatment that many patients such as myself use in conjunction with immune suppressant medication to control our diseases.

Unfortunately, getting IVIg home infusions under Medicare can be complicated because there is a gap between Medicare Part B and Medicare Part D. Infusion therapy is fully covered by Medicare in hospitals, skilled nursing facilities, hospital outpatient departments, and physician offices, but not in a patient’s home. However, if a patient wants to get the infusion done at home, Medicare pays for the infusion drugs (under Medicare Part D), but not the medically necessary services, supplies, and equipment used in the provision of infusion therapy (under Part B). This makes access to these much needed services costly or impossible for many home infusion patients. As a result, most Medicare patients in need of infusion therapy often receive their treatments in health care facilities instead of in their homes, although home may be the setting that is the most desirable, safe, convenient, and by far the most cost effective.

Congress has been concerned with this issue for many years, but has yet to approve any legislation. In January, Congressman Eliot Engel, Representative for New York’s 16th congressional district, and Senator Johnny Isakson, Senior Senator from Georgia, introduced the Medicare Home Infusion Site of Care Act of 2015 (H.R. 605 and S. 275) that would remedy the problem. As we shared our stories on behalf of the entire P/P community, I could see that many of the legislators’ offices we visited began to understand the dilemma. However, it was clear this issue would take an effort by the entire P/P community for our voices to be heard.

I urge you to contact your congressional members and ask them to co-sponsor this crucial legislation. Reach out to the senators on the Senate Help Committee and the representatives on the House Committee on Energy and Commerce who control whether this legislation will move forward. Let’s start a conversation by using the hashtag #medicarehomeinfusionact on Facebook, Twitter, and Instagram. Together we can make a difference!

The purpose of advocating in Washington, DC is to spread awareness and lobby for favorable legislation that affects the entire IPPF community. At Rare Disease Week on Capitol Hill 2016, we had 7 members of the IPPF community advocating for:

HR 971/S1421 (OPENACT): legislation that will repurpose “off label” drugs for rare disease indications that are not currently covered by the FDA
HR 605/S275 (Medicare Home Infusion Act): legislation that will make it easier for Medicare patients to get infusions done in their homes
HR 1600 (Patients Access to Treatment Act): legislation that would cap the amount that insurance carriers can charge patients for more expensive medications
S 2030 (Advancing Targeted Therapies Act): legislation that would allow information learned in clinical trials to be used in the development of new therapies
All Congressional Members to join the Rare Disease Caucus

From the Advocates:

Sarah Gordon

This was my second time advocating on behalf of the pemphigus and pemphigoid community, having visited Capitol Hill with Marc and Kate in the fall. I expected it to be quite similar, and in many respects it was. However, being part of a larger group of rare disease advocates participating in Rare Disease Week made a big difference. Hearing from two congressmen and the newly appointed head of the FDA at the lobby day breakfast emphasized the importance of bringing together advocates from across the rare disease spectrum – not only the power in numbers but also the variety of knowledge and experiences that we could bring to the table.

Mary Lee Jackson

When I received an email about going to Capitol Hill, I got excited and thought it will be easy. But I was wrong it was hard work. I hadn’t walked so much in all of my life. I felt good about what was done on Capitol Hill. It was worth all I went through to get the word out about rare diseases.

Debra Levinson

There’s plenty we can do this election year: Consider writing letters and making phone calls to bolster these pieces of legislation; email your member of Congress, which is made easy utilizing the automatic draft letters on rareadvocates.org; or take advantage of in-district lobby day opportunities to build relationships with your members of Congress. I am hopeful now with so much support we can help ourselves heal. We are the voices of the rare disease community with a common role.

Paula Halicki

Not only was I representing myself, the IPPF, and the pemphigus/pemphigoid community, but I was also representing a lot of other people with healthcare issues who could not represent themselves. And quite a few who never will. Plus I told my story, and a Congressman listened.

Doris Chenier

We may have a rare disease but no one will know about it unless we use our voice to speak to people that can make a change.

Angélica N. García Romero

I had great meetings with the staff of the representatives and felt very accomplished. But to top it all, when I was taking my flight back to Puerto Rico, my representative was on the plane too! When all the turbulence stopped, I went up to him, and had the meeting right there.

The First Amendment to the United States Constitution guarantees the right of all citizens to communicate with their elected officials. So you might be asking yourself, “Does my Congressional Representative really care what I think”? Well, the answer is YES!

A recent study showed that if a Member of Congress has not arrived at a firm decision on an issue that a constituent contacting their Washington D.C. office will influence their decision. The study illustrated the degree of influence that the following types of communication will have on a congress person’s decision: phone calls 72% influence, individualized postal letters 70% influence, and individual email messages 69% influence.[/vc_column_text][vc_custom_heading text=”The study illustrated the degree of influence that the following types of communication will have on a congress person’s decision: phone calls 72% influence, individualized postal letters 70% influence, and individual email messages 69% influence.”

Writing your Congressional Member may seem like a small thing, but they need to know that their constituents are paying attention. They want to hear about what issues are important to you. When writing your letter/email to your Congressional Member, you may want to share your story with them and how it relates to your issue. Personalizing your letter/email will grab their attention and give them more reason to consider your issue. It is recommended that you keep your letter/email simple and no more than three paragraphs. Provide facts about the issue you are addressing and try to be as specific as possible. Be sure that you cite the name and number of the Bill or Legislation that you are asking them to support. If they are already a supporter of the Bill, thank them.

Don’t forget to provide your contact information so they can respond directly to you. Remember, your voice can go a long way towards helping your Congressional Member know where the public stands on your issue. The more you correspond with your representative, the more it will help you build a long-lasting relationship with him or her. That relationship is not only your right as a citizen, but a privilege you should exercise.

On September 9, 2014, members of the IPPF traveled to Capitol Hill in Washington D.C. to talk to their local congress members about legislation affecting the pemphigus and pemphigoid community.

Senior Peer Health Coach Marc Yale, and Patient Services Coordinator Noelle Madsen spoke with six California members of the House of Representatives, and Senators Barbara Boxer and Diane Feinstein. Marc and Noelle sought support for the Medicare Advantage Participant Bill of Rights of 2014 (H.R. 4998/S. 2552).

Medicare Advantage Plans are removing dermatologists (and other specialty physicians) from their networks. This gives insurance companies to ability to eliminate doctors who prescribe vital, but expensive treatments to pemphigus and pemphigoid patients. As a patient or caregiver, you already know how difficult it can be to find a doctor that can treat P/P. Imagine having that physician removed from your insurance. This would be extremely harmful to a patient’s current quality of care.

Marc and Noelle also discussed the Patients Access to Treatments Act of 2013 (H.R. 460). This bill would increase National Institutes of Health (NIH) funding by $1.3 billion. The more funding the NIH gets, the more research can be done for rare diseases like pemphigus and pemphigoid. This bill would also prevent insurance companies from increasing “tier four” treatment costs. Many pemphigus and pemphigoid treatments are considered tier four, and increased costs to these treatments could negatively affect quality of care.

The IPPF feels these pieces of legislation are extremely important to the pemphigus and pemphigoid community. We urge you to contact your representatives and senators to ask for their support of these bills.

If you have questions about these, or other legislative affairs, please contact the IPPF at advocacy@pemphigus.org, or call Noelle Madsen at 855-4PEMPHIGUS extension 105.

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