Chat
Transcript: Research chat, April. 18, 2007

Sheila Rittenberg with Sen. Gordon Smith, R-Ore.

National Psoriasis Foundation Director of Advocacy Sheila Rittenberg discusses political advocacy, answering participant's questions about our new bill, the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007—what it means, what it covers, how we lobbied for it on Capitol Hill and how people around the country are getting involved and making a difference.

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Chat transcript

Mary_H: Welcome to the moderated "Chat for a Cure" chat room. Tonight's speaker will be Sheila Rittenberg, Director of Advocacy, National Psoriasis Foundation.

Mary_H: What PPARCCA means, what it covers, how the Foundation lobbied for it on Capitol Hill and how people around the country are getting involved and making a difference.

Amanda_T: I am looking forward to learning more about PPARCCA

Mary_H: Good! You have come to the right place

Mary_H: I hope you will join us at 5pm PDT for the chat with Sheila Rittenberg

Mary_H: Welcome to the moderated "Chat for a Cure" chat room. Tonight's speaker will be Sheila Rittenberg, Director of Advocacy, National Psoriasis Foundation.

Mary_H: Through her position with the Foundation, Sheila works with national health plans to improve access to treatments. She also leads efforts to make legislative changes to increase monies dedicated to psoriasis research and to improve psoriasis patients' acce

Mary_H: access to care

Mary_H: Tonight, Sheila will be speaking with us about the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2007 bill (also known as PPARCCA) -

Mary_H: what PPARCCA means, what it covers, how the Foundation lobbied for it on Capitol Hill and how people around the country are getting involved and making a difference.

Mary_H: This is a moderated (controlled) chat, meaning that questions will be sent to the moderator who will then select and post messages to the board in a controlled fashion - one at a time.

Mary_H: Please do not post your question more than once. Multiple postings will not give priority to your question.

Mary_H: When you send a question to the moderator, the question will appear on your screen, but will not be seen by the rest of the participants, until the moderator has posted your question to the chat room.

Mary_H: To be sure all members have the chance to participate, not all messages will be posted during this chat session. Your message may also be held and posted later in the chat.

Mary_H: Please note that the moderator and speaker will not be accepting private messages during the chat. If you have a question or encounter a problem, we ask that you private message the chat assistant - "Amanda_T".

Mary_H: We will be accepting questions for our speaker in a few minutes. At this time I would like to welcome Sheila Rittenberg to the chat and have her share some information with us about herself, her work with the Foundation and PPARCCA.

Mary_H: Welcome Sheila. Thank you for taking the time to be with us tonight.

SheilaRittenberg: Hello, Everyone. It is a pleasure to meet you "virtually." I am excited to answer your questions tonight about our new bill - the first-ever comprehensive legislation on psoriasis. Having a bill in Congress is a magnificent step forward for the psoriasis

SheilaRittenberg: community. PPARCCA, as we call it, has become a rallying point for volunteers around the country and sums up for members of Congress in a nice package the important steps needed to bring us closer to a cure.

SheilaRittenberg: Any questions?

Lucia_K: How exactly will PPARCCA help the psoraisis community?

SheilaRittenberg: There are specific ways that PPARCCA will help, and we have researched these with our scientific and medical advisors...

SheilaRittenberg: The components of the bill are based on what the Foundation's scientific, medical, and public policy experts and advisors recommend as being key to making progress in treatment and access for these conditions. PPARCCA has 4 distinct components -

SheilaRittenberg: it spells out very clearly actions in psoriasis research, in data collection on patients, in calling for a report on Access to Care and in convening a summit on psoriasis for federal agencies. The bill stipulates the steps to be taken in each area. We have

SheilaRittenberg: analyzed carefully what those steps should be - what the actions to take are that will bring about the greatest amount of change for psoriasis - and that's why we wrote them into the bill.

Catie_C: When do you expect the bill to become legislation?

SheilaRittenberg: Some bills pass in a matter of months and others take years... and some never pass but pieces of them are incorporated into other legislation - and sometimes federal agencies pick up a component and implement it without Congressional mandate. All of these

SheilaRittenberg: ways can also be effective ...as long as the actions stipulated in the bill are implemented!

Mary_H: How many co-sponsors do we have for the PPARCCA bill?

SheilaRittenberg: To date, we have 24 co-sponsors. You can also follow the list of cosponsors at www.thomas.loc.gov

Mary_H: Where can we find the current status of any bills that are going through Congress that affect the psoriasis community?

SheilaRittenberg: Just visit www.thomas.loc.gov, click on search bill summary/status and then type in 'psoriasis' - all relevant legislation will come up

Catie_C: what does it mean to be a cosponsor?

Olga_T: How can psoriasis constituents support PPARCCA? Or help it pass?

SheilaRittenberg: Being a cosponsor means that a member of Congress endorses the intent of the bill, supports the cause, and wants the legislation to be enacted. The more cosponsors we have on the bill, the greater the likelihood that it will be enacted.

SheilaRittenberg: We need to recruit more co- sponsors on the bill. This means that a member of Congress officially expresses his/her support of the legislation. You can participate by writing letters/sending emails to your Representative in the House,

SheilaRittenberg: attending their town hall meetings, calling the local office - asking that your representative become a cosponsor of the bill. Go to www.psoriasis.org/advocacy/action to find out more.

Catie_C: What was the Foundation's involvement in getting the bill introduced?

Mary_H: How long have you been trying to get this bill in existence?

Olga_T: Are there certain States in the US that have more leverage to help pass this bill?

SheilaRittenberg: The bill was introduced on February 16th and leading up to that, we worked for about a year formulating the initiatives that would pave the way for this legislation. It doesn't happen overnight! ...

SheilaRittenberg: For example, in 2005 and in 2006, we had psoriasis resolutions introduced to the U.S. Congress to educate policymakers and staff about psoriasis, build support on Capitol Hill, and increase awareness of the need for the federal government to elevate ...

SheilaRittenberg: psoriasis and address the challenges associated with the condition.

Olga_T: Are there certain States in the US that have more leverage to help pass this bill?

SheilaRittenberg: In a way, yes. Certain members of Congress sit on committees that are more important than others (because they have jurisdiction over psoriasis in some way, for example, health research ). So we want those congressional representatives to be on our side.

Catie_C: What was the Foundation's involvement in getting the bill introduced?

SheilaRittenberg: The National Psoriasis Foundation alone wrote the bill and proposed it to Congressman David Wu, Oregon. In introducing the bill, Mr. Wu is the author - and sponsor - of PPARCCA ...

SheilaRittenberg: Rep. Jim Gerlach (R-PA) is the first original co-sponsor of the bill and Rep. Stephen Lynch (D-MA) and Rep. Debbie Wasserman-Schultz (D-FL) are two other original co-sponsors - meaning that they added their name to the bill immediately upon its introduction.

Mary_H: How can I find out if my representative is a sponsor?

SheilaRittenberg: You can follow the list of cosponsors at www.thomas.loc.gov. You can also go to www.psoriasis.org/advocacy/action and pop in your zip code - your members of Congress will appear and from there, you can find out if s/he has supported PPARCCA.

Mary_H: Is there a minimum number of co-sponsors needed to present the bill to Congress?

SheilaRittenberg: There is no minimum but of course, the greater the number of cosponsors, the greater the likelihood that the bill will be acted on.

Kimbercat: is it too late to nag them about being a cosponsor?

SheilaRittenberg: Definitely not!! We are in the active recruitment phase for co-sponsors. Volunteers around the country are contacting their congressional representatives to sign on...

SheilaRittenberg: There is a big push in states right across the U.S. to pull in more support for the bill. We hope everyone on this chat will participate.

Catie_C: Hasn't there been some kind of bill on psoriasis done before?

SheilaRittenberg: We have had Resolutions introduced into the U.S. Congress (in 2005 and 2006) but never authorizing legislation. This is the 1st-ever comprehensive legislation to be introduced...

SheilaRittenberg: Unlike a Resolution, when authorizing legislation is enacted, the bill becomes law. (Resolutions simply express the sense of Congress and are non-binding.)

Catie_C: Are Republicans or Democrats more in support of the bill?

SheilaRittenberg: The bill has bipartisan support and it is always a good idea to work with both sides "of the aisle" on any issue. We definitely need strong Democratic support since the Democrats control both the House and Senate; ...

SheilaRittenberg: however, it is unlikely that the bill would move through the Congress without support from Republicans and Democrats. Psoriasis doesn't discriminate so we shouldn't either! :)

Kimbercat: Sheila, do we still need to ask senators to submit report language?

SheilaRittenberg: No, at this point the dealdine for that request has passed. Several offices were approached and we are in the midst of following up to determine who in the Senate submitted the language for us.

Catie_C: What does report language mean?

ouchyk: Does someone from the Congressional side need to submit as well and has that been done?

SheilaRittenberg: "Report Language" is text that accompanies the appropriatiosn measure that Congress passes every year. It is a report explaining the appropriations bill. The Appropriations bill outlines funding for the agencies that have a role in psoriasis.

alli: I get frustrated cause my rep always promises me the moon then never signs on to anything we ask for. What should I do?

SheilaRittenberg: I'm going to have Alyssa answer... she's working with volunteers all around the country... Alyssa?

SheilaRittenberg: Alli, unfortunately there is no easy answer in this situation; however, as we always say, persistence is the key!

alli: Trust me I'm trying!!

SheilaRittenberg: If your Rep. promises to support our iniatives, then it is important to keep following up with his office. You should also encourage friends and family n you community to get involved

SheilaRittenberg: There is strength in numbers, and the more constituents your Rep hears from, the greater the likelihood he will support our cause.....

SheilaRittenberg: If he is not willing to cosponsor our bill, there are other ways he can help the psoriasis community, such as making a statement in the congressional record or attending on your support group meetings.

SheilaRittenberg: I am happy to work with you on these initiatives. :)

ouchyk: Does someone from the Congressional side need to submit as well and has that been done?

SheilaRittenberg: Do you mean the Senate side?

SheilaRittenberg: I'll assume that this chatter wants to know if the bill still needs to be introduced in the Senate. The answer is Yes! We have a few people with close connections to some senators and they are trying...

SheilaRittenberg: ...tohave one introduce PPARCCA. It will be a slower process than introducing PPARCCA was on the House side.

Mary_H: Do we have enough support to override a Presidential veto if necessary?

SheilaRittenberg: This bill is not controversial and I can't imagine this resulting in a veto threat by the President. The bill has to pass both the House and Senate in identical fashion before it can be sent to the President who then can either sign it into law or veto it.

Mary_H: How do broad initiatives like increased funding for research and a national registry help people like me whose insurance won't cover the treatments that I need now?

SheilaRittenberg: Those initiatives won't directly help you with your insurance challenges and that's why we wrote the section of the bill that calls for an Institute of Medicine (IOM) report on Access to Care. In that component of the bill, we call on the ...

SheilaRittenberg: IOM to study the problems that patients experience in accessing the treatments they need and to make a set of recommendations on how to approach these problems. IOM reports are prestigious and have a lot of visibility ...

SheilaRittenberg: and will bring the issue of insurance coverage for psoriasis into the limelight.

Catie_C: Once the bill is passed in the house, we go through the same process with the Senate?

Kimbercat: thanks for all you folks at NPF have been doing....I need to get going....bye

SheilaRittenberg: Yes! It has to pass in both the House and Senate and in fact, the bill on both sides has to be if not identical, very similar. They have to be "companion" bills.

Mary_H: Did the Foundation have to make any contributions to the supporters to get this bill introduced?

SheilaRittenberg: No, the Foundation is actually prohibited from making political donations. If we did, we would lose our 501 c 3 status - a special tax-exempt status for the National Psoriasis Foundation from the IRS because of the Foundation's charitable mission.

Mary_H: How long does a typical bill take to wind its way through Congress?

SheilaRittenberg: Some bills pass in a matter of months and others take years... and some never pass but pieces of them are incorporated into other legislation -...

SheilaRittenberg: and sometimes federal agencies pick up a component and implement it without Congressional mandate. All of these ways can also be effective ...as long as the actions stipulated in the bill are implemented!

Mary_H: Are there any other Psoriasis based non profits giving support to this bill or had anything to do with writing of this bill?

SheilaRittenberg: Yes... there are a few organizations that are endorsing the bill ... The American Academy of Dermatology, the Arthritis Foundation, the American College of Rheumatology to name a few to date.

Mary_H: Is the Foundation a lobbying organization, now?

SheilaRittenberg: Some non-profits have a separate but connected "arm" to the organization that is a lobbying arm. We are not set up that way at this point. ...

SheilaRittenberg: However, as a 501 c 3 tax-exempt non-profit, we are able to allocate a certain percentage of our resources to lobbying/advocacy and the Psoriasis Foundation currently meets that standard.

Mary_H: Any idea what the timeframe might be for our bill? Can we assume that, because it lacks controversial nature--the time frame might be shorter? Or does one have nothing to do with the other?

SheilaRittenberg: I would say that one has nothing to do with the other. PPARCCA might meet opposition because it is disease-specific, ...

SheilaRittenberg: and some members of Congress oppose disease specific measures - whatever the cause. Often, bills need to be introduced more than once and they gain more support each time they are.

Mary_H: Are there bills that have passed that are disease-specific? Is there any precedence for this bill?

SheilaRittenberg: Yes, a number of bills have been enacted by Congress and signed into law by the President. Most recently, a bill related to autism was signed into law. ...

SheilaRittenberg: Each year, hundreds of disease specific bills are introduced in the House and the Senate.

Catie_C: Why do some diseases get more attention in congress than others?

SheilaRittenberg: They have been lobbying longer, have very well funded advocacy organizations that represent them in Washington, D.C. and probably represent diseases that fall into the category that I call "disease-of-the-month" causes... psoriasis was an unknown as ...

SheilaRittenberg: ... recently as two years ago.

Mary_H: Are there any members of Congress or their immediate family who has Psoriasis that we know of?

SheilaRittenberg: We know of at least one member of Congress with psoriasis and we know of several staffers to members of Congress who either have psoriasis or are close to someone who does.

Mary_H: Does anyone have questions for our speaker?

SheilaRittenberg: OK, I have a question for all of you: what are YOU prepared to do to make sure that PPARCCA is passed??

Catie_C: email my representative

SheilaRittenberg: If you're interested in learning more about what you can do, visit our web site or email advocacy@psoriasis.org. We will have lots of specific suggestions for easy ways to take action and be a part of this movement!

ouchyk: I've done my part in contacting my rep. I will have to continue to encourage others to ask for help with emailing and callling reps.

ouchyk: best wishes for continued success as you move forward with this bill.

SheilaRittenberg: Yes... encouraging others is terrific. You could set up an email appeal to friends and family and pop everyone's email address in the 'blind copy" box - so you write one note to all at once. Also, remember that if your Rep hasn't signed on, ...

SheilaRittenberg: you can contact him/her more than once!

Mary_H: Information about PPARCCA and other advocacy issues can be found on our Web site, under the "Advocacy" pages.

Mary_H: If you have a specific question that was not addressed during tonight's chat, we welcome you to contact the Psoriasis Advocacy Department at advocacy@psoriasis.org

Mary_H: This concludes tonight's chat. Thank you Sheila, we appreciate you taking the time to speak to us tonight. You have given us some great information. And the news about PPARCCA is exciting. We will be looking to hear about its progress.

Mary_H: Please be sure to join us on May 15th for next month's "Parent's" chat. Exchange advice, information and encouragement with other parents of children with psoriasis, as well as gaining insight from adults who experienced psoriasis in their childhood.

Mary_H: Transcripts from tonight's chat will be available in approximately one week.

Mary_H: Good night

Catie_C: bye!

Catie_C: thanks!