Frequently asked questions
Use the links below to find answers to commonly asked questions about the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (PPARCCA) of 2007.
- What is PPARCCA?
- How long has this bill been in the works?
- What makes PPARCCA special?
- Will this bill actually change anything?
- How will the broad initiatives in PPARCCA help me?
- How did we get this bill introduced?
- How can I support PPARCCA?
- How many co-sponsors do we have?
- Who introduced PPARCCA in the House and Senate?
- How can I find out if my members of Congress are co-sponsors?
- Is there a minimum number of co-sponsors needed?
- Does writing your congressman/woman work?
- Do both political parties support PPARCCA?
- Do we have enough support to override a presidential veto if necessary?
- With grumblings over spending in Congress, does the bill have a chance of succeeding?
- How much will it cost to implement PPARCCA?
- Since the bill doesn't ask for a specific amount of money, how will it get results?
- If Congress doesn't allocate as much money as we need, will we have to start over?
- How long does a bill typically take to move through Congress?
- What might the timeframe be for PPARCCA?
- Is there a precedent for disease-specific bills like this?
- What happens if PPARCCA isn't passed?
- Is the Psoriasis Foundation a lobbying organization now?
- Do any other nonprofits support PPARCCA?
1. What is PPARCCA?
PPARCCA is the first-ever comprehensive psoriasis authorizing legislation. This bipartisan measure calls upon the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to build their work in psoriasis and psoriatic arthritis by:
- Expanding biomedical research
- Building CDC data collection / patient registry
- Calling for a federal summit on psoriasis
- Requiring an Institute of Medicine report on access to care
The name of the bill is the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007 (PPARCCA). In the House of Representatives it is H.R. 1188 and in the Senate, S. 1459. These are "companion" bills and are identical.
2. How long has this bill been in the works?
The bill was introduced in the House of Representatives on Feb. 16, 2007, and leading up to that time, we worked for about a year formulating the initiatives that would pave the way for the legislation. The Senate version of the bill was introduced on May 23, 2007. These types of congressional actions do not happen overnight! 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 more federal focus on psoriasis.
3. What makes PPARCCA special?
It is the first-ever comprehensive legislation on psoriasis and psoriatic arthritis. When PPARCCA is passed by the House and Senate and signed by the president, it will become law. There has never before been a comprehensive bill or law addressing psoriasis.
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4. Will this bill actually change anything?
The content of the bill is based on the Foundation's scientific, medical and public policy advisors' key recommendations for making progress toward a cure and improving access to care for psoriasis and psoriatic arthritis patients. PPARCCA has four distinct components—it spells out clear actions in psoriasis research, patient data collection, a report on access to care and a summit on psoriasis for federal agencies. The bill stipulates the steps to be taken in each area. We have analyzed carefully what those steps should be—i.e., the actions that will bring about the greatest amount of change for psoriasis—and that's why we wrote them into the bill.
5. How will the broad initiatives in PPARCCA help me when my insurance won't cover the treatments that I need now?
The initiatives represented in the bill won't directly help you with your insurance challenges; that is why we wrote the section of the bill that calls for an Institute of Medicine (IOM) report on access to care. In the bill, we call on the IOM to study the problems that patients experience in accessing the treatments they need and to make recommendations on how to approach these problems. IOM reports are prestigious and have a lot of credibility and will bring the issue of insurance coverage for psoriasis into the limelight.
6. How did we get this bill introduced?
Through laying groundwork, educating members of Congress and their staff about the disease and the Foundation, and through building relationships. We spent more than a year working with different members of Congress and staff and garnering their support for our cause through different initiatives (like making congressional statements about psoriasis and co-sponsoring resolutions for us). This effort helped us to identify members of Congress who are real "champions" for our community. Volunteer advocates across the country—in Pennsylvania, New Jersey and California, to name just a few—helped make these key connections with members of Congress. This year, with a cadre of more than 60 "friends" in Congress, we took a draft of the bill to our key champions and friends and asked if they'd introduce it. We were successful because of the groundwork that we laid and the relationships that our grassroots advocates established coast to coast.
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7. How can I support PPARCCA?
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 and/or sending e-mails to your representative in the House and your two senators, attending their town hall meetings and calling their offices—asking that they co-sponsor of the bill. Go to www.psoriasis.org/advocacy/action to find out more.
8. How many co-sponsors do we have?
You can follow the lists of co-sponsors on the Psoriasis Foundation Web site by visiting www.capwiz.com/psoriasis/go/hr1188 and www.capwiz.com/psoriasis/go/s1459.
Co-sponsor information is also available at thomas.loc.gov. Just enter the keyword "psoriasis" or the bill number in the "Search Bill Text" field.
9. Who introduced PPARCCA in the House of Representatives and Senate?
The National Psoriasis Foundation worked with Rep. David Wu, D-Ore.-1st, to write and introduce H.R. 1188 in the House and as such, he is the bill's "author" and sponsor. Rep. Jim Gerlach, R-Pa.-6th, is the first original co-sponsor of the bill and Rep. Stephen Lynch, D-Mass.-9th, and Rep. Debbie Wasserman-Schultz, D-Fla.-20th, are the other original co-sponsors—meaning that they added their names to the bill immediately upon its introduction.
Sen. Robert Menendez, D-N.J., introduced the "companion" version in the Senate (S. 1459) and is the sponsor there. Sen. Frank Lautenberg, D-N.J., is an original co-sponsor.
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10. How can I find out if my members of Congress are co-sponsors?
You can go to www.psoriasis.org/advocacy/action and pop your ZIP code in the "Write to Congress" field on the right side of the screen—your members of Congress will appear, and from there, you can find out if they have supported PPARCCA. As described above, you also can follow the lists of co-sponsors at www.capwiz.com/psoriasis/go/hr1188 and www.capwiz.com/psoriasis/go/s1459.
11. Is there a minimum number of co-sponsors needed?
There is no minimum, but, of course, the greater the number of co-sponsors, the greater the likelihood that the bill will be acted on.
12. Does writing your congressman/woman work well in these kinds of situations?
Absolutely! Most of the current co-sponsors are on the bill because they were contacted either in person or by e-mail or phone by people living in their districts. Writing your members of Congress does indeed work—grassroots activity is the main way that legislative change happens. Members of Congress count every letter, e-mail and phone call that they receive from constituents.
13. Do both political parties support PPARCCA?
The bill has bipartisan support. It is always a good idea to work with both "sides of the aisle" (meaning both political parties) on any issue. We definitely need strong Democratic support since the Democrats currently control both the House and Senate; however, it is unlikely that the bill would move through the Congress without support from both Republicans and Democrats.
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14. Do we have enough support to override a presidential veto if necessary?
This bill is not controversial, and we can't imagine it resulting in a veto threat by the president.
15. With grumblings over spending in Congress, does the bill have a chance of succeeding?
The focus in the news on "pork barrel spending" pertains to something called "earmarks"—federal funding set aside at the request of a member of Congress for a specific project based in his/her district or state. PPARCCA is in no way related to earmark spending. PPARCCA is what's known as authorizing legislation, which means it creates programs, expands initiatives and establishes new policies. The bill does not call for a specific amount of funding for psoriasis research because many members of Congress won't endorse bills that detail spending for specific disease research at the National Institutes of Health. The bill does call for the federal government to make psoriasis research a priority and specifies a budget amount for the psoriasis patient registry to be developed by the Centers for Disease Control and Prevention (CDC).
16. How much will it cost to implement PPARCCA?
The overall cost of the bill is less than $4 million. In the scheme of things, to enact a piece of legislation, this is very low. This breaks out as an estimated $3 million for the patient registry, $500,000 for the federal summit on psoriasis and $500,000 for the Institute of Medicine (IOM) report on access.
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17. Since the bill doesn't ask for a specific amount of money, how will it get results?
PPARCCA is an authorizing bill—meaning it creates programs, expands initiatives, establishes new policies and authorizes funding for specific activities. The bill does not actually allocate any funding—separate legislation, known as appropriations legislation, must be enacted annually to provide funding for the programs and initiatives in authorizing legislation. Each year, the Foundation seeks federal funding for psoriasis and psoriatic arthritis research. If PPARCCA becomes law, the Foundation will work with members of Congress during the annual appropriations process to secure specific funding to support the implementation of the various components of the bill.
18. If Congress doesn't allocate as much money as we need, will we have to start over?
Congress and the nation have limited resources to allocate among many important programs, diseases and agencies. We will work hard to secure adequate funding to implement and support all the components of the bill. For instance, if Congress only provides $500,000 for the first year of the Psoriasis Patient Registry and we really need $1.5 million, we will work with the Centers for Disease Control and Prevention to ensure that the $500,000 goes toward the planning and development of the registry and then work in the next year to get additional funding for the program. It is not uncommon for programs to get off the ground over the course of two years due to limited federal funding.
19. How long does a bill typically take to move through Congress?
Some bills pass in a matter of months and others take years; 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 outcomes can be effective. Our goal is for the components of the bill to be implemented!
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20. What might the timeframe be for PPARCCA? Will it pass quickly because it lacks controversy? Or does one have nothing to do with the other?
One has nothing to do with the other. For instance, PPARCCA might meet opposition because some legislators often oppose bills that are disease-specific. Often, bills need to be introduced more than once and they typically gain more support each time that they are as more members of Congress become familiar with the issues.
21. Do disease-specific bills ever pass? Is there any precedent for this bill?
Yes, a number of disease-specific bills have been enacted by Congress and signed into law by the president. Most recently, a bill related to autism was signed into law. Each year, hundreds of disease-specific bills are introduced in the House and the Senate.
22. What happens if PPARCCA isn't passed?
As a bill moves through the legislative process, it can be amended or changed. If PPARCCA doesn't pass both the House and the Senate during the 110th Congress (the current Congress, 2007-2008), it will need to be re-introduced in the 111th Congress (2009-2010). At that time, we will review the legislation and update it with any new information that might have developed since it was first introduced.
23. Is the Foundation a lobbying organization now?
As a 501(c)(3) tax-exempt nonprofit, we meet the standards that allow us to allocate a certain percentage of our resources to lobbying/advocacy. Advocacy has always been a part of our vision; our mission is to improve the quality of life of those affected by psoriasis through education, advocacy and research.
24. Do any other nonprofits support PPARCCA?
Several organizations have endorsed the bill, including the American Academy of Dermatology, the Arthritis Foundation, the American College of Rheumatology, the Society for Investigative Dermatology (SID) and the Dermatology Nurses' Association (DNA).
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