Activists Do Make a Difference

by Kimberly Cantor, Senior Director of Public Policy and Government Relations

Kimberly Cantor

I am inspired by you - by lupus activists. It is that simple. The excitement, enthusiasm, and empowerment felt during the recent Lupus Foundation of America National Lupus Advocacy Summit held June 24-25, 2013 was amazing. All across Capitol Hill, I heard “we are lupus activists; we are here to tell our stories and make our voices heard!” The Advocacy Summit is always an energizing and rewarding event, and 2013 was no exception.

More than 250 lupus activists representing 30 states and the District of Columbia joined forces and spoke with one voice on Capitol Hill. Lupus Activists asked their Senators and Representatives to support lupus research funding and the National Institutes of Health (NIH) and to co-sponsor H.R. 460, the Patients’ Access to Treatments Act (PATA), which seeks to ensure access to treatments for lupus and other chronic conditions.

Lupus activists reinforced their requests when they presented the National Lupus Research Petition with more than 30,000 signatures calling upon Congress to expand the research effort on lupus. In addition, lupus activists also came out in force online generating more than 3,500 e-mails and phone calls to Congress.

What is even more exciting is lupus activists were heard! On July 11, the Senate Appropriations Committee approved a draft of the fiscal year (FY) 2014 Labor-Health and Human Services-Education appropriations bill giving a boost in funding to the NIH. And while the FY 14 Labor-HHS bill has a long and difficult journey ahead, the draft measure demonstrated great support for lupus research funding and federal lupus programs. In addition since June 25, 13 Representatives have agreed to co-sponsor H.R. 460 (click here to see a full list of co-sponsors) bringing the total number of co-sponsors to 66.

The Foundation leads the fight to secure more funding for lupus research and lupus programs, from Capitol Hill to State Houses across the nation. We had an amazing day on Capitol Hill, but the success of advocacy is not measure on one day. To be truly effective, lupus activists must be engaged year round in communicating with their members of Congress on the importance of lupus research funding and on access to treatments.

Help us keep up the momentum to educate Congress on the urgent need to provide more resources for lupus research and access to lupus treatments. Congressman McKinley (R-WV), the sponsor of H.R. 460 and champion, is pushing us to reach 100 co-sponsors by this fall, and we need your help to get there! Please take a moment to send your Representative an e-mail today asking them to co-sponsor H.R. 460. Help us solve the cruel mystery of this unpredictable and devastating disease!

The Power of Sharing Your Personal Story

Kim Cantor

by Kimberly Cantor, Senior Director of Advocacy and Government Relations

A personal story is powerful – to those who tell it and to those who hear it. On June 24 and 25, lupus activists from across the country will meet in Washington, DC for the National Lupus Advocacy Summit, where lupus activists will unite to tell their stories to help solve the cruel mystery of lupus.

The Lupus Foundation of America’s legislative successes would not be possible without the power of lupus activists across the country who work tirelessly to make their voices heard both locally as well as on a national level. For example, their compelling and personal stories have helped:

• Secure more than $27 million for the National Lupus Patient Registry and lupus epidemiological studies at the Center for Disease Control and Prevention (CDC);
• Illustrate the clear impact lupus has had on those who serve in the military by keeping lupus listed as a disease area eligible for research funding under the Peer Reviewed Medicare Research Program (PRMRP) at the Department of Defense resulting in more than $12 million in lupus research to-date; and,
• Encourage 48 bi-partisan members of the United States House of Representatives to join the first-ever Congressional Lupus Caucus led by Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA). 
• Increase funding for health professional education, which led to the creation of The Lupus Initiative
• Co-found the Ad Council's first national lupus awareness campaign on lupus along with U.S. Department of Health and Human Services' Office on Women’s Health (OWH)

However, there is still so much to be done. Lupus is one of the cruelest, most mysterious diseases on earth, yet research on lupus remains underfunded compared to its scope and devastation. Together, we can change this. During the first day of the Advocacy Summit, activists will receive training on basic advocacy principles and the Foundation’s legislative priorities. Day 2, activists will travel to Capitol Hill and meet with their Members of Congress to tell their lupus story, using their story to educate Congress on the Foundation’s legislative priorities, why these priorities are important to people with lupus and to raise awareness of the disease.

Sharing your story and engaging in advocacy is powerful and empowering. We encourage you to become a lupus activist and to engage with your Members of Congress through e-mails, phones call and in-district visits. Plus, there is still time to join the Foundation on June 24 and 25 for the National Lupus Advocacy Summit. Remember: just one story can and does make the difference.

Act now to reduce lupus medical costs and improve access to treatments

By Kimberly Cantor

Kim Cantor

New medications and those in development to treat lupus are mostly biologics – a type of drug derived from living cells that are extremely complex to create.  With a number of new and innovative treatments for lupus in the drug pipeline, these highly anticipated treatments will mean nothing if people with lupus cannot afford them.

Placing vital, life-saving, yet expensive medications used to treat chronic diseases and conditions such as lupus on a “specialty tier” is becoming common practice among health insurers.  Medications on the specialty tier are typically biologics and are highly specialized drugs with few generic or therapeutic equivalents. 
Under a specialty tier, patients are required to pay a percentage of the cost of the drug or a coinsurance. Traditionally, health insurance plans charge a fixed co-pay (i.e. $10, $20 or $50) for the different tiers (i.e. Tier I, II, III) of medications.  However, coinsurance rates range from 25 percent to 33 percent at times,  costing patients hundreds if not thousands of dollars each month and resulting in extremely high and burdensome out-of-pocket costs for patients.

The use of coinsurance and the specialty tier is becoming more prevalent in insurance benefit design as companies look to control costs and drive enrollees onto cheaper generic drugs.  The problem is that in many cases there are no generic alternatives and co-insurance is causing many people with chronic diseases and conditions to underutilize treatments or go without treatment at all.

Specialty tiers are fundamentally unfair and discriminatory.  And the practice imposes a significant cost-sharing burden on patients who rely on these highly-specialized drugs.  That is why the Lupus Foundation of America is a founding partner of the Coalition for Accessible Treatments (CAT).  CAT is a coalition of 18 national patient and provider organizations working together to address the problems created by the use of co-insurance and specialty tiers.  In 2012, the Coalition successfully worked with Representatives David McKinnely (R-WV) and Lois Capps (D-CA) to introduce the Patients’ Access to Treatments Act (PATA).

PATA seeks to end the practice of discriminating between medications with a fixed co-pay and specialty tier drugs by requiring commercial health insurers to impose the same co-pay obligations for specialty drugs as they do for tier III medications.  Our goal is to increase access to these important drugs and reduce the excessive cost-sharing obligation – paying a hefty coinsurance. 

The Foundation is excited to working with the CAT again this year, and we were thrilled to have our Congressional champions sponsor PATA in the 113th Congress.  On February 4, PATA (H.R. 460) was re-introduced. To date, 29 Representatives have co-sponsored the bill.  We are working diligently to ensure a companion bill is introduced in the Senate shortly.

While not everyone with lupus experiences the challenges associated with accessing drugs on the specialty tier, many routinely experience paying a co-insurance associated with a medication or infusion, and high costs associated with taking multi-medications.  Lupus activists can help curb the practice of co-insurance and specialty tiers. 

We need your help!  Please take a moment to e-mail your Representative today and ask them to co-sponsor PATA (H.R. 460).  PATA will help reduce the cost-sharing burden on people who rely on highly specialized medications and help them avoid becoming more seriously ill or disabled.

Lupus activists from across the country will be asking Members of Congress to support PATA during the National Lupus Advocacy Summit June 24 and 25 in Washington, DC. By encouraging your Representative to co-sponsor PATA, you are helping build awareness for the issue and supporting lupus activists who will be on Capitol Hill this summer.  Thank you for your activism.

Rep. Jim Moran: An Advocate for People with Lupus on Capitol Hill

Congressman Jim Moran of Virginia has served 12 terms in Congress and has many legislative successes to his credit. He is a senior member of the Appropriations Committee and has been a champion of the environment, women’s issues, and veterans, among other causes. In recent years, he has also been one of the strongest advocates for people with lupus on Capitol Hill.

Last year, the Lupus Foundation of America helped create the first Congressional Lupus Caucus. Rep. Moran serves as one of the caucus co-chairs along with Rep. Tom Rooney of Florida, Rep. William Keating of Massachusetts, and Rep. Ileana Ros-Lehtinen of Florida. The Caucus has been working with the Foundation to ensure that all members of Congress understand the impact of lupus on individuals and their families, and actively support the advancement of lupus research and increased awareness of lupus among the public and health professionals.

“There is little awareness of lupus and its impact on an estimated 1.5 million Americans,” says Rep. Moran. “This disease, disproportionately affecting women, needs greater attention. Our goal will be to increase understanding of this chronic disease and examine ways to support researchers’ efforts to identify, treat and to hopefully one day find a cure.”

Rep. Moran’s connection to lupus is also a personal one: his daughter, Mary, has lupus. Both Rep. Moran and his daughter have been a welcome presence at Foundation events, including walks and the annual gala. Rep. Moran received the Lupus Foundation of America’s Distinguished Leadership Award during the 2010 Advocacy Day Luncheon in recognition of his support for people with lupus, and he has been honored at the Foundation’s 2009 and 2012 galas in Washington, D.C.

“Rep. Moran’s support is crucial as we move forward with our work to educate all Americans about lupus and bring more federal funds to lupus research,” said Kimberly Cantor, Senior Director for Public Policy and Government Affairs at the Lupus Foundation of America. “He has been one of the best friends to people with lupus on Capitol Hill, and we are encouraged by his efforts to spotlight this cruel mystery to the public and other members of Congress.”

Rep. Moran serves as the Ranking Member on the Subcommittee on the Interior and Environment and also serves on the Defense and Legislative Branch Subcommittees. He serves as co-chair of the Congressional Prevention Coalition, the Congressional Crohn’s and Colitis Caucus, the Congressional Animal Protection Caucus and heads the Task Force on Sovereign Wealth Funds, which was established to study issues surrounding sovereign wealth funds and their potential to affect geopolitics and the U.S. and international economies.

In the mid-1990's, he co-founded the New Democratic Coalition, a group of approximately 50 House Democrats committed to fiscal responsibility, free and fair trade, technology, and maintaining America's security and economic competitiveness.

Tell Congress: Cures, Not Cuts!

Funding for lupus research is at risk. Congress is considering significant policy changes as a way to reduce the deficit, and sequestration is looming. Sequestration, the across-the-board budget cuts, would dramatically reduce funding for medical research from federal agencies such as the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Food and Drug Administration (FDA) by 8.2 percent beginning January 3, 2013.

Lupus researchers will lose valuable time in the fight against lupus if Congress allows sequestration to occur. We can’t let lupus research languish. It’s time to tell Congress: WE NEED CURES, NOT CUTS!

Medical research should be a high national priority. The NIH is the largest source of funding for medical research in the world, and the impending cuts would be devastating. Congress must work to ensure that medical research is funded at a level that will bring about progress in better treating and diagnosing diseases like lupus. NIH-funded research is the engine that powers tomorrow’s therapeutic discoveries, and people with lupus deserve a full arsenal of treatments in order to combat the disease.  

Take action today!  Send an e-mail to your Members of Congress telling them “We Need Cures, Not Cuts!”

Help Prevent Cuts to Vital Lupus Research

Threats to cut or eliminate funding to federal agencies that lead and fund vital lupus research are close to becoming a reality. As Congress grapples with how to reduce our nation’s deficit, there is a lot at stake for people with lupus and their families. Sequestration, or the automatic 8.2 percent across-the-board spending cuts to federal programs, will become effective January 2, 2013 unless Congress takes action.

For lupus research to advance, we need your voice! Major cuts to the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and other funding agencies would decimate lupus research.

Take action today! Contact Congress and tell them they must continue funding life saving lupus research. The NIH, the CDC, the FDA among others are critical for advancing lupus research, developing and approving new treatments, and supporting people with lupus and their families.

For example, the NIH estimates that with sequestration, funding for approximately 2300 biomedical research grants-nearly one quarter of new grants-will be lost. Labs will shut down, scientists will be laid off, and local businesses that support research centers will close. These medical centers are located at colleges and universities located in your state and perhaps your city. The result…progress on promising new treatments for diseases such as lupus will grind to a halt.

The 2012 election cycle is in high gear. The good news: both the Republican and Democrat policy platforms demonstrate a support for federal investment in biomedical research. Congress is back in Washington for a few short weeks, and now is the time to take action. E-mail your Members of Congress today and educate them on the importance of funding lupus research otherwise lupus programs will suffer significantly, delaying progress in lupus research and hindering efforts to develop new treatments. Thank you.

Your Voice Is Needed - Future Development of New Lupus Drugs at Risk

As many of you know, Benlysta® is the first treatment developed specifically for lupus since the disease was identified in the mid-1800's. This treatment represents a ray of hope that new safe, effective and tolerable treatments can be developed for the more than five million people around the world living with lupus.

The United Kingdom's (UK) National Institute for Health and Clinical Excellence (NICE) recently released its preliminary recommendation to NOT cover the cost of Benlysta® through the National Health Service.Their preliminary recommendation could have a devastating international impact on the survival of this important new treatment, and it may have a chilling effect on the future development of new lupus drugs thereby denying physicians and patients appropriate treatment options.

Join us in our call to action by urging NICE to recommend that the United Kingdom's National Health Service provide coverage of Benlysta® by October 20.

Take Action: Protect Medicare Part D!

The President signed the Budget Control Act of 2011, into law on August 2, 2011. The bill increased the debt ceiling and established a process to reduce federal budget deficits by $2.1 trillion over 10 years. The bill formed a Joint Select Committee on Deficit Reduction, also known as the “supercommittee”. The supercommittee must draft a plan to cut $1.2 trillion from the Congressional budget and the full Congress must pass the legislation by January 15, 2012. There has been talk of even including Medicare in cuts to reduce the national deficit.

Many people with lupus and other chronic diseases depend on Medicare Part D (the prescription drug program) for access to their life-saving medications and treatments. It is imperative that we spread the word to contact the supercommittee in order to ensure that they do not implement cost cutting measures in Medicare Part D that will negatively affect people with lupus and other beneficiaries.

Medicare Part D has proven to cost far less than projected and the program has been and continues to be extremely successful. Medicare Part D has provided support to millions of beneficiaries by providing them with access to prescription drugs that were previously unaffordable. This, in turn, has improved health outcomes, which ultimately saves money in other parts of Medicare by reducing doctor and hospital visits, preventing acute illness, and avoiding other costly health problems.

Take action with me today and contact your Members of Congress and the supercommittee via our legislative action center and urge them to protect Medicare Part D!

Guest Blog: Healthcare Reform Repeal Vote

By Elesha Gayman Shahinllari, LFA's Senior Director of Government Relations and Public Policy

Last year, Congress passed and the President signed into law the largest healthcare bill since Medicare was passed into law in 1965. This bill did a number of things but most importantly for people with lupus, it addressed three key needs.

First, the bill eliminated pre-existing condition clauses from insurance policies. In other words, insurance companies can no longer exclude coverage to individuals with chronic or “pre-existing” conditions. Insurance companies will also be banned from charging higher premiums based on gender.

The new healthcare law puts in place a way to insure adult children up to age 26 by allowing them to remain on their parents plans. Given the increasingly young age at which lupus patients are diagnosed, this will be helpful to many who will need time to be able to secure their own individual policy as the new insurance exchanges are brought online.

Finally, with the creation of new insurance pools that will become available in 2012, lupus patients will have more choices in not only securing insurance policies but more choices in what their level of coverage looks like.

Congress has scheduled a vote for this week to repeal the healthcare law. While this law is in no way a silver bullet to the healthcare problems many people with lupus or other chronic conditions face on a daily basis, it does go a long way in making care accessible to everyone. We are urging people to contact their Representatives and remind them what significant policies are in place in this legislation for lupus patients, and ask them to preserve these areas of the law as it is brought again before the House.

You can find your elected official here. Remind them that there is more than 1.5 million Americans living with lupus and we need to make sure they are not denied health-care coverage.

Lupus Foundation of America President Presents at Women in Government Summit

(L-R) Libby Derting, Director of Policy and Programs, Women In Government; Sandra C. Raymond, President & CEO, Lupus Foundation of America; and Terri Austin, State Representative, Indiana State Legislature.

Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA) provided an overview on the impact of lupus on women’s health to state legislators during the Women in Government’s (WIG) first-ever Healthcare Summit in Washington, DC November 18, 2010. Ms. Raymond also presented an overview of resources and programs for people with lupus and their families offered by the LFA, and thanked the legislators for recognizing lupus as a significant women’s health issue which should be at the forefront each state’s healthcare agenda.

In addition to Ms. Raymond, the panel included Arthur Weinstein, MD, FACP, MACR, Chief of Rheumatology at the Washington Hospital Center. State representative Terri Austin, Indiana State Legislature, moderated the session entitled, “Lupus and its Impact on Women’s Health.”

Ms. Raymond also discussed several ways state legislators can help constituents by introducing model lupus research and education bills, requesting appropriations to support lupus programs, and sponsoring lupus advocacy days at their state capitols.

The three-day WIG event included panels of nationally known speakers who discussed a range of issues, including women's health, chronic disease, healthcare IT, and healthcare reform.

Lupus Foundation of America Creates 2010 Advocacy Day Video

On March 16, 2010, the need to bridge the gaps in lupus research and understanding was communicated by lupus advocates through close to 2,000 emails and personal visits to Members of Congress and their staff during the Lupus Foundation of America’s (LFA) Twelfth Annual Advocacy Day.

In this video created by the LFA, lupus advocates from around the country describe their experiences at the LFA's 2010 Advocacy Day on Capitol Hill.



If you are unable to watch the video in the blog, you can watch it here.

Guest Blogger Kesha Dan Talks about Her Experience at LFA's 2010 Advocacy Day

I never would have thought that I would feel so blessed in just a few short days. I did not know what to expect when I was invited to attend the LFA’s Advocacy Day 2010. I will honestly say now that it was the best experience I have ever had. I flew in from Denver and was so tired when I got off the plane, but excited to see my fellow lupies & to be in DC.

I went to register for Advocacy Day, and was greeted by two great familiar faces which was a highlight for me. I was immediately relieved when I walked in the lunch that was provided by the LFA. I am a social person who loves to meet others. I met so many others who are able to share so many of the daily struggles that I also deal with, and I know that I will always keep in touch with them. This bonding process was incredible.

The day was great with training for us to be prepared for Capitol Hill and the evening with more guest speakers was even better. My highlight of the night came at around 10:30 p.m. when the alarm at the L’Enfant Plaza Hotel went off and I walked down 15 flights of stairs out in the rain with a sweat suit & dress shoes on. All of us out in the grass with the rain were a sight to see!! I still giggle about this!!!

I will admit that I was very nervous about my meetings on Capitol Hill, and how they were going to go. I can honestly say that it was one of the most exciting experiences I have ever had. We presented each staff representative with an informational folder and a lupus bracelet for them to band together with us. Everyone greeted us with smiles. We informed them about the lupus facts and I told them my personal story, which touched each of them. It was amazing because only I can tell my story and they were willing to listen. This kept me at my comfort level, so explaining why we need their support for more funding for education and awareness programs was a piece of cake. We need it, so asking for it is the easy part. Even if it takes a few more years for us to reach our goals ... just to know that I had a hand in asking & sharing my personal story meant more to me than anything. I look forward to attending next year.

I am now taking the time out to thank each & every staff member at the Lupus Foundation of America for being the strength for those of us with lupus. The LFA puts together some amazing events to help with our continued fight. My heart is content knowing that we are supported.

Kesha Dan
A fighter with lupus “Smiling Everyday”

Photo: Kesha Dan, lupus advocate from Denver, Colorado, on Capitol Hill for the LFA's 2010 Advocacy Day

Reminder: Support the Online Portion of LFA's Advocacy Day thru Friday, March 19

The LFA needs you to make your voice heard!

Through Friday, March 19, we're asking everyone to go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action."

Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.

Please ask your family, friends and co-workers to take just a few moments to also email / speak to their Members of Congress, and tell them why additional funding for lupus research is so important.

Together, we can change the future of those affected by lupus.

Band Together for Lupus on Tuesday, March 16 -- Make Your Voice Heard on Capitol Hill

Tomorrow, March 16 is the LFA’s 12th Annual Advocacy Day on Capitol Hill.

Hundreds of lupus advocates from around the country have come together to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Make Your Voice Heard

Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action." Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.

Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important.

The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.

Together, we can change the future of those affected by lupus. Thank you and we look forward to an amazing day on Capitol Hill on Tuesday, March 16.

Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home

As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Here’s what you can do from home.

• Send an email, call, or write your Congressman or Senator.
• Raise awareness by sending an ecard.
• Spread the word on Facebook and Twitter, or through your blog.

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page.

Remember, we really need you to make your voices heard on Tuesday the 16th.

Discounted Room Rate for LFA's 2010 Advocacy Day Only Guaranteed Thru Friday, February 19

Reminder: LFA's 2010 Advocacy Day on Capitol Hill will take place March 15-16, 2010. Spaces are filling up, so make sure you register for this event soon.

Deadline Approaching for Discounted Hotel Reservations

Here's an incentive to get you to register today -- the discounted room rate for Advocacy Day is only guaranteed through Friday, February 19. You'll need to hurry as it's your last chance to get a hotel room at a cheaper price!

Book your hotel room by Friday, February 19, and save money!

Lupus Foundation of America Collaborates with Federal Agencies and the U.S. Surgeon General's Office to Expand Medical Education on Lupus

Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities. The meeting, held at the American College of Rheumatology offices in Atlanta, Georgia from January 12–14, 2010, was facilitated by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), and Office of Minority Health (OMH).

According to an LFA survey, a person waits on average three years and visits four doctors before receiving an accurate diagnosis of lupus. More than 90 percent of people with lupus are women, and it is two to three times more common among African Americans, Hispanics, Asian Americans, and Native Americans. Physician and health care provider education is critical to improving the early diagnosis and management of lupus, and ultimately preventing the life-threatening consequences of the disease, particularly among those most at-risk for the disease.

An estimated $1.6 million is available for the initiative entitled, "Eliminating Disparities in Lupus Through Education and Training for Health Professionals" (EDLET/HP), which ultimately seeks to expand and promote the utilization of more comprehensive lupus curricula in medical and nursing schools, and among health care professionals and professional associations.

It is estimated that 80 percent of Americans know little or nothing about lupus. For far too long there have been limited resources to address the patient, public, and professional education gaps in lupus. In part, the first-ever Ad Council public awareness campaign on lupus sponsored by the OWH launched last year began to address the long-standing need to raise awareness and close the gap. The LFA is the Founding Partner on the campaign, "Could I Have Lupus?" which is directed at those most at-risk for developing the disease, and urges individuals who may be experiencing symptoms to ask their doctor about lupus. The EDLET/HP initiative is the health care professional counterpart to the Ad Council campaign.

"The LFA commends the Office of Minority Health and Office on Women’s Health for the foresight in developing these initiatives," said Sandra C. Raymond, LFA President and CEO. "We also want to thank lupus advocates across the United States for bringing to Congressional attention the urgent need for comprehensive patient, public, and professional education programs on lupus."

This year, the LFA will be hosting its seventh annual Advocacy Day program in Washington, DC from March 15-16, 2010. It is an opportunity for individuals to educate Members of Congress about lupus, and encourage them to support more funding for lupus research and education programs. To learn more Advocacy Day or to register, visit www.lupus.org/advocacyday.

Registration for LFA's 2010 Advocacy Day on Capitol Hill Now Open

Want to help generate more funds for lupus research and awareness?

The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.

Join lupus advocates in Washington, DC, Monday and Tuesday, March 15-16, 2010, as we introduce the Lupus Foundation of America's advocacy priorities for FY2011.

Register for the LFA's 2010 Advocacy Day today.

LFA Advocates Successfully Increase Lupus CDC Funding

Your Voices Were Heard!

Thanks to you, Congress has heard how important lupus funding is to their constituents! On Sunday, December 13, 2009, Congress passed the Omnibus Appropriations bill for Fiscal Year 2010. In this bill there is:

• $4,505,000 for the National Lupus Patient Registry (NLPR) at the Centers for Disease Control and Prevention (CDC). This is an increase of $505,000 over FY09 Appropriations.
  
• $1 million to continue the national lupus health education program for physicians and healthcare providers within the Office of Minority Health.

The National Lupus Patient Registry is the most comprehensive epidemiological study on lupus to date which will determine the true national incidence and prevalence of lupus among all populations, as well as uncovering the burden of the disease on individuals, families and society. To date, the NLPR program has received $12.1 million which has been used to create four study sites in California, Georgia, Michigan, New York, and the Indian Health Service.

This bill will now be sent to the President for his signature. On behalf of the Lupus Foundation of America and people with lupus, thank you for making your voices heard!

If you are interested in making your voice heard in person for Fiscal Year 2011 lupus priorities, please join with us on Capitol Hill March 15-16, 2010 for the Lupus Foundation of America’s Advocacy Day! The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with the offices of their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that have an impact on people with lupus. Registration will open in January 2010.

Come to the Lupus Foundation of America’s 2010 Advocacy Day March 15-16!

Join with the Lupus Foundation of America (LFA), people with lupus and their friends and family for the LFA’s 2010 Advocacy Day. The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that impact people with lupus.

The LFA’s 2010 Advocacy Day Program will begin on March 15th with a training session and dinner at the L'Enfant Plaza Hotel to meet other people who have been touched by lupus and discuss the LFA’s Advocacy Message.

On March 16th, we will travel to Capitol Hill to meet with Members of Congress and inform them about our legislative priorities and share our personal stories about lupus.

Registration opens January 2010.

Until then, learn more about the LFA's advocacy efforts.