UCB and Immunomedics announce positive results for epratuzumab phase IIb study in systemic lupus erythematosus (SLE)

UCB and Immunomedics announced on Friday top-line results from a Phase IIb clinical study which compared the effect of the drug candidate epratuzumab to placebo in people with systemic lupus. The data showed that the 12-week dose response and the dose frequency study of epratuzumab in patients with moderate to severe active lupus demonstrated a clinically meaningful treatment effect showing the drug was more effective than placebo in reducing symptoms of lupus.

“The LFA congratulates UCB and Immunomedics on the positive results from this clinical study of epratuzumab,” said Sandra C. Raymond, President & CEO of the Lupus Foundation of America. “We eagerly await the release of additional data from this mid-stage clinical study.”

“It has been 50 years since the U.S. Food and Drug Administration approved a new treatment for lupus,” said Raymond. “We are excited to see several promising new lupus therapies in the pipeline and we are encouraged that physicians may soon have new treatment options to manage this devastating and life-threatening disease.”

Read the full UCB Press Release.

Schwan's: What's In Store Is Hope!

Schwan’s Home Service and the Lupus Foundation of America (LFA) have teamed together to fund lupus research. When you place a food order at schwans.com or by calling 1-888-SCHWANS and enter or state promotion code "LF" at check out, Schwan’s Home Service will donate 10% of the funds from your order back to the LFA. Schwan’s Home Service brings more than 350 delicious frozen foods right to your door, all with a 100% quality guarantee.

Hurry, offer expires 9/19/2009!

Fill your freezer and fund a cure!

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 4

Hello. It is a pleasure to be blogging with you once again. I hope everyone enjoyed Tuesday's episode. I am glad that more of my personality came across in this episode. I am not as quiet as what has been shown to date.

I was shocked that we lost the challenge. I mean, how do you lose to the blue team when their ingredients include figs, apples, angel hair pasta, tomatoes, and haddock? All I can say is that Gordon must have had pity on them or something. This was by far the worst punishment we had to deal with. It was the one time that I flipped out. They woke us up three separate times to receive deliveries. On the third one I had enough. I was just a few days removed from the hospital and starting to get some energy back and my voice had returned and then we need to do this. Not happy!

We got two hours of sleep maybe. I could feel my body starting to regress back to exhaustion and I was starting to really ache. My lungs were paying the price for having to carrying all that stuff into the restaurant. I was carrying as much as I could load up just to get it over with as fast as possible. I paid the price for it both physically and mentally.

I guess losing the challenge helped us out in the long run. The guys were even more run down than we were. Las Vegas can do that to you. I remember thinking that I wish we had won and gone to Vegas. Then I saw the guys walk in and knew that they were worse off than we were. I think we really performed as a cohesive team that night. We looked out for each other and put out a great service. I also have worked as a fish monger, worked on the coast of France at a seafood restaurant and grew up in the Northwest and know how to cook fish. I could totally feel for Van on this night. The prep guys left a very thin piece of plastic that was undetectable unless you were the one that prepped it. It got me once and poor Van twice.

In the end we rocked the service and finally got to see what it was like to sit back and watch the guys put up two of their own. It was a tough night because I like both Robert and Andy. I think Chef Ramsay made the right choice though. It was Robert’s time to go. I hope you all tune in next week. It should be exciting. Keep watching and I will keep fighting.

Amanda

Check Out the Walk for Lupus Now Events Coming Up Thru Mid-September 2009

The fall Walk for Lupus Now season has begun, with monies raised from these events going to support lupus research, lupus education programs, and patient and family support services.

Here is a listing of Walks through mid-September 2009. They are alphabetical by state.

• Anchorage, Alaska -- September 19, 2009
  
• Los Angeles, California -- September 12, 2009
  
• New Haven, Connecticut -- September 13, 2009
  
• Chicago, Illinois -- September 19, 2009
  
• Northwest Indiana, Indiana -- September 12, 2009
  
• Louisville, Kentucky -- September 19, 2009
  
• Southeast Michigan -- September 12, 2009
  
• Ocean City, New Jersey -- September 13, 2009
  
• Fayetteville, North Carolina -- September 19, 2009
  
• Piqua, Ohio -- September 12, 2009
  
• Portland, Oregon -- September 19, 2009
  
• Pittsburgh, Pennsylvania -- September 13, 2009
  
• Nashville, Tennessee -- September 12, 2009
  
• Longview, Texas -- September 19, 2009
  
• Lubbock, Texas -- September 5, 2009

If you live in these areas, I certainly hope you will join us. Or if you have friends or family in any of these areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk.

Have you ever volunteered for a clinical study to obtain health care?

The Lupus Foundation of America is assisting a mid-Atlantic area health reporter who is working on a story about people with lupus who may have volunteered to participate in a clinical study as a means to obtain health care that they otherwise may not have been able to secure. If you or someone you know fits this profile, and are interested in participating in a telephone interview for a radio program, please contact Duane Peters via email at peters@lupus.org.

Ideally, the reporter would like to interview someone from the mid-Atlantic region (PA, NJ, DE, MD); however anyone who fits the profile is encouraged to reply, if interested. The reporter wishes to complete the interview by no later than this Friday, August 28.

When responding, please include information about yourself, including your name, age, city and state, email address, daytime telephone number, and information about the clinical study in which you participated. This information will be shared with the reporter who will select one or more individuals to interview.

Heading to College While Living with Lupus

At the end of summer, Sherri Long will head back to college.

Long, 21, will be entering her senior year at Temple University in Philadelphia. The Colorado native, a human biology major participating in the university's Honors Med Scholar (combined B.A./M.D.) program, will pack her books and her clothes, say goodbye to her family and friends, and return to campus, studies, and activities -- just like millions of students across the country.

But, unlike most of her peers, she faces challenges on campus beyond mastering academics and juggling an active social schedule. Long, who was diagnosed with systemic lupus when she was 12, must also make sure a support system is in place to help her deal with her illness -- no easy feat for an active young person 2,000 miles away from home.

Read more >>

* Taken from the Lupus Now archives

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 3

Hello all! I hope you all had a chance to watch this week’s episode of Hell's Kitchen. It was one of my favorites to-date. I think it shows that when the teams are equal that the sides are pretty evenly matched.

The fact that we knocked the low calorie meal out of the park was a highlight of the series for me. Especially being someone who tries to eat healthy and keep the diet balanced to help my battle with lupus.

There was no way I was gonna miss out on a day at the beach, with sun, sand, fun, and drinks with umbrellas! Anyone that knows me is aware that my dream is to have little fish shack on an island.

I will say that I don't think it would be possible to work the hours that are required in the kitchen if I didn't develop a workout routine and stick to it. I make sure that I carve out time in my day to go for a run or head to the gym. I feel that the combination of a balanced healthy diet and exercise is what gives me a fighting chance against this disease.

Back to the show. It is pretty apparent when this episode was taped that I was still battling the lupus flare. I was on a steroid pack and my voice hadn't come back just yet. Add to the fact that Chef Gordon called me back from the lineup and started asking about my health. I am a little hard headed and was not going to leave because of lupus. I wish they would have shown more of that.

Luckily, I was starting to get some energy back which was huge considering we went straight from the beach and into service. I felt this was one of my better services. It is a good thing if Chef Gordon is not yelling your name. I kept my station moving right along with no issues and was able to jump over and help the team when Tennille had her moment with Gordon.

It has been fun blogging with you. I can't wait for the next episode.

Keep watching and I will keep fighting!

Amanda

The Value of Vaccines

Lately we’ve been hearing a lot of questions from parents about the safety of vaccinations for their children with lupus. That started us thinking about the safety of vaccinations for adults with the disease, too. So we went where everyone goes for questions like these: to the Centers for Disease Control and Prevention (CDC).

The “why” of getting vaccinated is easy: Immunization reduces the risk of infection and the chance of catching certain diseases -- and that’s of the utmost importance for anyone with lupus, of any age, since many of you take medications that suppress your natural immune system function, and because lupus makes you more susceptible to any bug that’s going around.

The question of which vaccines are safe for people with lupus is a little more complicated. Vaccines are produced using an infectious or viral agent. Usually vaccines use a “killed” form, but some use a “live” or an “attenuated” (weakened) form. So, always talk with your doctors before receiving any vaccine. In January 2009, the CDC put out revised immunization guidelines that include several clarifications and additions (PDF). Although specifics are not given for children or adults with lupus, the guidelines address vaccinations for anyone with a compromised immune system -- people with lupus included.

Another common question is which vaccines are considered safe for family members of people with lupus. Probably the simplest rule is to avoid close contact with anyone who receives a vaccine that uses a live or attenuated agent.

This chart is extremely abbreviated -- please go to the CDC website for complete recommendations, indications, and supplemental notes. And remember: Your rheumatologist or doctor experienced in lupus has the last word!

Fall 2009 Issue of Lupus Now Magazine ... Coming in September to A Mailbox Near You!

Have you been seeing the bus stop posters and TV ads? What about those public service announcements on the radio? It’s all part of the national “Could I Have Lupus?” campaign, and we have the Ad Council and the federal Office on Women’s Health to thank. The cover story of the new Fall issue of Lupus Now magazine gives you an in-depth look at one of the courageous Ad Council campaign participants, Wendy Rodgers. The positive and fulfilling ways she is dealing with lupus may inspire you to get involved in our mission.

We don’t have to tell you about the importance of perseverance -- people with lupus are the most resourceful folks we’ve ever met. That’s because life with lupus is full of challenges. We have some people (and organizations) to tell you about who can really help you on your way.

Are you a person who believes that understanding the parts is key to understanding the whole? Then you will pleased to learn that the holistic approach to health care is moving into medical school curricula. In this issue you can read about that, and about the benefits of integrative medicine to people with lupus.

Next question: How much power over pain do you believe you have? Meditation, guided imagery, and especially exercise -- yes, it’s true -- these are just some of the ways one lady with lupus is managing her chronic pain. Find out more in the Wellness article about drug-free pain relief.

Our second Wellness piece is about ways to improve your doctor’s office visit. Whether you’re seeing a new doctor or a familiar one, these suggestions -- including the perspectives of a teenager and her pediatric rheumatologist -- will help you and your doctor make the most of the time you have together.

As always, you can check out the online version of Lupus Now magazine.

Better yet ... why not get a subscription to this award-winning magazine? To do so, simply follow this link.

Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

On Thursday, August 6, 2009 Sen. John D. Rockefeller IV (D-WV) introduced S.1630, “The Affordable Access to Prescription Medications Act of 2009.” The Lupus Foundation of America applauds and supports Senator Rockefeller for creating this important legislation which will provide Americans with chronic diseases vastly improved access to life-saving medications.

“The Affordable Access to Prescription Medications Act of 2009” will protect people with lupus and other chronic diseases from high out-of-pocket expenses for their prescription drugs.

There are several potential new treatments in the near-term pipeline that may provide a better quality of life for people with lupus. But these anticipated new treatments will mean nothing if people with lupus are not able to access them because they are cost-prohibitive. For example, some people with multiple sclerosis, another autoimmune disorder, may pay out-of-pocket in excess of $800 a month for access to new medications.

For people with serious or life-threatening conditions such as lupus, S.1630 will provide greater access and affordability for necessary prescription treatments. The LFA encourages you to join us in supporting this vital legislation by visiting our legislative action center and urging your Senators to cosponsor S.1630.

Act Now!

Go to http://capwiz.com/lfa/home/, click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please ask your family, friends and coworkers to call on your behalf as well.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 2

Hello once again. It is awesome to be blogging with you. What can I say about this week's episode? I must admit that I was in the midst of a pretty bad lupus flare during this part of the show and my recollection was not the best. I can say that I had been in the hospital and once I got back later that day, I was determined to fight like hell to stay. Most of that was not aired but you can see I am not feeling well if you look closely at me.

I was really struggling to keep my station on point and don't remember how I was able to do it. I had a great service and you never hear my name called. Not easy when you are in the throws of an episode. We finally eliminated Lovely. She was in over her head. To nobody's surprise ... Suzanne keeps yapping.

I’ve shared another one of my favorite recipes for you below. Thanks for watching, and I will continue to keep fighting.

Amanda

Amanda's Recipe: Roasted Chicken and Arugula salad with roasted pears, grapes, and goat cheese with balsamic vinaigrette

2 chicken breasts. Dust with salt and pepper, cook at 400 degrees F for 20-25 min, depending on thickness of breast; let rest.

Peel 2 pears of your choice, slice, and place on sheet and place in 350 degree F oven for about 12-15 min, until nice and soft, and a little caramelized.

Toppings for salad:

• sliced red grapes
• sliced tomatoes
• 1 tablespoon of goat cheese

Mix all in ingredients together and place in salad bowl. Serve with balsamic vinaigrette

For vinaigrette:

• 1/2 cup balsamic vinegar
• 1 cup of olive oil
• dash of honey
• salt and pepper

Blend all ingredients in blender, except oil. Slowly drizzle oil in until combined.

Lupus Foundation of America Applauds New Legislation that Caps Out-of-Pocket Drug Costs

Provides Protection for People with Lupus and other Chronic Diseases

The Lupus Foundation of America (LFA) President and Chief Executive Officer, Sandra C. Raymond, issued the following statement regarding S.1630 "The Affordable Access to Prescription Medications Act of 2009" introduced on Thursday, August 6, 2009 by Senator John (Jay) D. Rockefeller IV (D-WV).

"We support and applaud Senator Rockefeller for this important bill which will provide all Americans with vastly improved access to life-saving medications. The proposed legislation imposes a $200 cap on the amount a person could be charged for any one prescription, and a $500 cap on the total amount an individual could be charged for all medications during any given month. This is critical to controlling costs for people with lupus, as a past survey has shown that more than 60 percent of patients take five or more medications.

"It has been 50 years since the U.S. Food and Drug Administration approved a medication for lupus. There are several potential new treatments in the near-term pipeline that may provide a better quality of life for people with lupus. But these anticipated new treatments will mean nothing if people with lupus are not able to access them because they are cost-prohibitive. For example, some people with multiple sclerosis, another autoimmune disorder, may pay out-of-pocket in excess of $800 a month for access to new medications.

"Studies have also shown that patients will avoid filling prescriptions, skip doses, or cut pills in half because of costs. Stopping medication can lead to greater disease severity, and for people with lupus, could result in organ failure. In addition, for people with chronic conditions it can often result in hospitalization leading to greater overall health care costs for both patients and society. For patients with serious or life-threatening conditions or for an individual with multiple co-morbid conditions, this legislation will provide greater access and affordability for prescribed treatments.

"We encourage everyone to join us in supporting this important piece of legislation by contacting their Senators and asking them to sign on as a co-sponsor to the legislation. At the Lupus Foundation of America we will do our part to ensure support for this important legislation and watch with great interest as it moves through the United States Congress."

Read the Official Press Release from the Office of Senator John D. Rockefeller.

H1N1 (Swine) Flu Advisory for People with Lupus

This notice will be updated as additional details are received from the Centers for Disease Control and Prevention, and as determined by the Lupus Foundation of America’s Medical-Scientific Advisory Council. Please check this notice periodically until this health issue has passed.

The Lupus Foundation of America (LFA) is aware of the concern that people with lupus may have about the recent outbreak of the H1N1 (Swine) Flu. Please know the LFA is monitoring the situation and consulting with our National Medical-Scientific Advisory Council on the possible impact of this virus on people with lupus.

Currently, clinical trials for a potential H1N1 vaccine are set to start around August 10th. If early evidence suggests the vaccine is safe, similar trials would be started in children. Results are expected in early September. The clinical trials are using an inactive vaccine which should be safe for people with autoimmune diseases. Clinical trials will be done over weeks instead of months or longer, with the goal of assessing the vaccine’s safety in time to approve release of the H1N1 vaccine in the fall, before the virus is likely to spread widely in the general population.

At this time, the precautionary recommendations for people with lupus are no different than for the general public. However, it is important to note that people with lupus are typically at increased risk for infections, particularly if they are taking medicines that suppress the immune system. Therefore, it is important to be vigilant about following the general precautions.

* Please remember that you should never discontinue medications used to treat your lupus without first consulting with your doctor.*

Below are simple steps people with lupus and their family members can take to lessen the likelihood of contracting Swine Flu.

• Avoid individuals and family members who are ill and have symptoms such as a fever (over 100º F), nausea, vomiting, or diarrhea. Specifically, you should limit or avoid face-to-face and personal contact (i.e. hugging, shaking hands, etc.).
  
• Wash your hands frequently. Public surfaces, including public bathrooms, store countertops, and restaurants can retain the H1N1 virus. Use soapy water for at least 15 seconds, or an alcohol based wipe when out in public.
  
• Avoid touching your eyes, nose, or mouth. Germs spread this way.
  
• Use the crook of your arm to shield coughs and sneezing. Do not use your hands or handkerchiefs as they carry moisture that spread viruses.
  
• Stay home from work or school if you are sick.

While the symptoms of Swine Flu may vary from person to person, according to the World Health Organization, common symptoms include: high fever, cough, and sore throat, symptoms similar to typical influenza, with some patients experiencing diarrhea and vomiting. The cases can rapidly progress to severe and unusual pneumonia.

People with lupus who have a confirmed diagnosis of the Swine Flu can receive treatment with appropriate anti-virals, such as Tamiflu or Relenza. To date, there have not been any major drug interactions between typical lupus medications and to anti-virals effective in treating the Swine Flu.

To receive the latest information and guidelines on Swine Flu, go to http://www.cdc.gov/swineflu/.

Check Out the Walk for Lupus Now Events This Month

As you know, Walk for Lupus Now season is underway, and monies raised from these events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place during the month of August.

• Eureka, Illinois -- August 8, 2009
• Wichita, Kansas -- August 29, 2009
• Lexington, Kentucky -- August 29, 2009
• San Francisco, California -- August 30, 2009

If you live in any of these areas, I certainly hope you will join us. Or if you have friends or family in these areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Until next time.

House and Senate Propose Increases for Lupus in FY 2010

On Wednesday, July 22, 2009, the House of Representatives passed the Departments of Labor, Health and Human Services, and Education Appropriations bill for Fiscal Year 2010. The Lupus Foundation of America thanks House of Representative members for including in the bill:

• Language urging the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to increase lupus research.


• $1 million to continue the national lupus health education program for physicians and healthcare providers within the Office of Minority Health.


• $4,009,000 for the National Lupus Patient Registry (NLPR) at the Centers for Disease Control and Prevention (CDC).

On Tuesday, July 28, 2009, the Senate Labor HHS Appropriations Subcommittee included $5 million for the NLPR program at the CDC for Fiscal Year 2010 in the Senate’s version of the spending legislation, which funds health-related agencies that are important to lupus research such as the NIH, CDC, and the FDA. The Lupus Foundation of America is hopeful that the full Senate Appropriations Committee will concur with the Labor HHS Subcommittee and also pass the $5 million for the NLPR when it is expected to consider the bill on Thursday, July 30, 2009. The bills will then be voted on by the full Senate and negotiated in conference with the House later this fall. LFA will continue its work to ensure that these provisions are included in the final legislation.

The National Lupus Patient Registry is integral to an epidemiological study to determine the true national incidence and prevalence of lupus among all populations and for determining 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.