LFA Encourages $7.6 Million in Funding for Lupus Research and Education Programs

The U.S. Senate Labor-Health and Human Services Appropriations subcommittee has released encouraging news for people who are affected by the cruel mystery of lupus. The committee, which is chaired by longtime lupus research and advocacy

Photo Courtesy: www.aoc.gov

Photo Courtesy: http://www.aoc.gov

supporter, Senator Tom Harkin (D-IA), released the details of its 2015 spending bill.

 The specifics of the bill include:

  •  $5.6 million for the National Lupus Patient Registry Program at Centers for Disease Control and Prevention (CDC).
  • $2 million for the lupus initiative at the Office of Minority Health
  • $30.46 billion for the National Institutes of Health (NIH). This is a $605.7 million increase from the previous amount allocated to the National Institute of Health!

CruelMysteryThe Lupus Foundation of America’s advocacy efforts are a part of  its strategy to elevate funding amounts for research and education involving lupus. The United States Federal Government is an integral part in helping the foundation raise funds to provide services to people who are fighting the cruel mystery of lupus. Without advocates like Senator Tom Harkin, LFA would not be able to make lupus widely known to the public. Funding for Lupus Foundation of America programs would not be possible.

The appropriations process for the 2015 fiscal year begins on the first day of October later this year, but It is currently stalled most likely due to the pending outcome of the November mid-term elections. The Lupus Foundation of America is committed to ensuring funds for lupus are possible. LFA is vigilant in efforts to make sure these funds are received. It is important to the Lupus Foundation of America that lupus is well represented in the United States Congress so the foundation can further work to make lupus recognizable and frequently noticed in the public.

When Congress resumes their session this fall after they return from summer recess, check back to see how you can help with the Lupus Foundation of America’s efforts. Get engaged in the fight to ensure lupus receives a fair amount of attention, funding and support from the federal government.

About Lupus Advocate Senator Tom Harkin

 

Senator Tom Harkin was born in Cummings, Iowa on November 19, 1939. He still resides in the small Iowa town of only 373 residents. He lives in Cummings with his wife Ruth. They have two daughters named Amy and Jenny, as well as three grandchildren.

Senator Harkin was just given a special tribute by the Lupus Foundation of America on May 20, 2014, in Washington, D.C. The tribute benefited LFA and highlighted the extraordinary leadership and contributions that Senator Harkin has made in the advancement of science and medicine in support of the National Institute of Health (NIH) and Centers for Disease Control and Prevention (CDC). He also does work for other key federal government agencies that are an integral part in the fight to support medical research for chronic diseases.

 Harkin’s Notable Legislature Achievements:
  • Senator Harkin helped change the landscape of America through the Americans with Disabilities Act (ADA). This act instituted the requirement of buildings and transportation systems to be wheelchair accessible. It also required workplaces to provide accommodations for people with disabilities.
  • Senator Harkin also helped with getting funding for the National Lupus Patient Registry under direction of the Centers for Disease Control and Prevention. This study has received an estimated $32 million in funding and will reveal the burden of the disease on individuals and families affected by it. It also will provide a more accurate estimate of how many  people are living with lupus in the United States.

My Unconventional Experience with Lupus

I began working as an intern at the Lupus Foundation of America, Connecticut Chapter this past May, and came into the office knowing little to nothing about lupus. Sure, I wasn’t walking into my new summer job blind, I had the basic facts, medications used, and the standard definition of what lupus is inside of my head. What I didn’t know about lupus or have the experience with was watching a loved one deal with the cruel disease.

Now what I’m about to write in the following paragraphs might make me seem like a crazy, animal-loving lunatic, and you may not believe that an animal’s pain is as bad as a human’s pain. What I do believe though is that anyone who grew up with a family pet, is an animal lover, or even recently adopted a dog, will understand where I am coming from. I truly believe that a dog can be a man (or woman’s!) best friend.

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Bruin pictured at his home in Connecticut

Four years ago my family rescued a 6-month-old black lab from The Animal Haven in North Haven, CT. We had no background on his medical history since he was a rescue. All we knew is that he was brought up to Connecticut from Georgia with his brothers and sisters. After we finally got to take him home, we named him Bruin for my family’s love for Boston sports.

Earlier this year, I came home from college for Spring Break and learned that my parents thought Bruin had fallen down the stairs when they weren’t home and strained his paw. He was taking dog ibuprofen and was expected to be better in a few weeks.

Later that year as my spring semester was wrapping up, my mother informed me that Bruin was not getting better, and that she was making an appointment with the vet to get to the bottom of this ongoing problem. I was enlisted to bring him (going to the vet is a struggle for Bruin—he suffers from anxiety). The vet ran some tests and came to the conclusion that it was lyme disease. Although Bruin tested negative for lyme, the vet still thought it was the root of his recent problems.

Throughout the next couple of weeks we began to see Bruin going continually downhill. He was not the playful, happy, and rambunctious dog that we were used too. He no longer would sleep in my parent’s room as he does every night, he would not walk up the stairs or jump into the car excitedly for a ride. It also had felt like an eternity since I had heard him howl and run around the house when a member of my family walked through the front door.

bruin3

Bruin on the day he was brought to the animal hospital when he could not walk

Finally, enough was enough and my family wanted answers. As I was about to take him to the vet for yet another appointment, I called for him and he wouldn’t come to the front door. When I went to find him, I found him struggling to even walk. The vet told me to bring him straight to the Animal hospital, where he had to be wheeled in on a stretcher.

A series of tests were done including: a tick panel of blood work that had to be sent out to a lab in North Carolina, X-rays, and a Joint tap that he had to be put under anesthesia for. After about six months of watching our beloved Bruin suffer, we finally found out that he had something worse than lyme disease. He had an autoimmune disease and it just happened to be lupus.

I found this extremely ironic since I was doing an internship at the Lupus Foundation and immediately began searching “lupus in dogs” on Google. What I found was interesting.

The cause of lupus in dogs was unknown, but genetics is thought to be a cause of the issue. Other reasons why dogs might get lupus are because of an adverse reaction to a medication, a viral infection, and or exposure to UV rays. There is no known way to prevent lupus in dogs, and if it is known that a dog has lupus, they are usually not bred due to how genetics plays a role with the disease. There are also different types of lupus in dogs, and as I know from my experience with Bruin, it is hard to diagnose in canines due to the tests they have to perform. I also discovered the side effects of lupus in humans almost mirror side effects of lupus in dogs. For example, dogs experience flares of lupus just like humans do. They also have achy joints, skin and mouth lesions, and sometimes an unexplained fever.

Bruin is now taking Prednisone daily, which has given him a bevy of side effects such as increased thirst and hunger. Sometimes he drinks almost three gallons of water a day, and even has had such an increase in appetite that we found him eating a tissue box last week. Although he is having these side effects, we are finally seeing our Bruin’s normal behavior. He is doing well for the situation he is in and we look forward to him living a lupus-controlled life.

I’m not ashamed to say I love my dog. Watching him suffer made me nervous, sad and scared as to what the future would bring. Overall, my experience with Bruin opened my eyes to the disease. I now see how the disease can affect someone and have learned that it truly is a cruel mystery that I would never wish upon anyone. If lupus affects an animal in this way, I can’t even imagine the pain that it causes a human being. Dealing with my unusual situation has shown me how much this disease can hurt the person suffering from it, but also how it kills caregivers everywhere to watch someone they love suffer.

Famous Animal Fact!

Bruin isn’t the only dog that has ever had lupus! A former first dog of the United States was diagnosed with the disease. This dog was Millie and she was George and Barbara Bush’s Springer Cocker Spaniel!

Millie with her presidential parents! Photo Courtesy: www.vh1.com

Millie with her presidential parents! Photo Courtesy: http://www.vh1.com

**Some breeds of animals are more susceptible to lupus. These breeds are: German Shepards, Shetland Sheepdogs, Collies, Old English Sheepdogs, Afghan Hounds, Beagles, Irish Setters and Poodles.

LFA Studies Provide Insight on Lupus Care and Management

A survey done by the Lupus Foundation of America has shown that about 1.5 million people are living with lupus in the United States. Lupus is a chronic and potentially fatal disease that causes the immune system to become unbalanced. Lupus can cause damage to any organ system including the heart, lungs, brain, kidneys, and skin.

After reading the above paragraph you might be asking yourself why I am telling you something that you may or may not already know. Well, recently a new analysis of data done by the Lupus Foundation of America collected information from previous trials and worked to find areas where the trials could be improved. Results of another study show a new instrument that is under development by the Foundation, can help assist clinicians to evaluate changes of lupus activity in different organ systems. The data was presented at the 2014 European League Against Rheumatism Congress, which was held from June 11-14 last month. This large and widely attended medical conference is held in Paris, France and focuses on Rheumatology.

These studies are part of two initiatives funded by the Lupus Foundation of America National Research Program: Bringing Down the Barriers. This program strives to develop and improve the quality of life for those living with lupus. It does this through development of safe and tolerable therapies as well as giving more tools to physicians to help when they treat patients to care and maintain healthy lifestyles with their disease.

Standard of Care in Clinical Trials Program gives insight for future lupus trial designs

For the first study the Lupus Foundation of America presented extra analysis from the Standard of Care in Clinical Investigational Trials (SOCCIT) Program. This program was started for Lupus Foundation of America collective data analysis Initiative. It is a new kind of research study that was created to make clinical trials better so new lupus treatments can be easily developed.

The Lupus Foundation of America presented an ongoing study to show how the use of background medications while a patient is participating in a lupus clinical trial can affect the outcome of possible new lupus treatments.

Previous analysis of a study revealed that the background drug myocphenolate mofetil (MMF) might have been the culprit of masking efficiency of the investigational medicine that was being studied during the clinical trial. At EULAR 2014, the latest analysis presented examined the flare rates among people who were on the following background medications: mofetil (MMF), Azathioprine (AZA), Methotrexate (MTX), and high dose cyclophosphamide (IVCY).

Data from two groups of 933 patients who participated in six different clinical trials were analyzed. The results were divided between two groups of patients. These two groups were patients who had lupus related kidney disease (lupus nephritis) and those without nephritis. The analysis studied flare and response rates of both groups.

People who had higher activity scores when they entered the trial were more likely to experience flares during the trial, possibly because they were sicker at the beginning of the study. The potential for patients to experience more of these flares may confound study results and makes more of a difference to prove potential new treatments. These results from the SOCCIT program analysis are going to provide insights for future trial designs by identifying from the start the patient-specific factors that could be able to predict a high response from those who receiving a “standard of care.”

“Using combined data gathered from multiple trials allows us to learn something quite different than what we get from each individual trial,” said Dr. Joan Merrill, Head of the Clinical Pharmacology Research Program at the Oklahoma Medical Research Foundation, and Medical Director for the Lupus Foundation of America.  “We are gaining insight into what happens when these standard-of-care therapies are used to treat patients and this is valuable for designing more effective trials and also increases our understanding of their relative effects in clinical practice.”

“Developing new therapies for lupus is incredibly complex, and researchers face a number of obstacles that can hinder their ability to demonstrate whether a potential new treatment is effective,” said Sandra C. Raymond, President & CEO of the Lupus Foundation of America.  “The goal of the LFA-CDAI is to improve the design of future lupus clinical trials and is an important part of the Foundation’s urgent mission to improve the quality of life for people with lupus by supporting development of safe and more tolerable treatments.”

What’s next for the SOCCIT program? They will be analyzing how different definitions of response affect the ranking of background medications with respect to response rates.

LFA rapid evaluation of activity in lupus system allows for greater range in measuring disease

The second study was made up of 91 patients and showed the Lupus Foundation of America Rapid Evaluation of Activity in Lupus system was easy to use. The study was conducted at two different clinics and was compared with results from the British Isles Lupus Assessment Group index (BILAG) and the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI).

Patients were assessed on all three levels of the index and results showed that they were similar to results given by BILAG and SLEDAI. Researchers concluded that the LFA rapid evaluation of activity in lupus system can help better treatments and improve justifications for medications that have to be given to doctors so insurance companies can give reimbursements to people for their medications.

For more information on Lupus Foundation of America research, follow this provided link: lupus.org/research.

Support Pediatric Lupus Now!

Thousands of young children and teens are living with lupus in the United States today. Childhood lupus is very hard to treat because doctors treating children have to use research that has only been conducted on adults. They have to make tough decisions about treatment and care plans when treating a child or adolescent because they do not have the correct research to help them. The lupus community is in great need of expanding their basic and clinical research on childhood lupus to learn more about this disease. The urgency of this topic gets more and more urgent each day.CruelMystery

Due to the urgency and need for more research on childhood lupus, donations for it up to $75,000 will be matched by a private foundation during the month of July. Gifts will help to support the Michael Jon Banin Pediatric Research Program. It will also benefit other advocacy, research, and education initiatives that are supporting living with lupus.

The Michael Jon Banin Pediatric Research Program was established in 2006. Lupus Foundation of America became the only lupus advocacy organization in the United States with a dedicated childhood lupus program. This program provides funding to facilitate childhood lupus treatment where there is a great need for it. Two things that this program focuses on are lupus nephritis and neuropsychiatric lupus. Lupus nephritis is lupus in the kidneys, which is often severe in children. Neuropsychiatric lupus is one of the least understood forms of lupus and can also be extremely severe in children.

Childhood lupus is difficult to diagnose and understand for many. Some children have obvious symptoms of lupus such as a fever, rash, and kidney problems. Other children with lupus may just feel tired and achy. Many doctors often find unseen problems like blood in a child’s urine that leads them to a lupus diagnosis. Also, although a positive ANA is required to diagnose someone with lupus, many children have a positive ANA and do not have lupus. All of this is important to know about children who are getting tested for the disease.

Many times the prognosis of childhood lupus is good, but it depends on how severely lupus is affecting internal organs and kidneys. If organ involvement is severe, children require aggressive treatment. If children

have a mild case of lupus with symptoms such as a rash and arthritis, lupus can be easily controlled. There is no way of knowing how lupus will affect a child long-term, but with correct care and management you may be able to control the disease. If you have any questions about finding a doctor in the area that has experience dealing with childhood lupus, you can call LFACT during office hours for recommendations.

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Join us on our Pinterest Page!

The Lupus Foundation of Connecticut has various social media accounts to put out information to the public regarding lupus. Currently, our pinterest account has over 500 followers! On our pinterest page we have a wide variety of things for you to read regarding lupus. Patients, friends, family and caretakers can all benefit from taking a look at our page!

Examples of information you can find on the LFACT pinterest page is facts and information regarding lupus, nutrition and health tips that can help with the disease and recipes that are beneficial to lupus patients. You can also find positivity, support and hope on our pinterest page through various boards that are posted throughout the week.

One of our latest pins to the pinterest account is the anti-inflammatory foods pyramid! You can find information about all the types of foods that you can eat and how many times a day you should eat them.  If you click on the pin, it links you to more information about inflammatory foods and gives you facts that are good to know.

Don’t know how to use pinterest? It’s easy. Log onto pinterest.com today and start an account through either your facebook or email account. Search Lupus Foundation CT Chapter in the search bar and click follow to see us on your pinterest home page!

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Tips to Have a Successful Doctor’s Appointment

It is extremely important to maintain a healthy lifestyle when dealing with lupus. In order to live the best that you can, it is beneficial to make sure that you are getting access to the best care that you can receive. You should be able to thoroughly understand your lupus diagnosis and develop a treatment plan that suits your needs. Also, you should have the best knowledge of lupus management to aid symptoms that arise from the disease. Although it is important to have the best care, it is also important that you play a part in treating your disease. This means that you should play an active role in your care by getting the best that you can out of every doctor’s appointment. How should you do this? Continue to read below to gather some tips that may help you when you have your next doctors appointment.

1. Prepare for the appointment ahead of time

Before you go in for your next appointment, make a list of questions and topics that you have been thinking of regarding lupus. Put the most important questions at the top so you can get feedback on them. This way, if you do not get through all of the questions, the most important ones will have gotten attention.

Notes: It is also a good idea to bring a pen and paper. During your appointment, write down important topics and notes. It is important that you do this so you can look at what you discussed later in the comfort of your own home. Sometimes it is easier to process things when you have a calm and controlled environment. Writing down notes at an appointment can also be helpful to show to caregivers, friends, and family. They can learn more about you by seeing what you discussed at your appointment.

Medications: Another important thing to remember is to bring all of the prescriptions, vitamins, and herbal supplements you are taking to your doctor’s appointment. If this is not possible, make a list of everything you are taking. Make a list of each drug or supplement you take, and include the dosage. It would be a good idea to take your prescription and supplement list with you to every doctor’s appointment so doctors can work as a team to give you the highest quality of care.

2. Communication with your doctor

To make sure that you are getting the best care that is out there, make sure you work with your doctor as a team. It is important to make sure that all of your physicians know all of your symptoms in order to treat you correctly. Let your doctors know about any symptom developments or issues that you may have been having. By doing this, it can help the doctor to understand your case more, and have the best understanding of your current condition.

Don’t be afraid to ask: You should always let your doctor know if you have any questions or concerns. With a disease like lupus it is important to be proactive. If something is not going the way you want it to, let your doctor know. Also, If you have any questions about lupus or the medications you are taking, do not hesitate to ask a doctor, nurse, or pharmacist for help or information on the disease.

3. Bring a friend

Don’t ever feel ashamed if you need a shoulder to lean on! Some doctor’s visits may leave you feeling stressed or emotional. Bring a friend, supportive family member or caregiver to help you throughout your appointment. They can also help you to take notes or recall things that happened at the appointment.

A thriving and healthy relationship with your healthcare providers begins with you. Make sure that you take an active role in your health and don’t ever hesitate to ask for someone’s help!

Questcor Pharmaceuticals Corporate Sponsorship Brings New Lupus Treatment

Lupus, similar to rheumatoid arthritis, is an autoimmune disease prone to systemic flares. Living with a rheumatic condition is not an easy feat. Fortunately, Acathar may be the right option for you. A prescribed medication, Acthar is given by injection and can be used for maintenance of SLE, or Systemic Lupus Erythematosus. Acthar can also be taken as a short-term adjunctive therapy for rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and selected cases of juvenile rheumatoid arthritis. 

Questcor Pharmaceuticals has recently become a corporate sponsor of the Lupus Foundation of America’s Walk To End Lupus Now, and proudly supported advocacy of Lupus Awareness Month throughout May. This corporate sponsorship allows SLE patients access to Acthar if a physician or healthcare provider considers Acthar a treatment option. 

Seeing as rheumatic conditions affect the immune system and cause inflammation, Acthar works with your immune system to treat rheumatic conditions. Acthar binds to several receptor types in the body and has certain anti-inflammatory properties. Although the exact way Acthar works in the body is unknown, further studies are being conducted. 

For further information regarding Questcor and Acthar, please consult your primary physician.