Advancing Lupus Care Through Research and Advocacy: The Progress and the Promise for Lupus Patients

 

At our first scientific conference for the non-scientist over 100 attendees learned about the latest scientific advances, how novel research is improving care, and the critical role patients play in making new treatments possible. Speakers included scientists working on basic and clinical research as well as passionate advocates committed to overcoming the many legislative and healthcare insurance challenges to improved treatment.

President and CEO of the Lupus Research Institute Margaret Dowd opened the conference with a comment she called irreverent. “New drugs don’t come from the tooth fairy. They have to come from research and from the science.” LRI Board member Hope Hetherington gave an overview of the discoveries funded by the Institute followed by presentations by four world-renowned scientists on what they are researching right now that may significantly impact patient care. Lupus patient and advocate Kathleen Arntsen, president of the Lupus Foundation of Mid and Northern New York, Inc. covered the many issues impacting healthcare and how patients can help effect change so research advances can directly benefit their lives.

Novel Research = Better Treatment: An Overview of LRI Contributions
Our own Board member Hope Hetherington spoke eloquently about why research is so important and how the LRI is succeeding in making possible discoveries that are changing how lupus is treated.

LRI novel research has uncovered new genes, molecules, and pathways that are now new targets for drug development. Hope pointed to two major complications of lupus where discoveries funded by the LRI are having an impact: heart and kidney damage. LRI research has led to new ways to identify and treat patients at risk of heart disease. And our discoveries on how lupus damages kidneys have provided new strategies for treatment; there are now over 30 trials looking at possible therapies.

“Deep understanding of the disease makes lupus drug development more attractive for investment by the pharmaceutical industry – an effect known as de-risking. Re-purposing of drugs has also generated important therapies for lupus.”

New Treatments on the Horizon, Need Patients for Clinical Research

Dr. Richard Furie, North Shore-LIJ Health System in New York passionately talked about where we are and where we are going in the treatment of lupus, emphasizing the tremendous potential in new drug development. He described the drug development process from laboratory discovery through Phase III clinical trials testing safety and effectiveness of new drugs. “There are nearly 30 companies interested in developing drugs in lupus. But we need patients to participate to get these drugs tested and approved.” Watch the full video of his presentation at the LRI conference to learn more about what is involved in clinical trials and how patients and their families can help bring forth new treatments.

From Our Researchers:

Putting the Brakes on
Researcher Dr. Carla Rothlin from Yale University shared her research on finding a way to regulate the immune response by comparing the immune system to a car.  She talked about their work on finding a way to put the brakes on to keep the immune response in check.  Read more about Dr. Rothlin’s research findings and watch the full video of her presentation here.

Can a Food Supplement Prevent Blood Clots?
Dr. Bruce Furie, Beth Israel Deaconess Medical Center in Boston discussed his research into the possibility of using the food supplement rutin to prevent blood clots associated with lupus.  His presentation included videos of the formation of a blood clot in real time taken using an incredibly innovative and sophisticated imaging technology he and his team developed to understand the clotting process. “We are currently testing this in mice with the goal of developing a novel, safe and effective therapy to prevent blood clotting in patients with lupus.” Read more about Dr. Furie’s research and watch the full video of his presentation at the LRI conference here.

Can HIV Drugs Treat Lupus?
University of California at San Francisco's Matthias Wabl, PhD, shared his work looking at whether the causes of non-Hodgkin’s lymphoma and lupus might be similar and if so might be treated with anti-retroviral drugs like those used to treat HIV.  Read more about Dr. Wabl’s research and watch the full video of his presentation at the LRI conference here.

From Our Advocates:

Advocacy Needed so Patients Can Benefit from New Treatments
“What’s the good of having new, targeted therapies if insurance companies won’t let us take them?” posed Kathleen Arntsen, lupus patient, ardent advocate and president of the Lupus Foundation of Mid and Northern New York, Inc.  Her presentation alerted attendees to the many legislative and insurance issues on the state and federal levels that threaten lupus access to quality patient care – issues that we call on our supporters for help in advocating for change.

From Our Patients:

How Research Impacts Living with Lupus:
“With the Lupus Research Institute, since lupus is such a difficult disease, instead of going back to the same types of research that people had been working on for years, we decided to think out of the box and try new things. The evidence shows we certainly chose the right path. The progress is increasing exponentially.  The first new drug for lupus, Benlysta was 50 years in the waiting. That’s a very good sign because now other pharma companies will then take up the cause of lupus knowing that a drug can be approved for lupus. I am very hopeful.” Jennie, LRI Board Member, Lupus Patient and Advocate

“Research is important because it is our future. The hope is to find a cure, but meanwhile, we need to find new, better treatments.” Julie, Lupus Patient and Advocate

“LRI researchers have discovered that in lupus patients HDL cholesterol that protects against heart disease, it’s chemically altered to cause atherosclerosis. It’s fascinating to me that my sister had heart disease along with lupus, and I know that I have high levels of HDL. So I ask myself, is that why she had heart disease and could this new research have helped her?  That’s very powerful.  Hope, LRI Board Member and Lupus Advocate

“If I could take a test rather than a kidney biopsy that would be great... Having a kidney biopsy opens me up for infection, overnight hospitalization, blood clots.  With all the research and new studies, it gives me hope that if I can’t beat the disease, that at least I can lead a normal life…Learning about my disease, participating in research studies that is what is going to arm me against this war lupus.” Olympia, Lupus Patient, Advocate and Educator

Why is Research So Important?

We asked patients and family members about their experiences with lupus and why they feel lupus research from the LRI is so important. Click here to view video interviews as they address these questions.

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