Lupus Colorado and Antidote Collaborate to Drive Lupus Research Forward

Today, Lupus Colorado is pleased to announce a new partnership with digital health company Antidote to help lupus patients and their loved ones match to clinical trial options quickly and easily. Lupus Colorado will now be offering Antidote’s powerful clinical trial search on its website.

There are currently more than 120 clinical studies in lupus, signifying the potential of new and better lupus treatments – and maybe even a cure someday. But, there’s a problem. These trials need more than 35,000 people to take part. It’s only by increasing the number of patients getting involved in research that lupus treatment options can expand.

This new search tool is powered by Antidote, and it uses natural language processing and artificial intelligence to make it easier than ever for people to find their best clinical trial matches. Patients need only answer a few questions online about their health, and Antidote’s search tool will provide a list of trials for which they are likely a match. People with lupus and healthy volunteers can then get in touch with the researchers conducting any trials of interest through Antidote. And of course, all data is kept entirely confidential.

“Lupus is a disease that has been underrepresented in research to date,” says Sarah Kerruish, Chief Patient Officer at Antidote. “But the tide is shifting, and we’re excited to be working with Lupus Colorado to accelerate research in this area and ultimately provide additional treatment options to those living with lupus.”

Get started searching today by visiting http://lupuscolorado.org/clinical-trials/.


Father’s Day: Men Have Lupus Too

My name is Brian and I have Lupus. When I was diagnosed in 2011, it wasn’t just my life that changed, but the life of my family. I have been happily married for 18 years and am fortunate to have six wonderful children, all BOYS! Being a father with Lupus was challenging at first, mostly because they did not understand what Lupus was. Lupus has changed my daily routine and has made it challenging to keep up with the energetic lifestyle I had with my boys.  I have always been an active part of my kid’s lives, from coaching their sports teams to spending evenings and weekends in the park playing. 

Between my lupus symptoms and the never-ending schedule of doctor appointments, maintaining my pre-lupus lifestyle is a daily struggle.  The silver lining is that there is hope for a better day and better test results. There will always be tough days, but I have learned to appreciate small victories instead of wanting the battle to be won. With the support of my family and the lupus support group, I am able to take each day as it comes and focus on the future.

This year I am hoping to be more active in local lupus events and am looking forward to participating in the 2017 Lupus Colorado Community Walk with the Purple Healers support group. I hope by sharing my story it will encourage more men with lupus to understand that they are not alone.  This Father’s Day, I want all Lupus Warriors to remember that by never giving up, we can have days were we can say, “Lupus I WON TODAY!!!”


Advocacy Updates

by Lupus Colorado CEO Inez Robinson

The staff and Board at Lupus Colorado has been busy advocating for you – the lupus patient. It’s been an exciting and busy few months!

Research Funding: Board Member Linda Garrett and I traveled to Washington DC in March to speak directly to Congress regarding increased research funding for lupus and the inclusion of pre-existing conditions in the American Health Care Act. On May 5, President Trump signed H.R. 244, a bipartisan spending bill that establishes for the first time an annual $5 million lupus medical research program at the Department of Defense, provides $34 billion for biomedical research through the National Institutes of Health, and appropriates an additional $2 million for the Lupus Initiative at the Office of Minority Health. I want to thank each of you who called your representatives and asked them to support this important research funding.

Medicare Part B.: Lupus Colorado has joined over 150 other medical and advocacy organizations asking Secretary Price to protect Medicare Part B reimbursement of specialized medicines including those administered in an outpatient setting. Medicare Part B covers a small subset of medicines that are often used to treat patients with serious and complex conditions, such as lupus.  Click here to read the entire letter explaining our view to the Secretary.  

Non-Medical Switching: In the face of rising health care costs, some commercial health plans are attempting to switch stable patients to a less expensive medication in hopes of lowering costs. Known as “non-medical switching,” these changes can result from formulary changes that eliminate coverage for a patient’s medication or increase the level of required cost sharing.   We believe that compelling a stable patient to change medications for reasons unrelated to his or her health; often driven by health plan design, policies or cost savings is not reasonable or safe. In fact, several studies indicate higher overall patient costs when this type of policy is implemented.

We’ll post updates to these important issues to our social media and website in the coming weeks and months.  Are there other issues that are concerning to you? Please let me know at info@lupuscolorado.org.


If you believe . . .dreams do come true

by Rhonda Jackson

As Lupus patients we often have dreams that we may have to put on the back burner for a day, a year or even a lifetime based on the status of our disease.  Chronic fatigue, severe pain and all of the other symptoms and complications that are associated with living with Lupus can alter the smallest of future plans and even derail the grandest of ambitions and dreams.

I had often thought about documenting some of the perils, the life adjustments and even the small triumphs that come along with living with this chronic autoimmune disease. However, I struggled with just how to deliver the message. I went back to my first love; the theatre.

Writing the the play “Crying Wolf…..Stories of the Lupus Warriors”, was in fact one of my dreams come true. On May 2, 2017, I watched the words that I had penned for almost 2 years come to life at the staged reading of “Crying Wolf…..Stories of the Lupus Warriors “, at Su Teatro Performing Arts Center in Denver.

“Crying Wolf….. Stories of the Lupus Warriors”, was created to show and tell what it is to live in the moment of the daily challenges of living with Lupus. Having Lupus is different for everyone and symptoms may vary at any given time depending on the individual. But it does change your life.

This theatrical presentation gave everyone in the theatre a snap shot of the reality of Lupus. The dramatic vignettes presented the audience with some sense of personal reference. It also provided education for those who had no idea about what having Lupus really means. Listening and seeing the staged reading heightened the sensitivity around Lupus awareness. It was also a way to acknowledge and celebrate May as Lupus Awareness month.

In Latin, Lupus means “wolf”.  The name of the play is somewhat of a reference to Aesop’s fable; “The Boy Who Cried Wolf”.  Since so many Lupus suffers don’t look sick.

The monologues gave the audience permission to laugh, cry, empathize and have a better understanding of this complicated and misunderstood disease.

Finally! Lupus had a voice.  The Warriors had a captive audience. The voice was loud and clear that night. People were listening.

My dream did come true that evening.  The community acknowledged that Lupus is real and Warriors are not just “crying wolf”….. They are in fact, running from the wolf.

Thanks to all of you who were there in the moment with me. Purple reigns!

Stay tuned!