Champions of Change Blog

Working matters. Families matter. Paid sick days matter.

Melissa Broome is being honored as a Working Family Champion of Change

It’s an all too familiar story understood by every working parent.  In the wee hours of the morning, you’re jolted awake by the sound of cries on the baby monitor. Sleep deprivation is often an uninvited friend, but this time is different.  The crying is different. Something is wrong.

We’ve all been there. 

For me, it was an October morning. My baby girl was not quite 18-months-old.  When I went in to get her, she was clammy with fever and had thrown up in her crib. I knew right away I wouldn’t be going into the office that day. I made the choice to stay home, and thank God that I did. 

In a matter of hours, my daughter’s fever spiked dramatically, leading to a febrile seizure.  She was in my arms when the seizure happened. She was in my arms during that terrifying ambulance ride to the hospital. She was in my arms when the doctors eventually assured me that she was going to be OK. 

Nothing can prepare you for the excruciating moments of terror that come when your child faces a health emergency. Yet, looking back on that day, I know that I am one of the lucky ones.  My ample supply of paid sick days meant that I didn’t think twice about staying home with my daughter.     

For too many working parents across our great nation, this is not the case. When I juxtapose my experience with the experience of moms like Monica in Seattle, I am struck by the similarities and haunted by the differences. Immediately after Monica’s youngest son spiked a fever that led to a seizure, she had to decide to report to work or deal with the repercussions of not getting paid. Her choice was one that no parent should have to make.

Stories like Monica’s are happening across our country every day.  Hardworking moms and dads have to choose between staying home with their sick children and earning the income they need to keep their families afloat.

In 2015, we know that in the majority of our country’s households, both parents are working outside the home. And yet, our public policies continue to reflect a 1960s mentality.  We remain the only industrialized country in the world that doesn’t guarantee workers the ability to earn paid sick days.  Forty percent of American workers – more than 43 million people – are denied this basic workplace protection. 

In my home state of Maryland, more than 700,000 workers are unable to earn a single paid sick day. We launched Working Matters: The Maryland Campaign for Paid Sick Days in 2012. Since then, we have grown to become a powerful statewide coalition of more than 135 businesses, organizations and faith groups committed to passing the Maryland Healthy Working Families Act. The legislation, which was cosponsored this year by nearly 100 members of the Maryland General Assembly, would allow workers to earn up to seven paid sick days per year. 

While there are many political issues that divide the American people, we are undoubtedly united by an innate desire to care for our families.  Thankfully for Monica, Seattle passed a paid sick days ordinance in 2011. Policymakers in Maryland – and throughout the country – need to follow suit.     

Melissa Broome is acting executive director of the Job Opportunities Task Force (JOTF) where she helps to lead Working Matters: The Maryland Campaign for Paid Sick Days.

Making a Difference through Parkinson’s Education, Advocacy and Clinical Trials

Steven DeWitte is being honored as a Champion of Change in the Fight Against Parkinson's Disease.

It was March 5, 2005, I heard the chilling words, “I’m relatively certain you have Parkinson’s disease.” I was totally ignorant of the implications, and if not for the solemn delivery, I would not have viewed this news as serious. I slowly began my self-education, initially through Google and chat rooms.

Serious education began at the inaugural World Parkinson’s Congress, which revealed how the disease progresses over time, and exposed me to great people who deserved a better quality of life. I was inspired by fellow People with Parkinson’s (PWP) such as Robledo and Issacs. They showed me that patient advocates could have a broad reach and encouraged my drive for positive change.            

I started my first support group in October 2006 with eight attendees. The group’s reputation grew, leading to the founding of the Connecticut Advocates for Parkinson's Inc. With names like Hespelers, Baldwins, Pelchat, and Johnson, it has evolved into a collaboration of three State Advocacy Groups named the Make a Difference Parkinson’s Alliance (MADPA), which serves over 300 PWP.

With this foundation, we began to understand and seek opportunities to make a difference, through education, advocacy, and participation in clinical trials:

Education: Patients need to understand the progressive nature of the disease and stay current with treatment options. Sharing their knowledge with others helps the Parkinson community to assess treatments effectiveness and it encourages others to “make a difference.”

Advocacy: There is no stronger influence for change, than sharing patient experiences with elected officials who can drive change through research funding and the appropriate support for regulatory authorities.                                                    

Participating in Clinical Trials: It takes over fifteen years and at least $1 billion to bring a symptom-relieving drug to market. Clinical trials are a vital step in this process and require a sufficient number of patients in to the various stages of the clinical trials. Accelerating the recruitment and enrollment of volunteers can have a direct impact on the time and cost to develop advance treatments for Parkinson’s disease.

I discovered two major obstacles to participation in clinical trials was access and fear. PWP were more willing to participate in Clinical Trials than the statistics represented, so I built a database of patients who would participate in trials if transportation were provided. Registrants increased, when they knew others would accompany them, thus eliminating some of the fears. From this, the Clinical Trial Transportation Program (CTTP) was created.  

The Program demonstrated its effectiveness in several ways:

• The Program provides a list of pre-screened volunteers that dramatically reduces overall recruitment time.
• Trial results were accelerated, thus speeding data that can be used toward treatment-based research.
• The trial pool attributable to the CTTP lived over 100 miles from the Research Center. Volunteers through the CTTP are a new demographic for most studies.
• By reducing the time it takes to gather the data, there can be cost savings.

Since the program’s first trip to Boston with seven people on July 15, 2011, it has now logged over 100 patient visits at such institutions as Columbia Medical Center, Beth Israel Deaconess, and Weill Cornell.

This journey has brought me many good friends, which has increased my urgency to beat this disease. Through it, we have learned that patients of any disease can be empowered to make a difference, and are important partners in the development of disease modifying treatments.

I am truly humbled to be recognized as a White House Champion for Change, but share this honor with the many before me, and those currently, who are “making a difference” towards finding a cure for Parkinson’s.

Steven DeWitte is the founder and co-chairman for the Connecticut Advocates for Parkinson’s (CAP) and its affiliate organization, the Make A Difference Parkinson’s Alliance (MADPA)