Profiles of Progress: Members of Congress Fighting for Cures

Released: 2010

Representative Lucille Roybal-Allard

Members of Congress often interact with their constituents but rarely do these meetings lead to lifelong inspiration. For Representative Lucille Roybal-Allard, however, two young girls from her home district in California have had a profound impact on her life.

Cynthia (age 15) has scleroderma, a chronic connective tissue disease that causes skin to harden and become extremely sensitive to heat and cold. Cynthia must often wear gloves because her hands intensely react when they are cold. Congresswoman Roybal-Allard first met Cynthia when she came to Washington to testify before the Labor – HHS – Education Appropriations Committee about the need for Scleroderma research in the spring of 2008.

For Mikayla (age 12), juvenile rheumatoid arthritis (JRA) is only one part of a very busy life. The Congresswoman became friends with Mikayla when she came to lobby for Arthritis research several years ago, and last year invited the young advocate to testify before the LHHS Appropriations Subcommittee. This past summer the medication Mikayla had been prescribed failed and she was bedridden for several months, highlighting the need for additional research and improved treatments for JRA patients.

The courage of Cynthia and Mikayla in the face of their ongoing struggles with chronic diseases was an inspiration for Rep. Roybal-Allard to become a champion for increased biomedical research funding. According to the Congresswoman, the pain and suffering these girls and their families face is just one of the reasons she fights for them. She also believes that we as a nation pay a price, not just in medical costs, but in having these vibrant young girls sidelined with illnesses.

“I think that whenever we lose the talents and abilities of any young person, it isn’t just that person who loses, it’s also our society as a whole,” Rep. Roybal-Allard said.

For this reason Rep. Roybal-Allard has been a long time champion for the National Children’s Study, a multi-year and multi-site research study that will look at the effects of environmental, cultural, family and genetic influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21.

“We don’t have the answer as to why some diseases impact a particular ethnic population versus another,” says Rep. Roybal-Allard, pointing to issues the National Children’s Study is working to uncover. “And we need to find those answers, not only to prevent human suffering but also to improve the health and prosperity of all our minority communities .” According to Rep. Roybal-Allard, the National Children’s Study is one more way that the NIH is determining the national agenda for medical research.
It’s for these reasons and more than Rep. Roybal-Allard supports increased funding for the National Institutes of Health (NIH). The Congresswoman strongly believes that the NIH plays a critical role in developing life-saving diagnostic tests, treatments and medications to fight the diseases that threaten the health of our nation. But she also sees the NIH as key in developing the critical next generation of research scientists. She continued, “Unless we invest in research, our brightest young minds will choose other careers or other countries in which to fulfill their science dreams. We as a country simply cannot afford to fall behind in our research capabilities and capacity.”

Another person who inspired Roybal-Allard was Randy Pausch, the Carnegie Mellon University professor diagnosed with pancreatic cancer at 47, who was told after a procedure designed to stop the spreading of the cancer he had three to six months to live. In those final months, Pausch gave a lecture entitled, “The Last Lecture: Really Achieving Your Childhood Dreams,” that went viral on YouTube and was eventually turned into a best-selling book called “The Last Lecture.”

In March of 2008, shortly before Pausch passed away from complications of pancreatic cancer, Rep. Roybal-Allard invited him to testify before the Labor, Health & Human Services Subcommittee about the need for increased pancreatic cancer research funding.

Pausch “fought until the very end against a disease that offers little hope of survival” said Rep. Roybal-Allard.

As Rep. Roybal-Allard sees it, increased funding for biomedical research will help our country progress toward a future where patients won’t have to fight the same battles Randy Pausch, Cynthia and Mikayla and their families have.

“What investment in research means to them is that there’s hope; that there are people out there who are working everyday to find a cure. And research also means that if a disease has a genetic or environmental component than there is hope that we can one day prevent that disease from cutting short the hopes and dreams of our next generation. She continued, “This is absolutely essential to the future prosperity of our nation. I just don’t understand, quite frankly, how anyone can say that we shouldn’t be investing in research and finding the answers to these terrible diseases.”