U.S. Rep. Clyburn Explains How Clinical Trials Provide Opportunity to Address Health Disparities

U.S. Rep. Clyburn Explains How Clinical Trials Provide Opportunity to Address Health Disparities

09.10.13 | By Chip Davis

As you may know from a previous Catalyst post, late last month we unveiled a new report on Research in Your Backyard: Pharmaceutical Clinical Trials in South Carolina.  We were honored to be joined by U.S. Representative James E. Clyburn who addressed the importance of clinical trials to making new medicines available to patients, and how the participation of minority patients in clinical trials is necessary to reduce health disparities.  We agree, which is why PhRMA has joined with the National Minority Quality Forum and Microsoftto launch a campaign to encourage greater diversity of patients who volunteer to participate in clinical trials.

The Congressman elaborated on his remarks in a letter to the editor which ran in The Post and Courier on August 30th, and has given us permission to share it.

09.10.13 | By Rep. James E. Clyburn

It may be one of South Carolina’s best kept secrets — thousands of clinical trials have been conducted across the state and they have not only resulted in improved medicines, but also a stronger economy.

A new report “Research in Your Backyard: Pharmaceutical Clinical Trials in South Carolina” shows that biopharmaceutical research companies, in collaboration with the state’s university medical schools and science centers, hospitals and contract research organizations, have conducted more than 3,200 trials of new medicines since 1999, including nearly 1,400 in Charleston and Mount Pleasant.

For patients, this intense clinical research activity has meant more treatments to fight a range of diseases and medical conditions and given many South Carolinians new hope as they seek new medicines to help live healthier, more productive lives.

Among the diseases targeted in clinical trials are the most debilitating chronic conditions, including diabetes and cancer. Our clinicians must continue their quest for new treatments and cures at a time when diabetes afflicts nearly 10 percent of South Carolina’s residents and cancer will kill nearly 28,000 patients in the state this year alone. 

I know of the ravages of these diseases first-hand — my mother died of multiple myeloma at the age of 55 and my father was taken by prostate cancer. My wife, Emily, was once a three-shot-a-day diabetic, but thanks to medical advances now takes one pill in the morning and a shot at night.

It’s very encouraging that biopharmaceutical companies and South Carolina research collaborators are working, in some cases, on new-generation biotechnology medicines, offering a new path for patients who have unmet medical needs.

This research and development also gives the state’s economy a boost, thanks to the hard work of our scientists and the biopharmaceutical sector in many communities. More than 4,800 direct employees and 18,045 total workers in the state are supported by biopharmaceutical facilities.

There’s a lot to be hopeful about, but we also need a reality check. According to a 2011 report by the Society for Women’s Health Research and the Food and Drug Administration’s Office of Women’s Health, African Americans are 12 percent of the population, but only five percent of clinical trial participants and Latinos are 16 percent of the population, but one percent of trial participants. That is unacceptable 

Eliminating health disparities is one of my passions, but we can’t make progress without everyone having skin in the game. Without participants of every color and hue, it is difficult for biopharmaceutical researchers to better understand how different patients may respond to new medicines and develop treatments that are effective for all patients.

In South Carolina, there are nearly 300 clinical trials of new chronic disease medicines — including 152 in the Charleston area — being conducted by biopharmaceutical companies and local research centers that are still recruiting patient participants. Information about those trials is in the “Research in Your Backyard” report and that information should be carefully reviewed by our state’s health care providers and community health workers and shared with patients and families.

Other encouraging steps are being taken to increase clinical trial diversity. The National Minority Health Quality Forum, for example, is a model for improving minority outreach in clinical trials, and I am pleased to hear that it is gaining momentum with a new collaboration with the Pharmaceutical Research and Manufacturers of America (PhRMA) and Microsoft to help increase diversity in clinical trials.

This partnership includes creating the National Clinical Trial Network (NCTN), a portal that links patients, physicians and researchers to increase participation and diversity in clinical research. Researchers in South Carolina should explore collaboration with NCTN to help recruit more African Americans and other minorities into the state’s clinical trials.

As we remember the 50th anniversary of the March on Washington, I am reminded that Dr. Martin Luther King Jr. once said, “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”

Clinical trials provide us an opportunity to address the health disparities that exist here in South Carolina, and I believe we should embrace the pioneering biopharmaceutical research that is taking place in our own backyard — both for our health and our economy.

James E. Clyburn represents South Carolina’s 6th District in the U.S. House of Representatives.

 

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