The Clinical Participation Act
- Clinical cancer trials, which can offer life-saving treatments, traditionally see few minority participants
- This is due, in part, to the financial burdens of participating (e.g., lodging and travel expenses)
- The state of Illinois’ new bill, The Clinical Participation Act, seeks to address this imbalance by removing some of the typical financial barriers
The legislation, signed Dec. 20, aims to increase participation in clinical trials by removing barriers — most notably, financial ones — that keep patients from taking part in what could be life-saving treatments.
Read MoreAs a survivor, I can tell you cancer DOES NOT discriminate, and neither should clinical trials. pic.twitter.com/I5tuviQ9Zr
— Bobby L. Rush (@RepBobbyRush) February 24, 2020
The bill “will not only improve our understanding of lifesaving cancer medicine through increased participation and retention in clinical trials, especially among underserved populations, but it will also allow those same communities to have better access to potentially lifesaving drugs and treatments during their struggle to survive cancer,” U.S. Congressman Bobby Rush, of Illinois’ first congressional district, tells SurvivorNet.
Rush, who was treated for cancer of the salivary gland in 2008, introduced and was integral in the passage of the legislation. He is especially concerned, he says, about low minority enrollment in clinical trials and aims to see it remedied.
What the Bill Will Do
The law is “designed to specifically aid cancer patients who come from underserved communities, and will allow patients to be reimbursed for clinical trials within 30 days,” reports The Chicago Tribune. There is a sliding scale of income that determines which patients can receive the help, it says.
While clinical trials are critical to the progress sought in cancer treatments, trial-participation numbers are traditionally low, with less than 5% of cancer patients enrolling. Furthermore, of that small group, only one third are people of color.
In part, this is because of the burden of out-of-pocket expenses—meals, lodging, travel expenses, etc.—faced by those who’d need to travel regularly to a trial location often proves insurmountable.
Acknowledging that people from households with incomes of less than $50,000 are 30% less likely than others to become trial participants, the act (SB1711) makes legally clear that trial participants can be reimbursed for the expenses generated by their enrollment, without this repayment being viewed as coercion to enroll.
Its goal is to help all who are eligible and interested, and especially members of underserved populations, to enter and remain in trials, without financial stresses and complications preventing them from doing so.
Through SB1711, not only can potential enrollees be offered the repayments they may need in order to participate, but trials can make room for—and be strengthened by—the broadest possible ranges of eligible participants.
Similar legislation is now up for consideration in Wisconsin, Massachusetts, Florida and New Mexico. These out-of-pocket reimbursements are the law in California, Pennsylvania and Texas.
“Over the course of my life,” Rush tells Survivornet, “I have fought against injustice—and lack of access to cancer clinical trials is a medical injustice. It is unacceptable, and frankly dangerous, first to deprive African-Americans access to advanced clinical trials for medicines that could ultimately save their lives, and then, once the medicines are available for general consumption, to expect African-Americans to take them without the appropriate data to tell us how those drugs interact with their physiology. This is all due to the lack of participation of African-Americans during the clinical-testing phases.”
Cancer’s “financial toxicity,” defined by the National Cancer Institute as “adverse financial effects of cancer treatment” on patients, is a significant and ongoing issue in the U.S.
“When compared with individuals without a cancer history,” the NCI states, “cancer survivors have higher out-of-pocket costs, even many years after initial diagnosis, reflecting ongoing cancer care and care for any late or lasting treatment effects.
All this combined with time missed from work due to illness or treatment can create considerable financial strain.