The following is a blog post from our Public Policy department. They are interested in learning more about your experiences with insurance companies covering the costs of clinical trials. Read on and share your thoughts at the end via the comments section. (You'll need to be logged in to comment. If you aren't already a member of our community, register now - it's free and easy!)

Clinical trials are a critical part of the process in finding better treatments for leukemia, lymphoma and myeloma. Thirty-five years ago, a leukemia diagnosis was a death sentence for most children. Today, with nearly 60 percent of pediatric cancer patients participating in clinical trials, advances have been made in diseases such as acute lymphocytic leukemia (ALL) where the survival rate for children is now close to 90 percent. ALL is the most common form of childhood leukemia.

Unfortunately, the statistics for adult blood cancer patients do not reflect the same clinical trials participation and results. The participation rate among adults in clinical trials is only 3 percent to 5 percent, nationally.

One obstacle facing adult patients in clinical trials is that many insurance companies refuse to cover necessary “routine patient-care costs” for adults when these services are provided to a paitent in a clinical trial, such as nursing services, in-patient care and prescription drugs. The companies defend their actions by arguing that the trial treatment is “experimental,” with no proven benefits. But these are the same healthcare services that many insurance companies cover if the patient received these services in conjunction with standard care.

Currently, 24 states and the District of Columbia have either laws or special agreements requiring insurance companies to cover these costs for patients enrolled in a clinical trial.  But that is not enough.

The Leukemia & Lymphoma Society (LLS) is seeking to have legislation passed that would break down this barrier to clinical trials access. Bills have been introduced in nine states – Florida, Illinois, Indiana, Iowa, Kentucky, Pennsylvania, Oregon, South Carolina, and Texas – that would require insurance companies in those states to cover the routine care costs for patients enrolled in a clinical trial.

However, state mandated insurance reform would not cover employees whose health insurance is provided by self-funded group policies and governed by the Employee Retirement Income Security Act (ERISA). Legislation has been introduced in the U.S. Congress that would cover this population of patients. Just over 50 percent of employer-based insured Americans are covered by ERISA governed plans, making the two-pronged effort necessary.

LLS and its coalition partners in New York also seek to break down another access barrier. Legislation has been introduced in the New York General Assembly to create a state grant program to cover the costs for transportation, education, and patient navigation associated with clinical trials in the state.

LLS wants to have a better understanding of how many blood cancer patients are having trouble getting their insurance company to cover these costs. How many more patients would be willing to participate in a clinical trial if they knew these costs would be covered? Please, share your experience and thoughts with us here.

Visit the Advocacy section of our website to learn more about how you can get involved.

Learn more about Clinical Trials, or find a clinical trial by visiting TrialCheck®.