Clinical Trials Access

Memo of Support from The Leukemia & Lymphoma Society for H.R. 2676 (Rep. Pryce)

Clinical Trials Cost & Coverage and List of Additional Resources

For many individuals with leukemia, lymphoma and myeloma, as well as others struggling with life-threatening illnesses, standard therapy may not provide much hope; the best therapies are often available only through participation in a clinical trial. Unfortunately, access to cutting-edge treatment through clinical trials is often blocked as many insurance companies refuse to cover the “routine patient-care” costs on the grounds that the care is "experimental."

Although trial sponsors – either industry or the government -- must assume the responsibility for the research costs of a trial, including data collection and analysis, as well as providing the experimental agent free of charge, patients still depend on their insurance plans to cover the cost of services such as hospital stays – considered “routine care” – while enrolled in the trial.

The tremendous advances in the treatment of leukemia have been made only because therapies have been tested in clinical trials and found to be dramatic improvements over standard therapy. This clinical research process is a lifeline for those with life-threatening illnesses, and the failure of private and public insurers to cover the costs of routine patient care not only denies patients of the best care available, it also threatens the clinical trials system, as a whole.

The Leukemia & Lymphoma Society strongly supports federal and state legislation that guarantees individuals with leukemia, lymphoma and myeloma access to care in clinical trials. In recent years Congress has considered legislation that would establish standards for quality healthcare and patient protection that would have to be met by health insurance companies. Unfortunately, none of these proposals have managed to survive challenges presented by insurers and others opposed to covering “routine care” costs.

On the state level, the outlook is a little rosier with a number of laws having been passed that address the issue of clinical trials in varying and inconsistent ways. The Society encourages states that do not require private and public insurance coverage for “routine care” costs of clinical trials to examine what 18 other state legislatures have done and to adopt similar laws that enable cancer patients in their state to access the highest level of care possible.

For more information, please contact Mark Pascu, Director & Counsel for Federal Affairs or George Dahlman, Senior Vice President, Public Affairs for The Leukemia & Lymphoma Society at (202) 543-7033. Both can be reached via email at mark.pascu@lls.org  or george.dahlmang@lls.org. You can also contact your local  The Leukemia & Lymphoma Society Chapter.

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