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®.

^{Lonny & Holly}

Like many brides, Holly Jukiewicz is looking forward to her wedding this June where she will marry the love of her life, Lonny Warner. They met online just over two years ago, and decided to meet in person just a month later. That same week they both realized that this was the relationship that they had been looking for, and decided that they were not interested in dating anyone else. That September, Holly accepted Lonny’s proposal through happy tears.

A few months ago, Holly received an email from a co-worker asking for support for her daughter’s participation in The Leukemia & Lymphoma Society’s (LLS) Light The Night Walk. Holly didn’t hesitate to donate because she was touched by the young girl’s involvement in Light The Night.

There's another reason Holly was moved to donate. When her fiancé Lonny was just a few months old he was diagnosed with leukemia and he was is treatment for the next several years. His entire family was affected. His brothers often had to stay with other family members while their parents and Lonny were away at the hospital. And Lonny has memories of the dreaded trip over the George Washington Bridge into New York City -- that was the route they took when he had to go for treatment. The family was determined to get Lonny into remission, and he beat the leukemia.

Holly has supported Light The Night in the past. But this time she and Lonny decided that it would be fitting to share their gift with their wedding guests by having LLS-themed place cards. Holly told her co-worker, “If this can help any other person or little kid avoid going through what Lonny and his family went through --and still have memories of --then it is time and money well spent.”

It’s clear that Holly has nothing but praise and love for her future husband and his family. “I thank God every day that he and his family were so strong to get through this illness when he was so very young. I am so blessed to be part of his family and my family feels the same way about all of them as I do.”

Learn more about Light The Night by visiting www.lightthenight.org or reading @LLS.

Find out more about childhood blood cancers by visiting the main LLS website or by calling our Information Resource Center at (800) 955-4572.

Show your Valentine you have heart - make a donation to LLS in Honor of your sweetheart and support life-saving cancer research.