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®.

As with every year at The Leukemia & Lymphoma Society (LLS), our staff and volunteers work hard to provide the highest quality services and events as possible, as well as to advocate on behalf of blood cancer patients and fund critical research.

Here are some interesting highlights from 2008 to remind you of what we've worked to accomplish:

• Our Patient Services group did it again by offering more than 20 free telephone education programs to patients, caregivers, and medical professionals around the globe. These programs featured expert speakers who talked about topics ranging from Advocating for Your Child's Learning Needs: Through Treatment and Beyond to Tomorrow's Therapies Today: Clinical Trials for Leukemia, Lymphoma & Myeloma. Find out what free programs are available for registration now by going to the National Education Programs web page now.

• Speaking of clinical trials, LLS now supports a free clinical trial service that enables blood cancer patients to find clinical trials more easily. Patients can also call the Information Resource Center at (800) 955-4572 if they need assistance while using the system. Learn more about TrialCheck® at our website today.

• Our local chapters have been hard at work in the communities they serve. The Chapter Education Programs reached 48,000 patients and caregivers in 2008. Our Family Support Groups, also a community-based program, reached 12,000 participants in 2008. Find out more about this program.

• Aside from launching The Leukemia & Lymphoma Society Blog (this blog that you're reading right now), we also launched The Light The Night Walk Blog. Read about inspiring people and fundraising successes there.

• LLS now offers more than 50 different up-to-date free booklets, fact sheets and brochures on blood cancer, treatment and support topics. Most are available in Spanish, as well. Browse our Free Materials section and download or order your free copies today.

• LLS awarded a new Marshall A. Lichtman Specialized Center of Research (SCOR) grant to Beverly Mitchell, M.D., George E. Becker Professor of Medicine at Stanford University. She and her team will receive $1.25 million a year for five years, for a total of $6.25 million. Learn more about this award, and what Dr. Mitchell and her team are researching.

There's so much more that we've done over the last year (lots of events, new booklets and fact sheets, not to mention, introduce our new president and CEO, John Walter), and we're still going strong even as the year is coming to a close.

As we look to 2009, we realize that there's so much that we still need to be doing in the fight against blood cancers, but we can't do it without the support of our donors. We know that so many of you receive countless requests from other charities and non-profits at this time of year, but if you have been personally affected by a blood cancer then you understand the value of what The Leukemia & Lymphoma Society offers. Your secure tax-deductible online donation will help us to be able to continue to offer the services and events that are critically needed by patients, caregivers and survivors in 2009.

Every little bit helps. Donate to LLS today.

This last month the U.S. House of Representatives passed the National Pain Care Policy Act of 2008 (HR 2994). One aspect is that this legislation authorizes an Institute of Medicine Conference on Pain, with one purpose being an increased awareness of pain as a major health issue in the United States. Additionally it allows that a Pain Consortium be created at the National Institutes of Health, so that more government attention and resources are given to the issue of pain.

Blood cancer patients can appreciate the efforts behind this act. For some patients pain can be a part of the journey, either because of the cancer itself or the treatment for it. Here are a few important reminders if you or someone you know is experiencing pain:

• Pain can be managed, and it should not be ignored.

• When you first start to experience pain, make sure you talk to your doctor now instead of waiting; early treatment can be more effective than when it is more severe.

• Discuss how your pain treatment is working for you with your doctor. Communication is key in making sure that you’re receiving the most effective treatment for your pain.

• Keep track of what makes your pain feel better or worse over several days or weeks in a diary or notebook, and bring it with you when you go to the doctor. Knowing the history of your pain can help your doctor better manage your pain. Using a daily pain diary or pain notebook, such as the American Pain Foundation’s TARGET Chronic Pain Notebook to track your pain over several days or weeks may help you identify what makes it better or worse, whether certain medications or non-drug therapies are effective in controlling your pain, as well as how your pain episodes impact your daily activities and emotional well-being.

Read more about pain management facts and tips on www.LLS.org, or take a look at our newly updated fact sheet on this important topic for blood cancer patients.

Have questions that you can’t seem to find the answers to? Contact the Information Resource Center online, or speak directly with a specialist who can assist or point you in the right direction at (800) 955-4572.

Are you a patient that has experienced pain in relation to your blood cancer? Do you have tips you can share for communicating with doctors, family members or friends about your pain?

Tuesday, July 15, President Bush vetoed The Medicare Improvements for Patients and Providers Act of 2008 (H.R. 6331). However, Congress acted quickly to override the veto – the House voted 383-41 and the Senate voted 70-26 – that would have, among other things, cut Medicare reimbursement rates to doctors by nearly 11 percent.

The bill was of particular concern to blood cancer patients as the bill included a provision to extend the “freeze” on the Medicare reimbursement formula for radioimmunotherapies (RITs), Bexxar and Zevalin, which are used to treat non-Hodgkin lymphoma, by 18 months. Without such a freeze, RIT reimbursement rates would be drastically reduced and access to this valuable therapy would be threatened for many lymphoma patients.

Advocates from The Leukemia & Lymphoma Society and other organizations promptly contacted their elected officials and urged them to override the veto. Thank you to all of the advocates that took a moment to ensure that lymphoma patients have access to these potentially life-saving treatments.

Not sure what "RITs" are? Download our PDF on Radioimmunotherapy as a Treatment for Lymphoma or read about it online.