The Leukemia & Lymphoma Society (LLS) advocates for patients to participate in life-saving research in clinical trials. Clinical trials provide important data about carefully selected patient groups under controlled conditions. Another important way that patients can help the medical community to unlock causes, familial patterns and treatment trends is to take part in disease registries. These are comprehensive databases of disease and treatment information, for specific time periods and populations.

The databases are often used to analyze and interpret data about a common diagnosis. For example, when a person who has chronic lymphocytic leukemia (CLL) provides his or her health information to a disease registry, comparisons can be made with other CLL patients. The intent might be to discover genetic patterns, learn about the effectiveness of specific treatments or track the ages at which CLL patients are diagnosed. 
Before you agree to participate in a disease registry, you will receive written assurance about your privacy and other rights. Patient information is usually encoded so that your identity is concealed and your confidentiality is ensured. You can decide to stop participating at any time by notifying the disease registry.

LLS encourages people who have a blood cancer diagnosis to consider taking part in a disease registry. Since blood cancers are not common diseases, registries need to enroll as many patients as possible. It’s also important that disease registries include patients from all regions of the U.S. and from all walks of life. You and others living with a blood cancer can make a difference that will help the medical community better understand and treat blood cancers, giving patients hope now and in the future.

Learn more about disease registries, or find a disease registry with which you can share your health history. Rather talk with someone about disease registries on the phone? Give us a call at 1-800-955-4572.

The following post is from our Public Policy department.

Currently, only 3 to 5 percent of adult cancer patients participate in clinical trials. The leading reason for the low participation is barriers that hinder access to clinical trials. The Leukemia & Lymphoma Society (LLS) is pursuing several avenues to increase patient access to clinical trials so that blood cancer patients can have access to all of the treatment options available to combat their disease.  

In February, patients were asked in this forum to share their personal stories about one of the potential barriers to enrolling in clinical trials: health insurance coverage. Specifically, we asked if, and how, insurance company denial of coverage for enrollment in a clinical trial might have influenced their decision whether to participate in a trial. Now, LLS is searching for personal anecdotes about how patients have been affected by other hurdles to patient participation in clinical trials: transportation and communication.

Some clinical trials are only conducted at one institution, or at locations that require travel on the part of the patient, making transportation to that location for treatment and follow-up care a major concern, and a barrier for participation, for a number of patients.

In New York, LLS is pushing legislation that would break down these barriers to clinical trials access. Bills introduced in Albany by Assembly member Dick Gottfried (A. 1805) and Sen. Tom Duane (S. 4492) would create a state grant program to cover costs associated with clinical trials education and transportation, and patient navigation to find out about available clinical trials. Organizations such as LLS would then apply for these funds to provide financial assistance to patients in need.

LLS would also like to address this issue nationally. To do this we need your help in gaining a better understanding of how many blood cancer patients are being affected by transportation and communication issues. How many more patients would be willing to enter a clinical trial if they simply knew they were being offered? How many know about a clinical trial that would help their disease, but cannot afford to travel to the center where it is being conducted? Would patients be able to participate in a trial if LLS gave financial assistance to help cover these transportation costs that can sometimes be crippling? Please share your experience and thoughts with us.

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®.

The Leukemia & Lymphoma Society (LLS) has created a new video series called LLSpotlight, which features a panel of LLS leaders being interviewed by correspondent Bill McGowan. The first video is now posted on our LLS channel on YouTube.

We created LLSpotlight to talk to you about how our organization has been able to move blood cancer research forward, and to tell you about our current efforts in the fight against blood cancers. Our first video, Why LLS? conveys an important message for everyone who has been touched by a blood cancer and any of you who are considering donating your valuable time or hard-earned money to LLS. 

We plan on adding more videos in the coming months. If you have a Google or YouTube account you can subscribe to our channel and be notified when we’ve posted another video.

Why LLS?, and let us know what you think in the comments here or on YouTube.

As we near the end of this year, consider making a year-end donation to The Leukemia & Lymphoma Society online. It’s secure and tax-deductible.

The Leukemia & Lymphoma Society (LLS) is an extraordinarily busy non-profit. We’ve got patient programs, research funding initiatives, advocacy programs and so many events that it’s hard to decide which one (or ones) to participate in. Even for someone who works here, it’s hard to fully comprehend the breadth of work that we do on behalf of our mission to fight blood cancers.

We just posted our most recent video that gives the public a chance to see and listen to staff, including our CEO, John Walter, talk about what we’re doing in the fight against blood cancers. It's 10 minutes long and well worth the watch.

Also check out our great mission video that features real blood cancer patients and/or their families.

Share your thoughts in a comment below – did you learn something new about LLS through these videos?

The following is an excerpt from the May Research Commentary written by our Vice President of Research, Deborah Banker, Ph.D. You can read her future commentaries by subscribing to our monthly eNewsletters.

The Evolving Big Picture in Cancer Research

I recently attended the 2008 meeting of the American Association for Cancer Research (AACR), where more than 14,000 of the world's top cancer investigators gathered in San Diego, CA to share groundbreaking new findings and ideas.

Many of the research themes that I have brought to your attention in previous commentaries were discussed in the opening plenary session, presented by eight distinguished biomedical researchers.

Carol W. Greider, Ph.D., The Johns Hopkins University, talked about the ends of chromosomes called "telomeres." These protective caps normally get shorter each time a cell divides until they become so short that chromosomes deteriorate and aged cells die. Cancers can occur when the telomerase enzyme that elongates telomeres in young, healthy cells is reactivated in older cells, allowing these cells to divide beyond their normal lifespan. Dr. Greider discussed work showing that short telomeres limit tumor growth, suggesting that telomerase inhibitors might be useful targeted cancer treatments. Continued research in this area may lead to new treatments for blood cancer patients and for patients diagnosed with aplastic anemia and myelodysplastic syndrome.

Brian Druker, M.D., Oregon Health & Science University, finished this exciting session by talking about how to accelerate the pace of cancer drug development. It was Dr. Druker who developed the highly effective and safe targeted drug Gleevec®, for patients newly diagnosed with chronic myelogenous leukemia (CML). LLS was a primary funder of this advance which was built on knowledge of the kinase molecule that causes CML. We now know that other kinases are involved in a wide range of cancers, including blood cancers beyond CML.

Using Gleevec as a paradigm, Dr. Druker talked about target identification (finding the cancer-causing abnormalities) and clinical trials as the two points at which drug development could be streamlined. He and his colleagues are using batteries of gene-inactivating miRNAs to learn which kinase(s) is most involved in particular cancer cases; they have already had some success predicting which kinase-targeting drug will work for an individual leukemia patient. Dr. Druker said that this individualized target information will also allow clinical trials to be done in the "right" patients so that effective drugs can be more readily validated.

LLS is funding research in the laboratories of Drs. Greider and Druker. You can find more details regarding the blood cancer research advances presented at this year's AACR meeting by visiting their Web site and by staying tuned right here.

-Deborah Banker, Ph.D.