The Leukemia & Lymphoma Society Blog

A comprehensive look at The Leukemia & Lymphoma Society [Video]

millss — Mon, 10 Nov 2008 19:46:54 GMT

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?

Pain management and blood cancer

millss — Mon, 06 Oct 2008 15:41:43 GMT

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?

Do the costs of some cancer medications outweigh the benefits?

millss — Wed, 06 Aug 2008 18:54:11 GMT

Recently I’ve been reading some articles online about the costs of cancer medications like Avastin* and Gleevec. When insurance companies up the cost of co-pays for these medications (our very own Hildy Dillon, Senior Vice President, Patient Services responded to this NYTimes article in a letter to the editor), it can cost the patient many thousands of dollars, and even doctors and medical practices can be hard hit by the rising cost of drugs. For the patients interviewed in these articles, the benefits outweigh the costs because the drugs mean living longer, but many patients do not have the adequate monetary resources to cover the costs of their medications. It’s not even fully clear to the medical industry if the extended length of life for some patients is because of drugs like Avastin.

Our Public Policy team here at The Leukemia & Lymphoma Society (LLS) has also been learning about these issues of higher co-pays vs. the benefits of the cancer drugs, and they are interested in hearing if you are experiencing some of this from your insurance companies.

Please consider sharing your answers to the following questions.

Do you have to pay more for blood cancer medications than you used to?

Do you rely on Gleevec or any other high priced medicine? Do the benefits outweigh the cost?

Would you be interested in LLS fighting for lower drug co-pays?

Leave your answers and comments here or you can contact the Office of Public Policy by filling out our online contact form.

Learn more about how you can get involved with the Office of Public Policy as an advocacy volunteer.

*We understand that blood cancer patients do not use Avastin, but we believe that issues like this that may affect other cancer patients may ultimately affect the blood cancer patients we seek to serve.

Thanks to you, Congress overrode the presidential veto of Medicare bill, sparing patient access to RITs

millss — Thu, 17 Jul 2008 18:14:48 GMT

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.