The Leukemia & Lymphoma Society Blog

Star Trek’s Majel Roddenberry dies of leukemia

millss — Wed, 24 Dec 2008 15:37:57 GMT

^{Gene and Majel Roddenberry on the set of Star Trek}

We were saddened to learn of Majel Barrett Roddenberry’s passing from leukemia this last week. As many of you know, Ms. Roddenberry was the widow of Star Trek creator Gene Roddenberry. She was very involved in the Star Trek phenomenon herself, so much so that she was referred to as “The First Lady of Star Trek ”. She portrayed Nurse Christine Chapel in the original Star Trek series, Lwaxana Troi in The Next Generation and Deep Space Nine, and finally the voice of the ship’s computer in many of the series.

More than 230,000 people in the United States are living with leukemia, a cancer of the bone marrow and blood. There are four major types of leukemia: acute lymphocytic leukemia (ALL), acute myelogenous leukemia (AML), chronic lymphocytic leukemia (CLL), and chronic myelogenous leukemia (CML). Anyone can get leukemia, but the good news is that the five-year survival rate nearly quadrupled in the past 48 years for patients with leukemia. Learn more facts about leukemia by downloading or ordering a free copy of Facts 2008-2009.

The Leukemia & Lymphoma Society (LLS) offers our condolences to Ms. Roddenberry’s family, friends and fans. Since quite a few of us are fans of hers as well, we found a nice video tribute to her on YouTube – take a look and enjoy.

Are you a fan of Majel Roddenberry? Share your favorite memories or condolences in the comments section below.

Consider making a memorial donation in honor of Majel Roddenberry to LLS so we can continue the fight against leukemia and other blood cancers in 2009 and beyond. It's tax deductible, and you can submit it online or through the mail.

2008 at The Leukemia & Lymphoma Society

millss — Fri, 12 Dec 2008 20:43:44 GMT

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.

LLSpotlight: New video series about LLS

millss — Mon, 01 Dec 2008 19:26:53 GMT

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.

Healthcare questions to ask if you have been diagnosed with a blood cancer

millss — Mon, 17 Nov 2008 17:55:55 GMT

Hearing the words, “You have cancer” can make you feel like your life has changed in an instant. You may feel worried about making treatment decisions and handling money matters. Many people with cancer say they wish they had more information right from the start. Over time they found that taking an active role in choosing doctors and making other treatment decisions had a positive effect on their health and quality of life.

But it can take a while to get your thoughts together. So we offer printable healthcare question guides on many topics (in .pdf format). These will help you get the information you need to be involved in your treatment to look forward to recovery. You can select the topics you want and have these with you when you talk to your doctor and other members of your medical team.

Choosing a Specialist

Questions to ask when you are in a discovery consultation session with a specialist.

Treatment

Clinical Trials

Questions to ask when discussing clinical trials with your oncologist.

Complementary and Alternative (CAM) Therapies

Questions to ask when discussing CAM therapies.

Second Opinion Consultations

Learn more about the issues surrounding these topics by visiting www.lls.org/whattoask.

Have questions for us? Contact our Information Resource Center at (800) 955-4572 or via our Contact Us form.

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?

Reminder – We may be able to provide you with financial assistance

millss — Fri, 31 Oct 2008 18:42:13 GMT

We've talked about our financial aid programs here before, but it’s good to get a reminder every now and then – especially now that we’re all feeling the crunch a little more with the slowing economy.

First, a few items to keep in mind:

Not all patients will qualify for financial assistance, but the surest way to find out is to contact us for eligibility information.
We receive quite a few applications on a regular basis and process them in the order that they are received, so be assured that we are working very hard to process your application if you have already submitted one.
If you are confused about something on the application, contact us and we’ll explain.

Here is our list of financial aid programs for patients that you may be able to use:

Co-Pay Assistance Program – This program offers financial support for eligible patients towards the cost of insurance co-payments and/or insurance premium costs for prescription drugs. If you have questions about this program call the Co-Pay Assistance Program at (877) 557-2672 or email copay@lls.org and a specialist will assist you.
Patient Financial Aid Program – This program offers financial reimbursement for some medications, transportation and procedures. You can also contact your local chapter, and they will be able to assist you.

Here are a few other educational resources which you may find helpful as you try to figure out how best to manage your finances in relation to health care costs:

Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues – Part 1 | Part 2 – These are .mp3 files, so you’ll need an audio player like Windows Media Player or Real Player – both free - on your computer to listen to them. You may also download the .pdf transcript of this program or access other survivorship-themed audio programs here.
Financial Health Matters – You may download the free .pdf or go through our online order form to receive a printed copy in the mail. This booklet has many helpful financial tips when dealing with health care costs.
Financial Support – You can find more helpful information about finances and health care issues in our Financial Support section on www.LLS.org.

As always, if you have any questions please feel free to contact our Information Resource Center by sending a message via our Contact Us form or call us at (800) 955-4572. Our specialists will be happy to assist you.

Guest Post from Ronni Gordon, Leukemia Survivor, Cancer Blogger, and Reporter

millss — Tue, 14 Oct 2008 15:19:42 GMT

We’re excited to share with you another guest blog post from another cancer blogger. Ronni Gordon writes “Running for My Life: Fighting Cancer One Step at a Time” where she shares her ups and downs with leukemia. Here, in this guest post, she points out the value of the Internet when you’re on your cancer journey.

^{Cancer Blogger Ronni Gordon}

I started my blog on April 1, 2008, with these words: “I’m like Lance Armstrong.”

“Just kidding,” I continued. “Since its April Fool’s Day, I thought it was a good time to get that out of my system. I do have some things in common with him, though. We both ride a bike and we both fought cancer. Sports helped pull us both through. Running and tennis are closest to my heart, and it was after struggling through a road race at just about this time five years ago that I learned I had leukemia.”

Not too long before starting my blog, “Running for My Life: Fighting Cancer One Step at a Time,” (runnerwrites.blogspot.com), I didn’t even know what a blog was. I came across them more and more when doing research on the Internet for my job as a reporter at a regional daily newspaper in Western Massachusetts. I didn’t think blogging was for me, until I relapsed in 2007 and found myself with time on my hands – and in need of a creative outlet -- as I recuperated from an allogenic transplant that I received at the Dana-Farber Cancer Institute on Oct. 15, 2007.

I thought it would be fun to start out with a joke on April Fool’s Day.

I had fun putting it together and writing it, but, thinking that nobody was reading it, I stopped posting.

Then I got an e-mail from PJ, whose blog, called The Plog, is about her double cord blood transplant. Except for the differences in transplant, she wrote, we seemed to be doppelgangers; we’re both runners who relapsed with AML, we both have three children, we both go to Dana-Farber, we’re both journalists, and we both, thankfully, were in remission again. I wrote back asking her how she found me, and she said it was just through browsing the Internet.

PJ told me about a support system she had developed through reading other leukemia survivors’ blogs and forming friendships that went beyond the Internet. She also told me about the LLS Discussion Boards, especially the section on Bone Marrow Transplant.

I have a huge support system, but I didn’t know anyone who had leukemia. I am very good friends with a breast cancer survivor, and we had our own informal support group for two. But when you start talking about blood counts going up and down or about bone marrow biopsies, nobody can relate like a blood cancer survivor. I mentioned to my friend that there were many support groups for breast cancer survivors but none that I could find for leukemia survivors, and she said, “I know. Who gets leukemia?”

Recently I was pleased to see that LLS is, in fact, sponsoring a blood cancer support group at the Cancer House of Hope in Springfield. I will try to check it out, but right now I am can’t go in public places; my October transplant failed to engraft and I am now home recuperating from my second allo on June 10.

Which brings me back to the Internet, which is especially alluring when you can’t get out as much as you want. Following PJ’s lead, I began to connect with other survivors who really knew what I was going through. I also jumped into the Discussion Boards and found many kindred, and incredibly supportive, people. I feel like I know many of these bloggers and contributors, even though I’ve never met them.

There is, of course, an upside and a downside.

The upside, I think, is stronger. There is so much comfort in knowing you’re not the only one, and in hearing all those success stories. People who’ve been there have provided advice on problems large and small. For example, I wrote that I was afraid to make plans. Someone answered, “You have to live your life. Start by making short-term plans that you can handle.”

I wrote of some of my successes, such as getting back to tennis, and I felt that my friends in the blogosphere were cheering me on. I, in turn, was able to provide advice to people who were scared about some things that I had already been through. That made me feel good.

And I discovered other resources for support, through following links on other blogs.

Finally, writing a blog helps me frame situations in a productive way. When I encounter a bump in the road, I often switch gears into thinking about how I will write about this or that problem. It helps to remove the rawness of the situation, and sometimes to even find the silver lining.

The downside is easy to imagine. You connect with some people who get very sick or who don’t make it. You read about someone else’s problem and think that suddenly you’re going to develop it too. You put a question out there – either on the blog or discussion board – and if nobody answers on the discussion board or posts a comment on the blog, you feel neglected.

You have to put up your boundaries, get your head out of your computer, take a walk, live your life. You have to remember to read about other things, to finish the newspaper and keep up with the books you’re reading. You need to think about something totally different, or else the Internet experience will be more draining than rewarding.

It’s a fine line, and I’m still working on it.

And of course, I blog on.

Learn more about leukemia, blood and stem cell transplantation, as well as other treatment options.

If you haven’t already, join The Leukemia & Lymphoma Society’s online patient community, the Patient Services Discussion Boards. You can also find in-person, face-to-face support groups near you.

As always, feel free to contact us with questions about any of the blood cancers or our programs at (800) 955-4572.

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?

Play2Cures – Play online casual games to fight cancer

millss — Tue, 30 Sep 2008 14:46:52 GMT

Last week we launched Play2Cures, a website where you can help us raise $100,000 in 100 days by playing casual games. We launched in collaboration with PledgePlay, a company born out of father Jim Carol’s experience with dealing with his son, Taylor, being diagnosed with leukemia. Check out the video that talks more about Taylor's story.

So how does Play2Cures work?

Make a pledge. First you pledge any amount you prefer (minimum is $10) with your credit card – don’t worry your credit card information is secure. Each dollar you pledge gets you one Game Token, and one token can be used to play one game.

Play a game. Now that you have at least 10 tokens you can play one of five games: Putt Nutz (a little like miniature golf), SudokuSave (a cross between Sudoku and Tetris), Seven Solitaire (basic solitaire – but with fun music and animations), Ladybug (you need good eye-hand coordination) and MusicCatch (a bit mesmerizing).

Share those tokens. If you don’t think you can use all of your tokens or if you think a friend would enjoy playing games to cure blood cancers, you can email them and share some of your tokens.

Take a look at the leaderboard. If you’re the competitive type, swing by the rankings page to see how you compare to your fellow gamers.

Playing online casual games might not be your cup of tea (I’ll admit I’m pretty hooked on games myself), but remember you can still donate and give all of those tokens away to someone who does like to play. You can also show your support by posting one of our web badges on your website or social networking page.

There are also many other ways to support The Leukemia & Lymphoma Society. You can send us a donation, participate in one of our events, volunteer – and much more.

Learn more about Play2Cures via our press release and lls.play2cures.org.

Patient Programs Update

millss — Mon, 22 Sep 2008 14:47:56 GMT

This time of year we all seem to have so much more to do. Why not plan some things just for you? If you have myeloma or know someone who does, check out our new fall program at The Leukemia & Lymphoma Society (LLS). We also have several local events (Chapter Education Programs) about all types of blood cancers going on throughout the year. Included below are some offerings you may want consider in the coming weeks and months.

National Education Programs

October 15, 2008 - Understanding Myeloma: From Diagnosis Through Treatment. Register now for this telephone education program which will feature Dr. Asher A. Chanan-Khan. Participants will have a chance to ask Dr. Chanan-Khan questions during this hour and a half program.

Chapter Education Programs

Contact your local chapter about the availability of the following programs in your area:

Welcome Back: Facilitating the School Experience for Childhood Cancer Survivors - Note that parents are also welcome at this event.
Getting the Best Cancer Care at Age 55 and Older
Milestones in Myeloma Therapy: An Overview for Patients and Caregivers
The Road to Discovery: Emerging Therapies in Blood Cancers

There are also other programs that occur all throughout the year. Find out more about the following on-going programs:

Family Support Groups - These are regularly scheduled meetings that bring together patients, families and friends.
First Connection - Be matched with someone who has been through a similar cancer experience. Volunteers are also welcome to join this program.
Chat Sessions - Every Monday and Wednesday NHL patients are welcome to come online and chat about their cancer experience.

As always, feel free to share suggestions, ideas or questions with our Information Resource Center staff. Contact us via our Contact Us form or by phone at 1-800-955-4572. Or just visit us at www.LLS.org.

September is Leukemia, Lymphoma and Myeloma Awareness Month

millss — Fri, 05 Sep 2008 13:41:12 GMT

September is an important month for us at The Leukemia & Lymphoma Society (LLS). It is a special time when our ongoing collaboration with patients, caregivers and medical professionals is highlighted by our campaign for leukemia, lymphoma and myeloma awareness. Please join us in this campaign to educate more people about blood cancer.

Here are some quick facts* you can share on your own websites, blogs, social networks or in conversations with friends.

Today more than 894,000 people in the United States are living with a type of blood cancer.
Today about 75 percent of children with acute leukemia and nearly 80 percent of children and adults with Hodgkin lymphoma are cured.
Every ten minutes someone dies from a blood cancer.
An estimated 52,910 people will die from a blood cancer this year.
Since LLS began in 1949, our organization has invested more than $600 million in research to find cures and better therapies.
This year alone, LLS will dedicate $71.4 million to research.

Another thing you can do this month is help our Public Policy team work to get September officially recognized as Leukemia, Lymphoma and Myeloma Awareness Month by your state. How does this help? It ensures that there will be more media coverage around the month, which means more people will learn about blood cancers. It also means more people could support the fight to eradicate cancer. Contact your local LLS chapter to learn more about how you can help.

Learn more about leukemia, lymphoma and myeloma on the LLS website at www.LLS.org, or contact the Information Resource Center with any blood cancer questions.

*Note that these statistics are for leukemia, lymphoma and myeloma only.

Researchers: Apply for a Career Development Program Grant

millss — Mon, 25 Aug 2008 16:01:57 GMT

Each year The Leukemia & Lymphoma Society (LLS) awards research grants through the Career Development Program (CDP) to professionals who do important research related to cancer, including blood cancers. This research is critical in improving cancer treatment, and potentially in cancer prevention.

If you are a researcher and would like LLS to fund your research, visit our CDP webpage where you can learn more about what we award, as well as details on what we need from you.

Here are a few details:

Your letter of intent (required) is due by 3:00pm ET on September 15
Full applications are due by 3:00pm ET on October 1.
We will use proposalCentral for both the letter of intent and full application.

For more information, including guidelines and instructions, visit the CDP webpage.

Guest Post from Mike Hamel, Lymphoma Patient, Cancer Blogger and Author

millss — Mon, 18 Aug 2008 18:33:23 GMT

I really enjoy reading (and writing!) blogs. A blog provides a less formal environment to share information than other forms of writing, and it enables regular people to have their voice be heard by potentially anyone and everyone. I feel pretty privileged to be able to read people’s personal cancer experiences through their blogs, and was delighted to be introduced to Mike Hamel’s blog, Cells Behaving Badly.

Mike was diagnosed with lymphoma in early July of this year, and is taking the time to document his experience. He writes regularly and with a wonderful sense of humor that makes the experience sound less daunting.

Mike has graciously given us permission to share one of his blog posts with you, so without further ado, read on!

A Client, Not a Patient

^{Mike Hamel, client, and Nurse Sharon}

I won’t be able to change the nomenclature of the medical profession but I refer to myself as a client, not a patient. By definition, a patient is “One who receives medical attention or treatment.” The archaic meaning was “One who suffers,” from the Latin verb meaning “to endure.” A client on the other hand is “The party for which professional services are rendered.”

Catch the nuance? A patient is the object of medical care, a client is the subject of medical services. In language as in life, an object is passive, a subject is active.

A patient complies with the experts. A client consults the experts, then follows what seems the best advice.

A patient might complain but would never contradict an authority. A client will ask questions and weigh alternatives before deciding.

A patient goes where sent and doesn’t change doctors or clinics. A client tries to find the best physicians and facilities realistically available.

A patient asks “What?” A client asks “Why?”

Being a client takes a lot more work. I have to educate myself about my condition and treatment options. It’s a daunting but doable task thanks to the Internet. There are plenty of reputable sites with reliable information the average person can understand. (See the LYMPHOMA INFO box in my sidebar for a start.)

Oncologists know a shipload more about lymphoma than do its sufferers, but they don’t know everything. It’s impossible to keep up with the ocean of new information. A dialogue with a well-informed client could suggest new possibilities to a thoughtful physician.

When I see Dr. Kurbegov in two weeks, I’ll ask if radioimmunotherapy is an option for my type of lymphoma based on an article I read in the New York Times. I’ll ask about any clinical trials for which I might be a candidate, especially those sponsored by the MD Anderson Cancer Center where Dr. Kurbegov was a Chief Fellow.

I’m not trying to play doctor or impress anyone with my research skills. I’m just trying to understand my cancer and to be proactive in eradicating it. After all, it’s my life.

Learn more about Mike by visiting his blog. It’s possible you may already be acquainted with his books which include the Matterhorn the Brave series, as well as The Entrepreneur’s Creed.

Consider these "client" resources as you manage your diagnosis and treatment:

It’s easier to find clinical trials for blood cancer patients with TrialCheck®

millss — Tue, 12 Aug 2008 20:19:45 GMT

Exciting news! On August 7, 2008 The Leukemia & Lymphoma Society (LLS) announced the new TrialCheck® service which was launched collaboratively with the Coalition of Cancer Cooperative Groups.

This is great for a couple of reasons.

First, we support clinical trials as being one of the most viable treatment options for blood cancer patients. Clinical trials have gotten a bad rap, but the truth is that participation in research studies provides patients with access to treatment that is at least as high quality as standard care. Many patients who are involved in clinical trials also say they are glad to have the opportunity to help other cancer patients.

Second, we're doing this because we're interested in making it as easy as possible to find cancer clinical trials near you. Clinical trials aren’t for everyone, but if you are interested in exploring this option it’s literally just a few keystrokes and clicks of the mouse to get to the information you need.

So how does it work?

Once you are on the TrialCheck® website, you will be prompted to fill out a short questionnaire. This will tell the system what clinical trials to display for you in the final search results.

Your results will be displayed after you click the “Show Results” button. If you choose to enter your zip code, the clinical trials that are closest to that zip code will display first, making it easy to find convenient options if distance is a concern for you.

You can also save your search results so you don't have to do the same search again; all you have to do is register. You can also email the results to others.

Not sure what a clinical trial is, or concerned it might not be for you? Visit our Clinical Trial Service webpage to learn more about the ins and outs of clinical trials.

Visit the TrialCheck® website today to find a clinical trial near you.

Have you participated in a clinical trial before? Is it something you would do again if you had to do it all over?

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.