A few weeks ago we shared a post on financial insecurity and blood cancer treatment, sharing with you some helpful links to information and programs provided by The Leukemia & Lymphoma Society (LLS). In this post, we wanted to highlight the personal side of our Co-Pay Assistance Program and share with you a couple of stories about myeloma patients who have benefited from this program.

Kalimah Jenkins, a 44-year-old African American from Atlanta, GA, was stunned to find out that her bone pain and fatigue were symptoms of myeloma, a difficult blood cancer. She was equally as shocked when she found out how expensive her treatment would be, and wasn’t sure how she would be able to pay for the drugs she needed. It was in her favor that her doctors knew about LLS’s Co-Pay Assistance Program, which helped her pay for her critical treatment.

Cislyn Blackwood, a 60-year-old from Fresno, CA, also a myeloma patient, has also benefited from the Co-Pay Assistance Program. Her treatment was already very expensive, but after being laid off from her job and her COBRA benefits running out, her financial situation became ever more challenging. She received the funds she needed through LLS's Co-Pay Assistance Program and was able to pay for her medication.

Both women say that LLS’s program has been a tremendous help, and are grateful that they found out about it; unfortunately, some myeloma patients who can’t afford it wind up going off of life-saving treatment.

If you or a loved one has been diagnosed with myeloma, visit www.lls.org/copay or call (877) LLS-COPAY to find out if you or they qualify for assistance. Note that other blood cancer patients may quality for assistance as well.

If you are a doctor, visit www.lls.org/copayproviders to find out how you can apply for the Co-Pay Assistance Program on behalf of your patients.

Learn more about Kalimah’s and Cislyn’s stories.

Like many people around the world, you may be concerned about the current state of the economy and how that affects your family’s finances. If you are struggling financially and have bills for for blood cancer treatment we have some resources that may help you.

Health Insurance – Learn about your rights, COBRA and other helpful information.

Patient Financial Aid – The Leukemia & Lymphoma Society (LLS) provides a small amount of financial assistance to patients in financial need. Application also available in Spanish.

Co-Pay Assistance Program – This program offers help with the cost of insurance co-payments and/or insurance premium costs for prescription drugs for certain blood cancer diagnosis, depending on the availability of funds. Patients must qualify both medically and financially for this program. Also in Spanish.

Financial Health Matters – Download or order this free, informative booklet about how to deal more effectively with some of the financial challenges you may face as a blood cancer patient or caregiver. Also in Spanish.

Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues – Listen to the audio or download the transcript for this teleconference.

If you haven’t already, you may also want to register for The Leukemia & Lymphoma Society Community where you can participate in peer to peer discussions about financial and insurance issues.

We also encourage you to call our Information Resource Center at (800) 955-4572 and talk to one of our information specialists about other potential resources that may be available to you.

Ask around and you'll learn that leukemia is generally thought of as a childhood disease. A lot of people don't realize that many more adults than children develop leukemia and other blood cancers. What may be even more surprising to learn is how many people diagnosed with leukemia, Hodgkin lymphoma and non-Hodgkin lymphoma are young adults.

Yes, there's a population of young adults out there who have lives that include (alongside getting an education, dating, making career choices, getting married, having babies) chemo and radiation therapy, stem cell transplants, bone marrow biopsies and hair loss. A.K.A. life on the road to surviving cancer.

National Young Adult Cancer Awareness Week is raising awareness about the impact of cancer on young adults. Vital Options, a support and advocacy organization devoted to young adults with cancer, launched this annual event in April 2003. Since then, organizations like The Leukemia & Lymphoma Society (LLS) have partnered with Vital Options to keep spreading the word.

If you are a young adult with a blood cancer, we encourage you to take advantage of our many online resources including:

• LLS Blood Cancer Discussion Boards - Connect with your peers for valuable input and support.
• RSS News Feeds and Podcasts - Get news and audio on a daily basis in your RSS reader.
• National Education Programs - Register online for free telephone education programs where you'll have the opportunity to ask questions of our guest speakers. We also have an extensive archive of past programs in this area of our website.
• Free Materials - Our materials range from information on the different blood cancers, to ways that you can cope with a blood cancer diagnosis. They are free to download or order.
• eNewsletters - Subscribe to any or all of our monthly eNewsletters containing valuable news and updates.
• Search for Cutting-Edge Research - Make sure you're exploring all of your treatment options by taking advantage of this online resource.
• Information Resource Center - Chat online or email an information specialist who can put you in touch with even more information and support and help you find out about cutting-edge research.

Want to get involved? Learn about our different events and ways to volunteer through our How to Help section on www.LLS.org.

At February’s third annual Texas Forum on Blood Cancers, Louis J. DeGennaro, PhD and chief scientific officer for The Leukemia & Lymphoma Society (LLS), stressed the need for more clinical trials for blood cancer patients.

“Companies may have drugs on the shelf that are approved for other cancers and may work in blood cancers, but haven’t been tested because of lack of money and lack of enough patients,” said DeGennaro at the opening session, “Accelerating the Development of New Blood Cancer Therapies.”

In case you didn’t know, LLS is working hard on making sure that more clinical trials are available to blood cancer patients by way of the Therapy Acceleration Program, otherwise known as TAP. The goal of the program is to bypass some of the hurdles that have typically been in place, and to make sure that patients have access to the therapies they need sooner rather than later. The patient can still expect to receive high quality treatment – it’s just going to be there sooner, which can be critical for those who are living with fast-acting cancers.

Learn more about the LLS Therapy Acceleration Program on www.LLS.org and find out more about clinical trials at www.LLS.org/clinicaltrials. Read more about the Forum in Dallas at www.curetoday.com.

Good news for iPhone users – you can now download an application that allows you to get information from The Leukemia & Lymphoma Society (LLS) whenever and wherever you want! That’s right – we’ve teamed up with MedicinePhone.com as one of the organizations that supplies cancer news and information via the TouchOut™ Cancer application.

All you need to do is download the application (it’s free for a limited time) and then enter in your profile information. Every day that you use TouchOut™ Cancer you’ll get new cancer news and information. If you find the information relevant or helpful you can tap “TouchOut Up” – if not, then tap “TouchOut Down”. If you’ve added friends to the app all articles you found relevant by tapping “TouchOut Up” will be sent to them once a month (they can opt out of getting these articles from you if they don’t like receiving them).

We at LLS believe that it’s critical that patients, caregivers and medical professionals have easy access to the most up-to-date news and information about blood cancer. If you have an iPhone or iPod touch this can be another great way for you to stay plugged in with LLS and blood cancer news. We’re working closely with the team at MedicinePhone.com, so stay on the lookout for new features and capabilities.

Download the TouchOut™ Cancer application via the iTunes Store. Remember, it’s free for a limited time, so grab the application now!

Have you downloaded it and want to share your feedback? Email info@medicinephone.com with your comments.

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.

Resolutions, breaking bad habits, wiping the slate clean and starting over again--these seem to be the things that a lot of people are buzzing about at the beginning of the new year. Even if you’re not into resolutions (that are often scrapped by February), you may want to consider one thing this year.

Resolve to communicate better with members of your healthcare team – the doctors, nurses, oncologists, hematologists, radiologists, social workers, and others who are involved in blood cancer treatment. While they have a lot of expertise, there is sometimes a communication divide that can add to the stress of diagnosis, treatment and healing.

So how can you close the communication gap?

Think about how involved you want to be. Some patients are very involved in their healthcare from the start, while others might prefer not to ask too many questions or talk too much about their diagnosis or treatment. If you tend to be less involved, consider that taking an active role in getting an accurate diagnosis and making treatment decisions could have a positive effect on your health and quality of life. You can enlist the help of family members, friends, other cancer patients, and patient advocates to support you with provider communications. Remember that you and members of your oncology team are working together to beat blood cancer.

Ask questions. But don’t just ask questions – make sure you take notes in case you forget anything that you might want to remember later. Not sure what to ask? Go to www.lls.org/whattoask to download printable question guides you can take with you on your medical appointments. You can also refer back to a recent blog post we wrote called Healthcare questions to ask if you have been diagnosed with a blood cancer. You might want to contact the Information Resource Center to speak to a specialist about ways to communicate with members of your oncology team.

Find out what lines of communication are available to you. Are you the type of person that picks up the phone when you have a question or are you more likely to want to send an email? Ask your medical team if they wouldn’t mind you calling or emailing them with additional questions.

Do you have any other ideas on how to improve communication between medical staff and patients? What is your preferred way to communicate with your doctor? If you are a healthcare provider, do you have helpful patient-provider communication ideas to share?