Christina’s Resource Round-Up: Leukemia and Lymphoma Society

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Christina Bach, MSW, LCSW, OSW-C

Christina Bach, MSW, LCSW, OSW-C

Hi everyone! Welcome back to Christina’s Resource Round-Up. I apologize for the lag in my blog writing, but the summer heat has gotten the best of my creative writing juices! No worries, we’ve had a few cooler, less humid days of late, and my writer’s block seems to have resolved.

In this installment, I’ll be focusing on the Leukemia and Lymphoma Society (LLS). I’ve been working closely with the LLS for over ten years. Like the American Cancer Society, the LLS provides great patient services and resources as well as supporting research towards the treatment and cure of blood related cancers.

Robert Roesler de Villiers, son of a well-to-do New York family, was only 16 when he quickly succumbed to leukemia in 1944. Five years later, frustrated by the lack of effective treatments for what was then considered a hopeless disease, Robert’s parents Rudolph and Antoinette de Villiers started a fundraising and education organization in their son’s name. The task in front of them was daunting. Even as the first chemotherapy drugs were being developed and used in the 1940’s and 50’s, Leukemia was still 100% fatal—and sadly impacted young children at alarming rates. The de Villiers were dedicated to finding and funding effective treatments for Leukemia and soon their organization became known as the Leukemia Society. In the 1960’s, struck by the nationwide impact of Leukemia, the society became known as the Leukemia Society of America.

In 2000 the society changed its name once again, to the Leukemia and Lymphoma Society. In this capacity the mission of The Leukemia & Lymphoma Society (LLS) also evolved. The mission of LLS is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS is the world’s largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

What does the LLS do?

I’m going to focus on three areas of service the LLS provides: patient services/education, fundraising and research.

Patient Services and Education

Some of the services provided to patients and families coping with a blood cancer by the LLS include: patient education programs, the Information Resource Center (IRC), Family Support Groups, Co-Pay Assistance, Patient Financial Aid, the Patti Robinson Kaufmann First Connection Program and the Trish Green Back to School Program.

When diagnosed with cancer, most patients want to gather information from a reliable source. I encourage my patients to think of this information as a tool in their cancer fighting toolbox. The LLS’s Information Resource Center (IRC) is an amazing place to start accessing this information. The IRC is staffed daily from 9am-6pm by trained oncology professionals. By calling 800-955-4572, the patient, caregiver OR medical professional can connect with an expert and receive information about specific diseases, treatments, symptoms, clinical trials, and coping strategies. It is reassuring to know that someone with reliable information is a simple, toll free phone call away. You can also connect with the IRC through the web through their “live help” option or by sending an email to infocenter@lls.org. The bottom line is that support and information are readily available through the IRC. The IRC is also the place where medical professionals can access free educational materials for patients and caregivers.

The LLS also offers Family Support Groups at various sites throughout the United States. Some groups are disease specific: for example in the Philadelphia area we have a CML group. Other groups provide services to inpatients receiving treatments and still others are open to any patient or caregiver coping with a blood related cancer. The goal of the Family Support Group is to offer a safe environment of mutual aid, support and education. All groups are facilitated by professionals who are screened and approved by the LLS. Groups are free of charge. Some focus specifically on support while others bring in guest speakers to provide education and information. To find a group near you see www.lls.org/fsgsupport.

Money matters always seem to add to stress when coping with a cancer diagnosis. The LLS offers two financial assistance programs: patient financial aid and copay assistance. All patients with a diagnosis of a blood cancer are eligible for patient financial aid, renewable annually (pending availability of funding). This $100 stipend can help offset some expenses related to treatment including parking, gas, medications or supplies. A patient does not need to meet financial eligibility criteria to receive financial aid; the only criteria a patient must meet is having diagnosis of Leukemia, Lymphoma, Myeloma, or MDS. The application is one page, must be signed by your physician and submitted to your local LLS chapter. The application is available through your social worker or online at www.lls.org.

The Co-Pay Assistance Program is an amazing financial resource for those who qualify. Co-pays are those out of pocket expenses not covered by your medical insurance that can really add up. The LLS program aims to help defray the cost of mounting insurance copayments and insurance premiums. It does not cover things like transportation to appointments, labs and radiology. Currently the co-pay assistance program applies to the following diseases: CLL, NHL and Hodgkin Lymphoma, Multiple Myeloma, Waldenstrom’s Macroglobulinemia and MDS. Each disease site has specific awards based on funding received. The co-pay application can be initiated online by your health care practitioner (doctor, nurse practitioner or social worker). You must also meet financial criteria to be eligible. I recently worked with a patient who received up to $10000 in co-pay assistance from the co-pay program! It may require a little leg work to get the application and supportive documents together, but it is WELL WORTH the effort!

I also love to refer patients to the Patti Robinson Kaufman First Connection Program. First Connection is a peer to peer support program. Participants are matched with trained volunteers who have gone through a similar experience. The LLS does its best to match participants with peer volunteers based on diagnosis, age, gender and other factors that may help create a mutual connection and understanding as well as ease communication between the parties. The program can also match family members with family volunteers. It is always different to connect with another person who has walked a mile in your shoes. I can educate patients and families all I want, but I still haven’t been diagnosed with a blood cancer. The experience a patient can receive when connecting with another patient can be incredibly powerful and helpful to all involved.

Finally, the Trish Green Back to School Program focuses on helping children with a blood cancer to transition back to the school environment. This program provides support and education as well as aims to increase communication amongst a child’s family, care team and school to improve the child’s experience when going back to school after or even while still in treatment. To access more information about the Back to School program, see www.lls.org/backtoschool.

The Society also maintains up to date information and news about diseases, treatments, diagnosis, clinical trials and research through its wonderful website, www.lls.org.

Fundraising

I also want to highlight a couple of fundraising programs that also support patients through patient services and supporting research: Team in Training and The Light the Night Walk.

Have you been wanting to get of the couch and train for a marathon, half marathon or triatholon? Want to help raise money for a great cause? Want access to great motivational training and to team up with other folks hoping to do the same? Then Team in Training (TNT) is for you. TNT participants are focused on raising money to help make a difference in the lives of cancer patients. All the while, the TNT program has trained over half a million people and raised over $1 billion to fund cancer research. The program offers both in person and online “virtual” training programs as well as the opportunity to participate in over 200 exciting events all over the country! For more information on Team in Training, see http://www.teamintraining.org/.

The Light the Night Walk (LTN) is an annual event held in various locations across the country. I have participated in LTN for many years, as a walker and as a volunteer. LTN is a wonderful, family friendly event that utilizes illuminated balloons. Red balloons are carried by supporters of those with blood cancers, white balloons are carried by survivors and gold balloons are carried in memory of loved ones lost to blood cancer. Imagine the sun setting over your community while all around you are lighted balloons, providing an incredibly moving symbol in our fight against blood cancers. I have walked with teams, my family and my dogs. I walked in the city and in the suburbs. The event reaches out to all in all areas. Interested in participating in a walk near you? See http://www.lightthenight.org/selectwalk/. Maybe I’ll even see you there!!!

Research

The LLS has been contributing to blood cancer research since its beginnings. The LLS is committed to funding research to help cure leukemia, lymphoma and myeloma and related malignancies and improve quality of life for patients diagnosed with these cancers. In 2010, the LLS invested over $72 million into blood cancer research – specifically $16 million towards NHL, $23 million towards acute leukemias, $16 million towards chronic leukemias and $5 million towards Myeloma research. The LLS has contributed greatly to the development of prominent therapies helping patients every day, including Gleevec (CML), Velcade (myeloma) and Rituxan (lymphoma). The LLS’ contributions to research have clearly impacted patient’s quality of life and greatly improved the rate of cure in childhood leukemia and length of survival for adults diagnosed with a blood cancer.

In closing, the LLS offers an amazing range of services, education and support to patients, caregivers and clinicians caring for those with blood cancers. I encourage you to utilize their services and to check out their website for information on any of the programs highlighted in this blog.

In September, I’m going to focus on resources for Co-Pay assistance and in October, we will spend some time focusing on resources for Medicare open enrollment! If you have questions for the Round-Up about Co-Pay assistance or open enrollment, please SEND THEM to christina.bach@uphs.upenn.edu! I love to answer personal questions and focus on case based solutions!

Until then, enjoy what is left of the warm summer days. I, for one, am looking forward to seeing the trees change and get cozy in my snuggie.