Patient Education & Support

Patient Education & Support

Research will help us achieve an end to blood cancers. In the meantime, patients need help before, during and after their diagnosis and treatment. LLS is the leading nonprofit that does just that.

As the leading source of free blood cancer information, education and support for patients, survivors, families and healthcare professionals, LLS helps patients navigate their cancer treatments and ensures they have access to quality, affordable and coordinated care. In 2017, we:

  • Responded to nearly 18,000 inquiries to LLS’s Information Specialists from people seeking support, information, and resources.
  • Provided $72.97 million in co-pay financial assistance supporting 31,026 patients.
  • Provided 339 patients with in-depth clinical trial navigation and support through LLS’s Clinical Trial Support Center.
  • Distributed more than 700,000 educational booklets and fact sheets about specific diseases.
  • Educated 10,000 patients, caregivers, health care professionals and others through live web-based and local in-person programs.
  • Reached nearly 6,000 patients and caregivers through LLS Community, an online social network that provides education and support.
  • Developed an innovative partnership with Walgreens to enhance support to blood cancer patients and implement a novel pharmacist education and training program.

Reaching patients in their communities

As a community-based voluntary health organization, we have regional and local chapters throughout the United States and Canada so that we can support blood cancer patients in every community. This year through our community-based programs we:

  • Connected 1,100 volunteers with patients and caregivers diagnosed with the same disease through LLS’s Patti Robinson Kaufmann First Connection Program.
  • Facilitated 135 support groups in local communities led by nurses and social workers.
  • Convened 10 regional Blood Cancer Conferences with nearly 3,500 patients in attendance.

VOLUNTEER SPOTLIGHT: Gary Thompson

A six-year-old boy named Kethan, who was battling acute lymphoblastic leukemia while my wife battled breast cancer, changed me forever. In 2008, I had been named the first Man of the Year in Austin, Texas. But, my wife and Kethan inspired me to do more. I dusted off my bike and did my first Team in Training ride around Lake Tahoe in 2010.

I participated in that ride for seven more years – only three of which Kethan was alive for. He passed away in summer of 2013, and my wife passed away in fall of 2014. Until my last breath, I promised would do everything I could to fight cancer.

From chairing the Board of Trustees in Austin, serving as a member of the National Board, and chairing LLS’s inaugural corporate partnership council, I have been privileged to raise funds and awareness for LLS.

My proudest moment was when LLS and Walgreens announced their collaboration to provide patients and their caregivers with access to up-to-date information to best manage their disease. After making an introduction to Walgreens’ then CEO, I worked with my staff partner at LLS for almost two years to bring this collaboration to life.

Through my work with LLS, I have been able to raise awareness and funds, and change the lives of patients. LLS has empowered me to magnify my voice in the fight against cancer.

Celebrating 20 years of helping patients

The year 2017 marked 20 years of LLS’s Information Specialists providing personalized support, information and resources to patients and caregivers. Last year Information Specialists answered nearly 18,000 inquiries, providing one-on-one assistance to address patients’ and caregivers’ specific needs.

Information Specialists are oncology social workers, nurses and health educators who have specialized training in the blood cancers. They spend hours speaking with those impacted by blood cancer about their disease, clinical trials, and financial resources, and guide them to LLS’s comprehensive support and educational services. They can be reached at (800) 955-4572 or online at www.LLS.org.

Expansion of Clinical Trial Support Center

This year LLS doubled the capacity of its Clinical Trial Support Center (CTSC), in which specially trained nurses help patients find and enroll in clinical trials based on highly detailed, individualized assessments. The nurses work one-on-one with patients and caregivers to uncover all the important details needed to identify and enroll patients in appropriate trials, from their medical history to their current financial situation. From this information, they conduct a search and provide the patient with a list of trials to take to their physician.

Since it frequently takes time to find an appropriate clinical trial for patients, the CTSC nurses often maintain a relationship with patients and their family for many months and continue to provide support along the way. The majority of patients working with the CTSC have enrolled in one or more clinical trials.

Increasing Myeloma Awareness In African-American Communities

African Americans have twice the incidence of multiple myeloma as white Americans. Recent studies show that African Americans are significantly less likely to receive the newest treatments and combination therapies and more likely to experience treatment delays, including transplant delays.

LLS, with support from The National Black Church Initiative (NBCI), is leading a pilot program to improve access to novel therapies and quality of life among African Americans with myeloma. This program, called Myeloma Link, will provide tools and resources to navigate the treatment landscape more effectively and cope with the disease.

The 18-month pilot program is being carried out in Washington, D.C., and Atlanta, GA. LLS will take learnings from this pilot to expand the program nationally in rural, suburban, and urban areas throughout the country. Learn more.

Connecting Patients Online

Patients and caregivers told LLS that they wanted to connect with and learn from other patients and caregivers with a similar diagnosis. The solution, LLS Community, is now a place where users go online to share advice, experiences and opinions.

LLS Community is a free online social network that provides support and education to blood cancer patients and their caregivers. It was launched in 2016 and has proved to be a valuable resource for patients and caregivers, growing to nearly 6,000 registered users with over 15,000 user posts in its inaugural year. Learn more.

Learn More

VOLUNTEER SPOTLIGHT: Nancy H. Lamanno

In June 2015, I lost my husband Barry to acute myeloid leukemia. He had battled the disease for 18 months, including undergoing a stem cell transplant. When he was diagnosed in December of 2013, the first thing I did was to search online for AML and I found the LLS website and read every word available. 

Despite facing a deadly disease and eventually losing the battle, the support we received throughout my husband’s treatment made it a surprisingly positive experience. I sold my business during this time and once my full-time job as a caregiver was over, I wanted to take all that knowledge that I had gained and use it for good.  

Three times a week I speak with patients and their families about LLS and the wonderful programs and educational information available to them as a Patient and Family Outreach Coordinator for the Georgia Chapter. Families facing a blood cancer diagnosis love to hear that LLS offers financial and emotional support as well as information and education.

I have also become a First Connection volunteer coordinator, joined LLS’s advocacy efforts, and volunteer at local events. I receive a far greater benefit by volunteering with LLS than I give – I have a sense of purpose and fulfillment that I have never before experienced.