A cancer diagnosis comes with a host of challenges for patients and their loved ones. Recognizing this, the Lymphoma Research Foundation (LRF) offers its Helpline that provides a variety of services to help address the many difficulties associated with cancer.
"I have spoken with hundreds, if not thousands, of people with lymphoma during my time at LRF, and almost all of them share how isolating and challenging it can be to navigate a cancer diagnosis. The LRF Helpline was created with these individuals in mind, so that no lymphoma patient or caregiver needs to face their diagnosis alone," noted Meghan Gutierrez, Chief Executive Officer of LRF. "Our goal is to ensure that every patient and caregiver specifically understands-and has access to-the many medical, educational, and financial resources that are available to them."
Information & Direct Support
The LRF Helpline aims to provide both informative and direct support to cancer patients, caregivers, and loved ones, according to Gutierrez, who noted that the trained staff offers individualized information on the various types of lymphoma, diagnostic tests, treatment options, potential side effects, and latest research to more than 10,000 patients and caregivers each year. Other Helpline services include the following services:
* providing patients and caregivers with questions to ask their health care team;
* customized clinical trial searches that provide a list of potential trials through the Clinical Trials Information Service;
* access to the Lymphoma Support Network, which connects patients and caregivers with others who have gone through a similar experience;
* financial assistance resources and other referrals for existing unmet needs; and
* free publications including disease- and topic-specific fact sheets and guides.
"All a patient or caregiver needs to do is pick up the phone or send us an email and there will be a person on the other end ready to respond and provide them with customized support based upon their particular lymphoma and the unique circumstances they might find themselves in," Gutierrez emphasized.
The Patient Experience
The LRF Helpline provides patients and their loved ones with a link to resources to meet their specific needs, whether that's information about their disease or support services. In some cases, it meets needs that they and their doctors may not even realize are there.
"Several years ago, I met a woman during an LRF in-person education program. Nancy was there to learn about her rare form of cancer," Gutierrez recalled. "She had already found our fact sheets on our website and downloaded our mobile app, but what she was really seeking was connection with someone who had been through a similar diagnosis."
Gutierrez was able to connect her with the LRF Helpline who enrolled her in the LRF's Lymphoma Support Network (LSN). Through this resource, she was able to connect with a woman who had been diagnosed with the same lymphoma subtype about a decade earlier.
"Nancy had no idea that such peer-to-peer programming even existed, and she later shared that her experience with LSN alleviated many of her fears and the sense of isolation she had," Gutierrez said.
As a mantle cell lymphoma survivor, Jim is another example of the impact the LRF Helpline can have on the lives of these patients and their families. The recipient of a patient aid grant, he was unaware that such programs were available to help patients pay for out-of-pocket expenses, like transportation to and from treatment, until he called the Helpline.
"A lot of patients are aware that there might be financial aid available to help with co-pays, but they often didn't realize that a patient aid grant program like ours was available and that it could be used to pay for parking when traveling for treatment, because those expenses can really add up," Gutierrez explained.
"It's incredibly touching to see what an impact the Helpline has made," she noted. "Patients have expressed that it has helped them feel more knowledgeable about their disease, lessening their anxiety and making them feel more prepared for the journey ahead. In addition, patients and caregivers-and even at times their health care providers-remarked that they didn't realize how many resources were available to people with lymphoma."
For the Oncology Provider
While the LRF Helpline is geared to lymphoma patients and their caregivers, it is can also be a valuable tool for oncology providers as well. This includes free bulk copies of LRF publications that can be kept on hand in the clinic to provide to their patients.
"The Helpline is a great resource for cancer care providers to share with their patients because it can really serve to complement their work and enrich the conversations that they have with their patients," Gutierrez told Oncology Times. "We also recognize that many offices don't have the capacity to offer the same disease-specific resources to every patient, and we often hear that they appreciate knowing that we can connect their patients to reputable organizations and services free of charge that will help them navigate their cancer journey."
Catlin Nalley is a contributing writer.
How to Contact the LRF Helpline
Patients, caregivers, and health care providers can visit http://www.lymphoma.org for more information about the LRF Helpline and its resources. Contact the Helpline at 800-500-9976 or email mailto:[email protected] (Monday through Friday from 9:30 a.m. to 7:30 p.m. ET).