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By Patricia Koffman, Co-Founder and Communications Director, CLL Society  |  Sep 15, 2021

Are You Receiving the Best Possible Care for Your CLL?

Patricia Koffman

Patricia Koffman, CLL Society

Chronic lymphocytic leukemia (CLL) is the most common adult blood cancer in the United States. There are approximately 178,000 patients currently living with CLL, and about 20,000 new cases are diagnosed annually. The CLL Society understands that a diagnosis of CLL can be overwhelming, but the right care can make all the difference.

The CLL Society Inc. is a 501(c) (3) patient–centric, physician–curated nonprofit organization focused on patient education, support, and research, dedicated to addressing the unmet needs of the CLL and related blood cancer communities. Through our website, we offer a multitude of educational opportunities and services to help patients learn to advocate for the best possible care for their CLL. We explain the rapidly changing therapeutic landscape and the importance of clinical trials. We build patient support networks and engage in patient research to bring awareness to CLL patients’ preferences and needs. Our motto is Smart Patients Get Smart Care™.

Expert Care is Crucial

Today, CLL patients are living longer than ever. CLL treatments are better than ever. However, you may find yourself wondering whether you are receiving the best possible care for your CLL and reaping the benefits of the extraordinary recent advances that have been made in the understanding and treatment of CLL. Patients often identify the need for a second opinion when it becomes time to select an initial treatment option, or when the question of changing their current treatment regimen has been raised. An expert second opinion can be particularly desired if they have received conflicting advice as to how to proceed.

Data support that having access to a CLL expert provides proven survival and outcomes advantages. In other words, those with a CLL expert as part of their team, live longer than those without this advantage.

Free Second Opinion Consult

For many, although an expert second opinion may be desirable, it may be out of reach. Patients may live far from a cancer center of excellence, have inadequate insurance coverage, or face other barriers. The CLL Society addresses this challenge by offering no-cost 30-minute online HIPPA-compliant second opinion consults with a CLL expert through its Expert Access™ Program. Nearly 400 CLL patients have benefitted from this program.

 

In order to qualify for this service, you must have a diagnosis of CLL, live in the United States, and not be in the care of a CLL expert. These are the only qualifying criteria. No financial questions are asked. No demonstration of financial need is required.

Upon acceptance into the program, patients complete a brief pre-consultation survey and authorize release of their CLL medical records to be summarized for the consulting physician to be ready to discuss during the 30-minute consult. In preparation, the patient will receive help formulating their most important concerns to discuss with the CLL expert. At completion, patients are asked to fill out a brief post consultation survey. You will also receive a summary of the consultation written by the CLL Expert, which can be shared with your treating physician and to keep for your own records.

In our recent survey of Expert Access™ participants, 99 percent of respondents indicated that they would recommend the service to other patients, and 74 percent were planning to implement at least one change following completion of the program.

In a testimonial sent to CLL Society, an exuberant participant stated, “I went from fatalistic to hopeful in 30 minutes!” If you are in need of a no-cost second opinion on your CLL journey, please apply to CLL Society’s Expert Access™ Program today at https://cllsociety.org/cll-society-expert-access/

Stay strong.

We are all in this together!

 

Categories: Leukemia
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