Best Personalized Care™ in CLL (Chronic Lymphocytic Leukemia)

I was asked to write one page about how our nonprofit CLL Society helped patients overcome friction points in their care. Here is what I came up with it.

The nonprofit CLL Society Inc. (CLLS) is dedicated to ensuring that all patients with Chronic Lymphocytic Leukemia (CLL), the most common adult blood cancer, get their Best Personalized Care (BPC™).

BPC is vital because CLL is in fact many diseases, ranging from a lazy or indolent cancer that doesn’t shorten a patient’s life, to a well-behaved leukemia that responds obediently to treatment, and most menacingly, to a constantly mutating disorder that quickly destroys immunity and then kills.

Each unique case of CLL demands a different therapeutic approach.

Adding to this complexity is the rapidly changing therapeutic landscape with the multiple recent drug approvals, new guidelines, exciting clinical trials, and the heterogeneity of patients. CLLS understands how difficult it can be for each patient to get the BPC.

We have developed tools to help overcome common friction points in accessing the best care:

1.     Comprehensive current information: There is a lack of up-to-date knowledge in the medical and patient community. Despite being the most common blood cancer, it is still an orphan disease. Annually for each case of CLL, there are approximately 14 new breast cancer patients and 25 survivors and 14 new prostate cancer patients and 24 survivors. Busy community oncologists simply can’t keep up with the evolving and complex nuances of individualized care for the rare CLL patient.

2.     Expert contacts: Referral to true CLL experts for 2^nd opinions and access to clinical trials can be difficult as physician networks are increasingly being narrowed. We provide links to top CLL doctors and help manage referrals.

3.     Insurance help and resources: Payors’ decisions may seem arbitrary and more determined by financial rather than clinical concerns. The appeal process demands a well-informed patient or advocate. We support patients and provide research and resources for their appeals.

4.     Self-advocacy tools: The best medications may be expensive, tricky to administer, and often need to be used very long term. Thus, their use may be subtly discouraged or not even offered by health plans and providers. Prior authorizations and tiered pharmaceutical benefits are further obstacles to best care. We provide information to help patients push for BPC and links to financial help.

5.     Compliance aids: New oral therapies put a premium on the patient’s adherence, persistence and understanding of how their medications work, effectively transferring responsibility from the provider to the patient who may need tools to help get the most out of their treatment. We have compliance tools to help track meds and labs.

The CLL Society, a patient driven, physician curated 501(c)3, is dedicated to the unmet needs of the CLL community. BPC for all is possible when patients are aware and active in their care because we believe that:

Smart Patients Get Smart Care™

Patient Advocacy in CLL (chronic lymphocytic leukemia)

Friends,

This past weekend I was in Paris representing the US (and Canada) for the planning meeting for the CLL Advocacy Network (CLLAN) that is being organized in Europe with a global reach. Our first meeting for CLL advocate organizations will be in Belgrade, Serbia in November. If you are an advocate and are interested, please contact me.

We were honored to have the mentorship of both Giora Sharf who together formed the non-profit organizations, The CML Advocates Network and the Leukemia Patient Advocacy Foundation and also Nick York of CLLSA, the UK based CLL Support Association. Their presence helped provide an experienced-based foundation for this new CLL advocacy organization. 

You can see my past interview with Giora and Jan Geissler, another one of the founders of CML Advocates Network and who is also heavily involved with EUPATI or European Patients‘ Academy on Therapeutic Innovation. They discuss their studies on medication adherence in CML, a topic that will have increasing relevance in CLL. Part 1 is here and part 2 is here.

This week in the Living Well with CLL/Support section of the CLL Society website, we’ve posted an interview with Sharon Millman, the CEO of another non-profit organization, Lymphoma Australia, located in Brisbane. The CLL Society partnered with them to host a patient/caregiver program prior to the iwCLL meeting in September 2015. You can read about their organization and watch my interview with Sharon here. Please excuse the video snafu towards the end of the interview where Sharon is slightly out of the frame.

THANK YOU AGAIN TO OUR READER POLL PARTICIPANTS! Data analysis is in progress and we are really excited with the preliminary results. We really appreciate the time you spent to contribute to our research and look forward to sharing the data in the future.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

What about Duvelisib for CLL (chronic lymphocytic leukemia)?

Friends,

This week in the Beyond the Basics/Treatment section of our website, we’ve posted an article about another treatment under investigation called IPI-145 or duvelisib, a PI3 kinase inhibitor. You can read about how it works, the data that has been released and ongoing clinical trials here. [http://cllsociety.org/2016/05/ipi-145-duvelisib-cll/]

In other news, the FDA expanded the Imbruvica^® (ibrutinib) label to include overall survival data in previously untreated CLL and added a new indication for small lymphocytic lymphoma (SLL) patients. Read more about it in our News section here. [http://cllsociety.org/2016/05/fda-expands-imbruvica-label-include-os-data-plus-new-indication-sll/]

THANK YOU AGAIN TO OUR READER POLL PARTICIPANTS! Data analysis is in progress and we are really excited with the preliminary results. We really appreciate the time you spent to contribute to our research and look forward to sharing the data in the future.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

A Therapeutic Escape For Cancer Advocates

Miraval, Arizona, home to the ESCAPE Conference August 14-17, 2016

This is a super conference run by friends of mine from Bag It, a wonderful nonprofit, in an amazing setting of beauty and tranquility and challenge for those doing cancer advocacy. Check out http://escape4advocates.org I was lucky to go twice, but will miss it this year.

Here are some questions to help you decide about attending from their home page.

Is escape right for you? Are you…

• On the front lines of cancer advocacy as a professional or volunteer survivorship advocate?
• Affiliated with a nonprofit cancer organization?
• A patient educator, navigator, social worker, blogger, research reviewer, community outreach/support group leader or engaged in other advocacy work?
• Seeking to gain productive collaborations and powerful partnerships with fellow cancer advocates, industry representatives and other stakeholders?
• Wanting to know more about how to effect change in public policy on a local, regional, and national level?
• Looking for ways to combat compassion fatigue and prevent burnout?

Let me add a few more.

• Want to stay in a setting where there are no cell phones allowed in the public spaces, no tipping, great food and fresh juices (all included with the cost of your stay), amazing landscapes, incredible classes, world class spa treatments, saunas, pools and much more, and most importantly a 3 day meeting with inspiring and powerful folks to learn from and to share your cancer advocacy journey. 
• Check out the agenda here. These are all great speakers. 
• This is being held at Oprah's favorite spa: Miraval! Do I need to say more?

Wish I could go again, but if you do go, let me know about your experience.

Music or at least the blues after a CLL (chronic lymphocytic leukemia) diagnosis

Friends,

We are doing something entirely different- a feel good musical story of triumph after diagnosis and treatment.

This week in the Living Well with CLL/Taking Charge section of our website, we’ve posted an article highlighting a Canadian CLL patient living in Nova Scotia, Derek Caine, (aka Little Derek) who despite his diagnosis, expanded his world to include music and composition. You can read more about his story and listen to his musical endeavors here.

There are some great learning opportunities coming up:

NEW – May 19th WEBCAST at 1:00 PM EDT: Hosted by the Leukemia and Lymphoma Society, this 90 minute webcast on CLL will cover the latest information on CLL. Dr. Susan O’Brien from University of California, Irvine is the speaker and she will do a super job. Find out more information and register here.

May 14th at 9:30 AM in New York City, NY: Living Well With CLL is an educational conference in Manhattan hosted by Patient Power. You can find out more information and register here.There is no charge to attend.

May 21st at 7:30 AM in Needham, MA: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options will be hosted by the Lymphoma Research Foundation. You can find out more information and register here. There is no charge to attend.

June 16th at 6 PM in Salt Lake City, UT: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here.There is no charge to attend.

In early June, I am off to EHA and honored to be speaking in front off the European hematology community, sharing the stage with Drs. Jeff Jones and Paulo Ghia and Stefan Stilgenbauer on the topic: The evolution of CLL management – is it time to re-evaluate our approach? I am bringing our small crew and will report the latest news.

In the meantime….

Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
http://cllsociety.org
http://bkoffman.blogspot.com

U.S. Rep. Mark DeSaulnier Shares that he has CLL (chronic Lymphocytic Leukemia)

Good for him.

The rookie Democratic Congressman Mark DeSaulnier who represents the Bay area of Walnut Creek and Richmond (very near where my oldest daughter and oldest two granddaughters live) announced yesterday that he has been diagnosed, treated and is a deep remission with his CLL.

Let's read his own words from the press release on his official website: https://desaulnier.house.gov

"Before sharing my diagnosis, I had much to consider personally and professionally. My doctors assured me that people with CLL, myself included, could continue to work and function at a high level. The medical professionals were right; I have been able to go home every weekend, except one, logging over 170,000 miles flown, held 14 town halls, had meetings with thousands of constituents, and maintained a 99.1% voting average in my first session of Congress.

By publicly sharing my story, I hope to add my voice to the growing number of people fighting cancer and the other chronic conditions so many families confront. I look forward to continuing to serve the people of our district, and do so stronger and with a better understanding having faced this experience."

I couldn't agree more. 

Being a Congressman is a very public job. Lots of potential "germ" risks from all the handshaking and community meals and more. He is on a plane even more than I am. And what a demanding schedule!

And still he and his doctors say it's all OK.

Here is a link to the LA Times story.

Diagnosed last July, his CLL already required therapy and he has done well with his cancer knocked way back.

Compare this to the secrecy of jazz and funk great George Duke or actress Jill Clayborn where the diagnosis was only revealed to the public after their deaths. Readers of this blog and members of the CLL Society support groups have shared many strong opinions and had poignant and heartfelt discussions on the subject of whether "to tell or not to tell" here and in our live group meetings.

I respect and fully support my friends who choose to stay quiet for a myriad of good reasons, but I must admit I am thrilled when a public figure shares his diagnosis in the hopes of helping others.

Many of us have seen our world grow bigger and our purpose become clearer after sharing our diagnosis. Our welcome video in the bottom right corner of our home page reminds me of this constantly.

Thank you Congressman DeSaulnier for your brave and helpful disclosure. I wish you  a long and healthy life.

CC-122, a new IMID or immuno-modulator in trials for CLL (chronic lymphocytic leukemia)

Stairs to the beach at Torrey Pines State Park

Hi friends,

This week in the Beyond the Basics/Treatment section of our website, we’ve posted an article about some ongoing promising immunological research in CLL with the agent CC-122. While much of the recent excitement, for very good reasons, has been about the new class of drugs that block the B-cell receptor such as ibrutinib and idelalisib, or the fresh approval of venetoclax that inhibits BCL-2 leading to programmed cell death, there is still a need for more and Celgene has led the way with a different and important approach, namely drugs that tweak our disrupted immune system such as lenalidomide and now CC-122. You can read my commentary and read about the research that is ongoing here. 

I suspect immune therapies will be needed to seal the deal for many of us. Now that research with lenalidomide in CLL is slowing down, trials with CC-122 may be part of our future.

The full article and the alert with news of some upcoming patient meetings is on the website.

Stay strong.

We are all in this together.

Brian