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

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.

What Does a CLL Patient and Advocate have in Common with a Diabetes or HIV or RA or Psoriasis Advocate: Plenty

  

What do patients with HIV or aggressive autoimmune arthritis or inflammatory bowel disease or diabetes or cancer or mental illness or psoriasis have in common other than a difficult time with a chronic disease?

Turns out quite a lot if they are also patient advocates.

I have just returned from the 2^nd HealtheVoices Conference where 90 plus online patient advocates from around the world and representing a wide range of patient communities met to learn from each other and share best practices and common challenges.

The conference was a chance to reconnect with other e-advocates, meet new friends, and get out of my CLL (chronic lymphocytic leukemia) silo. I am deeply grateful to Janssen and Everyday Health for their sponsorship of the gathering. 

What follows is a few reflections formed from the conference and my life online for the last 8 years.

Patient advocates tend to be found in chronic diseases.

Although many acute illnesses may be treated sub-optimally and there can be controversy in terms of what is the best therapy, most of us either simply recover from our short-term illness or it is our terminal event. Either way, we are usually no longer involved in advocacy because we have moved on, be it from not worrying very much about a disease we can only see in the rearview mirror or from having departed this mortal coil altogether.

In one case we don’t care, in the other it’s too late.

This is no joke.

As a lighthearted example of the first circumstance, I can find no advocacy organizations or bloggers dedicated to lightening the load of the sufferers of an acute and painful sore throat. Sure, we can get plenty of advice online about symptom control for our pharyngitis and we can read guidelines about when to and not to use an antibiotic, but generally the issue is moot in about a week and half. There is simply not enough sick time to generate any sustained long-term passion.

The bigger and much darker issue is that advocacy organizations are usually filled with patients who suffer from the diseases themselves. Sadly, we patient advocates can and do get sick and die. Hence much of the advocacy work in the diseases that too often offer a short leash such as pancreatic or brain or esophageal cancers is either not by the handful of the brave survivors who beat the odds or by surrogates for the cancer fighters such as family and caregivers touched by the disease. Just as history is written by the winners, advocacy is done by the survivors. As a result, the diseases with the worst prognoses often have the fewest online resources. 

We are luckier. The first thing most patient advocates with HIV or diabetes or CLL usually have in common is time: time to consider options and shop doctors and therapies. Please check out the CLL Society’s short welcome video on that topic and more found in the bottom right corner of our opening page.

Many of us will do our doctor and treatment shopping online, so we look to reviews of other authentic health care consumer that have “purchased” the therapies that we are now considering. Patient advocates with a deep social media reach will jump to near to top of our search lists.

Another thing we usually share is being confronted with many choices. There are a dozen possible treatment options for rheumatoid arthritis (RA), but none without its side effects and risks. There are a myriad of ways to control diabetes. Not one approach is clearly best for all. Care for all CLL patients should be individualized based on a huge web of personal and disease state factors. What flavor of RA or diabetes or CLL do you have?

We ask our doctors to throw out the cookbook approach to care and treat the person in front of them. 

One size does not fit all.

The same holds true for most every chronic disease. We advocates want to get out the information to our fellow patients to support their decisions. We can provide real life and sometimes real time practical tips and handholding when needed.

And once decisions are made, we fight to make sure that everyone has access to their best options.

We advocates all work hard to provide some combination of support and information and practical experience and finally access to the best personalized therapies.

And we are all subject to the reality that we have limits. We can get tired. We can get sick. We can get overwhelmed.

Another thing we patient advocates share is the risk of burn out or compassion fatigue. This is hard work, relentless work, often unpaid or under paid, where the demand always exceeds the supply.

No wonder sessions on compassion fatigue are the highest rated at bloggers’ conferences such as the 2^nd HealtheVoices Conference.

Ultimately, we are united by our drive to help, to make a difference in our fellow patients’ lives.

So we patients who are patient advocates do indeed have much in common.

Stay strong.

We are all in this together.

Brian

Volunteer Medical Director

http://cllsociety.org

Founder

http://bkoffman.blogspot.com

Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

HealtheVoices: A Blogging and Social Media Patient Advocates' Summit this April in Chicago

HealtheVoices 2016 is a great idea and a super opportunity for anyone wanting to share best practices and needing to learn that we are not alone in our struggles to build an online patient community.

What is it is a summit that mixes together established online superstars and passionate health advocates and new learners in the digital domain.

What we all have in common is a passion to advocate for our fellow patients and caregivers, a willingness to share, and an openness to learning.

Last year there were folks there from the HIV and cancer and arthritis and colitis and diabetes and psychiatric worlds, all using the internet as a tool for education and support. While it is mostly young advocates, all ages are represented. I learnt so much and made many new friends.

Here's a video from last year's event:

HealtheVoices Revised 2015 Highlights Reel 2.2.16 from Tonic Life Communications on Vimeo.

If you look carefully, you might see me and catch my name in the credits.

This year the conference will be in Chicago April 15-17.

So if you share  my need to help other patients on the world wide web through your blog or Twitter of Facebook or wherever, please consider applying.

The link to apply and learn more is here.

See you there.

Brian

Patient Advocacy in Clinical Trials in CLL (chronic lymphocytic leukemia)

Friends,

Today on the CLL Society website, we share an interview with Laura Cleveland, a CLL patient whom I interviewed at the CLL Society and Leukemia and Lymphoma Society sponsored patient dinner held the night before the CRC (CLL Research Consortium) patient forum in San Diego in April 2015. We discussed the role of patient advocacy in clinical trials for CLL. Please take a look here to see the interview.

 

Although it is 5 weeks away, we're busy filling our schedule with meetings with other CLL and Lymphoma organizations, reviewing abstracts and scheduling interviews at the American Society of Hematology Annual Meeting in Orlando. Simultaneously, we are putting together the next issue of The CLL Tribune, due out after ASH. If you haven't had a chance to peruse the first issue, you can access it here.

 

If you have questions you like addressed in future newsletters, OR would be willing to answer 5 questions in our Reader Poll about the CLL Society website, OR would be interested in writing an article for future newsletters, please go to the Ask & Tell section. Our goal is to fulfill the unmet needs of the CLL community, so we always welcome your feedback and questions.

 

SAVE THE DATE: If you live in the Los Angeles area, please consider attending a post-ASH patient education forum and CLL Society LA support group launch in conjunction with City of Hope scheduled for Saturday, Dec. 12, 2015. A flyer with more details will be posted in the next week or 2.

 

Finally, if you are receiving this email through a CLL Society Alert, you are all set. If you are receiving this through another method and haven't already, please sign up here. Also, please forward this email to a fellow patient or caregiver who might benefit from knowing more about CLL.

 

Another reason to make sure all the folks that might be helped sign on is that we will be posting a backlog of great lectures and interviews and articles on CLL over the next few months leading up to ASH and this alert is your best friend in knowing what new material we have posted.

 

Stay strong.

We are all this together

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com

Phase 1 Trials and My Advice on How to Survive and Be Your Own Best Advocate with CLL (chronic lymphocytic leukemia)

 Friends,

This week we have published helpful information from two patients on the CLL Society website.

The first is a thoughtful well-referenced editorial by Cynthia Havstad on the personal value of enrolling in a Phase 1 trial

Cynthia recently enrolled in a trial of a novel antibody directed against ROR1. This promising and very specific target is the culmination of decades of works by Dr. Kipps and his team at UCSD. For the background on why therapies directed against ROR1 are so exciting and details the trial, click here to watch my interview with Dr. Kipps. The link to the actual trial is found here.

To read Cynthia's helpful own story about her experience in considering a trial so early in a new drug's development and her actual experience please click here.

Without researchers such as Dr. Kipps and brave and smart patients such as Cynthia, we would not be making the amazing progress that we are in treating CLL.

The second patient we present this week is yours truly sharing my full 24 minute video from the CRC 2015 conference. My topic was pretty fundamental: Being our Own Advocate and Staying Alive with CLL (chronic lymphocytic leukemia).

It's a dense presentation.

First I briefly share my own 10-year history with CLL.

Self advocacy's risk (yes there are risks) and benefits are outlined.

Next I catalogue my advice in term of my personal three steps for mindful survival.

1. PREPARE
2. ACT 
3. BE AWARE

I tried to keep my counsel very practical and even a little fun, sharing my survival tips learned over my 10 years of struggles with an aggressive brand of CLL.

Some of these are broad overarching principles of dealing with a catastrophic illness, and some are very focused suggestions on getting the most out of a doctor's visit or a phone call with our insurance.

They include:

• Put together your team (this is number one)
• Become or find an expert.
• Think laterally.
• You always have time to make a decision, but you don't have forever.
• Risk is impossible to eliminate.
• You have to make decisions with imperfect and contradictory advice.

Lots more but it would be best if you can set aside 24 minutes and perhaps have a pad and paper handy.

The link to my video lecture is here. 

Enjoy.

Please, please, please if you have your own survival and advocacy tips, share them with us at the CLL Society Community using http://cllsociety.org/contact-us/

We welcome your feedback.

As always, all our content is free with no requirement to sign in, but if you want to receive alerts about what's new so you don't miss any important fresh content, please sign up at http://cllsociety.org/newsletter-sign-up/

Thanks

Stay strong

We are all in this together.

Brian Koffman

Volunteer Medical Director of the CLL Society