ASH 2013: Jan Geissler & Giora Sharf Part 2 on Adherence, the High Cost of Cancer Medications, and the Importance of Clear Communication

In the second part of my interviews from ASH 2013 with two smart patient advocates in the CML world, Jan Geissler and Giora Sharf reveal the results of their important study done in conjunction with their non-profit umbrella organization, The CML Advocates Network.

Before I get too far into my analysis of the results, let me first applaud Giora and Jan for doing all the hard work in making this possible.

Not only did they recognize an unmet need, they realized that their opinions would only be respected with valid research backing them up.

Then they had to not only design, develop, and ultimately score, review, interpret, write-up and present the data, they first had to procure the funding, find the doctors willing to help, and have developed over years a strong participating network of patients ready to jump in and help.

As someone in the throes of establishing a new CLL-focused non-profit organization, let me assure you, none of this comes easily. It was earned with hard work and trust.

More news soon on how this nascent disease specific non-profit will benefit anyone touched by CLL in very focused, local, unique and practical ways while not recapitulating what is already being done so well by the LLS and LRF, two great organizations that supply excellent background disease information and much more and also provide high quality large group meetings with top flight reviews of the basics in CLL in their breakout sessions. Here is my report from the last LRF meeting. I was also privileged to be asked to volunteer to speak on self advocacy this past weekend at the LLS Blood Cancer Conference in Los Angeles. I plan to share those slides I developed here and on the LLS web site soon.

Our new non-profit will be working with smaller interactive groups and be strongly focused on the cutting edge of research. More to come. I am so excited. This will make a high difference.

But I digress.

If you haven't seen the first part of the interview or you just want to revisit it, please click here.

If you want to read their fine paper, please click here.

The first few minutes of this section of the ASH 2013 interview identifies some of the high risk markers for skipping our medications.

Later we discuss the issue of the high cost of the medication. Not surprising this is a well recognized risk. Should I eat or take my pills?  For more on this important issue, browse through my blog and take a look at this paper on cost of oral medications and adherence in CML.

Many pharmaceutical companies (see the You & I Access program as an example for ibrutinib) have generous program to help defer the cost. The LLS can be a big help, but properly constructed, well conceived, and revenue neutral oral parity laws (where the percentage of the cost borne by the patient for oral drugs and IV drugs is similar) are not only possible but are desperately needed to avoid all these welcomed but ultimately stopgap measures.

Finally, as Jan says: "Adherence is partnership." The patients, the doctors, and the patient groups getting the word out about the importance of clear communication and understandings.

Ultimately good communication is the most critical and fortunately the most malleable piece of the puzzle.

Here is the video:

Please pardon the abrupt finish. You didn't miss anything but a technical glitch.

More soon from ASH, more on adherence, and more about the new non-profit to help those of us with CLL with better support and communication.

ASH 2013: Giora Sharf and Jan Geissler Discuss Mediation Adherence or “Drugs don’t work in patients who don’t take them.” – C. Everett Koop

I am introducing a new subject, namely the importance of taking our medications as prescribed.

What we call this simple behavior has been undergoing some changes as we have shifted from the more paternal old school term of "compliance" to the newer shared decision making model inherent in the recently most popular term "adherence". 

I  wrote an entire article on this important semantic issue a few years ago and will be updating it here as there has been further evolution in this topic of what these world imply about our world view.

I plan to spend some time on this subject over the next few months because it becoming increasingly important to all of us with CLL, in fact to any of us with any chronic disease.

This is especially true in the cancer world and there is much we can learn from the poster child of game changing targeted therapy where you simply swallow with a glass of water, imatinib or Gleevec, and poof….your cancer is no longer an issue.

It is hard to exaggerate the importance of the development of imatinib. For CML (chronic myelogenous leukemia) patients it changed a former life ending cancer (unless you had a successful but very risky bone marrow transplant) to a chronic disease controlled with taking a pill. The development strategy involved also fundamentally changed forever how all cancer could ideally be controlled.

Ibrutinib and idelalisib and all the new oral meds or TKIs are products of the process that was first so successfully deployed with Gleevec. First understand the biology of the cancer, figure out what is uniquely driving the malignant cells and then block it and try to block little or nothing else.

Targeted therapy.

The Pulitzer Prize winning book, The Emperor of All Maladies by Siddhartha Mukherjee is must reading for anyone dealing with cancer, and much of it is about the history of imatinib.

But even a wonder drug doesn't work if we don't take it. 

30% of CML patients are not taking their life saving medications, and that is the leading cause of developing resistance to therapy.

So please listen to what my friends from the CML world have to say about adherence from ASH 2013.

Giora Sharf and Jan Geissler are not physicians but CML patients turned advocates and researchers  who presented important research at ASH about why people don't take the pills that are saving their lives.

Here is part 1.

More on this and other news from ASH soon.

Pills, Pills and More Pills: A Serious and Sometimes Humorous Look at Adherence

I have blogged extensively on the serious problem with adherence with oral cancer medications in past posts. Check out my interviews from ASH 2013 if you haven't seen them before.

Pills don't work if we don't take them.

Many factors play into how faithful we are about following our doctors' and pharmacists' orders.

Let me get personal.

I need to take way too many medications. And with way too many twists and turns in how they are taken.

It is so bad that when I travel, I carry a note from my doctor so I don't get stopped by security for all the pills and potions, many of which are unlabeled including the precious unmarked grey capsules that form my trial supply of ibrutinib.

How many pills do I take?

I take so many pills that I could skip breakfast and still have a full stomach.

How many pills do I take?

I take so many that the pharmacy asks me if want help carrying my prescriptions to the car.

How many pills do I take?

I take so many pills that I could reproduce a decent pointillist copy of Seurat's A Sunday Afternoon on the Island of LA Grande Jatte with a week's worth of the medicine in my bathroom.

OK, I am exaggerating, but you get the idea.

My carry on is mostly drugs, both my regular daily doses and my "just in case" meds.

Let's start with the "emergency" meds first.

I always travel with Levaquin for respiratory infections, Cipro for all other bacterial infections, and Tamiflu for influenza. These are like my talismans used to ward away the very infections they are designed to prevent. I cling to the magical thinking that if I bring them, they won't be needed, and if I don't, then watch out.

The magic has worked so far. My same old box of Tamiflu has been irradiated by airport security around the world 100s of times by now.

I may bring ginger and meclizine for nausea and also Imodium and Culturelle (a probiotic) for diarrhea when I travel to exotic lands, topical voltaren, arthritis-acetaminophen, Celebrex, and a few very old stronger pain pills just in case. Over the counter Pepogest (peppermint oil) is my go to for most GI issues.

I don't bring anything for sleep or anxiety. I am lucky that way.

I do bring herbal teas with mullein, slippery elm, and marshmallow root in case I get a sore throat or hoarse voice when I am scheduled to speak.

I pack several cold and allergy remedies too for my longer trips out of the country. Otherwise I can just buy them as needed.

I bring a whole different list of meds for my wife when she travels with me.

My regular daily meds overflow their AM and PM plastic pouches. And when I travel more that 10 days, I need large two pill cases. And I always take at least three extra days of everything.

Getting my meds ready for travel is a more time consuming, exacting and high stakes chore than packing my clothes or my paperwork.

At home or on the road, the daily routine is killer too. I am thankful that I don't take any mid day meds, but in the morning I have ibrutinib 1/2 hour before eating or taking all my other meds. Those include one that I must remember to take only three times a week and one sublingual that I wait to dissolve under my tongue just once a week, and finally one where my dose is variable depending on my activities that day. One must be taken daily after  the same meal daily. One is pill is cut in half and another one in quarters. This all takes a ton of time.

The cyclosporin that is a twice daily medication comes in a bulky thick foil individual wrapper that defies my feeble fingernails in their bumbling attempts to open the packaging, so I often need to cut out each individual capsule. But scissors are a no no in carry-on, so I always bring extra cyclosporin when I am on the road (or in the air)  in case I can't open some of the packets. And what's worse is that me being a vegan and having to gulp down so many capsules made with gelatin, an animal protein obtained by boiling skin, tendons, ligaments, and/or bones with water. 

I don't want to even think about it.

Another complication is that a couple of my regular supplements must live in the fridge. They get forgotten the most. (Left out in the cold)

Another is a tart and fizzy powder that is mixed with first hot water and then cold water, twice a day.

I haven't mentioned all the topical creams my dermatologist wants me to use and the ophthalmic ointment needed nightly to prevent painful corneal abrasions that I self apply with a mirror and a flashlight and that effectively blinds me throughout the whole night.

Until the parade of pills starts all over the next day.

We can understand why oncologist like infusions. They can be sure that the precious medication is delivered.

Still, I am grateful that these oral and self administered medications exist, that I have the insurance and resources to afford them, and the freedom and health to complain about the whole twice daily rigamarole.

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